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OK, You TTS Guru's-Got My Third Opinion Today

Posted by Mike S. on 3/19/02 at 22:54 (076933)

I was referred to another podiatrist by my second opinion podiatrist. This doc charged $300 for my visit. He thinks I have some metabolic ailment other than TTS because my numbness throughout my foot is not consistent with TTS. He said TTS just affects the bottom of your foot. I know my foot is numb inside because my acupuncturist sunk five needles in each foot 1/2' DEEP INTO MY FEET & I FELT N-O-T-H-I-N-G: 3 were 2' aft of my toe web spaces, 1 on side at arch and 1 on the front part of my ankle. MY FOOT IS LIKE DEAD MEAT INSIDE!!! DOES ANYONE HAVE THAT??

Re: OK, You TTS Guru's-Got My Third Opinion Today

wendyn on 3/19/02 at 22:57 (076935)

No Mike - I haven't heard of anyone with TTS who has a completely numb foot.

I agree with your 3rd pod who believes there is something else going on.

The only question is....what?

Re: OK, You TTS Guru's-Got My Third Opinion Today

Mike S. on 3/19/02 at 23:27 (076938)

When I mean numb, I mean the inside meat, not the skin. I guess you wouldn't know unless you had acupuncture??

Have you ever heard of weakness in the legs?

Re: OK, You TTS Guru's-Got My Third Opinion Today

Donna SL on 3/20/02 at 02:37 (076947)

Yeeow Mike,

When my TTS was at it's very worse my feet, and ankles were not numb to touch like that anywhere as far I remember. Even when I was first diagnosed I went to a neurologist, and he tested them with pin pricks all over I felt it. He also did a bunch of other test with tuning forks, and other things I can't remember. I've had plenty of acupuncture, almost 10 monthts worth. I'm greatful, because it helped me so much, but I wasn't thrilled when my doctor stuck them in any part of the sole of the foot, arch, web spaces between the toes, side, and tops of ankles, top of foot, etc., because I sure did feel it. It wasn't bad in the legs, and back, but my feet were always more sensitive. Once they were in I was ok, but I either felt them, or they hurt in those areas during the insertion. He used the tiniest gauge needle too, and didn't stick them in that far.

This does sound like something else is going on, or you just have a higher pain tolerance then me. Do you have diabetes, or been diagnosed with any small fiber neuropathy? Has your back been tested? I've heard of stories where diabetics have walked around with a small nail, or tack in their foot through their shoe, and didn't even feel it.

I noticed you mentioned in a prior post that you've seen a neurologist, and physiatrist for ncv test. Did they do a full neurological work-up too? Have all forms of polyneuropathy, and other neurological problems been been completely ruled out? Have they done ncv/emg's to see if you have any nerve compressions in the lower lumbar spine? An MRI may, or may not show anything, but did you have one for the spine, plus other imaging studies? Have you gotten second, and third, opinions from other neurologist, orthopedic surgeons, physiatrist, etc. Has your vascular system been checked for any blockages, etc.? Has your auto-immune system been investigated? Also, Dennis B. who post on this board was diagnosed with vasculitic neuropathy, from a sural nerve biopsy. Even if the sural nerve was slow on the NCV, some suspician should be raised that there is something else going on besides just TTS. Did the sural nerve show any slowing on the NCV test? Any slowing of that nerve could possibly suggest some form of polyneuropathy, especially if most of the other major nerves in the foot showed slowing too. I know I had asked some of the above before, but I'm just curious if you've done most of these already.

You also mentioned previously (unless there is another Mike S) that you were weak all the way up to your thighs, and one of your feet is very sluggish, and half the control is gone. In my opinion I don't think you would experience these symptoms just from TTS. How long has this been going on?

That podiatrist seems like he did a good deed, and hopefully you'll find some more answers to what's going on before considering any TTS surgery.

Donna

Re: OK, You TTS Guru's-Got My Third Opinion Today

wendyn on 3/20/02 at 07:30 (076950)

I've had acupuncture - and although the pain went away after the needles were in...I felt every single one go in.

I have heard of mild weakness in the legs - but nothing like what you are describing.

Re: Third Opinion Thinks I Have Peripheral Neuropathy & Nerve Compression

Mike S. on 3/20/02 at 21:20 (077049)

I know TTS can cause Peripheral Neuropathy (called entrapment neuropathy), but I don't know if PN can cause TTS.

Doc said he did not think TTS could cause numbness anywhere near the top of your feet.

At this point in time, it seems logical to have the release & see what's left over. COMMENTS?

My feet stopped burning a day ago, wonder whats up with that?

Re: Third Opinion Thinks I Have Peripheral Neuropathy & Nerve Compression

Julie on 3/21/02 at 02:49 (077065)

If the new doctor suspects something besides TTS is going on, the logical approach (I would have thought) is to find out what it is. Have surgery to see what's left over? I hope you're not that desperate. TTS surgery (as I understand it) does not have a particularly good success rate, unless there is an identifiable mass in the tunnel (I can't remember if you have that). And it's possible, given what the new doctor thinks, that you don't have TTS at all.

IMHO it seems awfully risky to have a surgery that could make things worse.

Have you been tested for diabetes?

Re: Third Opinion Thinks I Have Peripheral Neuropathy & Nerve Compression

Wanda T. on 3/27/02 at 18:55 (077780)

I had TT surgery and have no relief for the pain as of yet. I am trying Nuerontin,ultrasound, and seeing a nuerologist next week to see if that will help. I would not suggest the surgery till you know for sure as it is not a for sure cure.

Re: OK, You TTS Guru's-Got My Third Opinion Today

Lara T on 3/28/02 at 19:05 (077893)

MIKE WROTE: He said TTS just affects the bottom of your foot.

Hmmm. I have the definite impression that TTS is a relatively recent diagnosis (last 40 years when first recognized) and a lot of good doctors don't know a lot still, even those working in and around the area of TTS. My podiatrist (actually, the 3rd one, but the first one said it was peripheral neuropathy and a sign of impending diabetes and the second one said it was in my head) said my symptoms sounded like almost classic TTS and sent me for to a neurologist for a confirming test immediately (which confirmed to the pod. that I had TTS). Among my presenting symptoms were burning on the bottom of my feet and nerve pain on the dorsal part of my feet. So it seems that TTS can have dorsal symptoms.

Of course getting the diagnosis wasn't my main concern, getting decent treatment for my symptoms was. A diagnosis only helped speed up the time it took to find a proper treatment. Once I was given my compression socks (see thread I started on this for more info) I've relaxed my search for what exactly is going on and have believed (rightly or wrongly)that I have peripheral neuropathy (PF & dorsal nerve pain) caused by TTS. Whatever I have, the socks gave me back a life so I've focused more on other stuff - because until I found this discussion group, information was so hard to find and took too much time.

Re: OK, You TTS Guru's-Got My Third Opinion Today

wendyn on 3/19/02 at 22:57 (076935)

No Mike - I haven't heard of anyone with TTS who has a completely numb foot.

I agree with your 3rd pod who believes there is something else going on.

The only question is....what?

Re: OK, You TTS Guru's-Got My Third Opinion Today

Mike S. on 3/19/02 at 23:27 (076938)

When I mean numb, I mean the inside meat, not the skin. I guess you wouldn't know unless you had acupuncture??

Have you ever heard of weakness in the legs?

Re: OK, You TTS Guru's-Got My Third Opinion Today

Donna SL on 3/20/02 at 02:37 (076947)

Yeeow Mike,

When my TTS was at it's very worse my feet, and ankles were not numb to touch like that anywhere as far I remember. Even when I was first diagnosed I went to a neurologist, and he tested them with pin pricks all over I felt it. He also did a bunch of other test with tuning forks, and other things I can't remember. I've had plenty of acupuncture, almost 10 monthts worth. I'm greatful, because it helped me so much, but I wasn't thrilled when my doctor stuck them in any part of the sole of the foot, arch, web spaces between the toes, side, and tops of ankles, top of foot, etc., because I sure did feel it. It wasn't bad in the legs, and back, but my feet were always more sensitive. Once they were in I was ok, but I either felt them, or they hurt in those areas during the insertion. He used the tiniest gauge needle too, and didn't stick them in that far.

This does sound like something else is going on, or you just have a higher pain tolerance then me. Do you have diabetes, or been diagnosed with any small fiber neuropathy? Has your back been tested? I've heard of stories where diabetics have walked around with a small nail, or tack in their foot through their shoe, and didn't even feel it.

I noticed you mentioned in a prior post that you've seen a neurologist, and physiatrist for ncv test. Did they do a full neurological work-up too? Have all forms of polyneuropathy, and other neurological problems been been completely ruled out? Have they done ncv/emg's to see if you have any nerve compressions in the lower lumbar spine? An MRI may, or may not show anything, but did you have one for the spine, plus other imaging studies? Have you gotten second, and third, opinions from other neurologist, orthopedic surgeons, physiatrist, etc. Has your vascular system been checked for any blockages, etc.? Has your auto-immune system been investigated? Also, Dennis B. who post on this board was diagnosed with vasculitic neuropathy, from a sural nerve biopsy. Even if the sural nerve was slow on the NCV, some suspician should be raised that there is something else going on besides just TTS. Did the sural nerve show any slowing on the NCV test? Any slowing of that nerve could possibly suggest some form of polyneuropathy, especially if most of the other major nerves in the foot showed slowing too. I know I had asked some of the above before, but I'm just curious if you've done most of these already.

You also mentioned previously (unless there is another Mike S) that you were weak all the way up to your thighs, and one of your feet is very sluggish, and half the control is gone. In my opinion I don't think you would experience these symptoms just from TTS. How long has this been going on?

That podiatrist seems like he did a good deed, and hopefully you'll find some more answers to what's going on before considering any TTS surgery.

Donna

Re: OK, You TTS Guru's-Got My Third Opinion Today

wendyn on 3/20/02 at 07:30 (076950)

I've had acupuncture - and although the pain went away after the needles were in...I felt every single one go in.

I have heard of mild weakness in the legs - but nothing like what you are describing.

Re: Third Opinion Thinks I Have Peripheral Neuropathy & Nerve Compression

Mike S. on 3/20/02 at 21:20 (077049)

I know TTS can cause Peripheral Neuropathy (called entrapment neuropathy), but I don't know if PN can cause TTS.

Doc said he did not think TTS could cause numbness anywhere near the top of your feet.

At this point in time, it seems logical to have the release & see what's left over. COMMENTS?

My feet stopped burning a day ago, wonder whats up with that?

Re: Third Opinion Thinks I Have Peripheral Neuropathy & Nerve Compression

Julie on 3/21/02 at 02:49 (077065)

If the new doctor suspects something besides TTS is going on, the logical approach (I would have thought) is to find out what it is. Have surgery to see what's left over? I hope you're not that desperate. TTS surgery (as I understand it) does not have a particularly good success rate, unless there is an identifiable mass in the tunnel (I can't remember if you have that). And it's possible, given what the new doctor thinks, that you don't have TTS at all.

IMHO it seems awfully risky to have a surgery that could make things worse.

Have you been tested for diabetes?

Re: Third Opinion Thinks I Have Peripheral Neuropathy & Nerve Compression

Wanda T. on 3/27/02 at 18:55 (077780)

I had TT surgery and have no relief for the pain as of yet. I am trying Nuerontin,ultrasound, and seeing a nuerologist next week to see if that will help. I would not suggest the surgery till you know for sure as it is not a for sure cure.

Re: OK, You TTS Guru's-Got My Third Opinion Today

Lara T on 3/28/02 at 19:05 (077893)

MIKE WROTE: He said TTS just affects the bottom of your foot.

Hmmm. I have the definite impression that TTS is a relatively recent diagnosis (last 40 years when first recognized) and a lot of good doctors don't know a lot still, even those working in and around the area of TTS. My podiatrist (actually, the 3rd one, but the first one said it was peripheral neuropathy and a sign of impending diabetes and the second one said it was in my head) said my symptoms sounded like almost classic TTS and sent me for to a neurologist for a confirming test immediately (which confirmed to the pod. that I had TTS). Among my presenting symptoms were burning on the bottom of my feet and nerve pain on the dorsal part of my feet. So it seems that TTS can have dorsal symptoms.

Of course getting the diagnosis wasn't my main concern, getting decent treatment for my symptoms was. A diagnosis only helped speed up the time it took to find a proper treatment. Once I was given my compression socks (see thread I started on this for more info) I've relaxed my search for what exactly is going on and have believed (rightly or wrongly)that I have peripheral neuropathy (PF & dorsal nerve pain) caused by TTS. Whatever I have, the socks gave me back a life so I've focused more on other stuff - because until I found this discussion group, information was so hard to find and took too much time.