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Having a lot of trouble...

Posted by Megan C. on 11/20/01 at 15:06 (065007)

Hi my name is Megan. I had tarsal tunnel release surgery about a year ago. And I have been taking the medicine Neurontin for a little over a year and have been to physical therapy. But none of these things have helped my pain. Is there anyone out there who has gone through similar circumstances? I'm now possibly facing another surgery as a last resort to help the pain. I would really appreciate any advice anyone might have.

Megan

Re: Having a lot of trouble...

BrianG on 11/20/01 at 18:12 (065015)

Hi Megan,

I find it interesting that you are 'facing surgery as a last resort to help the pain' Is this the same doctor who operated the 1st time? Is he guaranteeing that you will have no more pain? If he was, I'd have the surgery in a second. There are many people here who have had 2 and 3 surgeries without a cure. My advice is to check this doctor out, don't become another statistic. Each failed surgery leaves more scar tissue, don't let them suck them in. More surgery should be the very last resort. Good luck

BCG

Re: Having a lot of trouble...

wendyn on 11/20/01 at 21:09 (065029)

I'm with Brian on this one. If you've had one surgery that didn't work, another one may very well not help either. Do the doctors have any idea what's causing your symptoms?

Re: Having a lot of trouble...

Fran W on 11/21/01 at 00:31 (065034)

I can understand how you feel. I too had surgery for TT a year and a half ago on both feet and still have pain. I take Neurontin and an anti-depressant (Effexor). Just started with a new doctor and he is trying to rule out other sources of my pain. One might be neuropathy. I may have to change my medication, which is what you might want to consider. I would try this before another surgery. In my case, if I knew I would continue to have this much pain I never would have had surgery. Keep me posted and
please let me know if you come up with anything new. Fran

Re: Having a lot of trouble...

Dr. Zuckerman on 11/21/01 at 07:46 (065040)

Hi,

Sorry to hear that you are in so much pain. I would get one or two more opinions before a third surgery. No doctor will be able to guarantee your outcome but you can increase your chances of sucess by education and this site will provide you with alot of good information. Would be happy to help you in anyway with any questions you may have.

Re: please elaborate

elliott on 11/21/01 at 08:42 (065042)

'Pain' is too generic a word. Could you elaborate about exactly what and where your pain was and is, what probably caused it, what if anything was done or found at surgery, what if anything changed from pre- to post-surgery, etc. Excruciating detail will hurt you only once. :-) Then others here may get a better handle on what advice to offer.

Re: please elaborate

Megan C. on 11/21/01 at 18:34 (065068)

Elliot, before I had the surgery my pain was a throbing one in my foot and a hyper-sensitive area on the top of my foot that would send a pins and needle type pain if touched. Now, the pain is even more severe. I get a sharp pain on the inner side of my foot that travels up and on the outer side of my foot that travles up. The sensitive area on the top of my foot has also returned. I also can't go even half a day keeping my show on. It feels like my foot is just going to explode in it. The neurontin hasn't helped and has also had a lot of bad effects on me. And regular pain relievers don't help either. I hope this explains a little better. Thanks a bunch.

Megan

Re: a few more details may help

elliott on 11/22/01 at 09:41 (065080)

1. Where was the throbbing pain in your foot pre-surgery?

2. When you say hyper-sensitive area on top of your foot, do you mean at instep (where the foot connects to the leg) or do you mean further away, say at the ball or metatarsals? And is it dead center, inner side, or outer side?

3. What kind of surgery did you have? Was it the standard tarsal tunnel release (with a kind of L-shaped incision behind and under the inner ankle)? Anything noteworthy observed by the surgeon?

4. Did you have that pain on the outer side of your foot pre-surgery?

5. When wearing shoes, where does it feel like your foot is going to explode?

---

Re: a few more details may help

Megan C. on 11/22/01 at 14:29 (065087)

Before my surgery the throbbing pain was as it is now, but not quite as bad. It is an all over throbing. The sensitive area on the top of my foot is about 2 inches below my 3rd toe. The surgery was a standard one, and the doctor did say that my nerve was entrapped, which he said seemed promising. He said sometimes when he does the surgery he doesn't find anything, but with me the nerve was clearly entrapped, so he released it. I didn't have the pain on the outer side of my foot before surgery. But it does hurt really bad, about a 10 on a 1-10 level. I also have a throbbing pain on the bottom of my foot in the middle. When I wear shoes, it just feels like my whole foot is throbing and that my foot is just too small for my shoe. I am a little more worried this time around because my foot is hurting so much more that before my surgery. I hope that helped a little more. I thank you so much for helping.

Megan

Re: narrowing things down

elliott on 11/22/01 at 14:54 (065088)

It's important to know exactly where one's pain is, something hard to do over the internet. The sensitive area on top of your foot sounds like it could be a (Morton's) neuroma, presumably unconnected with your TTS.

I have to ask one more question: when you say it was entrapped, did the doc say by what? (Some possibilities are vein, tight muscle, bone spur/fragment, flexor retinaculum, etc.) If not, you may want to ask him. Maybe one more question: is your pain definitely nervy (e.g. numbness, burning, tingling, electric shock, pins/needles, others harder to describe) or are you not sure (which is OK too). And one more: what, if anything, brought about your initial symptoms, and how soon after surgery did you get the new symptoms?

The pain on the outer side of the foot going up (the calf, I presume you mean), if nerve-related, would be a different set of nerves than the ones operated on.

You have other symptoms as well (e.g. bottom of foot in the middle, which, based on your description of feeling crimped, may be related to that possible neuroma, but so hard to tell without knowing the exact location). Maybe the docs here can add some input.

Don't rush into surgery just yet. There are things to try first, e.g. lidocaine/marcaine or cortisone shots, orthotics, etc. Strongly recommend you seek alternative opinions. A respected podiatrist may be a good start.

-----------

Re: narrowing things down

Megan C. on 11/22/01 at 18:57 (065093)

I know the doctor told me what had entrapped the nerve, but I forget now. But I do know my pain is definitely nervy. I get pins and needles all the time near the arch of my foot also. I also get the tingling sensation when I touch the top of my foot. I know this is very hard to understand over the internet, as it is very hard to explain. But I have had cortisone shots, orthodics for my shoes, a walking cast to immobilize my foot, and I've had PT. (Sorry I forgot to tell you that in the beginning). I am going to see a new doctor on the 30th, so hopefully he will also be able to shed some light on this. But I do thank you for your help. I hope this new info helped...

Megan

Re: narrowing things down

eileenc on 11/24/01 at 08:41 (065128)

Been in your shoes (no pun intended --- well, yes it is!).
Unsuccessful TT release... possible suggestions.

1. Put your foot in a 'container' ( I used a small roaster pan) filled with water and a tray of ice-cubes for 20-30 minutes. I did it once a day for 9 months and it reduced swelling.

2. I take 2000mg of Neurontin 5 times a day (instead of the 3xday) to keep the medicine at a more constant level. If it bothers you too much, there are other anti-seizure meds which work for some people.

3. I only wear shoes which do not touch the TT area. Low cut tennis shoes (Easy Spirit AP1) and I just found some clog-like shoes from Dexter ('walking mocs').

4. At night for 3 1/2 years I would sleep with a plastic ice pack ( one of those rectangular blue ones you put in picnic coolers) on my ankle. Put a fairly thick sock of your own on, then I would put a larger sock on ( used one of my husband's athletic socks), and slip the ice pack between them.

Good luck.

Re: narrowing things down

Megan C. on 11/24/01 at 12:22 (065150)

Thank you! I will try some of these things. You also had an unsuccessful TT release? How is your foot doing now? Thanks for the suggestions!!

Re: wow! that's a high dose of neurontin

elliott on 11/25/01 at 09:16 (065181)

When you say you take 2000 mgs of neurontin 5 times a day, do you mean 5 x 2000 mgs or 5 x 400 mgs? Either way, sounds really high. I only built up to around 3 x 100 mgs. Started to have minor stomach problems, wasn't doing anything anyway, decided it wasn't worth it. Are you having any major side effects? At your high dose, does it work well? I guess not enough to allow you to wear regular shoes. Do you know what exactly caused your TTS? Did they find anything at surgery? Did you get any relief? Are you contemplating another surgery? (So many questions...)

Re: wow! that's a high dose of neurontin

wendyn on 11/25/01 at 10:46 (065192)

Elliott, when I've cruised through the neuropathy bb - there are a lot of people on there taking VERY high doses of neurontin. I can't recall the exact amounts off hand - but I think it was considerably more than what you take.

I think what most doctors do is start people off low, and then work the amounts up to find a good balance between pain relief and minimal side effects. Bearing in mind though that most of the people on that board sound like they live with pain that is far beyond what most of us here ever have to deal with.

Re: wow! that's a high dose of neurontin

eileenc on 11/25/01 at 12:16 (065198)

OOps -- I misspoke!! 400mg taken 5 times a day. No stomach problems ( I can't take anti-inflamatories due to stomach problems) but I do feel like a zombie. After a long time trying to do without I gave in to this drug.

My foot is a little better because I no longer must put the ice-packs on to sleep at night, but it is had to tell. I was sent to a pain clinic for TTS and came out of there with a permanently injured back which gives me more pain than the foot -- 24/7! Don't ever let an osteopath 'unlock your sacroiliac joint'!

Can't even consider getting help for the foot until I clear up the back problem --- which will never happen. You think nobody knows anything about TTS; try finding someone who knows how to treat a sacroiliac injury or even believes that it can be a problem.

Re: uh-oh

elliott on 11/25/01 at 13:50 (065217)

I'm really sorry to hear that. We're all suffering here too much.

I was almost ready to give in and get either PT traction (the 'rack') or chiropractic alignments (youch!) for my L4-L5-induced sciatica. I just can't sit long on any cushioned seat (including my car's). Yoga does help, but so far no cure. You've given me pause. A co-worker who has the same thing (but leg pain instead of my butt/hamstring pain) just happens to have two relatives with the same thing, and of course one who apparently was permanently messed up by PT, the other apparently permanently messed up by a chiro (but time will tell). Regarding surgery, my neuro gave me a 99% chance of success with 20% chance of later recurrence. Two workers in my office had success with surgery so far. Met another guy today I know who went the surgery route, I asked him how he's feeling, and he said his pain level is reduced but still there, and that he heard it takes around 10 months to go away completely. I told him I heard it takes around 10 months until recurrence. :-)

Hope you recover--from everything. If you have time, could you answer the other questions I asked in my previous post to you? Thanks.

Re: wow! that's a high dose of neurontin

elliott on 11/25/01 at 13:57 (065220)

If it were temporary, I'd consider the high dose option more strongly. To take high doses forever without end in sight, well... OTOH, my TTS pain level is actually quite a bit lower than it was back in December, when life was almost unbearable and I would've tried just about anything. I now have a glimmer of hope that maybe that foot will come around (but how long is one supposed to wait before knowing?).

Re: wow! that's a high dose of neurontin

wendyn on 11/25/01 at 21:00 (065254)

Elliott, I know what you mean about not wanting to take high doses forever. Most of the folks on that neuropathy board have unremitting pain, many all over their whole bodies. I suppose faced with a life time of that, or the side effects from meds...I guess I'd take the side effects too.

How long?

I've had TTS for 3 years, and it's a lot better than it used to be. Since no one thinks surgery is a good idea for me...I make the best of it. But if my pain level 2 years ago was an 8, it rarely goes above a 3 now.

Re: uh-oh

eileenc on 12/01/01 at 09:24 (065805)

Answering your questions;

Sprained inside of my ankle on stairs -- minimal sprain, minimal swelling, no bruising -- and it seemed to get better. Over the course of a year pain increased steadily. Did all of the traditional things with no improvement.

Surgery over a year later found scar tissue wrapped around the nerve, blood vessels, etc.; it was 'released'.

Am not sure if it ever felt better (maybe a little for a few months) because I was in such excrutiating back pain from the osteopathic manipulation.

Neurontin: my 'high' level helps me function, takes away most of the burning, but there is still some pain.
Side effects so far are just a permanent 'spacey' feeling. I teach high school mathematics so I am not used to feeling like a veil over my brain has reduced my IQ by about 20 points.

Re: thanks. hope you recover (nm)

elliott on 12/03/01 at 15:05 (065997)

.

Re: Having a lot of trouble...

BrianG on 11/20/01 at 18:12 (065015)

Hi Megan,

I find it interesting that you are 'facing surgery as a last resort to help the pain' Is this the same doctor who operated the 1st time? Is he guaranteeing that you will have no more pain? If he was, I'd have the surgery in a second. There are many people here who have had 2 and 3 surgeries without a cure. My advice is to check this doctor out, don't become another statistic. Each failed surgery leaves more scar tissue, don't let them suck them in. More surgery should be the very last resort. Good luck

BCG

Re: Having a lot of trouble...

wendyn on 11/20/01 at 21:09 (065029)

I'm with Brian on this one. If you've had one surgery that didn't work, another one may very well not help either. Do the doctors have any idea what's causing your symptoms?

Re: Having a lot of trouble...

Fran W on 11/21/01 at 00:31 (065034)

I can understand how you feel. I too had surgery for TT a year and a half ago on both feet and still have pain. I take Neurontin and an anti-depressant (Effexor). Just started with a new doctor and he is trying to rule out other sources of my pain. One might be neuropathy. I may have to change my medication, which is what you might want to consider. I would try this before another surgery. In my case, if I knew I would continue to have this much pain I never would have had surgery. Keep me posted and
please let me know if you come up with anything new. Fran

Re: Having a lot of trouble...

Dr. Zuckerman on 11/21/01 at 07:46 (065040)

Hi,

Sorry to hear that you are in so much pain. I would get one or two more opinions before a third surgery. No doctor will be able to guarantee your outcome but you can increase your chances of sucess by education and this site will provide you with alot of good information. Would be happy to help you in anyway with any questions you may have.

Re: please elaborate

elliott on 11/21/01 at 08:42 (065042)

'Pain' is too generic a word. Could you elaborate about exactly what and where your pain was and is, what probably caused it, what if anything was done or found at surgery, what if anything changed from pre- to post-surgery, etc. Excruciating detail will hurt you only once. :-) Then others here may get a better handle on what advice to offer.

Re: please elaborate

Megan C. on 11/21/01 at 18:34 (065068)

Elliot, before I had the surgery my pain was a throbing one in my foot and a hyper-sensitive area on the top of my foot that would send a pins and needle type pain if touched. Now, the pain is even more severe. I get a sharp pain on the inner side of my foot that travels up and on the outer side of my foot that travles up. The sensitive area on the top of my foot has also returned. I also can't go even half a day keeping my show on. It feels like my foot is just going to explode in it. The neurontin hasn't helped and has also had a lot of bad effects on me. And regular pain relievers don't help either. I hope this explains a little better. Thanks a bunch.

Megan

Re: a few more details may help

elliott on 11/22/01 at 09:41 (065080)

1. Where was the throbbing pain in your foot pre-surgery?

2. When you say hyper-sensitive area on top of your foot, do you mean at instep (where the foot connects to the leg) or do you mean further away, say at the ball or metatarsals? And is it dead center, inner side, or outer side?

3. What kind of surgery did you have? Was it the standard tarsal tunnel release (with a kind of L-shaped incision behind and under the inner ankle)? Anything noteworthy observed by the surgeon?

4. Did you have that pain on the outer side of your foot pre-surgery?

5. When wearing shoes, where does it feel like your foot is going to explode?

---

Re: a few more details may help

Megan C. on 11/22/01 at 14:29 (065087)

Before my surgery the throbbing pain was as it is now, but not quite as bad. It is an all over throbing. The sensitive area on the top of my foot is about 2 inches below my 3rd toe. The surgery was a standard one, and the doctor did say that my nerve was entrapped, which he said seemed promising. He said sometimes when he does the surgery he doesn't find anything, but with me the nerve was clearly entrapped, so he released it. I didn't have the pain on the outer side of my foot before surgery. But it does hurt really bad, about a 10 on a 1-10 level. I also have a throbbing pain on the bottom of my foot in the middle. When I wear shoes, it just feels like my whole foot is throbing and that my foot is just too small for my shoe. I am a little more worried this time around because my foot is hurting so much more that before my surgery. I hope that helped a little more. I thank you so much for helping.

Megan

Re: narrowing things down

elliott on 11/22/01 at 14:54 (065088)

It's important to know exactly where one's pain is, something hard to do over the internet. The sensitive area on top of your foot sounds like it could be a (Morton's) neuroma, presumably unconnected with your TTS.

I have to ask one more question: when you say it was entrapped, did the doc say by what? (Some possibilities are vein, tight muscle, bone spur/fragment, flexor retinaculum, etc.) If not, you may want to ask him. Maybe one more question: is your pain definitely nervy (e.g. numbness, burning, tingling, electric shock, pins/needles, others harder to describe) or are you not sure (which is OK too). And one more: what, if anything, brought about your initial symptoms, and how soon after surgery did you get the new symptoms?

The pain on the outer side of the foot going up (the calf, I presume you mean), if nerve-related, would be a different set of nerves than the ones operated on.

You have other symptoms as well (e.g. bottom of foot in the middle, which, based on your description of feeling crimped, may be related to that possible neuroma, but so hard to tell without knowing the exact location). Maybe the docs here can add some input.

Don't rush into surgery just yet. There are things to try first, e.g. lidocaine/marcaine or cortisone shots, orthotics, etc. Strongly recommend you seek alternative opinions. A respected podiatrist may be a good start.

-----------

Re: narrowing things down

Megan C. on 11/22/01 at 18:57 (065093)

I know the doctor told me what had entrapped the nerve, but I forget now. But I do know my pain is definitely nervy. I get pins and needles all the time near the arch of my foot also. I also get the tingling sensation when I touch the top of my foot. I know this is very hard to understand over the internet, as it is very hard to explain. But I have had cortisone shots, orthodics for my shoes, a walking cast to immobilize my foot, and I've had PT. (Sorry I forgot to tell you that in the beginning). I am going to see a new doctor on the 30th, so hopefully he will also be able to shed some light on this. But I do thank you for your help. I hope this new info helped...

Megan

Re: narrowing things down

eileenc on 11/24/01 at 08:41 (065128)

Been in your shoes (no pun intended --- well, yes it is!).
Unsuccessful TT release... possible suggestions.

1. Put your foot in a 'container' ( I used a small roaster pan) filled with water and a tray of ice-cubes for 20-30 minutes. I did it once a day for 9 months and it reduced swelling.

2. I take 2000mg of Neurontin 5 times a day (instead of the 3xday) to keep the medicine at a more constant level. If it bothers you too much, there are other anti-seizure meds which work for some people.

3. I only wear shoes which do not touch the TT area. Low cut tennis shoes (Easy Spirit AP1) and I just found some clog-like shoes from Dexter ('walking mocs').

4. At night for 3 1/2 years I would sleep with a plastic ice pack ( one of those rectangular blue ones you put in picnic coolers) on my ankle. Put a fairly thick sock of your own on, then I would put a larger sock on ( used one of my husband's athletic socks), and slip the ice pack between them.

Good luck.

Re: narrowing things down

Megan C. on 11/24/01 at 12:22 (065150)

Thank you! I will try some of these things. You also had an unsuccessful TT release? How is your foot doing now? Thanks for the suggestions!!

Re: wow! that's a high dose of neurontin

elliott on 11/25/01 at 09:16 (065181)

When you say you take 2000 mgs of neurontin 5 times a day, do you mean 5 x 2000 mgs or 5 x 400 mgs? Either way, sounds really high. I only built up to around 3 x 100 mgs. Started to have minor stomach problems, wasn't doing anything anyway, decided it wasn't worth it. Are you having any major side effects? At your high dose, does it work well? I guess not enough to allow you to wear regular shoes. Do you know what exactly caused your TTS? Did they find anything at surgery? Did you get any relief? Are you contemplating another surgery? (So many questions...)

Re: wow! that's a high dose of neurontin

wendyn on 11/25/01 at 10:46 (065192)

Elliott, when I've cruised through the neuropathy bb - there are a lot of people on there taking VERY high doses of neurontin. I can't recall the exact amounts off hand - but I think it was considerably more than what you take.

I think what most doctors do is start people off low, and then work the amounts up to find a good balance between pain relief and minimal side effects. Bearing in mind though that most of the people on that board sound like they live with pain that is far beyond what most of us here ever have to deal with.

Re: wow! that's a high dose of neurontin

eileenc on 11/25/01 at 12:16 (065198)

OOps -- I misspoke!! 400mg taken 5 times a day. No stomach problems ( I can't take anti-inflamatories due to stomach problems) but I do feel like a zombie. After a long time trying to do without I gave in to this drug.

My foot is a little better because I no longer must put the ice-packs on to sleep at night, but it is had to tell. I was sent to a pain clinic for TTS and came out of there with a permanently injured back which gives me more pain than the foot -- 24/7! Don't ever let an osteopath 'unlock your sacroiliac joint'!

Can't even consider getting help for the foot until I clear up the back problem --- which will never happen. You think nobody knows anything about TTS; try finding someone who knows how to treat a sacroiliac injury or even believes that it can be a problem.

Re: uh-oh

elliott on 11/25/01 at 13:50 (065217)

I'm really sorry to hear that. We're all suffering here too much.

I was almost ready to give in and get either PT traction (the 'rack') or chiropractic alignments (youch!) for my L4-L5-induced sciatica. I just can't sit long on any cushioned seat (including my car's). Yoga does help, but so far no cure. You've given me pause. A co-worker who has the same thing (but leg pain instead of my butt/hamstring pain) just happens to have two relatives with the same thing, and of course one who apparently was permanently messed up by PT, the other apparently permanently messed up by a chiro (but time will tell). Regarding surgery, my neuro gave me a 99% chance of success with 20% chance of later recurrence. Two workers in my office had success with surgery so far. Met another guy today I know who went the surgery route, I asked him how he's feeling, and he said his pain level is reduced but still there, and that he heard it takes around 10 months to go away completely. I told him I heard it takes around 10 months until recurrence. :-)

Hope you recover--from everything. If you have time, could you answer the other questions I asked in my previous post to you? Thanks.

Re: wow! that's a high dose of neurontin

elliott on 11/25/01 at 13:57 (065220)

If it were temporary, I'd consider the high dose option more strongly. To take high doses forever without end in sight, well... OTOH, my TTS pain level is actually quite a bit lower than it was back in December, when life was almost unbearable and I would've tried just about anything. I now have a glimmer of hope that maybe that foot will come around (but how long is one supposed to wait before knowing?).

Re: wow! that's a high dose of neurontin

wendyn on 11/25/01 at 21:00 (065254)

Elliott, I know what you mean about not wanting to take high doses forever. Most of the folks on that neuropathy board have unremitting pain, many all over their whole bodies. I suppose faced with a life time of that, or the side effects from meds...I guess I'd take the side effects too.

How long?

I've had TTS for 3 years, and it's a lot better than it used to be. Since no one thinks surgery is a good idea for me...I make the best of it. But if my pain level 2 years ago was an 8, it rarely goes above a 3 now.

Re: uh-oh

eileenc on 12/01/01 at 09:24 (065805)

Answering your questions;

Sprained inside of my ankle on stairs -- minimal sprain, minimal swelling, no bruising -- and it seemed to get better. Over the course of a year pain increased steadily. Did all of the traditional things with no improvement.

Surgery over a year later found scar tissue wrapped around the nerve, blood vessels, etc.; it was 'released'.

Am not sure if it ever felt better (maybe a little for a few months) because I was in such excrutiating back pain from the osteopathic manipulation.

Neurontin: my 'high' level helps me function, takes away most of the burning, but there is still some pain.
Side effects so far are just a permanent 'spacey' feeling. I teach high school mathematics so I am not used to feeling like a veil over my brain has reduced my IQ by about 20 points.

Re: thanks. hope you recover (nm)

elliott on 12/03/01 at 15:05 (065997)

.