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bilateral tarsal tunnel

Posted by wendyg on 1/11/02 at 17:49 (069674)

I have had tarsal tunnel for almost seven years. Have tried numerous treatments. I had tts surgery a year ago and am worse than I was. I have nerve damage I believe from the dressing. This has created what they call complex regional pain syndrome. This 'crps' can spread and makes further surgery probably out of the question. I would like to find someone who is a specialist in tss. The dr. that manages the crps does not understand tss nor does he seem to care about it. The dr. for tss would have to be willing to try to understand crps. It's a real dilema and I do not know where to turn. Hoping to find a dr. in New England
Thanks
Wendyg

Re: bilateral tarsal tunnel

wendyn on 1/11/02 at 19:43 (069690)

Wendy - it is difficult to differentiate between TTS and CRPS. CRPS is often misdiagnosed as 'just' TTS. You are probably better off to stick with the CRPS doctor and pursue that route. The objective will probably to get the nerve pain under control - and avoid further neural irritation.

Can you provide a history of what happened prior to your surgery?

Re: bilateral tarsal tunnel

Mike S. on 1/11/02 at 21:41 (069707)

I have been diagnosed with bilateral TTS, see my previous thread 'Does Bilateral TTS Suggest Anything'. CRPS doesn't sound like anything specific; sounds like 'peripheral neuropathy' which is a condition. You have to find out what is causing CRPS. I don't know anything about CRPS. I do know I was told that I had PN & I had to find out what was causing it. Then I was told I had TTS & I was thrilled...I found out what was causing my PN, BUT now the question is 'what is causing the TTS.

Re: bilateral tarsal tunnel

wendyn on 1/12/02 at 01:06 (069713)

CRPS and neuropathy (to the best of my knowledge) cannot be considered the same thing. CRPS can start as a nerve injury - but it can develop into much more.

Re: bilateral tarsal tunnel

wendyg on 1/13/02 at 10:34 (069854)

Thank you wendyn for your advice. My symptons started 6 and 1/2 years ago after running on the treadmill 4 miles on an incline. I had been using the treadmill for years but did not usually go for extended time on an incline. The day following that run my feet were slightly stiff and continued to be so. Ten days after the incident my both ankles became acutely swollen. I checked with a dr. friend who thought it sounded like achilles tenonditis. I treated it with motrin and tried to rest. After two weeks the swelling improved but the pain did not. I had pain at both achilles areas and the inside of the ankles into the foot. The pain was improved after sleep but increased as the day went on. My job requires me to be on my feet all day on cement floors. This continued so I saw an arthritis specalist who tried me on multiple anti inflamatories which never helped. I then tried an orthopedic dr who wanted me to go into a cast for 6 weeks and then repeat for the other foot believing I had tendonitis. I chose to seek a second opinion who but me in a removable cast boot for 6 weeks. That did not help so that dr. sent me to another ortho guy who's specialty was foot and ankle. He didn't know what was wrong but suggested six weeks off of work to rest. I wasn't comfortable with that because he really did not know what was wrong he seemed to be grasping at straws. I went back to the original orhto dr. who tried the cast boot again and when that failed suggested wurgery to trim the heel bone believing that was irritating the achilles. I could understand that because thru all of this I had pain at that sight and could not tolerate shoes touching the back of my heel. I did ask him if that really was what was going on why was the pain so severe when I stood in one place. I went thru surgery, wore a cast for 4 weeks. When I returned to work the pain at the tarsal site continued.I tried orthodics and returned to the dr. He then said to use the orthodics and give it a year. I did that but contined with pain. When I returned to him he injected the inner foot with cortisone. Once he knew that did not work he told me he did not know what was wrong and had nothing more to offer me. I then tried a podiatrist who again injected me with cortisone and had me wear ankle braces. Once that proved to not help he suggested changes in my orthodics. While working with the orthodics guy I met another podiatrist who listened to my story and said I had tarsal tunnel just from my history. I then had nerve test which were positive for tss. I had surgery for the release. I had spinal anesthesia so when that wore off I had unbearable pain on the top of my foot. I was medicated numerous times with no relief. The nurses talked to him a number of times about the pain. I had to be admitted on a morphine pump for pain control. The next day I removed the bandage because the pain was starting up again. I had ace wrap then a plastic night splint on then another ace and a guaze wrap. the quaze wrap was twisted where the ankle and foot connect on the top of my foot. Since surgery I have had burning pain on the top of my foot down to my toes. I also have a nerve inside my leg near the knee that runs up my leg that also burns. The whole leg is about a degree colder and sometimes the foot is frozen. I have seen several dr. who say it is the crps. I have had spinal blocks which one worked but others did not so that is not an option. I have tried numerous medications which have not helped. I did have a brier block which has helped and can be repeated as needed. There is no cure for this only pain control. My problem is that the tarsal tunnel is not fixed and continues to alter my life. Work is the rearl issue because I cannot tolerate being on my feet. The tts screams but also these nerves invoved with the crps are triggered by my walking because of the friction of the shoes. I can't even tolerate pajama bottoms brushing the top of my foot. At this time I am doing a desk job but that is only temporary and because I have a nice boss. There is no permanent position for a sit down job. This is why I need someone knowledgable about tss but also crps to help me decide what to do. Further surgery is out of the question because this crps can spread and surgery could certainly trigger it. I know this is a very long story but it's been a very long 6 and 1/2 yrs. and there does not seem to be an end in site. Thanks for reading this and any suggestions would be great. wendyg

Re: bilateral tarsal tunnel

elliott on 1/13/02 at 11:56 (069860)

Can I ask where you live (just in case I heard of a doc in your area)? And how far are you willing to travel to see such a specialist? (If it's to seek advice on medication, one visit might suffice.)

If you definitely are ruling out more surgery, you may not need a TTS specialist per se, but rather some type of pain management sort of thing with familarity with TTS and CRPS.

----

Re: bilateral tarsal tunnel

wendyg on 1/14/02 at 18:56 (069994)

I live in western mass. but would travel to any place in new england ,new york,to penn. if needed. I'm sure I can not have surgery but I need someone to say that and possibly suggest something non surgical. The pain dr I see now has no knowledge of tss and does not care to know or deal with it. I actually will not see him again, possibly someone else in that group. He was very annoyed I even asked him about it the last time I saw him. He said he doesn't know anything about it and I would need to see a podiatrist. I need someone who understands both problems. I would like to know if other people with tss and or crps are still able to manage a job that you are on your feet all day. I just can not go back to that but I don't know how secure my desk job is. I use to pack my feet in ice after work and even had little ice packs at work to stuff in my socks. Ice is not good for crps as my foot is usually cold to start with and is very sensitive to being cold. Thanks

Re: bilateral tarsal tunnel

elliott on 1/15/02 at 12:37 (070038)

Look up a guy named E.T. DosRemedios, I think at the University Foot Center in Providence, RI or thereabouts, and also G.P. Jolly, possibly at New Britain General Hosptial in Connecticut. Note: I said look them up, not that I'm vouching for them. I think the second is a pod; not sure if the first is an ortho, but is probably the bigger of the two in research. They have published a few articles on patients they've seen with rarer TTS problems. If all it is is an opinion, medication and other nonsurgical help, probably can't hurt to try them first. If no success, there's someone in Baltimore whose practice knows all about TTS, CRPS, etc., as well as many of the various medications, and is well-prepared and qualified for the surgical options. If you're willing to travel that far, let me know and I'll give you details.

--

Re: bilateral tarsal tunnel

Pat P. on 1/29/02 at 12:05 (071792)

Hi elliott- I would be interested in the practice in Baltimore. I live an hour from there- have been in excruciating pain for 3 months. Am being treated by a military ortho surg for TTS and am desperate for relief. Thanx.

Re: bilateral tarsal tunnel

wendyn on 1/11/02 at 19:43 (069690)

Wendy - it is difficult to differentiate between TTS and CRPS. CRPS is often misdiagnosed as 'just' TTS. You are probably better off to stick with the CRPS doctor and pursue that route. The objective will probably to get the nerve pain under control - and avoid further neural irritation.

Can you provide a history of what happened prior to your surgery?

Re: bilateral tarsal tunnel

Mike S. on 1/11/02 at 21:41 (069707)

I have been diagnosed with bilateral TTS, see my previous thread 'Does Bilateral TTS Suggest Anything'. CRPS doesn't sound like anything specific; sounds like 'peripheral neuropathy' which is a condition. You have to find out what is causing CRPS. I don't know anything about CRPS. I do know I was told that I had PN & I had to find out what was causing it. Then I was told I had TTS & I was thrilled...I found out what was causing my PN, BUT now the question is 'what is causing the TTS.

Re: bilateral tarsal tunnel

wendyn on 1/12/02 at 01:06 (069713)

CRPS and neuropathy (to the best of my knowledge) cannot be considered the same thing. CRPS can start as a nerve injury - but it can develop into much more.

Re: bilateral tarsal tunnel

wendyg on 1/13/02 at 10:34 (069854)

Thank you wendyn for your advice. My symptons started 6 and 1/2 years ago after running on the treadmill 4 miles on an incline. I had been using the treadmill for years but did not usually go for extended time on an incline. The day following that run my feet were slightly stiff and continued to be so. Ten days after the incident my both ankles became acutely swollen. I checked with a dr. friend who thought it sounded like achilles tenonditis. I treated it with motrin and tried to rest. After two weeks the swelling improved but the pain did not. I had pain at both achilles areas and the inside of the ankles into the foot. The pain was improved after sleep but increased as the day went on. My job requires me to be on my feet all day on cement floors. This continued so I saw an arthritis specalist who tried me on multiple anti inflamatories which never helped. I then tried an orthopedic dr who wanted me to go into a cast for 6 weeks and then repeat for the other foot believing I had tendonitis. I chose to seek a second opinion who but me in a removable cast boot for 6 weeks. That did not help so that dr. sent me to another ortho guy who's specialty was foot and ankle. He didn't know what was wrong but suggested six weeks off of work to rest. I wasn't comfortable with that because he really did not know what was wrong he seemed to be grasping at straws. I went back to the original orhto dr. who tried the cast boot again and when that failed suggested wurgery to trim the heel bone believing that was irritating the achilles. I could understand that because thru all of this I had pain at that sight and could not tolerate shoes touching the back of my heel. I did ask him if that really was what was going on why was the pain so severe when I stood in one place. I went thru surgery, wore a cast for 4 weeks. When I returned to work the pain at the tarsal site continued.I tried orthodics and returned to the dr. He then said to use the orthodics and give it a year. I did that but contined with pain. When I returned to him he injected the inner foot with cortisone. Once he knew that did not work he told me he did not know what was wrong and had nothing more to offer me. I then tried a podiatrist who again injected me with cortisone and had me wear ankle braces. Once that proved to not help he suggested changes in my orthodics. While working with the orthodics guy I met another podiatrist who listened to my story and said I had tarsal tunnel just from my history. I then had nerve test which were positive for tss. I had surgery for the release. I had spinal anesthesia so when that wore off I had unbearable pain on the top of my foot. I was medicated numerous times with no relief. The nurses talked to him a number of times about the pain. I had to be admitted on a morphine pump for pain control. The next day I removed the bandage because the pain was starting up again. I had ace wrap then a plastic night splint on then another ace and a guaze wrap. the quaze wrap was twisted where the ankle and foot connect on the top of my foot. Since surgery I have had burning pain on the top of my foot down to my toes. I also have a nerve inside my leg near the knee that runs up my leg that also burns. The whole leg is about a degree colder and sometimes the foot is frozen. I have seen several dr. who say it is the crps. I have had spinal blocks which one worked but others did not so that is not an option. I have tried numerous medications which have not helped. I did have a brier block which has helped and can be repeated as needed. There is no cure for this only pain control. My problem is that the tarsal tunnel is not fixed and continues to alter my life. Work is the rearl issue because I cannot tolerate being on my feet. The tts screams but also these nerves invoved with the crps are triggered by my walking because of the friction of the shoes. I can't even tolerate pajama bottoms brushing the top of my foot. At this time I am doing a desk job but that is only temporary and because I have a nice boss. There is no permanent position for a sit down job. This is why I need someone knowledgable about tss but also crps to help me decide what to do. Further surgery is out of the question because this crps can spread and surgery could certainly trigger it. I know this is a very long story but it's been a very long 6 and 1/2 yrs. and there does not seem to be an end in site. Thanks for reading this and any suggestions would be great. wendyg

Re: bilateral tarsal tunnel

elliott on 1/13/02 at 11:56 (069860)

Can I ask where you live (just in case I heard of a doc in your area)? And how far are you willing to travel to see such a specialist? (If it's to seek advice on medication, one visit might suffice.)

If you definitely are ruling out more surgery, you may not need a TTS specialist per se, but rather some type of pain management sort of thing with familarity with TTS and CRPS.

----

Re: bilateral tarsal tunnel

wendyg on 1/14/02 at 18:56 (069994)

I live in western mass. but would travel to any place in new england ,new york,to penn. if needed. I'm sure I can not have surgery but I need someone to say that and possibly suggest something non surgical. The pain dr I see now has no knowledge of tss and does not care to know or deal with it. I actually will not see him again, possibly someone else in that group. He was very annoyed I even asked him about it the last time I saw him. He said he doesn't know anything about it and I would need to see a podiatrist. I need someone who understands both problems. I would like to know if other people with tss and or crps are still able to manage a job that you are on your feet all day. I just can not go back to that but I don't know how secure my desk job is. I use to pack my feet in ice after work and even had little ice packs at work to stuff in my socks. Ice is not good for crps as my foot is usually cold to start with and is very sensitive to being cold. Thanks

Re: bilateral tarsal tunnel

elliott on 1/15/02 at 12:37 (070038)

Look up a guy named E.T. DosRemedios, I think at the University Foot Center in Providence, RI or thereabouts, and also G.P. Jolly, possibly at New Britain General Hosptial in Connecticut. Note: I said look them up, not that I'm vouching for them. I think the second is a pod; not sure if the first is an ortho, but is probably the bigger of the two in research. They have published a few articles on patients they've seen with rarer TTS problems. If all it is is an opinion, medication and other nonsurgical help, probably can't hurt to try them first. If no success, there's someone in Baltimore whose practice knows all about TTS, CRPS, etc., as well as many of the various medications, and is well-prepared and qualified for the surgical options. If you're willing to travel that far, let me know and I'll give you details.

--

Re: bilateral tarsal tunnel

Pat P. on 1/29/02 at 12:05 (071792)

Hi elliott- I would be interested in the practice in Baltimore. I live an hour from there- have been in excruciating pain for 3 months. Am being treated by a military ortho surg for TTS and am desperate for relief. Thanx.