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Finally seen specialisl, Diagnosed with Classic Bilateral TTS

Posted by Ricky J. on 8/14/02 at 10:44 (092443)

It tooked a while and a hundred mile trip to see a doctor recommended to me by aother Orthopaedic. I described my symtons to the doctor and four other doc's in training. The doc said that the EMG and the NCV indicated tha I had strong indications of TTS in one foot and moderate with normal indication in the other foot. The moderate to normal foot had some spikes in it which indicated to him that this foot was also TTS. He indicated that my symptons were classic TTS. He gave me bascially three choices, conservative treatment then most likely surgery, surgery, or Nuerontin for ever. I opted to try conservative for six weeks for a try. (Molded shoe inserts). The doc and he guy molding the insert did not give me any promising hope for good resutls on the inserts, but I am willing to try. The doc told me to up my Neurontin from 1200mg to 2700 mg slowly (300 per/wk) over several weeks. He told me if I had surgery that I would be off my foot for atleast a month (two seperate surgeries), and I would not see instant benifits from the surgery, full recovery may take up to 2 years. He also wrote me a perscription for a cream that absorbes in to the feet that contains Nuerontin and other medicine.

Re: there's nothing Classic about Bilateral TTS

elliott on 8/14/02 at 12:53 (092465)

TTS is entrapment of the nerve at the medial ankle area. Why this should happen bilaterally simultaneously is one of the deeper secrets of the world.

One bilateral more-or-less simultaneous explanation is varicose veins, a condition possibly arising through exercise stressing the feet. As we've already discussed, there are loads of conditions causing what may more accurately be termed peripheral neuropathy, with the true cause sometimes showing itself only long after failed surgery. Just be careful.

---

Re: bilateral question?

Ricky J. on 8/14/02 at 14:01 (092477)

My doctor asked one of the interns is she could explain why I had bilateral and why the symptons were same for both feet. She did not know, nor did the doctor give a reason. My left foot started hurting first after about a month or two my the other foot sarted hurting. Would that be basically simultaneously?

Re: exercise stress, Elliot?

Ricky J. on 8/14/02 at 14:13 (092481)

My symptons first started at the end of hunting season for me. I was walking with extra wait usally in a fast pace in cold weather to get to the place I wanted to hunt. I would sit for several hours in a treestand inwhich my feet would usally get pretty darn cold. When I left the woods I would walk at a fast pace with the extra weight (treestand, gun, gear, thick clothes, and heavy boots) to help warm me and my cold feet up. I was doing this up to 4 times a week for three months. Note: I have been doing this since I was in High school.

Re: it's possible

elliott on 8/14/02 at 14:30 (092483)

Not surprised the docs can't explain it; as I said, it's one of the secrets of the world. Yes, a month or two would probably classify as simultaneous.

People whose jobs entail standing on cold concrete for long periods of time seem to be somewhat predisposed to contract TTS, especially if overweight (or overweighted). I asked you initially if you could think of a cause, and you said it came out of the blue. You may want to tell the docs of your suspicions. Not sure what they can do about it, but you never know. Maybe there's some drug to help the circulation following exposure to cold. If it works, you return to your happy life.

---

Re: it's possible

Ricky J. on 8/14/02 at 14:37 (092484)

I did tell the doctor about my hunting, he said that was a possiblity, but something did triggered it.

Re: Finally seen specialisl, Diagnosed with Classic Bilateral TTS

Sharon W on 8/15/02 at 07:22 (092533)

Ricky,

What was the name of the cream to rub into your feet that contains Neurontin?? It sounds like something worth knowing about...

Sharon

Re: Sharon

Ricky J. on 8/15/02 at 09:26 (092545)

The name of the prescription he gave me is Neuro Gel, he said that they mix this gel at a place in Homewood, AL , called The Compounding Shop. He gave me a sample Gel called Keto Libo Gel for trial until I recieved the Neuro Gel, I haven't used the sample yet. I am going back to Birmingham tomorrow to pick up the prescription and my molded inserts. I will try and find out more about this gel when I go.

Re: Sharon

elliott on 8/15/02 at 09:59 (092552)

I get the feeling from your posts that at least immediately post-op you have not yet gotten the relief you had hoped for. Sometimes it takes time, a lot of it, although my feeling, based on my own bilateral experience, is that post-surgery something should at least feel different (e.g., relief in some ways even if more pain in others). Regardless, we're pulling for you.

Do you still have any nervy feelings? If so, what kind matters for which topical cream to get. While they all share some common ingredients, they differ in others.

Post-op both feet, I was given three topical solutions to try, one for shooting pain, one for numbness/burning, one for tingling. The one for tingling did help somewhat for my right foot's tingling, to the tune of 30-40% pain reduction lasting for 3 hours or so. Of course, 30% reduction off infinity is still a lot of nerve pain. But at least it allowed me to keep my shoe on for longer. The other two didn't do a darn thing for either foot, although the numbness/burning in my other foot seems to be gone post-op (but I did have a very positive NCV post-op; who knows); it seems now to be serious structural issues in that foot, some of them a result of the surgery.

I can give you details of where to get a hold of these drugs if you're interested. I don't think any had neurontin in them, although there's probably no real scientific basis that topical neurontin really works. Then again, there's probably no real scientific basis for the others either. You try them, and if they work, great. It's only topical, no real risk.

---

Re: Sharon

Sharon W on 8/15/02 at 16:53 (092595)

Elliott,

I appreciate your concern.

My foot definitely DOES feel different, post-op, and while I still occasionally have 'nervy' feelings, they feel more like when I FIRST began to get shooting pains, not like the slower, 'burning' type that they had turned into as time went by. I have lots of stinging at the incision. I am actually optimistic about the prognosis. (Those who know me, know that I am NOT an optimist!)

I'm afraid of scarring, though. I just began post-op PT yesterday and have been lucky enough (this time) to get an older, experienced therapist who HAS worked with TTS patients in the past. She has been massaging the incision (OUCH!!!) and says there are already some adhesions developing, at the surface level. My pod recommended Maderma to reduce surface scarring, and I have been massaging a bit as I rub that in, but of course I don't have any expertise in it.

But my problems are billateral, too, and of course my other foot is taking the brunt of it as I begin to try to walk again (with the aid of crutches, at this point, and gradually increasing the amount of weight I put on my surgery foot). I hope NOT to require surgery on the other foot, but (unfortunately) it remains a future possibility.

I've been wondering -- how is your father doing?

Sharon

Re: To Ricky

Sharon W on 8/15/02 at 17:10 (092596)

Ricky,

Thanks for the information. I'll pass it on to my pod, see what she thinks of the idea. I do already take Neurontin (300 mg by mouth, 3 times a day) but it works remarkably well for me and I think my pod might like the idea of my applying it in a topical gel. Do you know if it is only doctors who can order this Neuro Gel from The Compounding Shop?

I would be really grateful if you could get an address for The Compounding Shop, or a link, or a fax number, or something.

Again, thank you.

Sharon

Re: To Elliott -- topical creams and gels

Sharon W on 8/15/02 at 17:45 (092601)

Elliott,

I would be very interested in how to order (or where my pod can order) topical drugs for nerve pain. I like topical drugs for exactly the reason you mentioned -- there is usually much less effect on the body as a whole, and therefore less systemic side effects. I have been using Voltaren cream for many months (it's an anti-inflammatory) and it provides considerable relief without much risk to my liver, and no problems with upsetting my stomach!

It has been 3 weeks now since my surgery, and I my 3rd and 4th toes aren't constantly numb anymore, but I still have a lot of numbness, especially when my foot swells -- and I will always have problems with swelling in that foot any time it is below the level of my heart, unless somebody develops a miracle cure for venous insufficiency. For the first week, I had a LOT of burning pain in the area served by the lateral plantar nerve -- and in fact, the first branch did show some damage. But at this point, most of that burning pain has passed. (Of course, I DON'T know how I would feel if I weren't still taking Neurontin...)

My pod said the posterior tibial nerve looked remarkably good, and (by the way) my medial calcaneal branch looked surprisingly healthy, too. So I guess it really was just the daily compression from swollen veins. No doubt, all those 'conservative modalities' we attempted before surgery have helped to preserve the posterior tibial nerve, even though they couldn't prevent those abnormal, swollen veins from putting it under enough pressure to cause major pain as each afternoon progressed to evening and then to nighttime.

Sharon

Re: topical creams and gels

elliott on 8/15/02 at 22:26 (092635)

There is a company called CustomMeds in Florida. Their number is (352) 341-1212, or (800) 226-2023. You cannot order them yourself since these are prescription drugs, compounded; believe it or not, my HMO at the time covered most of the cost upon submitting the paperwork. The three drugs are Neuropathy Gel (for tingling), Formula 5 (numbness/burning), and a needle-shaped tube for shooting pain. Around a year ago, the first cost around $60, the second around $40. I never ordered the third since the sample my doc gave me clearly didn't do anything for me.

Dad's doing great, already walking around in malls. Thanks for asking.

--

Re: Formula 5

Sharon W on 8/16/02 at 07:14 (092652)

Elliott,

Sounds like the one I probably need is Formula 5... but of course, I'll have to discuss it with my pod.

Thanks for the information; I will ask her about it.

Sharon

Re: Here I go again

Lara T on 8/16/02 at 22:09 (092710)

I got the same options - surgery, medication, or live with it. However, while giving me my choices, he slipped on a Rx compression sock (a little over-simplified, but close). I got improvement immediately, and after several weeks enough improvement that I could lead a life without my tennis, karate, long walks, etc. I highly recommend trying it. It apparently doesn't work for all that many people - but if it works, it sure beats surgery and neurontin.

Re: Here I go again

elliott on 8/17/02 at 23:12 (092801)

Presumably, this would have a better chance at working when varicose veins are the problem; for anything else the pressure on the nerve due to the compression likely would make it worse. Varicose veins apparently were at least a part of my problem, and even then an Rx sock made it worse. You make a good point, though, since it worked for you. Even if it's not likely to work, it doesn't hurt to try it for a bit and see the results.

---

Re: Finally seen specialisl, Diagnosed with Classic Bilateral TTS

BGCPed on 8/29/02 at 22:34 (093930)

I would ask the Doc on here how many times they have actually seen bi lat TTS. I dont mean being dx with it but actually having it bl. I dont understand why they felt orthotics would not help much, if so then why do they bother to order them and make them.

Perhaps your increased activity created a type of post tib tendon issue. If you over pronate or have lower arch then a good orthotic and a firm running shoe should help. Got to a good running show store or a pedorthic facility that will measure you properly and fit you in a correct shoe.

I am not a Dr but just offering another option. Good luck and try everything before you let them cut you for that

Re: it's possible

James H on 11/06/02 at 22:26 (099541)

RICKY: That is exactly how my TTS started. I was carrying heavey duck decoys over a rocky area. The sole of my right foot started to be painfull to the touch. Then a month latter it went to the left foot also. Then the tingling and numbness in the toe and sole area only. I'm still trying to figure this all out. Thanks Jim..........

Re: there's nothing Classic about Bilateral TTS

elliott on 8/14/02 at 12:53 (092465)

TTS is entrapment of the nerve at the medial ankle area. Why this should happen bilaterally simultaneously is one of the deeper secrets of the world.

One bilateral more-or-less simultaneous explanation is varicose veins, a condition possibly arising through exercise stressing the feet. As we've already discussed, there are loads of conditions causing what may more accurately be termed peripheral neuropathy, with the true cause sometimes showing itself only long after failed surgery. Just be careful.

---

Re: bilateral question?

Ricky J. on 8/14/02 at 14:01 (092477)

My doctor asked one of the interns is she could explain why I had bilateral and why the symptons were same for both feet. She did not know, nor did the doctor give a reason. My left foot started hurting first after about a month or two my the other foot sarted hurting. Would that be basically simultaneously?

Re: exercise stress, Elliot?

Ricky J. on 8/14/02 at 14:13 (092481)

My symptons first started at the end of hunting season for me. I was walking with extra wait usally in a fast pace in cold weather to get to the place I wanted to hunt. I would sit for several hours in a treestand inwhich my feet would usally get pretty darn cold. When I left the woods I would walk at a fast pace with the extra weight (treestand, gun, gear, thick clothes, and heavy boots) to help warm me and my cold feet up. I was doing this up to 4 times a week for three months. Note: I have been doing this since I was in High school.

Re: it's possible

elliott on 8/14/02 at 14:30 (092483)

Not surprised the docs can't explain it; as I said, it's one of the secrets of the world. Yes, a month or two would probably classify as simultaneous.

People whose jobs entail standing on cold concrete for long periods of time seem to be somewhat predisposed to contract TTS, especially if overweight (or overweighted). I asked you initially if you could think of a cause, and you said it came out of the blue. You may want to tell the docs of your suspicions. Not sure what they can do about it, but you never know. Maybe there's some drug to help the circulation following exposure to cold. If it works, you return to your happy life.

---

Re: it's possible

Ricky J. on 8/14/02 at 14:37 (092484)

I did tell the doctor about my hunting, he said that was a possiblity, but something did triggered it.

Re: Finally seen specialisl, Diagnosed with Classic Bilateral TTS

Sharon W on 8/15/02 at 07:22 (092533)

Ricky,

What was the name of the cream to rub into your feet that contains Neurontin?? It sounds like something worth knowing about...

Sharon

Re: Sharon

Ricky J. on 8/15/02 at 09:26 (092545)

The name of the prescription he gave me is Neuro Gel, he said that they mix this gel at a place in Homewood, AL , called The Compounding Shop. He gave me a sample Gel called Keto Libo Gel for trial until I recieved the Neuro Gel, I haven't used the sample yet. I am going back to Birmingham tomorrow to pick up the prescription and my molded inserts. I will try and find out more about this gel when I go.

Re: Sharon

elliott on 8/15/02 at 09:59 (092552)

I get the feeling from your posts that at least immediately post-op you have not yet gotten the relief you had hoped for. Sometimes it takes time, a lot of it, although my feeling, based on my own bilateral experience, is that post-surgery something should at least feel different (e.g., relief in some ways even if more pain in others). Regardless, we're pulling for you.

Do you still have any nervy feelings? If so, what kind matters for which topical cream to get. While they all share some common ingredients, they differ in others.

Post-op both feet, I was given three topical solutions to try, one for shooting pain, one for numbness/burning, one for tingling. The one for tingling did help somewhat for my right foot's tingling, to the tune of 30-40% pain reduction lasting for 3 hours or so. Of course, 30% reduction off infinity is still a lot of nerve pain. But at least it allowed me to keep my shoe on for longer. The other two didn't do a darn thing for either foot, although the numbness/burning in my other foot seems to be gone post-op (but I did have a very positive NCV post-op; who knows); it seems now to be serious structural issues in that foot, some of them a result of the surgery.

I can give you details of where to get a hold of these drugs if you're interested. I don't think any had neurontin in them, although there's probably no real scientific basis that topical neurontin really works. Then again, there's probably no real scientific basis for the others either. You try them, and if they work, great. It's only topical, no real risk.

---

Re: Sharon

Sharon W on 8/15/02 at 16:53 (092595)

Elliott,

I appreciate your concern.

My foot definitely DOES feel different, post-op, and while I still occasionally have 'nervy' feelings, they feel more like when I FIRST began to get shooting pains, not like the slower, 'burning' type that they had turned into as time went by. I have lots of stinging at the incision. I am actually optimistic about the prognosis. (Those who know me, know that I am NOT an optimist!)

I'm afraid of scarring, though. I just began post-op PT yesterday and have been lucky enough (this time) to get an older, experienced therapist who HAS worked with TTS patients in the past. She has been massaging the incision (OUCH!!!) and says there are already some adhesions developing, at the surface level. My pod recommended Maderma to reduce surface scarring, and I have been massaging a bit as I rub that in, but of course I don't have any expertise in it.

But my problems are billateral, too, and of course my other foot is taking the brunt of it as I begin to try to walk again (with the aid of crutches, at this point, and gradually increasing the amount of weight I put on my surgery foot). I hope NOT to require surgery on the other foot, but (unfortunately) it remains a future possibility.

I've been wondering -- how is your father doing?

Sharon

Re: To Ricky

Sharon W on 8/15/02 at 17:10 (092596)

Ricky,

Thanks for the information. I'll pass it on to my pod, see what she thinks of the idea. I do already take Neurontin (300 mg by mouth, 3 times a day) but it works remarkably well for me and I think my pod might like the idea of my applying it in a topical gel. Do you know if it is only doctors who can order this Neuro Gel from The Compounding Shop?

I would be really grateful if you could get an address for The Compounding Shop, or a link, or a fax number, or something.

Again, thank you.

Sharon

Re: To Elliott -- topical creams and gels

Sharon W on 8/15/02 at 17:45 (092601)

Elliott,

I would be very interested in how to order (or where my pod can order) topical drugs for nerve pain. I like topical drugs for exactly the reason you mentioned -- there is usually much less effect on the body as a whole, and therefore less systemic side effects. I have been using Voltaren cream for many months (it's an anti-inflammatory) and it provides considerable relief without much risk to my liver, and no problems with upsetting my stomach!

It has been 3 weeks now since my surgery, and I my 3rd and 4th toes aren't constantly numb anymore, but I still have a lot of numbness, especially when my foot swells -- and I will always have problems with swelling in that foot any time it is below the level of my heart, unless somebody develops a miracle cure for venous insufficiency. For the first week, I had a LOT of burning pain in the area served by the lateral plantar nerve -- and in fact, the first branch did show some damage. But at this point, most of that burning pain has passed. (Of course, I DON'T know how I would feel if I weren't still taking Neurontin...)

My pod said the posterior tibial nerve looked remarkably good, and (by the way) my medial calcaneal branch looked surprisingly healthy, too. So I guess it really was just the daily compression from swollen veins. No doubt, all those 'conservative modalities' we attempted before surgery have helped to preserve the posterior tibial nerve, even though they couldn't prevent those abnormal, swollen veins from putting it under enough pressure to cause major pain as each afternoon progressed to evening and then to nighttime.

Sharon

Re: topical creams and gels

elliott on 8/15/02 at 22:26 (092635)

There is a company called CustomMeds in Florida. Their number is (352) 341-1212, or (800) 226-2023. You cannot order them yourself since these are prescription drugs, compounded; believe it or not, my HMO at the time covered most of the cost upon submitting the paperwork. The three drugs are Neuropathy Gel (for tingling), Formula 5 (numbness/burning), and a needle-shaped tube for shooting pain. Around a year ago, the first cost around $60, the second around $40. I never ordered the third since the sample my doc gave me clearly didn't do anything for me.

Dad's doing great, already walking around in malls. Thanks for asking.

--

Re: Formula 5

Sharon W on 8/16/02 at 07:14 (092652)

Elliott,

Sounds like the one I probably need is Formula 5... but of course, I'll have to discuss it with my pod.

Thanks for the information; I will ask her about it.

Sharon

Re: Here I go again

Lara T on 8/16/02 at 22:09 (092710)

I got the same options - surgery, medication, or live with it. However, while giving me my choices, he slipped on a Rx compression sock (a little over-simplified, but close). I got improvement immediately, and after several weeks enough improvement that I could lead a life without my tennis, karate, long walks, etc. I highly recommend trying it. It apparently doesn't work for all that many people - but if it works, it sure beats surgery and neurontin.

Re: Here I go again

elliott on 8/17/02 at 23:12 (092801)

Presumably, this would have a better chance at working when varicose veins are the problem; for anything else the pressure on the nerve due to the compression likely would make it worse. Varicose veins apparently were at least a part of my problem, and even then an Rx sock made it worse. You make a good point, though, since it worked for you. Even if it's not likely to work, it doesn't hurt to try it for a bit and see the results.

---

Re: Finally seen specialisl, Diagnosed with Classic Bilateral TTS

BGCPed on 8/29/02 at 22:34 (093930)

I would ask the Doc on here how many times they have actually seen bi lat TTS. I dont mean being dx with it but actually having it bl. I dont understand why they felt orthotics would not help much, if so then why do they bother to order them and make them.

Perhaps your increased activity created a type of post tib tendon issue. If you over pronate or have lower arch then a good orthotic and a firm running shoe should help. Got to a good running show store or a pedorthic facility that will measure you properly and fit you in a correct shoe.

I am not a Dr but just offering another option. Good luck and try everything before you let them cut you for that

Re: it's possible

James H on 11/06/02 at 22:26 (099541)

RICKY: That is exactly how my TTS started. I was carrying heavey duck decoys over a rocky area. The sole of my right foot started to be painfull to the touch. Then a month latter it went to the left foot also. Then the tingling and numbness in the toe and sole area only. I'm still trying to figure this all out. Thanks Jim..........