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To June

Posted by wendyn on 9/02/02 at 16:39 (094271)

June, I'll try to answer your questions...if I miss anything please let me know.

I 'know' so much about this, because I've spent too much time on this board!! I arrived here just over 3 years ago, and if you ever have six weeks of nothing to do - you could actually retrieve and read my whole sordid story that's been logged in this website over hundreds of posts.

I don't think you'll ever have the time or inclination to do that, so I'll give you the greatly condensed version. I was diagnosed around three years ago with Tarsal Tunnel Syndrome (amongst other foot problems). I spent close to a year with a very restricted lifestyle (hardly able to walk) and so I spent a great deal of time at my computer. I've learned a lot from research, my doctors, and the people on this board.

I have never had surgery to correct my current foot problems. After numerous tests, consultations with doctors and the surgeon, and my own research - I made the choice (with their support) to not have surgery. Three years later, I am much improved. I still have foot problems, and my primary problem remains something called RSD. It was caused by the original foot injury and TTS that I had. There are a few of us here with RSD, many of them have had to undergo nerve blocks as treatment. I am fortunate that my RSD seems to be relatively under control, and I manage in spite of it.

My prognosis is a big question mark. No one knows if I will stay this way forever, or if I will continue to slowly get better or worse.

I can manage with all normal activities now, although I still have pain with some. I find it hard to go shopping or walk for any distance. Standing is worse than walking. Cooking in the kitchen is still tough at the end of the day, but I manage most of the time pretty well. I'm very active, and my overall health is good. I can now say that if I have to live this way the rest of my life, I can. I could not have said that three years ago.

To look at me, you would likely never even know there was anything wrong (other than when I limp sometimes).

Now, enough about me. On to you. The most important next step (which you already know) is to get the results on your nerve conduction test. Ask for a copy of your results (for your records) and feel free to post the results here if you feel comfortable doing so. We have a few doctors here who may be able to help decipher what it all means.

Your nerve conduction tests will help pinpoint the location of the problem (is it coming from your feet or your back etc) but it does not always help determine WHY you are having pain. Please don't worry about surgery yet, you don't know if it's going to happen - or even what type of surgery might be required.

With respect to the needles, like I said - most doctors will offer valium or an equilvalent prior to surgery. It may help you to not care that you're having a needle. Beyond that, there's always things like talking to someone like a psychologist about your phobia (no shame there, done it myself).

Please post what happens with your results, and regardless of what happens - you've found a great place to come and vent frustrations and find support.

Re: ps to June

wendyn on 9/02/02 at 16:47 (094272)

One word of caution, you may want to seriously consider NOT mentioning to your doctor that you've been doing ANY research on the web. Many doctors can be entirely put off by the idea, and you may regret mentioning it.

If you have to mention something you've read here, you may want to just say that 'someone told me' or you'd 'heard that...'. You can always use a little white lie if you have to about hearing something from your second cousin who's a nurse. Trust me - it might make things easier with the doctor. The idea of patients doing extensive research is new to most doctors, and it isn't something that many of them seem really big on.

Also, many of them think that anything you'll find out on the net is garbage anyway (and this can often be true!!!!)

Re: ps to June

June on 9/02/02 at 17:10 (094278)

Wendy,
VERY good tip. Thanks bunches. The last thig I would want is to 'tick off' any one that is approching me with a knife!! I probally would have done just the opposite, thinking I was 'helping' with my new info.June

Re: To June

June on 9/02/02 at 17:29 (094280)

Wendy, I am sorry, I do not know what RSD is. It certianly sounds like you have done fairley well with out any surgery.It just surprises me that if you were in agony, and surgery was an option that you just didn't 'go for it' in hopes that it would have done the trick. I am getting too depressed, frusterated, hateful, because of the illnesses piling up, and if there is a chance to get my life back, I want it!! I'm not a teenager, but still to darn young to sit back and be miserable and watch my life go by wishing everyday that it was different. Yet on the other hand I read that someone called the surgery a 'crap shoot' and that terrifies me at the prospect of things getting worse. If surgery is recommended, how could anyone NOT see if it would help.
BTY one of you were trying to email me privately...I do not see a 'reply' button anywhere. Possibly it's because I don't have a computer, but a webbie???? I am finding all this soooo informative,and thanks to all of you, I feel like I can get through today, and even tomorrow...that was not the case 2 days ago. I am screwing up the posts, and I don't want to miss anything.This is the first time in years that I had anyone to be able to relate to about the pain.
June

Re: To June

wendyn on 9/02/02 at 18:14 (094284)

June, in an effort to condense 3 years of history into a few paragraphs - I've probably left out a lot of important detail.

While I did have one pod who was ready to rush to surgery, most of the doctor's I saw belived that TTS surgery should only ever be considered after all conservative measures have failed.

I had a number of possible diagnosis that turned out to be incorrect (for example MS and rheumatoid arthritis). Ultimately, I did find a good surgeon who wanted an MRI done before considering surgery. My wait was about 6 months for that surgeon, and another 4 or 5 for the MRI. My patience was forced on me, it really wasn't a choice at the time!

My MRI was normal, and my surgeon was quite adamant that unless there was something in my Tarsal Tunnel to remove or correct - he didn't want to touch it. In addition, my primary diagnosis was eventually RSD - and surgery is a big no-no if you have it (it can make it much worse).

RSD is a rather complicated condition - and it's not very common. In a nutshell, it is a condition that results from the body's response to an injury (sometimes a surgery). It causes actual changes in the nerves themselves, and how they act. Most people with RSD will describe extreme sensitivity in the affected extremity, along with color or temperature changes. Since you didn't mention anything that sounded like it, I didn't know if I should wear you down with info on a different condition.

In my case, what that all means is that sometimes (usually at the end of the day) - my feet will turn quite red and hot. This is always accompanied by some considerable pain. This happens despite the fact that that I haven't 'done' anything to my feet to cause pain - for unknown reasons, the nerves are firing pain messages and increasing the blood flow and temperature in my feet. If the RSD progresses, it can cause the opposite type of symptoms - coldness and a blue type color instead. If it progresses further untreated, the damage can become severe enough to cause things like osteoporosis and muscle atrophy. Most of the time, doctors will begin a series of nerve blocks when RSD is diagnosed - in an effort to stop the pain cycle. In my case, the diagnosis actually came when the problem started to subside.

I seemed to get a lot worse for a period of about 6 months, and at one point my foot was more often bluish and cold. For whatever ever reason (maybe acupuncture, yoga, B12 supplements or the grace of God)- the progression seemed to stop in my case. And, although I have 'flare ups', I seem to be primarily in a state of 'remission'.

Re: ps to June

wendyn on 9/02/02 at 16:47 (094272)

One word of caution, you may want to seriously consider NOT mentioning to your doctor that you've been doing ANY research on the web. Many doctors can be entirely put off by the idea, and you may regret mentioning it.

If you have to mention something you've read here, you may want to just say that 'someone told me' or you'd 'heard that...'. You can always use a little white lie if you have to about hearing something from your second cousin who's a nurse. Trust me - it might make things easier with the doctor. The idea of patients doing extensive research is new to most doctors, and it isn't something that many of them seem really big on.

Also, many of them think that anything you'll find out on the net is garbage anyway (and this can often be true!!!!)

Re: ps to June

June on 9/02/02 at 17:10 (094278)

Wendy,
VERY good tip. Thanks bunches. The last thig I would want is to 'tick off' any one that is approching me with a knife!! I probally would have done just the opposite, thinking I was 'helping' with my new info.June

Re: To June

June on 9/02/02 at 17:29 (094280)

Wendy, I am sorry, I do not know what RSD is. It certianly sounds like you have done fairley well with out any surgery.It just surprises me that if you were in agony, and surgery was an option that you just didn't 'go for it' in hopes that it would have done the trick. I am getting too depressed, frusterated, hateful, because of the illnesses piling up, and if there is a chance to get my life back, I want it!! I'm not a teenager, but still to darn young to sit back and be miserable and watch my life go by wishing everyday that it was different. Yet on the other hand I read that someone called the surgery a 'crap shoot' and that terrifies me at the prospect of things getting worse. If surgery is recommended, how could anyone NOT see if it would help.
BTY one of you were trying to email me privately...I do not see a 'reply' button anywhere. Possibly it's because I don't have a computer, but a webbie???? I am finding all this soooo informative,and thanks to all of you, I feel like I can get through today, and even tomorrow...that was not the case 2 days ago. I am screwing up the posts, and I don't want to miss anything.This is the first time in years that I had anyone to be able to relate to about the pain.
June

Re: To June

wendyn on 9/02/02 at 18:14 (094284)

June, in an effort to condense 3 years of history into a few paragraphs - I've probably left out a lot of important detail.

While I did have one pod who was ready to rush to surgery, most of the doctor's I saw belived that TTS surgery should only ever be considered after all conservative measures have failed.

I had a number of possible diagnosis that turned out to be incorrect (for example MS and rheumatoid arthritis). Ultimately, I did find a good surgeon who wanted an MRI done before considering surgery. My wait was about 6 months for that surgeon, and another 4 or 5 for the MRI. My patience was forced on me, it really wasn't a choice at the time!

My MRI was normal, and my surgeon was quite adamant that unless there was something in my Tarsal Tunnel to remove or correct - he didn't want to touch it. In addition, my primary diagnosis was eventually RSD - and surgery is a big no-no if you have it (it can make it much worse).

RSD is a rather complicated condition - and it's not very common. In a nutshell, it is a condition that results from the body's response to an injury (sometimes a surgery). It causes actual changes in the nerves themselves, and how they act. Most people with RSD will describe extreme sensitivity in the affected extremity, along with color or temperature changes. Since you didn't mention anything that sounded like it, I didn't know if I should wear you down with info on a different condition.

In my case, what that all means is that sometimes (usually at the end of the day) - my feet will turn quite red and hot. This is always accompanied by some considerable pain. This happens despite the fact that that I haven't 'done' anything to my feet to cause pain - for unknown reasons, the nerves are firing pain messages and increasing the blood flow and temperature in my feet. If the RSD progresses, it can cause the opposite type of symptoms - coldness and a blue type color instead. If it progresses further untreated, the damage can become severe enough to cause things like osteoporosis and muscle atrophy. Most of the time, doctors will begin a series of nerve blocks when RSD is diagnosed - in an effort to stop the pain cycle. In my case, the diagnosis actually came when the problem started to subside.

I seemed to get a lot worse for a period of about 6 months, and at one point my foot was more often bluish and cold. For whatever ever reason (maybe acupuncture, yoga, B12 supplements or the grace of God)- the progression seemed to stop in my case. And, although I have 'flare ups', I seem to be primarily in a state of 'remission'.