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Tammie

Posted by elliott on 2/03/02 at 00:01 (072379)

Question about your TTS surgery. You mentioned a much smaller incision than most of us have had. Did you have an endoscopic release (i.e., use of an endoscope instead of an open procedure)? If you don't know, can you ask?

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Re: EPF is for PF only

BrianG on 2/03/02 at 13:27 (072428)

Hi Eliott,

I may be wrong, but I believe the endoscopic surgery is only used for PF.

BCG

Re: you mean endoscopic surgery *should* be only for PF (if that)

elliott on 2/03/02 at 14:12 (072434)

Check out these links:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8081329&dopt=Abstract

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8807482&dopt=Abstract

The authors are pods. I believe the second link claims 100% success (surprise, surprise), on I believe a sample of size 5. An orthopedic journal expressing skepticism explains why this is not such a good idea. Let's hear from Tammie first.

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Re: Tammie

Tammie on 2/03/02 at 17:38 (072470)

Elliott,
I believe I am not positive but I will ask again. I know he said the one incision on the bottom , in fact where the lump is was for the camera? (that was just maybe 3 stitches)The other on the side (inside )ankle was where he cut which was maybe 1 inch again I am guessing ,( i asked hubby he says yes that was what they did both times .First for the pf then for the tts. What are you getting at? Remember (plain english ) for me . I get to lost in medical jargin and fillers. Now he did tell me several times the intital outside incision is very small, but the incision in the foot is much larger cause he told me dont for get that what I see on outside is not what he worries about it is on the inside. Again he kept telling me it is wonderful to be able to use this type of surgery as the outside has less scaring,( I dont care I am not vain ) I told him cut the hole dang foot just fix it. I told him that right before I fell asleep do or cut it so you can be SURE that you get everything done right this time.

We are led to believe this is a aceptable way that things like this get done, are you thinking it is not so? Please tell me as he still has a hand in my care right now.I already crawl I dont want to be in a wheelchair also.(which after a day like today it might almost be worth the dignity issue of mine)This could be in my nearest of future if I dont get some relief some where.I see my primary tomorrow and again I will beg for some help or referral to a new dr. anything at all to find some help.

But I have a gut feeling I am NOT going to get much help from anyone,least of all my insurance co.which is absoulutly worthless! And my own finances suck, as we have deleted any savings per say that we ever had.And a husband who deems home improvements are needed no matter what we make,there is plastic and he uses well. Now he is walking around with his stiff leg after a flare up with RA and bowling. So this is life and it sucks today , but then there is tomorrow to hope for a new day!

Re: Tammie

elliott on 2/04/02 at 16:07 (072554)

It sure sounds like he did an endoscopic; I was afraid of that.

I have in front of me a $300, two-volume reference, 'Foot & Ankle Disorders,' Mark Myerson, Ed., W. B. Saunders (2000), rapidly becoming a mandatory standard ref on many a foot doc's shelf. (By unbelievable good fortune I happen to have the set on short-term loan.) In it is an article written by Steven L. Haddad (Professor at Northwestern University Dept of Orthopedics in Chicago as well as Director of Foot & Ankle Services at Evanston Hospital) titled 'Compressive Neuropathies of the Foot and Ankle.' It describes all the usual nerve problems and goes through the discussion of how to perform a standard tarsal tunnel release. At the end of that, it gives a discussion of endoscopic TTS release, introduced by two pods only in the '90s. There's even a picture in the article of where the incisions are made, so you can compare. Here is the last paragraph of this section:

'Although this technique sounds promising, it is difficult to rationalize the near 100% success rate reported by the authors. The many carefully controlled studies concerning open release of the tunnel document at best a 78% success rate (good or excellent), and more stringent criteria document a 44% success rate. In addition, the one circumstance in which excellent results are often found with decompression, removal of a space-occupying lesion within the tunnel, cannot be thoroughly addressed by this procedure because the lesion cannot be excised. The risk of injury to surrounding structures as well as damage to the nerve categorizes this procedure as experimental.'

In short, Tammie, endoscopic TT release is not mainstream and carries high risk. I can tell you firsthand that none of the big TTS names perform their surgery that way. The bigger scar of the open procedure is not even that big or even that hideous, it being much hidden by the ankle as it fades.

Maybe I'm wrong about everything I'm going to say below, but just think about it in case what I'm saying may be right.

I'm going to be blunt here: Your case doesn't sound like just a typical release that didn't go as well as desired. It sounds to me like he messed up big time doing endoscopic. At the least he should have made it clear from the outset he was using a more experimental procedure. (Ironically, it could even be that his initial EPF gave you the TTS, although that would be a more common ocurrence and of less culpability, as many here have complained about the same thing.) Especially given your visible pre-surgery swelling, he should've ordered an MRI before operating (the results of which might have completely ruled out even any thought of endoscopic). A while back I once asked in a post what the criteria are for a lawsuit on a surgery gone awry. I hate this country's propensity to sue, and we all are aware of lower success rates for TTS release, but maybe, just maybe, this is an appropriate case for a lawsuit. Whatever, request a copy of your pod's surgical report, for your future docs if nothing else (and keep copies for yourself). Advise not to get any more 'treatment' from him.

In less than a week, Suzanne D, our resident PF expert (well, if she isn't yet, she's going to be :-)) will have a copy of that page I quoted from, and maybe she'll be kind enough to forward it to you if you're interested; it may help to show that page to other doctors and your insurance company.

I'll be very blunt again: I think he snipped a nerve (if you'd like to describe *exactly* where your numbness is now and where it was pre-surgery, maybe we can figure something out) or did something else not so good, requiring careful revision (another, far more difficult surgery). You need someone to repair that damage as best as can be done. (To be very honest, even then it probably won't be anywhere near perfect, as regular release done well often isn't 100% either, but maybe it will be good enough for you to cope with life again.) While many can perform an initial release, only a handful in the U.S. can adequately repair such damage. One is in Houston, there's a few in Baltimore, a few more scattered about. But those two I mentioned earlier who are in Ohio are also of that caliber, and if not up to the task will refer you to those who are.

You keep talking vaguely of waiting for a referral to another doc. I'll reiterate to make as clear as I can that JUST ANOTHER DOC IS NOT GOOD ENOUGH ANYMORE, even if he himself says he is. Do you hear me on this? It has to be one of those who handle serious TTS revision cases. You've got to somehow get a high-resolution MRI on your foot, and a nerve conduction test too (maybe even an Xray if they'll throw that in, because the doc you go to might request it, and if you don't have to pay out of pocket, why do so) and then take the films, results, reports with you for an appointment to one of those two names only. If insurance just won't pay for it, maybe pay the $100 or whatever for that visit out of pocket. Hear what he has to say. (Your wait, while very painful, may be a blessing in disguise, because rushing into a second surgery is unwise, as sometimes one's post-op condition improves with time, and this waiting time will perhaps be long enough to convince the new doc and you that this won't happen.) If surgery is required, only then ask him the fee and if it can be reduced for you as you have no insurance (he may refer you to the billing people). (I am so sorry you have financial pressures, which makes dealing with this all the harder to face.) Once you get their lowest offer, (here's the hard part) if your insurance still won't cover it, get your church or friends to set up a drive to collect the money (I'd guess around $5000 including hospital costs, add another $2000 if they have to cover the MRI and nerve conduction test). I know you'll hate doing that, but you've helped people all your life, now is the time for them to help you. If you have no choice, you have no choice. Funny, while your writing seems to me much more focused lately, I'm starting to ramble. I'm near tears typing this out, but I have to tell you all this, because I think this is your only chance.

With Love, Elliott

Re: Elliott, I feel as tho the life has been zapped from me

Tammie on 2/04/02 at 21:49 (072598)

I dont know if I should scream at you or hit you or hug you right now . Please understand my feelings. I feel like I have been struck by a truck. This day is NOT better and it seems to be getting worse. My husband today fell in his truck at work snow and ice and either tore some ligaments in his knee with a possible medial miniscus tear . After spending the day in er room for this , and knowing he has to go for drug testing in am, and then to a ortho guy I called off work knowing my own foot and pain and it is prime after a weekend of working I could not bare standing any longer. I decided to look and see hopefully some good news somewhere.I almost wish I hadnt.

Please dont take this wrong as I apreciate all the thought and care that you have given to me! I honestly do . I don't know what to say right now. I don't know what to think either. I feel like the lights just went out of me and am to exhausted for words. Please give me time for my response as I have to give it some time to sink in I already read this three times. In meantime please can you give me those names again of the top guys in area. I just don't know what to think or do . I might be this way for the rest of my life? Will it or can it get any worse? I see this pod on fri you know, How do I ask him for a surgery report? I have never done this, will he really give it to me? He is treating my son for ingrown toenails which after being removed have come back again he is to see him also on fri. I dont know if I can handle all this right now.

I am sorry that you feel so upset for me please don't I have faith in God he will always be here for me. And the promise is I will not be given more then I can bare.This to shall pass, It is a promise he gave. There must be something I am to learn thru all of this and I will keep the faith , so that I might deal with it a bit more tomorrow. Tonight I am exhausted. Elliott, thank you for caring really I mean it but please understand if I hope that you are wrong on this.I wonder why no other dr. here has responded to your thoughts? Things keep rolling into my mind about the whole thing I could tell more things that add up such as remember him wanting the return of the vicadon , I remember thinking how his hands shook before my last surgery he seemed so nervous, I had thought he was in a hurry as he had (fit me in special) as he had to be back for office hrs and they were running late. The nurses were rushed with pre oping me. I was sick they were all around me going so fast, I should have said no .We all wanted it behind us and be pain free. Once and for all, he was so sure he was going to heal me. I wish I had stopped him I signed papers you know releasing him from responsibility for something I dont even remember as there were so many things going on.

Elliott, the numbness is minor to me I can live with that, it is the pain the god awful hurting that lasts and lasts. Like knives stuck in there you know a meat clever with red hot sometimes and then I can have a ice cold foot other times where it just does not warm up. No discolor tho. The knot in my foot is about 6 in down from ankle bone and 6 inches up or about 12 inches down from toes on under side of foot that is also where the camera? incision was. Now it is a knot or lump about nickle size. Now first pf release incision is about a inch long right above heal and it goes up and down. The tts release incision goes on a slant or a diagnol from the first incision but with a space between them about a inch. The nubness is under the first scar the ince one that goes up and down.Now I can insert a pin there and not feel it but if you move it farther I can feel it . I tryed it.Moving farther along toward the lump I have some numb feeling but not so numb I cant feel a pin cause I can. I am so confused at this point I dont even remember any thing it all seems jumbled I could read back at posts from surgry and see what I said then. I cant even remeber how many stitches as I dont honestly remember. The pain I do I can tell you about that as it is and has been with me for so very long and no you never get used to it. I dont believe anything will take it away for good either no pill does and no surgery has. If I recall I had this pain before the first surgery tho not as harsh, as things went along the got worse and worse for pain. This is all for tonight I need time to think Thank you and I wont hit you or scream, I will pray harder tonight for all of us here and hope someone anyone that has foot pain gets a miracle so that we all can continue to have faith that we to can be the next healed Have a good night sleep and may the sun shine on your heart tomorrow my friend! I wont hug you as I dont want to offend you but in my heart I am anyways. You are a very good person to try and help me for that you have my warm thanks. (not that I like what you are saying) That cant be helped I like you you are honest and to the point when needed. Tho I dont do to well with the recieving of that much honesty!Takes time for me to let it sink in and apreciate it ! I will work on it tho !

Re: enough talk from me

elliott on 2/04/02 at 22:32 (072604)

Said too much already. Don't assume I'm right either. Just trying to help. Sorry for your continuing troubles. A few very quick points:

The release you sign acknowledges the normal risks of surgery and offers the doc some protection in that regard; nothing sinister about that.

Asking for a copy of your op report is no big deal at all; you can ask the secretary to copy it on the spot from your folder.

I can't make heads or tales about your symptoms. Doesn't matter. You don't need me, you need a good doc. And for heaven's sakes, an MRI. The specialists are Sammarco (I think Cinci) and Conti (I think Cleveland).

All the best. Have a good evening.

Re: Elliott, please understand I do thank u

Tammie on 2/04/02 at 23:57 (072608)

As you see i am still up and yes I reread the post several more times and my reply. I have just passed some time with a good friend chatting away all the troubles of the day. But I kept thinking about what you had said.
There are many nervy sensations besides the former things I had mentioned and at times I am not sure what is worse. They thought my depression might be contributing to my pain, lol and maybe it was but you know the pain has not gotten less and I have taken all the meds like a good girl for nearly a month . I do feel a sense of more calmness and more aceptance in life in general.I hear what u are telling me I really do. First I AM a whiney woman now,(before I could have been labeled a b word)fought tooth and nail for rights of mine or others that were close to me. I seem to need to find that part of me that got lost so that I can fight for myself and my right to find answers and help. I am a wife and mother first and foremost somewhere down the line I appear to lost myself and my self worth. So instead of making this another long story, I will say this you have opened my eyes and mind again and as others have often tried I am sure. I am going to do some searching of thease dr.s again and see what I can do .In all cases I again thank you for your persistance in trying to open my eyes and ears! Maybe this IS my gift tonight and maybe this is a miracle waiting to happen?

Goodnight as I am going to try and get a few hours sleep as soon the new day will begin! I wonder how come you have so much knowledge? Are you a medical profession of sorts? You seem to really understand so much concerning this stuff , or are you a lawyer who has heard so much and are out to save us all? I read and read about this stuff and what I retain is so minamal it is frightening.Very short memory. Ok no sap tonight just a plain thank you and look foward to your smart words on the board.Cause noone can take that from you , you do have knowledge.

Re: Tammie

wendyn on 2/05/02 at 07:54 (072617)

Tammie, I don't know if it will be any consolation or not....

When my pain was really bad - people walked all over me.

I didn't have enough energy in me to even consider confronting someone who treated me badly. It's not that I like to fight with people, but I generally have the energy to have a healthy discussion with someone who may not agree with me. I can usually assert myself enough to ask questions at a doctors office - or at least have an intelligent conversation. But for about a year, mostly I just cried at the doctors office.

The nurses at my doctors office treated me badly, so I hung up the phone and cried for half an hour. I couldn't possibly gather the energy or motivation to actually do anything about it.

I think long term intense pain has away of taking everything away from you - no matter how strong you were before.

I think this is where you really need an advocate to step in for you - your husband, your family doctor, or a friend? Is there anyone who can do the foot stomping and high energy work that might be needed?

Please don't blame yourself for the emotional drain you have right now - I really think it comes with the territory and there are lots of us here who know where you're coming from.

Re: I'll be more than glad to pass along the information...

Suzanne D on 2/05/02 at 14:28 (072650)

Tammie, I will be happy to send to you the page Elliott said he would include in what he is mailing to me. If you - or anyone else - would like a copy of this material, if you will e-mail me and give me your regular mailing address, I will be happy to send it to you. I thank Elliott for making this information from FOOT AND ANKLE DISORDERS available to us.

(email removed)

Re: Amen to what Wendy said...

Suzanne D on 2/05/02 at 14:44 (072651)

Long term pain - of any type - can leave one emotionally drained. When you're in that state, it is hard to even think clearly- much less be assertive.

What Wendy and Elliott have said really makes sense. Don't blame yourself at all, and, as Elliott said, you've helped others all your life, let others help you now.

If you would like the page Elliott quoted from, I will be happy to send it to you if you will e-mail your address to me. I hope so much that you can get to one of those special doctors Elliott mentioned. Your case seems to be so unique. Many here have prayed and are praying for you, Tammie! Perhaps your prayers may be answered through one of those doctors who could 'straighten out' any previous surgery and other foot problems you may have.

I know it's not as simple to do as to say...but I hope you can. And if, in the end, insurance won't cover what you need done, I thought Elliott's idea of a church or other group coordinating an effort to help was a good one. If it comes to that, feel free to give my e-mail address to anyone in your area who would be in charge of such a fund-raiser. I would be glad to relay their information to this board and make people here who care about you aware of what is being done so that we would be able to help in any ways we could. Please don't let thoughts of that embarass you. You would do that for us, I believe.

Hang in there, Tammie! :-)

Re: Tammie

Shelley on 2/05/02 at 17:47 (072678)

Tammie, I agree totally with wendyn about the advocate to step in and help you. I've watched my husband, a normally very assertive person sit silently in the exam room in the doctor's office and listen to the 'wait and see' or 'I don't know what to tell you' and appear to be powerless to respond in his pre-pain manner. It's very evident to me that living in constant pain takes all of your energy leaving nothing let to fight with. I have been going along with my husband to all of his doctor's appointments (at his request surprisingly enough). I believe there came a time when he realized he didn't have the energy to pursue yet another conversation about his condition. If you have someone in your life that would be helpful to you in this area, I would encourage you to ask them to be with you during your visits to the doctor. Another set of ears can also be helpful, as they are in any situation. Best of luck to you.

Shelley

Re: Tammie

nancy s. on 2/05/02 at 17:59 (072681)

i agree wholeheartedly with the advocate idea. in fact, when dealing with something medically confusing or frightening, i think it's crucial to have someone with you at appointments.

and it helps if that person *takes notes* -- because even the sharpest of us can walk out of the doctor's office and in three minutes be able to recall only a third or a quarter of what was said.

i also go IN to the doctor's office with all my questions written down, even the simple ones i'm absolutely sure i'll remember (because i'm wrong!). i start writing them down a day or two before the appointment, because the list may look complete and then, suddenly, 'Whoa, here's another thing i've forgotten to ask for the last fifty weeks.'
nancy

Re: you mean endoscopic surgery *should* be only for PF (if that)

BrianG on 2/05/02 at 23:54 (072743)

Thanks Elliott, this is the first I've heard about using the endoscopic technique for TTS. I guess it's because I have PF, and only looked that far, not into TTS.

I have to wonder if TTS is an approved use for the EPF kits?

BCG

Re: you mean endoscopic surgery *should* be only for PF (if that)

Ed Davis, DPM on 2/06/02 at 00:56 (072748)

Three potential problems exist with use of the endoscope for tarsal tunnel release (as I see it):

1) The existing instrumentation may not be sufficiently delicate to avoid trauma to the nerve. This, of course is subject to change.

2)The endoscopic technique basically allows cutting of the laciniate ligament, the roof over the tarsal tunnel that we assume to be constrictive. The technique does not allow removal of masses--growths, varicosities, etc. potentially to be found in the tarsal tunnel. The surgeon enters the operation with the assumption that the laciniate ligament is the only culprit.

3) Release at the porta pedis cannot be done via endocope, to the best of my knowledge. This is sort of the 'new frontier' in that many hypothesize that the porta pedis area may be an area of entrapment overlooked in traditional TTS surgery and may be a reason for the only fair success rate often noted.
Ed

Re: wendy's post on spirit and strength

Stevew on 2/08/02 at 05:16 (072999)

'I think long term intense pain has away of taking everything away from you - no matter how strong you were before.' (quoting Wendy)

This is a great statement from Wendy, I know it is true in my case - this long term pain has taken a large part of my spirit.

Plus, not only do we have the chronic pain, we also have the uncertainty of dealing with a condition that most docs have seldom heard of.

I am starting to do more relaxation techniques - and even checking out the Silent Unity prayer site. My aunt was a ballet teacher until she was 90 and she was a big believer in the type of positive prayers that Unity uses. They have had a prayer group praying 24 hrs a day for over 100 years.

I am NOT posting this to preach religion to anyone, but I know that lots of people feel like they are 'less' than they were. People who get TTS tend to be active, hard charging, 'strong' people and TTS is a curse for a person who was very active.

The pain and uncertainty has taken a real toll on me and I want to try and regain some of my old spirit back ...

Steve W.

Re: Pain and relaxation

Julie on 2/08/02 at 07:13 (073007)

Hi Steve

Your post has struck a deep chord with me. You are certainly on the right track here. Relaxation techniques are extremely helpful in dealing with pain, as several of us have discovered: Wendy, Laurie who has been using biofeedback, myself, and doubtless others.

In our - necessary - efforts to overcome pain, to get rid of it, we may not realize that in rejecting pain as 'bad' we make things more difficult for ourselves. We fight our pain, and tense ourselves against it both physically and emotionally, and this intensifies it. The resulting vicious cycle of tension, increased pain and anxiety ultimately invades every aspect of our life. The pain itself is only partly responsible for that sapping of our energy. It's that whole vicious cycle, and it can be broken.

Learning to relax teaches us to let go, not just of the tension but of the whole 'pain is the enemy' mind-set. In letting go we come to an acceptance of things as they are, of all the realities of our situation, including our pain, and it then becomes possible to deal with them. We may even come to see that our pain has something to teach us, and it can then lead us on a journey of self-discovery. I've experienced this myself, when dealing with post-surgery pain and with the whole experience of coming to terms with cancer, and have observed it in others to whom I've taught relaxation and meditation.

Although I've had no experience of dealing with severe, life-altering long-term chronic pain (my relatively short-lived 5-month case of PF, now behind me, doesn't really qualify) I've no doubt that relaxation is equally useful in that more challenging situation, and there has been much research over a long period to demonstrate it (see Ainslie Mears: Relief Without Drugs for starters).

The key to relaxation (and to meditation) whatever technique is used, is breath awareness: allowing the natural breath to flow, and observing it. Focusing on the out breath, allowing it to be full and complete: exhalation is the part of the breath cycle that calms the sympathetic and activates the parasympathetic nervous system, and so releases tension. When the tension goes, and we've reached a state of relaxation, we've created the optimum conditions for self-healing, on all levels.

And prayer, of course, is also extremely helpful. When I was ill, a friend wrote to me saying 'When you know you need help you have to ask for it, really ask'. This is what we do in prayer, and the help comes, usually in ways we weren't expecting or looking for, but it comes.

I wish you and everyone here success in living with pain and, in time, living free of it.

All the best

Julie

Re: Steve...without getting too personal

Shelley G on 2/08/02 at 17:54 (073085)

Steve, your website was the first TTS one I found and I continue to access it. Thank you. I'm wondering what sort of changes you've had to make in your life to live with TTS and how has it affected your family and friends. I realize this question is a little intrusive, but I ask it because I think my husband feels like he is really letting his family and friends down because of his limitations and he wonders if he is just being a 'weenie' as he puts it.

Thanks,
Shelley

Re: Steve...without getting too personal

Stevew on 2/08/02 at 19:22 (073093)

How has TTS changed my life and changed my circle of friends? First, my cirle of friends is smaller.

I was such a hard charging outdoorsman and so active in my job that my friends did not really believe it when I said I was in a lot of pain. That still hurts - when someone who should know you thinks you are faking or magnifing your pain to get sympathy or get out of work. That used to hurt more than the TTS pain. They arn't my friends anymore, and I don't miss them.

I used to work in home health, visiting people with severe mental illness in their homes. I also did a lot of suicide crisis counseling. I don't do that anymore and have no desire to.

On the brighter side I learned how to make web pages (like my TTS page) while I was recouperating from surgery. However, now I have a compressed siatic nerve in my leg probably due too mhch sitting and surfing the net.

As Gilda Radner used to say ... 'If it ain't one thing, then it's another'.

-- Steve W.

PS: really glad heelspurs.com and all of you folks are here.

Re: EPF is for PF only

BrianG on 2/03/02 at 13:27 (072428)

Hi Eliott,

I may be wrong, but I believe the endoscopic surgery is only used for PF.

BCG

Re: you mean endoscopic surgery *should* be only for PF (if that)

elliott on 2/03/02 at 14:12 (072434)

Check out these links:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8081329&dopt=Abstract

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8807482&dopt=Abstract

The authors are pods. I believe the second link claims 100% success (surprise, surprise), on I believe a sample of size 5. An orthopedic journal expressing skepticism explains why this is not such a good idea. Let's hear from Tammie first.

---

Re: Tammie

Tammie on 2/03/02 at 17:38 (072470)

Elliott,
I believe I am not positive but I will ask again. I know he said the one incision on the bottom , in fact where the lump is was for the camera? (that was just maybe 3 stitches)The other on the side (inside )ankle was where he cut which was maybe 1 inch again I am guessing ,( i asked hubby he says yes that was what they did both times .First for the pf then for the tts. What are you getting at? Remember (plain english ) for me . I get to lost in medical jargin and fillers. Now he did tell me several times the intital outside incision is very small, but the incision in the foot is much larger cause he told me dont for get that what I see on outside is not what he worries about it is on the inside. Again he kept telling me it is wonderful to be able to use this type of surgery as the outside has less scaring,( I dont care I am not vain ) I told him cut the hole dang foot just fix it. I told him that right before I fell asleep do or cut it so you can be SURE that you get everything done right this time.

We are led to believe this is a aceptable way that things like this get done, are you thinking it is not so? Please tell me as he still has a hand in my care right now.I already crawl I dont want to be in a wheelchair also.(which after a day like today it might almost be worth the dignity issue of mine)This could be in my nearest of future if I dont get some relief some where.I see my primary tomorrow and again I will beg for some help or referral to a new dr. anything at all to find some help.

But I have a gut feeling I am NOT going to get much help from anyone,least of all my insurance co.which is absoulutly worthless! And my own finances suck, as we have deleted any savings per say that we ever had.And a husband who deems home improvements are needed no matter what we make,there is plastic and he uses well. Now he is walking around with his stiff leg after a flare up with RA and bowling. So this is life and it sucks today , but then there is tomorrow to hope for a new day!

Re: Tammie

elliott on 2/04/02 at 16:07 (072554)

It sure sounds like he did an endoscopic; I was afraid of that.

I have in front of me a $300, two-volume reference, 'Foot & Ankle Disorders,' Mark Myerson, Ed., W. B. Saunders (2000), rapidly becoming a mandatory standard ref on many a foot doc's shelf. (By unbelievable good fortune I happen to have the set on short-term loan.) In it is an article written by Steven L. Haddad (Professor at Northwestern University Dept of Orthopedics in Chicago as well as Director of Foot & Ankle Services at Evanston Hospital) titled 'Compressive Neuropathies of the Foot and Ankle.' It describes all the usual nerve problems and goes through the discussion of how to perform a standard tarsal tunnel release. At the end of that, it gives a discussion of endoscopic TTS release, introduced by two pods only in the '90s. There's even a picture in the article of where the incisions are made, so you can compare. Here is the last paragraph of this section:

'Although this technique sounds promising, it is difficult to rationalize the near 100% success rate reported by the authors. The many carefully controlled studies concerning open release of the tunnel document at best a 78% success rate (good or excellent), and more stringent criteria document a 44% success rate. In addition, the one circumstance in which excellent results are often found with decompression, removal of a space-occupying lesion within the tunnel, cannot be thoroughly addressed by this procedure because the lesion cannot be excised. The risk of injury to surrounding structures as well as damage to the nerve categorizes this procedure as experimental.'

In short, Tammie, endoscopic TT release is not mainstream and carries high risk. I can tell you firsthand that none of the big TTS names perform their surgery that way. The bigger scar of the open procedure is not even that big or even that hideous, it being much hidden by the ankle as it fades.

Maybe I'm wrong about everything I'm going to say below, but just think about it in case what I'm saying may be right.

I'm going to be blunt here: Your case doesn't sound like just a typical release that didn't go as well as desired. It sounds to me like he messed up big time doing endoscopic. At the least he should have made it clear from the outset he was using a more experimental procedure. (Ironically, it could even be that his initial EPF gave you the TTS, although that would be a more common ocurrence and of less culpability, as many here have complained about the same thing.) Especially given your visible pre-surgery swelling, he should've ordered an MRI before operating (the results of which might have completely ruled out even any thought of endoscopic). A while back I once asked in a post what the criteria are for a lawsuit on a surgery gone awry. I hate this country's propensity to sue, and we all are aware of lower success rates for TTS release, but maybe, just maybe, this is an appropriate case for a lawsuit. Whatever, request a copy of your pod's surgical report, for your future docs if nothing else (and keep copies for yourself). Advise not to get any more 'treatment' from him.

In less than a week, Suzanne D, our resident PF expert (well, if she isn't yet, she's going to be :-)) will have a copy of that page I quoted from, and maybe she'll be kind enough to forward it to you if you're interested; it may help to show that page to other doctors and your insurance company.

I'll be very blunt again: I think he snipped a nerve (if you'd like to describe *exactly* where your numbness is now and where it was pre-surgery, maybe we can figure something out) or did something else not so good, requiring careful revision (another, far more difficult surgery). You need someone to repair that damage as best as can be done. (To be very honest, even then it probably won't be anywhere near perfect, as regular release done well often isn't 100% either, but maybe it will be good enough for you to cope with life again.) While many can perform an initial release, only a handful in the U.S. can adequately repair such damage. One is in Houston, there's a few in Baltimore, a few more scattered about. But those two I mentioned earlier who are in Ohio are also of that caliber, and if not up to the task will refer you to those who are.

You keep talking vaguely of waiting for a referral to another doc. I'll reiterate to make as clear as I can that JUST ANOTHER DOC IS NOT GOOD ENOUGH ANYMORE, even if he himself says he is. Do you hear me on this? It has to be one of those who handle serious TTS revision cases. You've got to somehow get a high-resolution MRI on your foot, and a nerve conduction test too (maybe even an Xray if they'll throw that in, because the doc you go to might request it, and if you don't have to pay out of pocket, why do so) and then take the films, results, reports with you for an appointment to one of those two names only. If insurance just won't pay for it, maybe pay the $100 or whatever for that visit out of pocket. Hear what he has to say. (Your wait, while very painful, may be a blessing in disguise, because rushing into a second surgery is unwise, as sometimes one's post-op condition improves with time, and this waiting time will perhaps be long enough to convince the new doc and you that this won't happen.) If surgery is required, only then ask him the fee and if it can be reduced for you as you have no insurance (he may refer you to the billing people). (I am so sorry you have financial pressures, which makes dealing with this all the harder to face.) Once you get their lowest offer, (here's the hard part) if your insurance still won't cover it, get your church or friends to set up a drive to collect the money (I'd guess around $5000 including hospital costs, add another $2000 if they have to cover the MRI and nerve conduction test). I know you'll hate doing that, but you've helped people all your life, now is the time for them to help you. If you have no choice, you have no choice. Funny, while your writing seems to me much more focused lately, I'm starting to ramble. I'm near tears typing this out, but I have to tell you all this, because I think this is your only chance.

With Love, Elliott

Re: Elliott, I feel as tho the life has been zapped from me

Tammie on 2/04/02 at 21:49 (072598)

I dont know if I should scream at you or hit you or hug you right now . Please understand my feelings. I feel like I have been struck by a truck. This day is NOT better and it seems to be getting worse. My husband today fell in his truck at work snow and ice and either tore some ligaments in his knee with a possible medial miniscus tear . After spending the day in er room for this , and knowing he has to go for drug testing in am, and then to a ortho guy I called off work knowing my own foot and pain and it is prime after a weekend of working I could not bare standing any longer. I decided to look and see hopefully some good news somewhere.I almost wish I hadnt.

Please dont take this wrong as I apreciate all the thought and care that you have given to me! I honestly do . I don't know what to say right now. I don't know what to think either. I feel like the lights just went out of me and am to exhausted for words. Please give me time for my response as I have to give it some time to sink in I already read this three times. In meantime please can you give me those names again of the top guys in area. I just don't know what to think or do . I might be this way for the rest of my life? Will it or can it get any worse? I see this pod on fri you know, How do I ask him for a surgery report? I have never done this, will he really give it to me? He is treating my son for ingrown toenails which after being removed have come back again he is to see him also on fri. I dont know if I can handle all this right now.

I am sorry that you feel so upset for me please don't I have faith in God he will always be here for me. And the promise is I will not be given more then I can bare.This to shall pass, It is a promise he gave. There must be something I am to learn thru all of this and I will keep the faith , so that I might deal with it a bit more tomorrow. Tonight I am exhausted. Elliott, thank you for caring really I mean it but please understand if I hope that you are wrong on this.I wonder why no other dr. here has responded to your thoughts? Things keep rolling into my mind about the whole thing I could tell more things that add up such as remember him wanting the return of the vicadon , I remember thinking how his hands shook before my last surgery he seemed so nervous, I had thought he was in a hurry as he had (fit me in special) as he had to be back for office hrs and they were running late. The nurses were rushed with pre oping me. I was sick they were all around me going so fast, I should have said no .We all wanted it behind us and be pain free. Once and for all, he was so sure he was going to heal me. I wish I had stopped him I signed papers you know releasing him from responsibility for something I dont even remember as there were so many things going on.

Elliott, the numbness is minor to me I can live with that, it is the pain the god awful hurting that lasts and lasts. Like knives stuck in there you know a meat clever with red hot sometimes and then I can have a ice cold foot other times where it just does not warm up. No discolor tho. The knot in my foot is about 6 in down from ankle bone and 6 inches up or about 12 inches down from toes on under side of foot that is also where the camera? incision was. Now it is a knot or lump about nickle size. Now first pf release incision is about a inch long right above heal and it goes up and down. The tts release incision goes on a slant or a diagnol from the first incision but with a space between them about a inch. The nubness is under the first scar the ince one that goes up and down.Now I can insert a pin there and not feel it but if you move it farther I can feel it . I tryed it.Moving farther along toward the lump I have some numb feeling but not so numb I cant feel a pin cause I can. I am so confused at this point I dont even remember any thing it all seems jumbled I could read back at posts from surgry and see what I said then. I cant even remeber how many stitches as I dont honestly remember. The pain I do I can tell you about that as it is and has been with me for so very long and no you never get used to it. I dont believe anything will take it away for good either no pill does and no surgery has. If I recall I had this pain before the first surgery tho not as harsh, as things went along the got worse and worse for pain. This is all for tonight I need time to think Thank you and I wont hit you or scream, I will pray harder tonight for all of us here and hope someone anyone that has foot pain gets a miracle so that we all can continue to have faith that we to can be the next healed Have a good night sleep and may the sun shine on your heart tomorrow my friend! I wont hug you as I dont want to offend you but in my heart I am anyways. You are a very good person to try and help me for that you have my warm thanks. (not that I like what you are saying) That cant be helped I like you you are honest and to the point when needed. Tho I dont do to well with the recieving of that much honesty!Takes time for me to let it sink in and apreciate it ! I will work on it tho !

Re: enough talk from me

elliott on 2/04/02 at 22:32 (072604)

Said too much already. Don't assume I'm right either. Just trying to help. Sorry for your continuing troubles. A few very quick points:

The release you sign acknowledges the normal risks of surgery and offers the doc some protection in that regard; nothing sinister about that.

Asking for a copy of your op report is no big deal at all; you can ask the secretary to copy it on the spot from your folder.

I can't make heads or tales about your symptoms. Doesn't matter. You don't need me, you need a good doc. And for heaven's sakes, an MRI. The specialists are Sammarco (I think Cinci) and Conti (I think Cleveland).

All the best. Have a good evening.

Re: Elliott, please understand I do thank u

Tammie on 2/04/02 at 23:57 (072608)

As you see i am still up and yes I reread the post several more times and my reply. I have just passed some time with a good friend chatting away all the troubles of the day. But I kept thinking about what you had said.
There are many nervy sensations besides the former things I had mentioned and at times I am not sure what is worse. They thought my depression might be contributing to my pain, lol and maybe it was but you know the pain has not gotten less and I have taken all the meds like a good girl for nearly a month . I do feel a sense of more calmness and more aceptance in life in general.I hear what u are telling me I really do. First I AM a whiney woman now,(before I could have been labeled a b word)fought tooth and nail for rights of mine or others that were close to me. I seem to need to find that part of me that got lost so that I can fight for myself and my right to find answers and help. I am a wife and mother first and foremost somewhere down the line I appear to lost myself and my self worth. So instead of making this another long story, I will say this you have opened my eyes and mind again and as others have often tried I am sure. I am going to do some searching of thease dr.s again and see what I can do .In all cases I again thank you for your persistance in trying to open my eyes and ears! Maybe this IS my gift tonight and maybe this is a miracle waiting to happen?

Goodnight as I am going to try and get a few hours sleep as soon the new day will begin! I wonder how come you have so much knowledge? Are you a medical profession of sorts? You seem to really understand so much concerning this stuff , or are you a lawyer who has heard so much and are out to save us all? I read and read about this stuff and what I retain is so minamal it is frightening.Very short memory. Ok no sap tonight just a plain thank you and look foward to your smart words on the board.Cause noone can take that from you , you do have knowledge.

Re: Tammie

wendyn on 2/05/02 at 07:54 (072617)

Tammie, I don't know if it will be any consolation or not....

When my pain was really bad - people walked all over me.

I didn't have enough energy in me to even consider confronting someone who treated me badly. It's not that I like to fight with people, but I generally have the energy to have a healthy discussion with someone who may not agree with me. I can usually assert myself enough to ask questions at a doctors office - or at least have an intelligent conversation. But for about a year, mostly I just cried at the doctors office.

The nurses at my doctors office treated me badly, so I hung up the phone and cried for half an hour. I couldn't possibly gather the energy or motivation to actually do anything about it.

I think long term intense pain has away of taking everything away from you - no matter how strong you were before.

I think this is where you really need an advocate to step in for you - your husband, your family doctor, or a friend? Is there anyone who can do the foot stomping and high energy work that might be needed?

Please don't blame yourself for the emotional drain you have right now - I really think it comes with the territory and there are lots of us here who know where you're coming from.

Re: I'll be more than glad to pass along the information...

Suzanne D on 2/05/02 at 14:28 (072650)

Tammie, I will be happy to send to you the page Elliott said he would include in what he is mailing to me. If you - or anyone else - would like a copy of this material, if you will e-mail me and give me your regular mailing address, I will be happy to send it to you. I thank Elliott for making this information from FOOT AND ANKLE DISORDERS available to us.

(email removed)

Re: Amen to what Wendy said...

Suzanne D on 2/05/02 at 14:44 (072651)

Long term pain - of any type - can leave one emotionally drained. When you're in that state, it is hard to even think clearly- much less be assertive.

What Wendy and Elliott have said really makes sense. Don't blame yourself at all, and, as Elliott said, you've helped others all your life, let others help you now.

If you would like the page Elliott quoted from, I will be happy to send it to you if you will e-mail your address to me. I hope so much that you can get to one of those special doctors Elliott mentioned. Your case seems to be so unique. Many here have prayed and are praying for you, Tammie! Perhaps your prayers may be answered through one of those doctors who could 'straighten out' any previous surgery and other foot problems you may have.

I know it's not as simple to do as to say...but I hope you can. And if, in the end, insurance won't cover what you need done, I thought Elliott's idea of a church or other group coordinating an effort to help was a good one. If it comes to that, feel free to give my e-mail address to anyone in your area who would be in charge of such a fund-raiser. I would be glad to relay their information to this board and make people here who care about you aware of what is being done so that we would be able to help in any ways we could. Please don't let thoughts of that embarass you. You would do that for us, I believe.

Hang in there, Tammie! :-)

Re: Tammie

Shelley on 2/05/02 at 17:47 (072678)

Tammie, I agree totally with wendyn about the advocate to step in and help you. I've watched my husband, a normally very assertive person sit silently in the exam room in the doctor's office and listen to the 'wait and see' or 'I don't know what to tell you' and appear to be powerless to respond in his pre-pain manner. It's very evident to me that living in constant pain takes all of your energy leaving nothing let to fight with. I have been going along with my husband to all of his doctor's appointments (at his request surprisingly enough). I believe there came a time when he realized he didn't have the energy to pursue yet another conversation about his condition. If you have someone in your life that would be helpful to you in this area, I would encourage you to ask them to be with you during your visits to the doctor. Another set of ears can also be helpful, as they are in any situation. Best of luck to you.

Shelley

Re: Tammie

nancy s. on 2/05/02 at 17:59 (072681)

i agree wholeheartedly with the advocate idea. in fact, when dealing with something medically confusing or frightening, i think it's crucial to have someone with you at appointments.

and it helps if that person *takes notes* -- because even the sharpest of us can walk out of the doctor's office and in three minutes be able to recall only a third or a quarter of what was said.

i also go IN to the doctor's office with all my questions written down, even the simple ones i'm absolutely sure i'll remember (because i'm wrong!). i start writing them down a day or two before the appointment, because the list may look complete and then, suddenly, 'Whoa, here's another thing i've forgotten to ask for the last fifty weeks.'
nancy

Re: you mean endoscopic surgery *should* be only for PF (if that)

BrianG on 2/05/02 at 23:54 (072743)

Thanks Elliott, this is the first I've heard about using the endoscopic technique for TTS. I guess it's because I have PF, and only looked that far, not into TTS.

I have to wonder if TTS is an approved use for the EPF kits?

BCG

Re: you mean endoscopic surgery *should* be only for PF (if that)

Ed Davis, DPM on 2/06/02 at 00:56 (072748)

Three potential problems exist with use of the endoscope for tarsal tunnel release (as I see it):

1) The existing instrumentation may not be sufficiently delicate to avoid trauma to the nerve. This, of course is subject to change.

2)The endoscopic technique basically allows cutting of the laciniate ligament, the roof over the tarsal tunnel that we assume to be constrictive. The technique does not allow removal of masses--growths, varicosities, etc. potentially to be found in the tarsal tunnel. The surgeon enters the operation with the assumption that the laciniate ligament is the only culprit.

3) Release at the porta pedis cannot be done via endocope, to the best of my knowledge. This is sort of the 'new frontier' in that many hypothesize that the porta pedis area may be an area of entrapment overlooked in traditional TTS surgery and may be a reason for the only fair success rate often noted.
Ed

Re: wendy's post on spirit and strength

Stevew on 2/08/02 at 05:16 (072999)

'I think long term intense pain has away of taking everything away from you - no matter how strong you were before.' (quoting Wendy)

This is a great statement from Wendy, I know it is true in my case - this long term pain has taken a large part of my spirit.

Plus, not only do we have the chronic pain, we also have the uncertainty of dealing with a condition that most docs have seldom heard of.

I am starting to do more relaxation techniques - and even checking out the Silent Unity prayer site. My aunt was a ballet teacher until she was 90 and she was a big believer in the type of positive prayers that Unity uses. They have had a prayer group praying 24 hrs a day for over 100 years.

I am NOT posting this to preach religion to anyone, but I know that lots of people feel like they are 'less' than they were. People who get TTS tend to be active, hard charging, 'strong' people and TTS is a curse for a person who was very active.

The pain and uncertainty has taken a real toll on me and I want to try and regain some of my old spirit back ...

Steve W.

Re: Pain and relaxation

Julie on 2/08/02 at 07:13 (073007)

Hi Steve

Your post has struck a deep chord with me. You are certainly on the right track here. Relaxation techniques are extremely helpful in dealing with pain, as several of us have discovered: Wendy, Laurie who has been using biofeedback, myself, and doubtless others.

In our - necessary - efforts to overcome pain, to get rid of it, we may not realize that in rejecting pain as 'bad' we make things more difficult for ourselves. We fight our pain, and tense ourselves against it both physically and emotionally, and this intensifies it. The resulting vicious cycle of tension, increased pain and anxiety ultimately invades every aspect of our life. The pain itself is only partly responsible for that sapping of our energy. It's that whole vicious cycle, and it can be broken.

Learning to relax teaches us to let go, not just of the tension but of the whole 'pain is the enemy' mind-set. In letting go we come to an acceptance of things as they are, of all the realities of our situation, including our pain, and it then becomes possible to deal with them. We may even come to see that our pain has something to teach us, and it can then lead us on a journey of self-discovery. I've experienced this myself, when dealing with post-surgery pain and with the whole experience of coming to terms with cancer, and have observed it in others to whom I've taught relaxation and meditation.

Although I've had no experience of dealing with severe, life-altering long-term chronic pain (my relatively short-lived 5-month case of PF, now behind me, doesn't really qualify) I've no doubt that relaxation is equally useful in that more challenging situation, and there has been much research over a long period to demonstrate it (see Ainslie Mears: Relief Without Drugs for starters).

The key to relaxation (and to meditation) whatever technique is used, is breath awareness: allowing the natural breath to flow, and observing it. Focusing on the out breath, allowing it to be full and complete: exhalation is the part of the breath cycle that calms the sympathetic and activates the parasympathetic nervous system, and so releases tension. When the tension goes, and we've reached a state of relaxation, we've created the optimum conditions for self-healing, on all levels.

And prayer, of course, is also extremely helpful. When I was ill, a friend wrote to me saying 'When you know you need help you have to ask for it, really ask'. This is what we do in prayer, and the help comes, usually in ways we weren't expecting or looking for, but it comes.

I wish you and everyone here success in living with pain and, in time, living free of it.

All the best

Julie

Re: Steve...without getting too personal

Shelley G on 2/08/02 at 17:54 (073085)

Steve, your website was the first TTS one I found and I continue to access it. Thank you. I'm wondering what sort of changes you've had to make in your life to live with TTS and how has it affected your family and friends. I realize this question is a little intrusive, but I ask it because I think my husband feels like he is really letting his family and friends down because of his limitations and he wonders if he is just being a 'weenie' as he puts it.

Thanks,
Shelley

Re: Steve...without getting too personal

Stevew on 2/08/02 at 19:22 (073093)

How has TTS changed my life and changed my circle of friends? First, my cirle of friends is smaller.

I was such a hard charging outdoorsman and so active in my job that my friends did not really believe it when I said I was in a lot of pain. That still hurts - when someone who should know you thinks you are faking or magnifing your pain to get sympathy or get out of work. That used to hurt more than the TTS pain. They arn't my friends anymore, and I don't miss them.

I used to work in home health, visiting people with severe mental illness in their homes. I also did a lot of suicide crisis counseling. I don't do that anymore and have no desire to.

On the brighter side I learned how to make web pages (like my TTS page) while I was recouperating from surgery. However, now I have a compressed siatic nerve in my leg probably due too mhch sitting and surfing the net.

As Gilda Radner used to say ... 'If it ain't one thing, then it's another'.

-- Steve W.

PS: really glad heelspurs.com and all of you folks are here.