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Need some advice from my foot friends

Posted by wendyn on 2/13/05 at 12:35 (168976)

I'm wondering if you folks would give me your objective opinions on my dilemma....

Some of you may recall that I have a long history of unexplained pain, lumps, neuropathy, swelling, and biomechanical issues in my lower back, legs, and feet.

Despite numerous bone scans, xrays, blood tests, visual exams, and an MRI - none of my doctors know what's wrong with me. Maybe it's RSD, maybe it's Rheumatoid arthritis, maybe it's an underlying inflammatory condition that they can't find, maybe it's idiopathic neuropathy.

Regardless of what it may be, it is highly unlikely that I can be fixed. All the medical professionals agree on this one point.

I accept this, and I've come to terms with it. I have pain and limitations (some days more than others) but by and large, I have an excellent quality of life and I'm in exceptionally good health (mentally and physically).

My doctors are frustrated that they can't put a name on my problem. My rheumatologist asked me to go for an MRI on my feet, and since there is no risk to this procedure anyway - I agreed.

I found out today that the radiologist wants to do two separate MRI's (on two separate days) with contrast dye. Although the risk is not huge, there is risk. I told the nurse that I will want to talk over the risks versus benefits with the radiologist, but that it's highly unlikely I will agree to the dye.

This is my conundrum. I can't think of any reason to agree to a potentially risky procedure. Regardless of what they find on the MRI, it's extremely unlikely that I can be 'fixed'. There won't be a magic bullet like a pill or a simple surgical procedure that can make this all go away.

At 'best' I think I might have a name for my condition. Names and labels also often carry a prognosis which will likely not be good. Is there any benefit to knowing for sure that your condition will deteriorate over the years? Personally, I would rather believe that my future is not cast in stone.

After 20 years of this, I'd like to think that I am obliged to do whatever I can to protect my health and quality of life, especially since conventional medicine has never provided me with any answers or helpful treatments.

What would you do? Am I being an uncooperative patient, or am I being a rational individual who is logically working through risks versus benefits?

I'd sure appreciate any thoughts you have on this!

Re: Need some advice from my foot friends

Kathy G on 2/13/05 at 13:10 (168977)

Wendy,

I most definitely would not agree to any tests that have any risk involved! You are not being an uncooperative patient; you're being an intelligent person.

All of the doctors have agreed that they don't know what's wrong with you. You have good days and bad days but you've quite admirably learned to cope with your ups and downs with patience and humor. You say your overall health and quality of life is excellent. What more can one ask for?

It's unfortunate and frustrating that they can't come up with a specific diagnosis for your condition but that seems to be more their problem than yours. And as you say, there is nothing to be gained by giving a name to a condition that might carry a negative prognosis, a prognosis that could actually be wrong. Why worry about something that may not happen? Doctors are often wrong when they predict the future of an illness because no one knows how one person's body is going to respond. Two years ago, one doctor told me that I would be begging for hand surgery at this point in my life and he was wrong. I dismissed his warning and was able to put it out of my mind, but his words were certainly unwarranted.

Go with your instincts. You're a bright, educated woman and you are on the right track! :)

Re: Need some advice from my foot friends

Suzanne D. on 2/13/05 at 13:37 (168980)

I agree with Kathy: you are intelligent and informed, and I certainly do not think you are reacting as an uncooperative patient in this situation.

You stated, 'I can't think of any reason to agree to a potentially risky procedure'. I really can't either, Wendy. If by doing so you would help yourself in some way, it might be worth considering. But under the circumstances, I can't see it helping. And, who knows, perhaps injecting the dye could set off a chain of unpleasant reactions - particularly if you are dealing with RSD as you have been told you might have in the past.

I'd go with my gut instinct on this if I were you. If you receive additional information that changes the situation, then you can reconsider. You don't want to just be an interesting subject of study; if you can't be helped, then you don't want to risk being hurt.

Those are my feelings on the subject after reading your post. Best wishes to you as always!
Suzanne :)

Re: Need some advice from my foot friends

Ralph on 2/13/05 at 13:48 (168981)

I don't have your condition, but I've had plenty of MRI over the past several years. They were done for various reasons foot, back, head, eye, ear and kidney conditions.

Each and every time I had an MRI I've had dye used. I can tell you that I'm highly allergic to many things and was also concerned about using dye but I found out and you can check this out too, was that the dye used for MRI's is different than the one used for CAT scans or PVD's.

I believe they have more of a concern about reactions with CAT scan and definitely PVD dye than the one used during an MRI. This is not to say that it can't happen. I'm not a doctor, and I don't think anyone can predict if you'd have a reaction to the dye being used but I think they have a lot of confidence in the safety of this particular dye. They are also prepared if a reaction occurs.

During a CAT Scan, I remember the tech telling me that I would feel warm and like I had to urinate after the dye was injected and have a bad taste in my mouth. I felt the warmth pass down my body and a bit like I had to urinate, but had no bad taste. The sensation went away very quickly and the tech stayed in the room until he saw that I didn't have any reaction from the dye.

I never felt anything from the MRI dye accept the small poke when they put the needle in. The techs said I wouldn't feel anything because this dye is different than the CAT Scan dye.

Because of your concern, I'd make certain that you have the MRI is done in or near a hospital if at all possible. This way if by that slim chance you have some type of reaction to the dye they are set to react quickly although I think they are also ready for emergencies anywhere these tests are preformed.

It's my personal opinion that you will have more reaction to the MRI tube if you are claustrophobic than the dye. If they are doing your feet they will probably go in first and your head more than likely will not be inside the tube so you don't even have to worry about that. You also should know that an MRI staff member can stay in the room with you during the procedure and if it would make you feel better you should arrange for them to do that.

I think OPEN MRI units have made the MRI experience better for patients. They are certainly great for people who are claustrophobic. Some people may argue that the pictures are not that great, but if your neurologist or doctor doesn't have a problem with you using the Open MRI I'd go for it.

The last MRI ordered by my doctor was for my inner ears and optic nerves. It was done on two different days only because of the length of time I'd have to lay still. The entire procedure with dye for my eyes took over hour alone. The tech told me the machine is set up different for each area. I assumed they just started at my eyes and went down to the bottom of my ears. It doesn't happen that way. When I was done that day I was glad that my ears were going to be done the following day. I was pretty stiff after laying on that slight padded table for over an hr and not moving during that entire time.

I think asking questions to the techs at the MRI center that you will be using will be very helpful for you and give you more confidence in the safety of the procedure. I hoped my experience with MIR's and dye helps you in some small way and best of luck to you.

Re: Need some advice from my foot friends

Julie on 2/13/05 at 14:21 (168982)

Wendy

As you know, I had an MRI very recently on my spine. I had two. After the first, I was recalled for a second because they had spotted something and wanted to inject dye to get a clearer look. I had the second MRI with the dye and had no problem with it - and the scan pictures were much clearer: even I could see the foreign body that was lodged in my L2 nerve.

If you are going to have the MRI at all, have the dye. The 'risks' are practically non-existent; it goes straight through you after it has done its job and you pee it away the same day. The possibility of something that has not been noticed before being picked up is worth whatever minor side effect (which you are very unlikely to experience - apparently very few people do). Here's something I found on the medicinehealth website:

'Some MRI exams require an injection of an MRI contrast or dye. This MRI contrast or dye is very safe and is completely different from the contrast agent or dye used for imaging tests using x-rays, such as an intravenous pyelogram (IVP) or a CT scan. Allergic reactions to the contrast used are possible but extremely uncommon. The doctor and the MRI technologist should be informed beforehand of any allergies.'

Ralph has written you an excellent post. I agree with him that you shouldn't be worried about dye. Have it, and let's hope your MRI leads you to some enlightenment about your condition(s). It wouldn't necessarily be just a 'name' to put to it - it could lead to help.

That's my opinion.
.

Re: Further thoughts...

Julie on 2/13/05 at 14:36 (168983)

I always have them, don't I? :)

Wendy, you said:

'Names and labels also often carry a prognosis which will likely not be good. Is there any benefit to knowing for sure that your condition will deteriorate over the years? Personally, I would rather believe that my future is not cast in stone.'

The first sentence may or may not be true: i.e. you may get a diagnosis, but not necessarily a prognosis.

The second and third sentences are true only if you make them true by your response. Knowing you as well as I do for as long as I have, I truly believe you are the last person on earth to respond in this way to a diagnosis, or even a prognosis, whatever it was. You would see it as a challenge, and meet it with your usual realistic, intelligent forthrightness. Your future is NOT cast in stone and you will never believe that it is, or behave as though it is, whatever the MRI shows.

The decision you need to make is: do I want to 'know', or don't I? And I suspect (I hope you don't mind my probing like this) that here, and not in the dye business, is your issue.

'No, I don't want to know' is a valid decision, in which case don't have the MRI at all. You don't have to have it. Just be sure you've got the issue straight before you decide.

'Yes' is a valid answer too - you'd be saying that you want all the information you can get about what's going on with your body, because information can be empowering.

Whatever you decide, I and I'm sure everyone else here will support you in the decision.
.

Re: Need some advice from my foot friends

Ralph on 2/13/05 at 14:37 (168984)

Sorry I meant to say IVP dye not PVD. Julie's post reminded me that's the name. I had an IVP for my kidneys besides an MRI. I'd choose the MRI with dye before ever having another IVP. I think Julie is right on with her post.

Re: Need some advice from my foot friends

AmyM on 2/13/05 at 14:53 (168988)

My two cents worth, if you have RSD and the injection of the dye would make it worse then it's not worth it. On the other hand, if after 20 years you could get a diagnosis wouldn't that be worth it? Speaking from personal experience I've had foot pain due to some undefined neurological abnormality for 15 years, and I think I'm in a similar situation to you, life is fine, I know what I can and can't do but at the end of the day I'd still love a diagnosis. I'd like to have a name, to be able to tell people 'what's wrong'. I'm not saying I would run round telling everyone, very few people (apart from those I live with) even know I'm not 'normal'. If you did get a prognosis that your condition would get progressively worse, would that really suprise you? Don't you think you would just cope with it like you have for the past 20 years? Using all the strategies you've learned? I also think medicine has much to learn from the odd cases so from that point of view I've never minded being a guinea-pig. At the end of the day it's your call and I know it depends what else is going on in your life right now, but I wouldn't dismiss the opportunity out of hand just because there is a degree of risk involved. From what I've read of your posts on these forums, I don't think you'd 'go to pieces' if you got a negative diagnosis. Like I say, that's just my opinion, based on my personal experince, but good luck with whatever you decide.

Re: Need some advice from my foot friends

Dorothy on 2/13/05 at 15:27 (168990)

Wendy -

For me, the question of risk would certainly be part of the decision, but only one part. What would make me decide to take the risk is whether the 'risky' test would reveal something I want to know - for whatever reason - and whether the 'risky' test would lead to something that I want to pursue. I am a very curious person so I might pursue the test just to gather information. (Doctors I have known do not really suggest testing routinely, although I have had biopsies and various other procedures and surgeries over the years. My experience and that of people I know is that doctors we have had are very 'stingy' with any kind of testing, even the most basic and obvious - unless it is mammograms they do in their own offices or x-rays done in their own offices; they like those - profits are high. In the U.S. the 'system' is different, I think. I have several close friends who are doctors or who are married to doctors, also friends; they own airplanes, multiple homes, and lead lavish lives.....while many Americans are in deep medical trouble. I also worked in close collaboration with doctors of various stripes in my previously held profession, so you have to take anything I say with this grain of salt: I do not automatically trust the motives or good hearts of doctors at all - but I live here and you live there....)

I think your last two questions in your post can't really be answered by any one here; only you can answer them. I will say that I think the label of 'uncooperative patient' is not a constructive or useful one, but I know it is one that doctors and other professionals use to discount the concerns of a patient who is reluctant, for whatever reasons, to do what the doctor wants. The expression 'uncooperative patient' is demeaning to human beings who are of equal status, regardless of doctors' wishes for it to be regarded otherwise!

I think a patient's willingness to follow a doctor's recommendations should be tied to commitment to that patient's well-being and well-being encompasses trust, confidence, peace of mind, and a whole lot of other factors.... If you have doubts and you have time – and you do have time because you are apparently not dealing with concerns of an urgent nature – then maybe time will lead you to the comfort and confidence and willingness you do not have now. On the other hand, you can also say – in spite of not having those feelings of confidence about this procedure, I'm going to take a leap of faith and do it.

Will these tests contribute to any of the matters that have importance to you?? Will they rule anything in or out definitively? You seem to be saying that they will not, but why is the doctor recommending them? Now, having said that - I don't know how things work in Canada but in the U.S. doctors are extremely (to a fault, I think) reluctant to do any kind of tests because the 'health care' system is geared to one thing: increased profits through reduction in cost. So if a doctor wanted to do not one, but many and variable, MRIs here, that might give me pause; it might make me believe that there must be a valid reason. I share your concerns about having dye injected into the body but I know it's done routinely and most of us knowingly and unknowingly put all sorts of substances into our bodies that are probably bad ideas... You drink wine, you've probably had various dental procedures with chemical adjuncts, you've gone through childbirth and possibly some injections with that, etc….. Just trying to put this in some perspective related to your broader experience.

Many others here – Julie, Ralph, Suzanne D and probably others I have not yet had a chance to read – have given you excellent advice. I certainly can't add anything of wisdom or experience to what they've said – but I do tend to lean towards Suzanne's words of trusting your own gut instincts. I think they usually speak our own truth – plus, you can always change your mind if and when you feel better about doing it. I generally favor less not more medical intervention, but then again, 'my hero' Lance Armstrong had every major medical and chemical intervention known for the urgent and devastating problems he had. Even with the very dire PROGNOSIS that accompanied his DIAGNOSIS, he took some of that precious time to get second and maybe third opinions; that is to say, he was trusting his gut instincts about what he was being told. In the end, he made the plunge and had no regrets. Julie was in tremendous pain that was totally outside of the norm for her and she had medical diagnoses that needed clarification that would come from further testing. If that is true for you, then maybe that will guide your decision. I think Suzanne's caveat about RSD is worth considering; it is an added factor in any decision you might make about any medical intervention, I would think. Julie and Ralph have both given you valuable insights into the actual experience of MRIs with dye and, again, they are done routinely (I know - that is not necessarily mitigating enough to tilt the balance towards confidence, but it can inform one's decision...)

So, summing up – You have time. Nothing has really changed to prompt more invasive procedures. You can always change your mind. Trust your gut instincts. Your own experience is your own. The tests being recommended are pretty routine and have very low incidence of problem. You may or may not get answers you may or may not want. The old dictum 'if it ain't broke, don't fix it…' may apply.

Here is my question to you: if this were your husband or your children, what would YOU recommend to THEM?? That might also lead you to your best answer. I am not giving you specific advice because I am not qualified by profession or experience to do that, but I am offering some ways of thinking about it and of considering the components of your decision-making that might help. I hope so.

Best wishes to you, Wendy.

Re: Need some advice from my foot friends

Dorothy on 2/13/05 at 15:41 (168992)

Ralph - I just wanted to say that I learned a lot from your post. You should have some sort of award just for the eye MRI alone! That sounds very challenging. I know of three people just in the past two years who have been DXd w/cancer of the eye area. That's astonishing to me, since I've never heard of this before, and it has made me wonder if there is some environmental factor that is contributing. Their treatments were different as the cancers were slightly different, but both in the eye area. I don't know these people well and so wouldn't have asked any more about their diagnostic procedures, but they had MRIs. Now I can imagine what they were going through...
Just wanted to let you know that your informative and supportive post to Wendy had additional benefits to others - education.

Re: Need some advice from my foot friends

Carole C in NOLA on 2/13/05 at 15:46 (168993)

Wendy,

I think that you need to talk to the rheumatologist, to find out exactly why he or she wants to do an MRI. Ask how this will benefit you. Probe and ponder.

I wouldn't worry about the dye too much (after reading Julie's post). On the other hand, your time is worth something, and so is the money of the insurance company (or national health plan money in Canada, I suppose).

I don't think you are being a 'difficult patient' if you decide not to get it. If you find out exactly what the pro's and con's are and then make your decision, I feel certain that you will make the right choice!

Carole C

Re: Need some advice from my foot friends

marie on 2/13/05 at 16:40 (168998)

Take your time and think it through. You've had these bumps for 20 years..........a little more time to think and weigh the risk isn't going to make a big difference. Caution is ok.

marie

Re: Need some advice from my foot friends

wendyn on 2/13/05 at 17:10 (168999)

Thank you all so much! Holy cow, I didn't expect that many answers waiting for me this afternoon!

Ralph, I have had an MRI on my ankles. I think a tall person's head would have poked out the top of the tube, but mine is mostly in (I'm just under 5 foot 2). I'm not claustrophobic. I didn't like being in the tube, but it was more of an annoyance than anything, and it was very hard to lay still for so long (I'm a pretty fidgety person).

When I last spoke with my rheumatologist in November, she suggested the MRI, more xrays, and then a biopsy simply to see if they show anything at all that will help pinpoint a problem. She's really at a loss to explain what's happening to me. When we spoke, we even agreed that since there was no risk - there was no reason NOT to do it (of course, other than the cost to the health care system, but we both felt that after this many years - the cost is justified).

From my conversation with the nurse today (yes the MRI is done at the hospital) the referral for the test goes to a radiologist, and the radiologist determines what type of test to order. So, it's not my doctor asking for the dye - it's the radiologist (who I've never met).

The appointment is tomorrow, and I agreed to go up and talk to the radiologist. I guess what I need to understand is what the test will show with the dye versus what it will show without. If there is something super important that we may overlook withouth the dye, then I may have reason to reconsider. If not, and if it's more all being done out of curiousity - then forget it. Any risk to my health (however small) is just not worth it if it's not going to lead to real answers and possibly treatment.

For many years, I really wanted a name for what's wrong with me. I guess I'm just at the point now where it seems far more important to my doctors than it does to me. I realize that the dye itself may not be that risky, but one injection needs to be seen in conjunction with all of the xrays, the bone scan injections, and all of the other things that are being done to me. Thus far, none of those tests have provided any valuable information at all, and perhaps - it's time to say 'enough'.

My doctors haven't labelled me as uncooperative (at least not yet!), it's more me questioning my own motives and whether or not I'm thinking clearly.

If I agree to have the one foot done with the dye tomorrow, I have to go back and have the other foot done in a few days (with another dye injection). My doctor would also like a lower back MRI, which I'm guessing may mean more dye. Then I have the biopsies to decide on. Do I do them or not? When I spoke to the rheumatologist about whether or not it's really worth it - even she had a hard time believing that it will lead to anything other than at best - a diagnosis.

Thanks for all your thoughts. It certainly gives me a bunch of different things to consider while I'm actually supposed to be doing my homework.

You're all so important to have around - what a great support network!!

Re: Need some advice from my foot friends

Ralph on 2/13/05 at 17:52 (169002)

If you're in Canada then I guess referrals must work differently. My doctors have always written an RX for the medical tests they want done including all the MRI's I've had. Each doctor specified the area to be done and whether contract was to be used.

Of course I had the choice to say no I didn't want the contrast. That was up to me.

I hope your test goes well tomorrow and that you can report back with positive feedback at least from the contrast part of it.

It sounds like others here know you very well especially Julie. I was just hoping to eliminate a few of your fears with my post. Best of luck.

Re: Need some advice from my foot friends

Dr. Z on 2/13/05 at 17:55 (169003)

Hi

Here is a compromise that I think is very fair. Do one foot (the most painful) first. IF nothing go to the second foot. My question is what are they looking for. An MRI isn't a test to do to a general ruling out. It is a confirmation of what the doctor Thinks but is not 100 percent of what it may be. For example. Pain, lack of motion, edema, ok could be a tear of the posterior tendon. So lets see the exact degree and extent of the tear which with excellent palpation the doctor has the diagnosis.
If the doctor can palpation and replicate your doctor with examination he or she should be able to get a fair diagnosis

Re: Need some advice from my foot friends

Dr. Z on 2/13/05 at 17:58 (169004)

I want to add. NO dye yet

Re: Need some advice from my foot friends

wendyn on 2/13/05 at 19:00 (169009)

Your post was helpful Ralph, and I appreciate it. My husband has also had an IVP and CT scan - he is having another CT scan next week (ongoing kidney stone issue).

While my doctor specified the MRI and the area to be done, evidently the radiologist may or may not choose to use dye. Came as a big surprise to me too.

I'm sort of part of the furniture by now here I guess. Been about 6 years that I've been popping in - sometimes more regularly than others.

Very nice bunch of people here....and I often need them!

Re: Need some advice from my foot friends

wendyn on 2/13/05 at 19:06 (169010)

Thanks Dr. Z...they are not looking for any type of acute injury. This is a long-term chronic condition involving pain, color changes, some numbness and tingling, and 'lumps'. The lumps are similar in location to where you would find bunions (top of big toes, and side of baby toes) but they are made up of soft tissue and swelling. And, they are worse somedays than others. The doctors refer to them as rheumatoid nodules (I have similar nodules that surface periodically on my shins).

All blood tests for inflammatory conditions are negative.

So, the MRI really is a last ditch attempt to try to see if there is _anything_ at all that explains the lumps and the pain. The xrays, bone scans, blood work, and nerve conduction tests have never shown anything interesting. But, the doctors can see that there is something not right, and of course - I can feel it!

Re: Need some advice from my foot friends

Dr. Z on 2/13/05 at 19:58 (169013)

Are they treating you for Rhematoid Arthritis? I really don't see what the MRI is going to show. If any thing I would do the MRI without contrast and or biopsy. There should be treatments for RA that they can use to help you.
You could have RA and the color changes are a Raynaud's condition ( vascular changes assoicated with either RA or Lupus. ) The key is how to treat this. What are their recommendations.

Re: Need some advice from my foot friends

wendyn on 2/13/05 at 23:09 (169021)

No Dr. Z - they are not treating me for Rheumatoid arthritis. I had 17 different blood tests last summer for a variety of conditions (from sarcoidosis to lupus to spondyloarthoposomethings). All of them were negative.

No one knows how to treat what I have, because no one knows what it is.

I have been told that I probably have Raynaud's (probably in my hands and feet) and sometimes my feet turn bright red and hot (which at one point was diagnosed as RSD). Over the last 20plus years, I've probably seen half a dozen podiatrists, 3 orthapedic surgeons, 2 rheumatologists, 3 physiotherapists, 2 sports medicine specialists, 1 neurologist, and a partridge in a pear tree.

None of them agree with each other on what my problem is, but all of them have thought that there was some underlying inflammatory condition that they can't find.

It's is the combination of all of the symptoms that seems to cause most of the confusion.

I also have a long list of biomechanical problems.

I really think the MRI and the biopsies are simply because no one has a clue what else to do. The rheumatologist is hoping to find something that will give them a clue.

Re: Need some advice from my foot friends

Ralph on 2/14/05 at 09:14 (169030)

Wendyn,
In your post you mention that you've dealing with your condition for over 20 years? That's a lot. Has anyone ever done a biopsy on anything?

You mentioned Sarcoidosis. Over the years, you've probably talked to folks with confirmed cases of this condition on forums. Because it can affects so many different organs and various parts of the body and because there are typical, atypical or even rare forms of it, is it possible to confirm or rule out a diagnosis without a biopsy or have you had one to do this?

Re: Need some advice from my foot friends

John H on 2/14/05 at 09:55 (169033)

Over the years I have had several MRI's. Some have been with contrast and some not. There are at least two dyes they use. One is much more expensive than the other but you are much less likely to have a reaction from it. They typically go the less expensive dye first and I assume all ways ask you if you have had a reaction to dye. Some MRI's for particular procedures it is stantdard to use dye so the Doctor does not need to make such a request. Doing an MRI for a kidney stone they have an MRI kidney stone protocol. Having had a kidney stone I asked my Doctor what do people do who are in some remote region of the world. He said he had several patients who were foreign missionaires and he gave them some powerful pain meds to keep with them which hopefully would give them some relief until they could get to civilization. A kidney stone in a pilot will cause immediate grounding fore ever.

Re: Need some advice from my foot friends

John H on 2/14/05 at 10:00 (169034)

Wendy: My low back MRI's did involve dye. No big deal if you are not allergic to the dye. You are in the tube for 25 min or so and then they pull you out and inject the dye and push you back in. My advice to people who might feel confined is to close your eyes as your are going in the tube and never open them until the procedure is finished. Just think happy thoughts. Maybe like having a glass of wine with me on the streets of Pairs in the spring.

Re: Need some advice from my foot friends

John H on 2/14/05 at 10:10 (169036)

Dorothy: My wife has macular degeneration. She has had two cold laser treatments of the eye. The Doctor on the last visit advised her the FDA had just approved a new procedure for macular degeneration which consist of a shot of some sort in the eye every few weeks for two years! This procedures is no cure and does about the same thing as the cold laser. She passed on this. In 1969 I injured my eye when I was shot down in Vietnam. I went to a hospital south of Bankok for surgery. As I had to be able to move my eyes during surgery they had to use a local into the eye. Sounds worse than it was. My surgery was done in a medical theatre with all the doctors and nurses looking on from the balcony with me laying on my back looking back up at them as the Doctor did his thing. I was the star of the production.

Re: Need some advice from my foot friends

John H on 2/14/05 at 10:18 (169037)

Dorothy: you make some good points about test. Yesterday there was an article about the complete body scan which many hospitals are now offering for about $200. They are intended to find evidence of artery inflamation,etc. It noted a healthy 80 year old woman had such a procedure. They found she did have inflamation of the arteries. Of course in an 80 year old woman you would expect to find this. This led to more test one of which was dialating an artery. She died during the procedure. These test lead to many false positives and lead to many other test which may be unnecessary. The author (Doctor) thinks such procedures are unnecessary and dangerous. There are many test I think we all need such as a colonoscopy, blood test for things such as diabetes and cholesterol but there are some you do not need. It is up to us to stay informed and ask questions.

Re: Further thoughts...

John H on 2/14/05 at 10:23 (169038)

For some people not knowing is worse than knowing even if it is bad. The mind can conjure up some terrible things when in fact you may have nothing to worry about at all. If you are one that dwells on what you might have and it effects your way of life you might choose to find out what the problem might be. This will vary individual by individual.

Re: Need some advice from my foot friends

Julie on 2/14/05 at 11:35 (169044)

Good advice to keep your eyes closed, John.

Here's another MRI tip for anyone who might be having one. For my first MRI I was given headphones through which a medley of semi-classical music was played. I could still hear the banging and crashing of the magnets - the music just competed and clashed with it, and the total effect was confusing and disorientating and unpleasant. I thought happy thoughts. For the second MRI a few days later I accepted the headphones but refused the music. The banging on its own, dulled a bit by the headphones, was considerably less irritating than the combined banging and music.
.

Re: Need some advice from my foot friends

Carole C in NOLA on 2/14/05 at 12:24 (169047)

I had an MRI about 15 years ago (when they were pretty new in rural Texas, where I was).

I fought the claustrophobia by silently telling myself bedtime stories that my mother had told me when I was a little kid. The Three Little Pigs and Little Red Riding Hood make a good start. For me this was very soothing in a loud, scary, claustrophobic environment.

Carole C

Re: Need some advice from my foot friends

Ralph on 2/14/05 at 13:20 (169048)

You can also ask for ear plugs to use in combination with the headphones or alone. I prefer to use them in combination with headphones without the music too. Where I go they offer two different types of headphones. I use the one that covers the entire ear.

Like Julie I found the loudness of the music needed to over ride any of the banging noise is much worse than just hearing the noise itself. I think the music noise could damage hearing it's so loud and close to the eardrum.

I've also asked the they look into noise canceling headphones which if at all possible can be used with an MRI would greatly cut down on the noise.

They tell me MRI headphones are expensive because they are expensive, but they ar not as good as my noise cancelling Bose set.

Re: Need some advice from my foot friends

elliott on 2/14/05 at 22:16 (169064)

Wendyn, I'm a little late on this, but I think it's fair to weigh the probabilities: if the probability of the contrast really hurting you is very small as I suspect, then if the radiologist strongly recommends it for what it might reveal, I'd say do it. (I've had it three times--once for an MRI in my back and twice for a bone scan in my foot. I found it no big deal, except that, if I remember correctly, after getting the contrast for the bone scans, I had to leave for several hours and come back later that day, so logistically it was annoying. Stomach may feel a bit weird temporarily, but drinking a lot washes it out quickly.) OTOH, a very pertinent question for the radiologist would be does something like RSD, assuming you have it, increase your chances for something to go wrong, if so, how much, if not, how sure is he about that.

In reading your history, let me throw out some thoughts (as if I'm a doctor). Likely not rheumatoid arthritis due to the negative tests and that you don't have it in your hands. Sounds like it could be some type of spine disorder with nerve compression, and so the distal nerves get deprived of their nourishment, causing abnormalitites such as swelling especially in the peripheries, i.e., the feet. So I was wondering if you

1) had an MRI of your back, and if so, how long after symptoms started and what it showed.

2) saw a neurosurgeon (not neurologist) for an opinion; I don't see that kind of doc in your list.

3) had a nerve block in your back to observe your body's reaction

{}

Re: Need some advice from my foot friends

Julie on 2/15/05 at 03:15 (169072)

And Wendy (yet another post from me - why don't I read all the posts before putting fingers to keys?) I think that is a good suggestion from Elliott, and good questions. You were musing about sciatica the other day - and compression of the sciatic nerve can and does cause feet problems. This is a possibility, and I agree that a neurosurgeon rather than a neurologist is a good bet for a consultation. Your GP can order an MRI of your spine, which is all a neurologist would do (plus stick pins in you). A neurosurgeon would have a better idea of what, if anything, can be done.)

But maybe all this is for a little later: I know you're sick of the whole thing for now.
.

Re: None of the above

wendyn on 2/15/05 at 23:13 (169127)

No elliot, none of the above. My physiotherapists have all suggested that an MRI of my lower back would be very helpful - I have many symptoms of neuropathy that they can see (don't have time to get into them tonight).

Didnt't ever see a neurosurgeon, never had a nerve block.

While I likely have lower back issues, it does not explain the lumps in my feet. I will try to post pictures of them this weekend..I've just never gotten around to it. It's really the lumps that cause all of the confusion...the doctors always want to find one blanket diagnosis. Honestly, I think there is more than one thing going on.

Re: "all of the above" may be the right answer

elliott on 2/16/05 at 21:43 (169206)

Wendyn, I realize you're kind of fed up of your other problems and don't want to start with the back, but if you re-read my previous post, what I'm saying is, lower back issues may indeed explain the lumps in your feet. I'm not saying what you have is common or easily diagnosable, but there are many types of back ailments that can affect the feet in various ways. Do some web searches and you'll see. That's why seeing a really good neurosurgeon might be worth a try, maybe a better and more refreshing try than the frustrating, fruitless, often repetitive tests you've been getting up to now. It may help to get an MRI (with dye :-)) of the lumbar spine first, since he's probably gonna insist to get it anyway. Finally, there are a multitude of new types of shots to the back that are safe, and if not always a cure (which they can be), may be of tremendous diagnostic value (e.g., if your feet problems temporarily abate).

Re: "all of the above" may be the right answer

wendyn on 2/16/05 at 22:23 (169211)

Thank you elliot, and you're right.

I have been going to physio for the last few weeks for my lower back/butt/leg pain. The therapist has been doing IMS to help with chronic muscle tightness. This is where she pokes acupuncture needles into various muscle bands - causing a nasty muscle spasm. It hurts, but it works.

Interestingly enough, and weirdly enough - it seems to be having some unanticipated,but positive effect on my feet. Last week, the lumps on my feet were quite reduced in size (although they are bigger again this week). I've had two people comment this week 'Wow, you're sure walking fast!'

I don't walk slowly intentionally; I just walk slowly because it hurts less. I had not even noticed the reduction in my foot pain until someone else pointed it out by noticing that I've been practially running around the office. I've known one of these people for about 10 years, and she said 'I don't think I've seen you walk that fast in years.'

So, I agree that there may be some sort of unexplained connection between my feet and my back. That said, I don't know that the answers for me will lie in MRI's and shots or surgery. I am more and more convinced all the time that my answers will likely be found in alternative therapies - like what I'm finding with the IMS.

Tough for me to come to terms with, being the more logical, analytical type who doesn't really 'belive' in many alternative therapies.

Re: "all of the above" may be the right answer

elliott on 2/16/05 at 23:08 (169218)

Wendyn, glad you've already shown some improvement. Speaking of acupuncture (which I did try myself, but to no avail), get a load of this that I plucked off the web:

http://gancao.net/ht/back.shtml

Kidney Pathology
Like the damp heat problem listed above, this is not a nerve impingement syndrome but an issue that deals with the organs found beneath the skin in the lower back. Those are the kidneys. Kidney pathologies run the gambit from stones, to a deficiency of Yin or Yang in the body. Yin deficiency tends to include lower back ache that is a long term problem, six months minimum with no history of trauma. It just started hurting one day and never went away. Other symptoms of Yin deficiency include hot flashes, night sweats, tinnitis, irritability, restlessness and the feeling that your hands and feet are too hot. Acupuncture treatments would be consistent with stimulating the kidney functions and herbal medicines such as Liu Wei Di Huang Wan would be employed to treat the root cause of the pain.
A deficiency of Kidney Yang could also give rise to lower back pain. Other symptoms of Kidney Yang deficiency would be early morning diarrhea, cold hands and feet, lack of energy, pale face, hearing loss, feeling cold all the time, frequent urination, low libido.

---

I'm not laughing at alternative treatments or PT. But usually, when one one has lower back pain and sciatica, there are two main causes:

1) tight muscles, for which things like yoga, stretching, and PT are far more likely to be beneficial, and

2) disc problems, for which the previous treatments may be less likely to help (although still may since loosening tight muscles can help)

The purpose of the MRI is to see into which category one falls, target the treatment accordingly, and avoid what could possibly be harmful treatment.

Concerning shots, you may recall when I last posted on these boards that I was feeling kind of down due to, among other things, chronic sciatica (5 years), forcing me, among other things, to kneel on the floor in front of my desk like more than half the time at work. I had a lumbar MRI diagnosing multiple disc/nerve problems, which was used as an aid in giving me, just recently, a series of targeted shots of certain types. As a result, I'm now basically cured of the sciatica (3 months and counting). I know there's a lot of sciatica sufferers here, so maybe I'll talk more about the shots another time.

Finally, going for an opinion to a neuro is not the same as getting surgery. I've had a few neuro opinions myself, and they generally told me to try and hold out as long as I can in the hope that the pain would fade without surgery. It's just an opinion that could be informative, and is certainly more logical and analytical, as you are.

Re: "all of the above" may be the right answer

wendyn on 2/16/05 at 23:29 (169221)

Interesting - I have all the symptoms of Yin deficiency. Weird.

But, I'm not going for acupuncture right now. IMS works on muscles, not energy meridians. I'm going to see how the IMS goes..so far it's working wonders on my pain. My GP has already said that if the physio fails, he'll want xrays of my back (!) and then an MRI (!). So, I won't have much of a choice if the IMS doesn't work.

I can't live without being able to sit - the pain I had before I started IMS was awful.

Here's hoping for the best from alternative medicine...

Re: Wendy - your spine

Julie on 2/17/05 at 01:58 (169228)

Wendy, I want to encourage you to consider seriously what Elliott says about your lower back. Ever since you posted that standing photo of you (from a holiday a couple of years ago) I have wondered if there is a connection between your lumbar spine and your foot problems. The other day, when we had that discussion about sciatica, I wondered again.

Of course it's not possible to be 'certain' about this, but it seems to me to be more than likely. Sciatic nerve impingement can affect the feet and could well be the source of your lumps and your other symptoms. And as it seems to be the one area of possibility that has never been investigated (a couple of days ago you answered 'no' to all Elliott's questions about your spine) I think it really should be.

The first step, when you've got over the latest saga, might be to take the initiative with your GP. Discuss it with him, and say that you would like to be referred to a neurosurgeon. (Elliott is right: they don't just 'do surgery' but are best qualified to give you an informed view of what is going on in your spine.)

I would resist any request for you to have more X-rays. X-ray will not reveal disc/nerve involvement, which is what you are looking for. An MRI (with Die ;) ) or possibly a CAT scan will. The neurosurgeon would decide on which to order.

I would go down this road before embarking on complementary therapies, and I say this as someone who does 'believe' in complementary therapies as a valuable adjunct to orthodox medicine. We need to take the best of what can be offered by both fields. But if there is something going on in your spine that can be identified and addressed directly, it would make sense to find out, first, what it is, and whatm if anything, can be done about it.

In yoga, which you've been practising for several years now, you don't just stretch your muscles. Yoga stretching does improve disc health by relieving the pull of gravity and the pressure of sitting and standing. It rehydrates the discs and plumps them up. So your yoga practice will have had a positive effect on your discs. But I would be willing to bet that there is something going on in your lower lumbar that could do with attention.
.

Re: Wendy - your spine

wendyn on 2/17/05 at 07:33 (169241)

I'm off to work, but one question. What would a neurosurgeon find in my spine that can be fixed? If it can be fixed, how would it be fixed?

Re: Wendy: one question, long answer

Julie on 2/17/05 at 10:08 (169250)

Wendy

A neurosurgeon would look at your MRI or CAT scan pictures, which would show any soft tissue abnormalities (X-ray, as you know, only shows bones, which MRI also shows). These could include any problems with actual structure, and with the intervertebral discs: thinning, for example, or bulging. Thinning and bulging are signs of wear and tear and not necessarily problematic in themselves, unless a bulger contacts a nerve (there's a lot going on in a very small space in there, and the discs are awfully close to the foraminae, through which the nerves exit the spine). More seriously, herniation, which is what happens when the outer wall of the disc (the annulus fibrosis) tears, and part of the inner cushion (the nucleus polposus) begins to leak out. The leaking part can put pressure on a nerve, causing pain and/or neurological symptoms. The herniation would be visible to the neurosurgeon on the MRI.

Depending on which side the disc has herniated on, and which nerve is being affected, the symptoms will affect part of the lower extremity on that side - anywhere from the lower back down through the hip and buttock, thigh, front or back, leg and foot. In my case it was the lower back and hip on the right side, and the front and inside of my right thigh, the area supplied by the L2 nerve which was the nerve being damaged by a wandering fragment from my exploded disc. In your case it sounds as though something, not necessarily the same thing, might be going on with your sciatic nerve.

Neurological symptoms usually mean that the nerve is being damaged, and once there are such symptoms something needs to be done to take the pressure off the nerve in order to avoid continuing damage and loss of sensory or motor function. Surgery is one of the options, but it isn't the only option, and the surgeon would not necessarily recommend it. He might advise waiting and seeing: sometimes disc matter is reabsorbed. Or he might be one of the rarer guys who has kept up with research and state-of-the-art clinical practice and knows about the latest injection treatments. Given your long history of problems he might - if spinal problems are contributing to them - be in favour of some kind of intervention, not necessarily surgery, because they have been going on for a long time and you do have neurological symptoms. But most importantly, he would be in the best position to identify the source of your problems - if they are in the spine.

Elliott mentioned the injections that have helped him, and I'm sure he will tell you more about them, as he did me. It could be that your problem - if it is spine-related - would be responsive to them. In my case, surgery was urgently called for, because the herniated bit of the nucleus had fragmented and wandered off, and a large piece of it, about the size of a fingernail, was embedded in the nerve and was busy destroying it. That was very dramatic, but it does seem to have been remedied, and I can tell you, as I know John would tell you, that spine surgery is now very precise and sophisticated and (as he put it to me) 'no big deal'. I never thought I would agree with that, but I do now. I was out of the pre-op pain immediately, the neurological signs have almost totally gone, and I am without pain from the surgery itself and have been since week 2. So for me it really was no big deal, and I am very glad that I did it and did it quickly, before the nerve was irreparably damaged. I doubt very much that your situation is comparable: I'm sure you have plenty of time to consider all options.

Many spinal problems are amenable to self-therapy: i.e. the right kind of exercise. I know you are practising yoga, but possibly your practice doesn't include the specific exercises that would help your specific problem - whatever it is. I can tell you that after 35 years of yoga practice and teaching I was not aware of things I should have been aware of but was not aware of until my own recent experience. That is not entirely my fault: much of what I now know comes from looking into the most recent research in physiotherapy for the spine, which indicates that the main spine's principal stabilisers, the transverse abdominis and multifidus muscles, need to be isolated and engaged: together with the pelvic floor and the diaphragm they form the 'inner unit' that supports the lower back through movement and load-bearing. If these muscles aren't working properly, and working in concert, the lower back is not properly supported and problems result. Once there is a problem - an injury, a disc herniation - the all-important multifidus muscles (the deepest layer of the spinal muscles) stop doing their stuff, and apparently don't recover without close attention and a lot of precise work (which I am trying to do in my enforced leisure at present :))

I don't want to make this much longer, but if you google on 'inner unit' and 'multifidus' you'll find much good information. I might email you later with some selections.

What I'm suggesting is that - depending on what is going on in your spine - there may be quite a lot you can do to help remedy it. There are several good books - Sarah Key's Back Sufferer's Bible is the one I'm reading at the moment. Judith Scott's Goodbye to Bad Backs, originally recommended by Dorothy, is another. The Body Control Pilates Back Book is another.

All this is speculation. But. Despite all these years of your troubles and your pain, your spine seems, extraordinarily, to be the only area that has not been investigated. And yet the spinal nerves affect absolutely every part of our bodies. I may be barking up the wrong tree, and I certainly can't tell you what to do, but I really do think this is an area that should be investigated.

Sorry this is so long!
.

Re: Wendy - your spine

elliott on 2/17/05 at 14:41 (169262)

Wendyn, just one thing to add to Julie's long answer: perhaps you go to the neuro, describe your strange symptoms, and, combined with his viewing your lumbar MRI (with dye, of course :-)), he says, 'Eureka! I know what it is! You have classic toohardtopronounceitis, and here's how we treat it!' Is that likely? I don't know. But neurosurgery journals are full of studies of strange illnesses, some of them cured or contained with medication and specific PT. Perhaps more realistically, it could at the least be the start of the end of your back problems, like it was for me.

elliott

{}

Re: Wendy: one question, long answer

elliott on 2/17/05 at 15:06 (169263)

Julie, just one thing to add to your post. I say, be grateful you were one of the fortunate ones for whom surgery worked (at least for now; I'd wait 5 years before being certain recurrence of some type is unlikely), but never view back surgery as 'no big deal'. I'm not saying success is a miracle, but the risks are still high. Here's some stories I know personally:

My secretary's boyfriend. Had essentially the same symptoms as me. Ha his first operation 5 years ago, was a success until recurrence last year, when everything came back in the same place. Had second surgery from same surgeon, was a disaster, had third surgery two months later. Is sometimes sore but currently holding, but doc said don't overdo it and the slightest problem and we'll have to do fusion.

Personal acquaintance #1. Had mysterious frozen shoulder. Three big-name neuros from pretigious institutions all gave hime the same opinion that the discs in his neck (wherre he had no pain) were out too far, and a little more and he'll be totally paralyzed unless operated on. A few months ago, they fuse several discs in his neck thru the throat, but no change at all in his frozen shoulder, i.e., the surgery they did was irrelevant. This is an example of why I don't automatically accept the words of experts in this field. If there's a safe alternative to try first before surgery, I say try it despite how convinced they are of what needs to be done, even if they look at an MRI (with dye).

Personal acquaintance #2. Had an assortment of discectommies and fusions in neck and spine. In chronic pain. Turns out pioneering doc's hardware wasn't as good as promised and is not standardly used. (I did tell him to try the shots, he did, and has had some improvement for the first time in years; this is still ongoing. BTW, he's the same guy whose foot and ankle ortho told him to do the standing PF stretches.)

Friend of my mom's. Kept having successive disc surgeries as the back kept collpasing on itself. Is homebound and in pain.

My co-worker's chiropractor. This just happened. Into fitness and health and all for herself and her patients, but when she tried to get her frozen car door open, she threw something out in her back. Had surgery to fix it. During surgery, the flap pushed aside to allow access to the area of concern pushed into something else, leaving her partially paralyzed and with loss of feeling. Her life may be ruined if it doesn't resolve.

I could go on. Sure, they're only anecdotes, but why do I know so many personally? Back surgery may be necessary, but it's not routine, not even the routine back surgeries.

Re: Elliott

Julie on 2/17/05 at 16:17 (169268)

Elliott

I am grateful.

Yes, of course if there is a safe alternative to surgery it should be tried first, as long as the problem, whatever it is, is amenable to it. And of course no surgery is routine. That goes without saying - and you know that I know it. I also know that Wendy knows it: in quoting John, I was hoping to encourage her to keep an open mind - to surgery, if it is offered as a solution to her troubles, as well as to all other options. Now you're scaring her - but she knows about risk just as you and I do.

We all know stories of surgeries that have turned out badly, particularly those of us who've been around at heelspurs for any length of time. Sometimes, as in two of your stories, terrible errors are made, and sometimes surgery was the wrong choice. And all surgery carries risk.

But as for 'failed back surgeries', and as for problems that recur months or years after surgery, the point really is that NO surgery is the total or the final solution to any problem. That may be especially true of spine surgery, and particularly of surgery of the type that I have just had: for a ruptured disc. A disc ruptures because there is a weakness in a segment of the spine. The weakness occurs for a reason, or more likely a constellation of reasons. The surgeon can repair the disc and free the nerve. The rest is up to the patient.

Wherever there has been a weakness, the problem can and most likely will recur unless action is taken to avoid recurrence. In my case - for example, but it's the example I know best :) - the rupture was at the L1/2 level. Several factors of which I was not aware before it happened, but now am aware of, contributed to that weakness, not least that the segment immediately above L1/2, in the transitional curve between the thoracic and lumbar spines, is stiff. When a spine segment is stiff and not working optimally the segments immediately above and below, especially below, have to work harder and so are under greater strain.

Doing something about this, and about whatever 'core' muscle weakness I have, is my responsibility. Not the surgeon's, mine. I do not regard myself as permanently 'fixed' now that the surgeon has done what seems to have been a skilled and successful job, and I don't need to wait five years before judging it a success. It is a success - so far. The future is up to me. If I don't now do the work that needs to be done, I ought not to be surprised if the same weakness - it is still there - results in a recurrence of the problem in a few years time.

I do go on, don't I - but my own recent experience is naturally very much in my thoughts. Please excuse the verbiage. What it's driving at so longwindedly is this: when a spinal problem that has been surgically treated recurs, it does not necessarily mean that the surgery 'failed', or that the surgeon didn't do his stuff properly. It is more likely to mean that the patient thought s/he was fixed, didn't learn the lesson, and didn't take responsibility for avoiding recurrence of the problem down the line.

I feel exactly the same about my cancer surgery. A good and decent consultant breast surgeon removed my left breast, but I don't regard that as a guarantee that I will never have cancer again. Living as much as possible so as to avoid cancer is my responsibility. I may not succeed in that (but if I don't I won't blame the surgery or the surgeon) just as I may not succeed in avoiding future back problems (and if I don't I won't blame the surgery or the surgeon) but I damn well intend to try. I am sure that Wendy, if she ever does have surgery, would approach the challenge in the same way.

And I feel the same about PF, as I have said many times. It's four years since I've had any trouble with it. I didn't have surgery, but I followed a course of action that freed me from the pain, and I continue to follow it because the weakness that caused the PF is still there, hasn't changed, and will probably result in recurrence if I don't continue to avoid it by wearing good walking shoes and orthotics whenever I leave my front door. And Birkenstocks when I'm inside.

So to get back to the point. I don't accept that 'failed back syndrome' means in every case - or even in most cases - that surgery has 'failed'. It more likely means that the patient made the mistake of thinking (perhaps was even encouraged to think) that the surgery which ended the pain got him out of trouble for good. Or that he just didn't know how to work on himself to avoid recurrence. How many people do?
.

Re: Elliott

Dorothy on 2/17/05 at 16:41 (169270)

Julie -
Did you know that the area you mention (between thoracic and lumbar)was stiff before surgery, did you learn of this during your investigations of the cause of the pain, or have learned this since your surgery?

(Now THAT'S longwinded! I know how to be longwinded! Let me try this: WHEN did you determine that it was stiff?) Also, how did you determine that it was stiff?

Thanks ~

Re: Elliott

elliott on 2/17/05 at 17:39 (169272)

Julie, nothing wrong with getting an opinion; she's certainly mature enough to handle that. Sometimes that opinion means just medication and PT, all the more reason to get the opinion. If surgery is advised, she can think it over. It may have merit. That said, while someone's own successful back surgery may have been no big deal given success, a priori back surgery is fraught with risk that should not be minimized and that the patient should be aware of. Yes, surgery can fail for an assortment of reasons (innate unpredictability, incompetence, error, failure of patient to make lifestyle changes post-surgery, etc.).

A prestigious neuro once told me not too long ago that for the standard discectomy, which should by now be 'no big deal', the odds of success are 85%, with 25% chance of recurrence. That may not sound too bad, but that means the chances of being one and done are .85 x .75 = 64%, still high enough to see mostly successes, but maybe not so good anymore.

Re: Julie and Elliott

wendyn on 2/17/05 at 20:20 (169282)

Thank you both so much for taking the time to explain so much of this to me. I truly appreciate your energy helping me think through this.

I don't have to decide anything today, since there really is no sense of urgency. Whatever is wrong with me, be it one thing or 87, has been wrong for a very long time.

True, there may very well be a spinal explanation for my lower back pain, some of my foot pain, the sciatica, and maybe even the lumps on my feet.

On the other hand, there isn't likely a spinal explanation for the recurring erythema nodosum (lumps on my shins), the torsion in my leg, the collapse of the arches in my feet, the dry painful eyes (so often associated with rheumatoid arthritis), the Raynaud's syndrome, or the recurrent episodes of costochondritis. Maybe none of these things are related. Maybe all of them are.

Considering my quality of life right now, I would have no reason to consider any type of surgery or spinal injection. Unless my health was in serious jeapordy, which isn't likely. Bear in mind that compared to where I was 6 years ago, I am WAY better off. If I was still in horrible, constant pain, or if I was getting worse - I would certainly have more cause for concern.

I do practice yoga (both hatha and ashtanga). I go to core conditioning classes, sit on a fit ball at work, I lift weights, use an eliptical trainer, and ride a bike. I feel better, in many respects, than I ever have.

If I can't get the sciatica/butt pain under control with the IMS and physio - then I will have no choice but to agree to the MRI (with dye!) But, since I did see my doctor first - and he's the one who suggested a good try at physio, I want to give that a legitimate shot.

The GP did do a very thorough exam before suggesting the physio, and I'm absolutely confident that the physio is not in anyway making me worse.

Now, the sleeping on my stomach matter...that's another whole post!

Re: Elliott

Julie on 2/17/05 at 20:48 (169283)

Elliott

Wendy asked me a question, and I tried to answer it to the best of my ability. I discussed surgery as one of the possible options in answer to the second part of her question, IF investigation were to reveal spinal nerve involvement. I wasn't advising her to have surgery and I hope she has not read my post thus. Nor was I extrapolating a rosy view of all back surgery from my own satisfactory experience, although I realise that in passing on and half-jokingly concurring with John's reassuring remark I might have appeared to be doing so.

To return to the topic in hand, you and I both feel that an investigation of Wendy's spine as a _possible_ source of her neurological problems would be a good idea, and that a neurosurgeon would be an appropriate medical professional to consult. My posts were made to support yours. We would both like to help Wendy gather information, if we can. Perhaps it was unwise of me to bring my own experience into the discussion, as that now seems to have become the topic and muddied the waters (sorry, Wendy).

Elliott, last month you (kindly and privately) made clear your view on my decision to have surgery. You counselled me to have a different treatment that had worked for you. I appreciated your advice, but didn't follow it. I will continue to give Wendy whatever help I can if she asks me for it, as I'm sure you will, but do not want to talk about myself any more. I am frankly sick of the sound of my own voice, and of the topic insofar as it concerns me and my experience.

My 'prestigious neuro's' recurrence statistics are rather at variance with yours. I hope my neuro's statistics are closer to reality. :) I would suggest, though (with respect to your credentials and your competence as a statistician) that no statistics that purport to be predictive of recurrence can be meaningful if they don't take account of the various causes of surgical failure (including patient failure to make changes in self-care) of which you and I are both aware. My hope is that my efforts to stabilise and strengthen the structures that support my spine will make my own personal 'likelihood of recurrence' statistic .001 %. I'm sure you wish me well.
.
.

Re: Wendy

Julie on 2/17/05 at 20:58 (169285)

Wendy, while you were writing this, I was writing my (final) post to Elliott. I'm very glad you are improving with physio! Having followed your saga over the past five years of my sojourn at heelspurs, if not the whole six of yours :) it's been clear to me that all the work you've done on yourself has made a huge difference to your state of mind as well as your state of body. I admire the way you think and the way you take responsibility for yourself and I know those qualities will always see you through.
.

Re: Dorothy

Julie on 2/17/05 at 21:03 (169288)

You're not longwinded at all.

Yes, I did realise something was going on there before, and it has since been observed by a practitioner.

Dorothy, I've decided that I don't want to talk (here) any more about my spine or my surgery and its aftermath. But I'll be glad to tell you more off the board if you like - you have my email.
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Re: Julie and Elliott

Dorothy on 2/18/05 at 00:38 (169298)

IMO, one is the kind of sleeper one is. I'm sure you've seen the films from studies of people sleeping when their movements are observed. Most people move quite a bit during sleep, so even if we start out in one position, we might end up in quite a different one. I have sciatica, too, and I think two things are true for me - one is that I need to change position quite a bit and the other is that stomach sleeping with the side affected by sciatica, when it is troubled, is kind of 'hiked up' w/knee bent somewhat. A PT once told me that is quite common among people w/sciatica to find that position more comfortable. In any case, if I start out in a different position, I usually end up in that one.

It always seems to me that if we all put our heads together, knowing your set of symptoms, we could come to a diagnosis. Your symptoms always sound familiar to me, as if I've heard them associated w/some syndrome - but I can't remember what. There are differential diagnosis methods and constructs - surely we all could figure this out!

Re: Dorothy

Dorothy on 2/18/05 at 00:47 (169300)

Julie -

I respect your wishes and will try to remember! I am very glad that you are feeling so well.

As to your earlier question about publishers - and I'm sorry my response is delayed - I am going to recommend your book to my contacts.

In today's mail I received a catalog called 'Isabella' with inventory that, to me, is fascinating stuff, the kind of catalog that is fun to look through. They carry a number of books and authors, videos/audio/CD products among their varied inventory that yours would fit in with perfectly. I really don't know how one gets one's products into something like that, but I will get you the number and website so you can look at it if you want. I think it would be a perfect marketing vehicle for both of your books (The Healing Power of Yoga and The Visible Wound); when/if you see the catalog, I think you will agree.

Re: Dorothy

Julie on 2/18/05 at 02:48 (169304)

Ah. Now you've got me onto the topic of mattresses. I'll try not to be too long-winded. Yes, I've seen films of people sleeping and moving a lot, but I think the reason people move so much is that their bodies are seeking a more comfortable position than whichever one they're in, and that is because their spines aren't being supported in neutral alignment and cannot remain in any one position for too long. Mattresses tend to be either too soft or too hard for the weight of the person sleeping on them, so the spine is stressed, and has to do something about the stress: i.e. move to a (temporarily) less stressful position. This is the big selling point of the memory foam mattress industry: Tempurpedic and its clones and imitators. I was persuaded by it, since it confirmed what I already thought, and bought one (and a pillow) last summer. Since then I've sleep a good deal more soundly than before, in the position that is most comfortable for me (side lying with a pillow between my knees). I had been a very light sleeper and moved all the time: I don't move now, except when I get up to pee (old lady's bladder). When I return to bed I usually change sides. That might happen once or twice in the night, but that's it.

The mattress was a godsend when I was in pain and turning over in bed was agonisng or impossible. During the nights when I slept little or not at all, I was at least able to lie still and breathe in the only position that wasn't excruciating.

I am not a representative of Tempurpedic or any other memory foam manufacturer. Just a satisfied customer. :)
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Re: Dorothy

Julie on 2/18/05 at 02:50 (169305)

Thanks Dorothy, on both counts. I would certainly like to look at the Isabella website and would appreciate a link.

You mentioned A Visible Wound. Have you read it, too?
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Re: Sleeping on stomach

wendyn on 2/18/05 at 08:39 (169313)

Julie, I meant to post again last night about the tummy sleeping, but a friend stopped by and it got too late.

We do have a fairly new bed (less than 3 years). Although I can't remember the brand name, it's a good quality bed that has the separate coils so you don't feel when your partner is rolling around. Very helpful since my partner sleeps with a sometimes insomniac.

I've always tended to sleep on my stomach, but I've noticed that in the last few months it's even more so. At some point in time, I'm sure I'd heard it wasn't good for me - but I appreciate your reminder.

Last night I started out on my stomach, then realized what I was doing and flipped to my side. That wasn't comfortable, so I tried the other side, then my back. Around this point I felt obligated to explain to the husband that I was trying to be good to my back and find a better sleeping position. Then I had to go into the long story of how we ended up discussing this on the heelspurs board...which I'm sure he found riveting.

After about 30 minutes of acting like I was on a rotisseire (sp?) I think my husband was ready to push me out of bed. Eventually I fell asleep, but every time I rolled onto my stomach I woke myself up!!! (Little Julie voice in my brain admonishing me)

I will get some extra pillows tonight and try again.

Re: Sleeping on stomach

Kathy G on 2/18/05 at 08:56 (169318)

I am having the opposite problem. I have always slept on my left side, with my knees bent, as that is the most comfortable position for me. If I sleep on my right side, my right arm goes numb and it wakes me up or if if doesn't, it makes turning off the alarm clock a real challenge since I'm right-handed.

In the last few months, since the OA in my clavicle and neck has been particularly painful, I suspect I might feel better if I could sleep on my back. Try as I might, I just can't do it! I've tried piling pillows along the side of the mattress but they just end up on the floor in the morning.

Any suggestions? Or maybe back sleeping isn't such a good idea?

Re: Sleeping on stomach

John H on 2/18/05 at 09:52 (169327)

Called the fetal position Kathy. You need to look into that. Possible issues here? I sleep on my right side or stomach. I cannot sleep on my back either. Have you tried a neck pillow that is curved that allows your neck not to bend very much?

Re: Sleeping on stomach

Julie on 2/18/05 at 09:53 (169329)

Kathy, back sleeping is fine as long as the knees are bent and supported by pillows to take the lower back out of extension and release tension in it.

I say it 'is' fine. I should amend that to 'it is ok and it CAN be fine'. It never has been for me because I snore in that position. Many people find this. But if you don't (or if your nice husband doesn't mind you snoring) you might try it.

If your neck is painful (and even if it isn't) I can recommend a memory foam pillow. The kind that I have supports the neck in alignment with the rest of the spine and is very helpful if the neck is problematic. Hang on and I'll see if I can find a link for you.

This is the one I have:
http://www.spinalproducts.co.uk/products/neckcare/neckcarepillows.html

Here is one that is available in the States. It's a different shape so I can't vouch for it, but the site has good information and they do offer a full refund if not happy.
http://www.healthyfoundations.com/pillows.html

It might really be worth your while to research memory foam if you haven't (there are of course zillions of websites - just have a google). A mattress might be beneficial for you too, as you have pain in so many places in your body. They're expensive, but worth it, and not more than a good quality conventional mattress if you're anywhere near having to replace yours, and well worth considering.
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Re: Sleeping on stomach

Julie on 2/18/05 at 10:00 (169331)

My posts keep crossing with other posts! Kathy, the pillow John mentions is probably the same as the ones I've been telling you about. I know he has a memory foam mattress too.

Hi John! :)
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Re: Sleeping on stomach

Julie on 2/18/05 at 10:04 (169333)

It's hard to get a body to change its habits, Wendy (something I'm learning an awful lot about right now). But a few months on the rotisserie and you'll be happy in a new position. Maybe. Then I'll be able to stop feeling guilty about worsening your insomnia.

I wouldn't dream of admonishing you. You know my voice - does it sound like an admonishing voice?

You don't have to answer that. :)

Have a nice night tonight. Your hubby too.
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Re: Dorothy

John H on 2/18/05 at 10:10 (169334)

We use the Tempur Pedic mattress which is without question the best mattress I have ever slept on. You can set a glass of water on the mattresss and jump up and down on the other end and it will not turn over. It really does conform to your body and jumps right back up when you get up. It has no springs and uses a material developed by NASA for the astronauts. It is firm and supportaive. You never have to turn it. We have twin beds pushed together so in essence a King size. Each bed is fully adjustable with both head and feet using a remote control for each bed. If you want to elevate your feet no problem. My wife always complained about my constant moving around before we got these beds but there is zero trasfer of movement on them. This is the ultimate bed in my experience. They are expensive but a good bed is money well spent.

Re: Dorothy

Dorothy on 2/18/05 at 12:46 (169350)

John H - I appreciate your view on the TempurPedic; I have wondered about them and when they first came out, I was one of the people who requested info and got their sample of the foam which I still have! (pack rat homage to your wife :-) I always figure I'll have SOME use for that nice foam. Anyway, I wonder if you've heard any of the recent comments about the foam giving off harmful 'vapors'??? I haven't paid a lot of attention because I don't have one of the Tempur Pedic mattresses -but I have maintained an interest in them. I have wondered how well they hold up over years of use. 'Regular' mattresses wear out and they have a supporting structure beyond foam so I have wondered about the durability of the TempurPedic. Any information on that??
Thanks, John ~

Re: Sleeping on stomach

Dorothy on 2/18/05 at 13:13 (169353)

Julie - You clearly are not a world-class snorer. My husband can snore in any position known to humankind and he does it with great zest, creativity and energy. He is particularly fond of nuzzling up, homing in on my ear and giving forth! It's a cozy, sweet nuzzler, he is, but the snoring - not so much. Sometimes I'm up here in the wee hours waiting for the volcano to settle down....He's a mighty fine human, dear to my heart, but the snoring - well, he's due an award for its quality, but it won't be from me!
As for me? Huh? What'd ya say?? Speak up, will you??

Re: Sleeping on stomach

Julie on 2/18/05 at 14:14 (169365)

No, that's right, I am only a lowly second-rate provincial snorer. I can snore only on my back, very subtly and delicately, if I say so myself. My husband would not agree, but is pretty tolerant.

You sound like the saint in your family!
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Re: Dorothy

Dorothy on 2/19/05 at 02:43 (169389)

Julie - Re. people moving during sleep: I think that it is because of the body's signaling to shift positions for purposes of increasing circulation (relieve pressure), build-up of waste products from lack of movement/circulation, and, as you say, for better support of spine and other body parts. As we know, pressure sores develop rather quickly when a person cannot move in bed and that is largely due to poor circulation that happens in that case.

Now that John H and you have both recommended the TempurPedic, I'll have to take a test drive. I do wonder about the durability, as I wrote in a post to John H. and I also wonder about the short-term and long-term 'aroma' of a foam bed. I can recall so many foam upholstered furniture pieces of the past that reeked of - well, foam. I am very persnickety about my sleep environment and I like good smells, nice sheets, cool room and so on. If things smell like foam, I don't think I'd like that. Since TempurPedic is still relatively new, the durability and 'old foam' odor questions may not be answered yet.

Re: Dorothy

Dorothy on 2/19/05 at 02:53 (169390)

Julie ~

The Isabella website is http://www.IsabellaCatalog.com .
Their telephone number is: 1-800-777-5205.
They are at 2780 Via Orange Way, Suite B
Spring Valley, CA 91978

For just a few products they have listed that sound as if they would be similar to your books/spoken word recording: (Book) Dr. Yoga: A Complete Program for Discovering the Head-to-Toe Health Benefits of Yoga by Nirmala Heriza who is identified as 'the hatha yoga cardiac therapist at Cedars-Sinai Medical Center and endorsed by Dean Ornish, M.D.;
(Book) Radical Acceptance: Embracing Your Life with the Heart of a Buddha by Tara Brach, Ph.D.; (Cassettes) Cancer as A Turning Point - by nine different authors; (Book) Broken Open by Elizabeth Lesser; (DVDs) The Flowering of Human Consciousness by Eckhart Tolle; and so on....

I have A Visible Wound; I have not yet read it.

Hope this helps.

Re: Dorothy

Dorothy on 2/19/05 at 02:56 (169391)

John H - You wrote: 'You can set a glass of water on the mattresss and jump up and down on the other end and it will not turn over.'

These must be Arkansas bedtime rituals, but if you think it's something we should all try, well then ok.... :-)

Re: Sleeping on stomach

Dorothy on 2/19/05 at 02:58 (169392)

Julie - No, actually, it's The Snorer who is the saint. He just doesn't qualify because of the snoring, but in spite of it...

Re: Dorothy

Julie on 2/19/05 at 09:00 (169402)

Dorothy, here are a couple of practical points that might be useful if you are investigating memory foam.

1. Smell. Our mattresses - which are not from TempurPedic but from Spinal Products UK - had a smell when they were new. I can't describe it, but it was not especially unpleasant, and it went within a couple of weeks. We haven't had them long enough for me to say anything about old foam smells. I hope there won't be any.

2. Durability. I have wondered about durability. TempurPedic guarantee theirs for ten years, which is about the length of time one can expect an ordinary mattress to last, so perhaps there is little or no difference. I haven't considered this a problem, because even if I had to replace my mattress every five years, or even more often, I would do so happily: it is vastly better than any other I have ever slept on, and I've never had a 'bad' one.

3. Pressure. Memory foam is widely used in hospitals to prevent the formation of pressure sores. The firm that supplied ours is primarily a supplier of hospitals and care homes. Pressure doesn't come from not moving, but from uneven distribution of body weight and the resulting extra pressure on parts of the body from a conventional mattresses, unless it is exactly the right firmness for the body sleeping on it. If a mattress is too hard, for example, the hips (or buttocks) and shoulders don't sink into it and get more pressure than other parts. And the spine isn't supported in alignment.

Here's something from Sleeponit - http://www.sleeponit.co.uk/body-shape-memory.htm?g - one of many websites that are selling much the same products. This one has good information, and an illustration comparing pressure on different mattress types:

'The BodyShape Memory Foam is the perfect aid for people who unfortunately find themselves bed ridden for long periods of time. The even distribution of body weight prevents the development of bedsores, eases arthritic pains and greatly improves poor blood circulation. This results in 80% reduction in tossing and turning, giving a much more restful nights sleep.'
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