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Anyone with non standard TTS symptoms?

Posted by Jana on 6/28/01 at hrmin (051749)

The saga continues --
I have now met with four surgeons and have four completely different stories about what should be done. I have caustic plantar fasciitis symptoms (for the last two years), an MRI that confirms symptoms consistent with plantar fasciitis, and a positive nerve conduction study for tarsal tunnel syndrome.

One surgeon (podiatrist, sports medicine) said do the PF released surgery but don't do the TTS surgery because it is so risky and so seldom successful.

Another surgeon (orthopedic surgeon, foot/ankle/sports medicine) said the opposite, don't do the PF released surgery because it leaves your foot so unstable and will cause pain in other places. She said do the TTS surgery because the positive nerve conduction study confirms the diagnosis.

The podiatrist I've been working with for two years won't give me an opinion or commit to whether or not I should have any surgery. He has only seen 10 cases of tarsal tunnel in his career (about 25 years).

A fourth surgeon (podiatrist) said he questions the tarsal tunnel diagnosis because I don't have classic symptoms, only a positive nerve conduction study. I also have bilateral carpal tunnel and ulner nerve pain so he questions that I don't have some other neurological disorder.

Now what? You would think after talking to four people at least two of them might agree. Nope_

So, I guess I'm left to figure this out myself. I have researched the TTS websites and I don't fit a lot of those patterns. I do have pain (throbbing/tender) on the inside of my ankles in the tarsal tunnel area, arch pain, and plantar facia pain (like the nail has been pounded into my foot just in front of my heel). I have a positive nerve conduction as I said. But, I do not have shooting pain when the tarsal tunnel is tapped, I do not have numbness or tingling, my feet are not particularly cold or hot, I do not have a loss of sensation in any area of either foot. Is a nerve conduction study and pain in the tarsal tunnel area enough to confirm the TTS diagnosis? And is it enough to warrant surgery? And, how do you know which surgery to get and who should do it?

Re: Anyone with non standard TTS symptoms?

GinaC on 6/28/01 at 15:11 (051762)

I sure can't advise you about your surgery decision, but wanted to share that I was 'shocked' when my nerve conduction test for TTS came back positive in both feet, as like you, I had no 'nerve' type symptoms, just very mild pain in the ankle area on occasion. I knew that I wanted to have open PF release and since the ortho surgeon could do both PF and TT release thru the same incision along the inside ankle/foot, I went ahead with it. This doctor's thinking was that if you are going in surgically, take care of every possible cause of pain. He felt that when you do only one procedure (PF release alone or TT release alone),that often leads to a need for second surgeries down the road, to address the source of remaining pain.

I'm about 15 weeks post-op now and having more frequent periods of no pain, so I'm satisfied with the outcome at this point...but am still hoping for further improvement.

Re: Anyone with non standard TTS symptoms?

cindyp on 6/28/01 at hrmin (051772)

I don't know. I wasn't aware of tts but had a swelling under the ankle in the arch for almost 15 years . I am three weeks out and am not in particular pain unless up for too long. More of a soreness and tired. I see no sense in staying in pain. If you can pin down the problem and then they feel surgery is necessary do it. Life is to short to be in agony. I also disagree that tts surgery is rarely successful. I know I am still in recovery (3 weeks) but I am a success story. Feel pretty good most days.

Re: Anyone with non standard TTS symptoms?

Scott2 on 6/29/01 at 12:05 (051871)

Jana,

Well, at least you are doing your homework. Sorry there is no clear answer for you - unfortunately, this is one of those cases that can be very vague. I applaud you for seeing multiple doctors and weighing out all of your options.

I cannot advise on surgery one way or the other, but can offer you someone who has gone through surgery. I am about four months post-op for a plantar fascia release and distal tarsal tunnel release.

My best friend is an MD (ortho) and though he never actually evaluated me due to us being far apart, he strongly recommended having both procedures done to cover as many possible solutions in one operation (as Gina mentioned to you on her post as well). I changed my medical plan to get to a trusted and recommended podiatrist where I live. I felt very comfortable with him.

True, the percentages for recovery for this operation is not high as compared to other procedures for other ailments. It is probably why doctors mention low success rates - but it is still anywhere in the 70% range (give or take some either way - I know there are lots of studies out there). So think positive if you have it done and believe you are going to be one of the seven instead of one of the three.

But I can tell you this, I was at the end of my rope. I had done everything non-invasive that could be done and did all the tests. I felt I had to try it and did not see my situation being any worse than it was. I was in a lot of pain and was not enjoying life - and life is too short to be miserable.

Today, I can say I am much better off than I was. The recovery has been tough, very slow at times, and challenging, but I know I am getting better. I have far less pain and I can walk a lot longer with my new orthotics than I could before surgery. Before surgery, I had to sit down after short walks and forget even trying to stand in place.

Everyone's situation is different and there are so many factors that contribute to your case. That's what is tough to figure out. If you have done everything you can do and surgery is your last option, then you have to decide to stay with what you have and hope it gets better over time or go under the knife.

You have been doing your research and seeing doctors, so find a doctor that has done many of these and is experienced at doing them. Keep us posted and hang in there!

- Scott

Re: Anyone with non standard TTS symptoms?

Matt L on 6/29/01 at 12:43 (051873)

Scott,

You mentioned that you had a distal tarsal tunnel release. Can you specify exactly where yout tts pain was (was it the outside of the sole of the foot excluding the heel) ? Also, do you know where on your ankle/foot the compression was located- high or low? did the scar extend to the sole of the foot for the release?

I also may have distal tts and this info would be helpful. Thanks.

Re: Cualquier persona con síntomas no estándares de TTS?

argumosa on 7/05/01 at hrmin (052294)

Muchas fascitis plantares son secundarias a un stt, si la cirugia esta bien hecha por un cirujano, los resultados son excelentes en el 90% de los casos en nuestra experiencia, pero hay que hacer la liberacion del nervio mucho mas adelante que la cirugia clasica, liberando tada la fascia interna del abd del 1º dedo.

saludos

Dr
Argumosa
cIRUJANO ORTOPEDICO.ESPAÑA

Re: Anyone with non standard TTS symptoms?

Gilda T. on 8/07/01 at 21:29 (055859)

Only because I've been reading alot about it because my husband has it...sounds like you may have diabetic neuropathy. Has this been considered?

Re: Anyone with non standard TTS symptoms?

GinaC on 6/28/01 at 15:11 (051762)

I sure can't advise you about your surgery decision, but wanted to share that I was 'shocked' when my nerve conduction test for TTS came back positive in both feet, as like you, I had no 'nerve' type symptoms, just very mild pain in the ankle area on occasion. I knew that I wanted to have open PF release and since the ortho surgeon could do both PF and TT release thru the same incision along the inside ankle/foot, I went ahead with it. This doctor's thinking was that if you are going in surgically, take care of every possible cause of pain. He felt that when you do only one procedure (PF release alone or TT release alone),that often leads to a need for second surgeries down the road, to address the source of remaining pain.

I'm about 15 weeks post-op now and having more frequent periods of no pain, so I'm satisfied with the outcome at this point...but am still hoping for further improvement.

Re: Anyone with non standard TTS symptoms?

cindyp on 6/28/01 at hrmin (051772)

I don't know. I wasn't aware of tts but had a swelling under the ankle in the arch for almost 15 years . I am three weeks out and am not in particular pain unless up for too long. More of a soreness and tired. I see no sense in staying in pain. If you can pin down the problem and then they feel surgery is necessary do it. Life is to short to be in agony. I also disagree that tts surgery is rarely successful. I know I am still in recovery (3 weeks) but I am a success story. Feel pretty good most days.

Re: Anyone with non standard TTS symptoms?

Scott2 on 6/29/01 at 12:05 (051871)

Jana,

Well, at least you are doing your homework. Sorry there is no clear answer for you - unfortunately, this is one of those cases that can be very vague. I applaud you for seeing multiple doctors and weighing out all of your options.

I cannot advise on surgery one way or the other, but can offer you someone who has gone through surgery. I am about four months post-op for a plantar fascia release and distal tarsal tunnel release.

My best friend is an MD (ortho) and though he never actually evaluated me due to us being far apart, he strongly recommended having both procedures done to cover as many possible solutions in one operation (as Gina mentioned to you on her post as well). I changed my medical plan to get to a trusted and recommended podiatrist where I live. I felt very comfortable with him.

True, the percentages for recovery for this operation is not high as compared to other procedures for other ailments. It is probably why doctors mention low success rates - but it is still anywhere in the 70% range (give or take some either way - I know there are lots of studies out there). So think positive if you have it done and believe you are going to be one of the seven instead of one of the three.

But I can tell you this, I was at the end of my rope. I had done everything non-invasive that could be done and did all the tests. I felt I had to try it and did not see my situation being any worse than it was. I was in a lot of pain and was not enjoying life - and life is too short to be miserable.

Today, I can say I am much better off than I was. The recovery has been tough, very slow at times, and challenging, but I know I am getting better. I have far less pain and I can walk a lot longer with my new orthotics than I could before surgery. Before surgery, I had to sit down after short walks and forget even trying to stand in place.

Everyone's situation is different and there are so many factors that contribute to your case. That's what is tough to figure out. If you have done everything you can do and surgery is your last option, then you have to decide to stay with what you have and hope it gets better over time or go under the knife.

You have been doing your research and seeing doctors, so find a doctor that has done many of these and is experienced at doing them. Keep us posted and hang in there!

- Scott

Re: Anyone with non standard TTS symptoms?

Matt L on 6/29/01 at 12:43 (051873)

Scott,

You mentioned that you had a distal tarsal tunnel release. Can you specify exactly where yout tts pain was (was it the outside of the sole of the foot excluding the heel) ? Also, do you know where on your ankle/foot the compression was located- high or low? did the scar extend to the sole of the foot for the release?

I also may have distal tts and this info would be helpful. Thanks.

Re: Cualquier persona con síntomas no estándares de TTS?

argumosa on 7/05/01 at hrmin (052294)

Muchas fascitis plantares son secundarias a un stt, si la cirugia esta bien hecha por un cirujano, los resultados son excelentes en el 90% de los casos en nuestra experiencia, pero hay que hacer la liberacion del nervio mucho mas adelante que la cirugia clasica, liberando tada la fascia interna del abd del 1º dedo.

saludos

Dr
Argumosa
cIRUJANO ORTOPEDICO.ESPAÑA

Re: Anyone with non standard TTS symptoms?

Gilda T. on 8/07/01 at 21:29 (055859)

Only because I've been reading alot about it because my husband has it...sounds like you may have diabetic neuropathy. Has this been considered?