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Elliot - More Questions & Direction

Posted by Ron B on 1/29/02 at 10:28 (071782)

Elliot,
I can tell you have been at this a while. I recall from one of your earlier posts that you also have Bilateral TTS. How long have you been at this? Cause? Have you had surgery?

At this point I am struggling over how to proceed. I believe that I have exhausted my (reasonable) options. I have been off of work now since December 1st (bed rest is not working), and they are eager for my return to work (as am I). My background is in Engineering and the numbers on successful surgical results are troubling. I am not a gambling man, however, I also know that I cannot continue as I am. Yesterday we hit a high temperature of near 60 degrees and I walked no further that the garage door and sat outside for awhile. This morning after 2 ice soaks, my medication and pain cream my feet are still screaming.

I have only seen my new pod twice but I have much more confidence in him then my 1st pod. He is a board certified surgeon (I inquired as to what this involved). He had to submit 200 surgeries for board review and then pass testing to receive this status. He is one of only 8 in the state of Indiana. I will see my Dr. again on Friday. If I decide to proceed the next step is a physical.

Elliot and anyone else who wishes to share... Any words of wisdom?

I know I ultimately must make the final decision.

Re: Elliot - More Questions & Direction

cindyp on 1/29/02 at 11:24 (071788)

There is a foot and ankle man in Louisville KY with Louisville Orthopedic Clinic Dr. George Quill. Phone number 502-897-1794 he can help you. He is afoot and ankle specialist and he helped me. Call and it may be another month but you can get help from him.

Re: More Questions...

Ron B on 1/29/02 at 12:47 (071795)

What were some of the things that he did for you? Surgical or other?

Re: More Questions...

cindyp on 1/29/02 at 16:06 (071828)

I had a problem misdiagnosed for many years they thought it was pf. I had a mri by the v.a. and they found a large mass. They wouldn't operate as it was setting on a nerve. I saw 9 drs.before i found him. he removed the mass, and a varicose vein wrapped around the mass. he also did tts surgery. I went from years of agony and drugs to being what i feel is 90 percent recovered. he can help you.he is hard to get to see but he can help you.

Re: attempt at answers and direction

elliott on 1/29/02 at 22:54 (071883)

My troubles started in right foot in '96 in the middle of a run. Left foot started having trouble just weeks before '99 surgery on right foot. Had surgery on left foot, Jul '00. Both surgeries helped with the actual TTS pain, but I've had serious bilateral complications, which I don't want to go into now; still have Hope.

Reading your case, here's my input. When someone with bilateral TTS but little else pops onto the board, he/she is given the usual list (B12 deficiency, back trouble, etc.) of potential causes. And people make a lot of the fact that chances of TTS surgical success go up when a mass is discovered in the tarsal tunnel. But you have enough going on (flattened foot, bilateral FDALs) that it could be the whole foot structure (bone, tendons, muscles, the works) contributing to the problem (take it from someone who just had it confirmed today that he has, among other problems, bilateral accessory naviculars--extra, often troublesome bones). If that's the case, it could be the whole structure is the problem and the TTS just a byproduct. Tamper with those muscles, and maybe the foot gets even weaker. Ignore the structural issues, and maybe you get recurrence, failure or worse, even from a surgeon whose technique is good.

I understand the TTS pain, trust me I do; I've been there. And I wish I could be out there running instead of here running my mouth. Your cicumstances may be such that you may not have a choice but to opt for surgery. You've been through a lot, tried a lot and nothing is working (that seems to be par for the TTS course). But to increase your chances, you may want to consider a few things. (I believe you said you have a mostly computer desk job. If possible to do so without hurting your feet, so as not to rush things, I would try to go back to work while waiting. If you can't walk, maybe rent a power wheelchair. There are topical drugs you may not have tried which may give temporary relief. Anything not to alter your life and pressure you before you're ready.) First, I would try even more pairs of different supportive shoes and orthotics, and do so for several months each to give your feet a chance to improve. This is hard to do when sometimes these cause, at least initially, an increase in pain or discomfort, but structural problems do not resolve quickly, so you'll never know unless you give it time. Second, I'd consider taking a drive or flight (a royal pain, but you're bilateral, and the stakes seem high) to see one of those two surgeons in Ohio for a second opinion, even if you have to wait two months and even if you have to pay out of pocket (but do bring the actual MRI films, Xrays, and other relevant test material or else you're wasting your time and theirs); a couple of hundred dollars in your case is chump change. They may have a different perspective on things. They may even dismiss as inconsequential things observed in your MRI by others as significant. (As another example, even something like varicose veins pressing on a nerve may be the result of an unstable foot causing them to become engorged rather than their being just incidental veins. A rookie might just see the veins, a pro might see more.) You won't know what they say until you go. And of course, they have experience with surgery involving TTS with FDALs, a rarity. (You say your pod is board certified, 200 surgeries. And just how many of those were TTS releases? How many with FDALs?) Compare notes with your pod's approach and only then make a decision. Just some direction from a bilateral TTS veteran. I wish I had me earlier on to advise myself. But maybe I wouldn't have listened to me. :-)

---

Re: More Questions...

cindyp on 1/30/02 at 10:24 (071921)

Let me reiterate since there seems to be a question. I am not encouraging you to get surgery without looking at all the choices and options that are there. Get all the tests you can, he will probably order a few. He won't push surgery. He will find out what the problem is. then the decision is up to you. From someone who has recovered and got sick of taking a mouth full of pain killers everyday.

Re: Elliot - More Questions & Direction

cindyp on 1/29/02 at 11:24 (071788)

There is a foot and ankle man in Louisville KY with Louisville Orthopedic Clinic Dr. George Quill. Phone number 502-897-1794 he can help you. He is afoot and ankle specialist and he helped me. Call and it may be another month but you can get help from him.

Re: More Questions...

Ron B on 1/29/02 at 12:47 (071795)

What were some of the things that he did for you? Surgical or other?

Re: More Questions...

cindyp on 1/29/02 at 16:06 (071828)

I had a problem misdiagnosed for many years they thought it was pf. I had a mri by the v.a. and they found a large mass. They wouldn't operate as it was setting on a nerve. I saw 9 drs.before i found him. he removed the mass, and a varicose vein wrapped around the mass. he also did tts surgery. I went from years of agony and drugs to being what i feel is 90 percent recovered. he can help you.he is hard to get to see but he can help you.

Re: attempt at answers and direction

elliott on 1/29/02 at 22:54 (071883)

My troubles started in right foot in '96 in the middle of a run. Left foot started having trouble just weeks before '99 surgery on right foot. Had surgery on left foot, Jul '00. Both surgeries helped with the actual TTS pain, but I've had serious bilateral complications, which I don't want to go into now; still have Hope.

Reading your case, here's my input. When someone with bilateral TTS but little else pops onto the board, he/she is given the usual list (B12 deficiency, back trouble, etc.) of potential causes. And people make a lot of the fact that chances of TTS surgical success go up when a mass is discovered in the tarsal tunnel. But you have enough going on (flattened foot, bilateral FDALs) that it could be the whole foot structure (bone, tendons, muscles, the works) contributing to the problem (take it from someone who just had it confirmed today that he has, among other problems, bilateral accessory naviculars--extra, often troublesome bones). If that's the case, it could be the whole structure is the problem and the TTS just a byproduct. Tamper with those muscles, and maybe the foot gets even weaker. Ignore the structural issues, and maybe you get recurrence, failure or worse, even from a surgeon whose technique is good.

I understand the TTS pain, trust me I do; I've been there. And I wish I could be out there running instead of here running my mouth. Your cicumstances may be such that you may not have a choice but to opt for surgery. You've been through a lot, tried a lot and nothing is working (that seems to be par for the TTS course). But to increase your chances, you may want to consider a few things. (I believe you said you have a mostly computer desk job. If possible to do so without hurting your feet, so as not to rush things, I would try to go back to work while waiting. If you can't walk, maybe rent a power wheelchair. There are topical drugs you may not have tried which may give temporary relief. Anything not to alter your life and pressure you before you're ready.) First, I would try even more pairs of different supportive shoes and orthotics, and do so for several months each to give your feet a chance to improve. This is hard to do when sometimes these cause, at least initially, an increase in pain or discomfort, but structural problems do not resolve quickly, so you'll never know unless you give it time. Second, I'd consider taking a drive or flight (a royal pain, but you're bilateral, and the stakes seem high) to see one of those two surgeons in Ohio for a second opinion, even if you have to wait two months and even if you have to pay out of pocket (but do bring the actual MRI films, Xrays, and other relevant test material or else you're wasting your time and theirs); a couple of hundred dollars in your case is chump change. They may have a different perspective on things. They may even dismiss as inconsequential things observed in your MRI by others as significant. (As another example, even something like varicose veins pressing on a nerve may be the result of an unstable foot causing them to become engorged rather than their being just incidental veins. A rookie might just see the veins, a pro might see more.) You won't know what they say until you go. And of course, they have experience with surgery involving TTS with FDALs, a rarity. (You say your pod is board certified, 200 surgeries. And just how many of those were TTS releases? How many with FDALs?) Compare notes with your pod's approach and only then make a decision. Just some direction from a bilateral TTS veteran. I wish I had me earlier on to advise myself. But maybe I wouldn't have listened to me. :-)

---

Re: More Questions...

cindyp on 1/30/02 at 10:24 (071921)

Let me reiterate since there seems to be a question. I am not encouraging you to get surgery without looking at all the choices and options that are there. Get all the tests you can, he will probably order a few. He won't push surgery. He will find out what the problem is. then the decision is up to you. From someone who has recovered and got sick of taking a mouth full of pain killers everyday.