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Failed TTS release

Posted by Margie on 8/17/02 at 16:15 (092764)

I am one of the unlucky ones who's surgeries for bilateral tarsal tunnel syndrome failed. Now I have been diagnosed with permanent damage to both posterior tibial nerves. Unable to walk, stand or sit for only a short time. My question is to anyone with this condition and it seems like it is getting worse each day. Now the backs of both upper legs have the sharp, tingling, stabbing pain as my lower legs and feet. (sciatica nerve?) Unable to lie anything on the tops of my legs (lap). Does anyone know if having the TTS go into other conditions? It seems I am developing more problems. Any information will be appreciated.
Thank you in advance,
Margie

Re: Failed TTS release

Ed Davis, DPM on 8/17/02 at 19:10 (092779)

Margie:
Have you had a nerve conduction velocity test(NCV) to help determine the extent of the problem? Does your surgeon have a theory as to why the surgery did not work?

There are no easy answers but here are a couple suggestions. Go to a pain clinic so that the pain can be managed -- the sooner the better. There are a few docs who specialize in failed or difficult cases. I would not rush into more surgery but would talk to them in order to look at your options.
One of the procedures involves wrapping a vein around the nerve in order to remove pressure from it -- performed by Dr. Schon of Baltimore, MD.
Another option includes use of an implantable nerve stimulator designed to interrupt pain impulses. A number of drugs, oral and topical can ease the pain. Oral medications which may be used singly or in combination include gabapentin (Neurontin) and Ultacet. Topical medications may include similar ingredients but can be used more frequently due to less systemic absorbtion.
Ed

Re: Failed TTS release

Margie on 8/17/02 at 20:26 (092782)

Thank you for your reply. The dr. did the test and it was positive for TTS. He did not know why the surgery didn't work. But in reading about TTS, The earlier your condition is diagnosed the better chance you have to relieve the symptoms and prevent permanent damage to the tibial nerves. I believe I waited too long before going to the dr. I suffered for 2 years. Working as a supervisor in a large whse. walking very rapidly for approx. 8 hrs. a day. for 12 yrs. The last 2 years were the worst. Hard work does not always pay off.
Thank you again for any information.
Margie

Re: Failed TTS release

Sharon W on 8/19/02 at 07:51 (092879)

Margie,

I'm very sorry to hear about your pain. I am a TTS sufferer myself and I recently had surgery because I simply couldn't imagine continuing to live the rest of my life in the kind of pain I had been experiencing. I was lucky, though -- my posterior tibial nerve was still in pretty good shape, and unless scarring causes the pain to return, I think I have a good chance for some real pain relief.

I was interested in your comment about waiting too long to get diagnosed with TTS. It sounds like you believe that, in your situation, the problem was a delay in seeking treatment rather than a delay in getting an accurate diagnosis. But you are certainly not the only one to have worked through terrible foot pain, without realizing you were doing such serious damage to yourself. (Most people who develop TTS are very hard workers.) Were you diagnosed with TTS soon after you first went to see a Dr., and was treatment for TTS was begun right away?

Were you first treated with a variety of 'conservative' methods like orthotics, steroid injections, electrical stimulation, and/or physical therapy -- or did your Dr. suggest surgery early on?

I believe that what you said is absolutely right, that 'the earlier your condition is diagnosed the better chance you have to relieve the symptoms and prevent permanent damage to the tibial nerves'. You said you learned that in reading about TTS. Do you remember where you read it??

Sharon

Re: Failed TTS release

Margie on 8/20/02 at 19:25 (093018)

Hi Sharon,
I had suffered pain for 2 yr. before I had the surgery. I went to 3 different doctors and not one diagnosed my TTS nor did they do any test to see. I even had one doctor say I have the same thing they have and laughed at me.

I have a sister that suffered feet problems so I talked with her and my pain was much similar to hers so I requested to see her doctor.

My sister had surgery for her TTS and her surgery was a success. She only had pain for about 6 months before she had surgery. And waited a yr. before having the other foot done.

I mentioned her to him and he pulled her file and did the EMG and nerve conduction studies to evaluate for TTS. The test were positive for TTS. Did one surgery a month later and the other foot was done 2 1/2 months later. Don't know if I had surgery too close together and/or it took
too long to be disgnosed with TTS.

I also went to a DR. the SSD sent me to and he did not even know what TTS was.

I type in 'tarsal+tunnel+syndrome' and pull up many sites to read on TTS.

Thanks for your time,
Margie

Re: Failed TTS release

Sharon W on 8/21/02 at 07:18 (093064)

You said, 'I had suffered pain for 2 yr. before I had the surgery. I went to 3 different doctors and not one diagnosed my TTS nor did they do any test to see. I even had one doctor say I have the same thing they have and laughed at me.'

What a sad story. It was REALLY unprofessional (and unforgivable) for that doctor to laugh at you when you sought help for your foot pain.

Unfortunately, it doesn't seem to be all that uncommon for people with TTS go undiagnosed for years, even though they have gone to doctors for treatment. Many times the doctors they went to failed to do the appropriate diagnostic tests to detect TTS, probably either because they didn't know enough about foot and ankle problems (like that doctor you went to, many of them don't even know what TTS IS), or because they recognized symptoms commonly associated with plantar facaetis of some other foot problem and they never looked any further than that. And of course, sometimes TTS is a MISdiagnosis -- perhaps because some doctor didn't know what else to call it, so he called it TTS.

There's no doubt about it, it's incredibly important with TTS to get treatment right away. I know that if TTS goes untreated for too long, the damage to the posterior tibial nerve can become very serious, serious enough that surgery may be unable to repair all of the damage that has been done by years of compression.

It is also a valid point that when two surgeries are close together, the first foot to be operated on is still trying to heal when the second surgery takes place, yet it's forced to bear the weight normally carried by both feet.

I am no expert on these things, but I'm afraid you might possibly be developing a nerve problem that is even more serious than TTS. If you do a search on these boards for RSD, you'll find a lot of information available for that chronic nerve pain condition -- but there are many other things it might be. Dr. Ed and Brian are right; you urgently NEED to see a pain specialist; they are the experts with these kinds of things, and a good pain specialist would probably identify your problem.

Sharon

Re: Failed TTS release

Mark O on 8/25/02 at 19:00 (093503)

Hi Margie,

I have had severe plantar fasciitis, which has led to a development of symptoms that match everything I've read about TTS. I've called and talked with my DPM about it, and now I'm definitely going in for a specific TTS test. I'm not anxious to have surgery if conservative treatments don't work right away, but I'm very interested in where you underwent your successful surgery. Would you care to share this information? I think finding a good surgeon that knows what he/she is doing is one of the most important things I could do.

Many thanks for any help, and I hope you're continuing to do well and recover.

Mark

Re: Failed TTS release

Ed Davis, DPM on 8/17/02 at 19:10 (092779)

Margie:
Have you had a nerve conduction velocity test(NCV) to help determine the extent of the problem? Does your surgeon have a theory as to why the surgery did not work?

There are no easy answers but here are a couple suggestions. Go to a pain clinic so that the pain can be managed -- the sooner the better. There are a few docs who specialize in failed or difficult cases. I would not rush into more surgery but would talk to them in order to look at your options.
One of the procedures involves wrapping a vein around the nerve in order to remove pressure from it -- performed by Dr. Schon of Baltimore, MD.
Another option includes use of an implantable nerve stimulator designed to interrupt pain impulses. A number of drugs, oral and topical can ease the pain. Oral medications which may be used singly or in combination include gabapentin (Neurontin) and Ultacet. Topical medications may include similar ingredients but can be used more frequently due to less systemic absorbtion.
Ed

Re: Failed TTS release

Margie on 8/17/02 at 20:26 (092782)

Thank you for your reply. The dr. did the test and it was positive for TTS. He did not know why the surgery didn't work. But in reading about TTS, The earlier your condition is diagnosed the better chance you have to relieve the symptoms and prevent permanent damage to the tibial nerves. I believe I waited too long before going to the dr. I suffered for 2 years. Working as a supervisor in a large whse. walking very rapidly for approx. 8 hrs. a day. for 12 yrs. The last 2 years were the worst. Hard work does not always pay off.
Thank you again for any information.
Margie

Re: Failed TTS release

Sharon W on 8/19/02 at 07:51 (092879)

Margie,

I'm very sorry to hear about your pain. I am a TTS sufferer myself and I recently had surgery because I simply couldn't imagine continuing to live the rest of my life in the kind of pain I had been experiencing. I was lucky, though -- my posterior tibial nerve was still in pretty good shape, and unless scarring causes the pain to return, I think I have a good chance for some real pain relief.

I was interested in your comment about waiting too long to get diagnosed with TTS. It sounds like you believe that, in your situation, the problem was a delay in seeking treatment rather than a delay in getting an accurate diagnosis. But you are certainly not the only one to have worked through terrible foot pain, without realizing you were doing such serious damage to yourself. (Most people who develop TTS are very hard workers.) Were you diagnosed with TTS soon after you first went to see a Dr., and was treatment for TTS was begun right away?

Were you first treated with a variety of 'conservative' methods like orthotics, steroid injections, electrical stimulation, and/or physical therapy -- or did your Dr. suggest surgery early on?

I believe that what you said is absolutely right, that 'the earlier your condition is diagnosed the better chance you have to relieve the symptoms and prevent permanent damage to the tibial nerves'. You said you learned that in reading about TTS. Do you remember where you read it??

Sharon

Re: Failed TTS release

Margie on 8/20/02 at 19:25 (093018)

Hi Sharon,
I had suffered pain for 2 yr. before I had the surgery. I went to 3 different doctors and not one diagnosed my TTS nor did they do any test to see. I even had one doctor say I have the same thing they have and laughed at me.

I have a sister that suffered feet problems so I talked with her and my pain was much similar to hers so I requested to see her doctor.

My sister had surgery for her TTS and her surgery was a success. She only had pain for about 6 months before she had surgery. And waited a yr. before having the other foot done.

I mentioned her to him and he pulled her file and did the EMG and nerve conduction studies to evaluate for TTS. The test were positive for TTS. Did one surgery a month later and the other foot was done 2 1/2 months later. Don't know if I had surgery too close together and/or it took
too long to be disgnosed with TTS.

I also went to a DR. the SSD sent me to and he did not even know what TTS was.

I type in 'tarsal+tunnel+syndrome' and pull up many sites to read on TTS.

Thanks for your time,
Margie

Re: Failed TTS release

Sharon W on 8/21/02 at 07:18 (093064)

You said, 'I had suffered pain for 2 yr. before I had the surgery. I went to 3 different doctors and not one diagnosed my TTS nor did they do any test to see. I even had one doctor say I have the same thing they have and laughed at me.'

What a sad story. It was REALLY unprofessional (and unforgivable) for that doctor to laugh at you when you sought help for your foot pain.

Unfortunately, it doesn't seem to be all that uncommon for people with TTS go undiagnosed for years, even though they have gone to doctors for treatment. Many times the doctors they went to failed to do the appropriate diagnostic tests to detect TTS, probably either because they didn't know enough about foot and ankle problems (like that doctor you went to, many of them don't even know what TTS IS), or because they recognized symptoms commonly associated with plantar facaetis of some other foot problem and they never looked any further than that. And of course, sometimes TTS is a MISdiagnosis -- perhaps because some doctor didn't know what else to call it, so he called it TTS.

There's no doubt about it, it's incredibly important with TTS to get treatment right away. I know that if TTS goes untreated for too long, the damage to the posterior tibial nerve can become very serious, serious enough that surgery may be unable to repair all of the damage that has been done by years of compression.

It is also a valid point that when two surgeries are close together, the first foot to be operated on is still trying to heal when the second surgery takes place, yet it's forced to bear the weight normally carried by both feet.

I am no expert on these things, but I'm afraid you might possibly be developing a nerve problem that is even more serious than TTS. If you do a search on these boards for RSD, you'll find a lot of information available for that chronic nerve pain condition -- but there are many other things it might be. Dr. Ed and Brian are right; you urgently NEED to see a pain specialist; they are the experts with these kinds of things, and a good pain specialist would probably identify your problem.

Sharon

Re: Failed TTS release

Mark O on 8/25/02 at 19:00 (093503)

Hi Margie,

I have had severe plantar fasciitis, which has led to a development of symptoms that match everything I've read about TTS. I've called and talked with my DPM about it, and now I'm definitely going in for a specific TTS test. I'm not anxious to have surgery if conservative treatments don't work right away, but I'm very interested in where you underwent your successful surgery. Would you care to share this information? I think finding a good surgeon that knows what he/she is doing is one of the most important things I could do.

Many thanks for any help, and I hope you're continuing to do well and recover.

Mark