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TTS Relief - Nothing works!

Posted by Lisa H on 9/01/02 at 20:58 (094176)

I'm seeing my DPM in a couple weeks for a follow up, but would like some advice from fellow TTS sufferers. My TTS was diagnosed about 8 months ago by a neurologist.

I've tried everything short of surgery. I've been on many anti-inflammatories - naprosyn, celebrex, vioxx, relafen and most recently, bextra. None of them have helped at all. I've had physical therapy with steroids/TENS unit (iontophoresis) and stretching exercises until I was near tears from the pain. I've got orthotics that set me back $275 - my health insurance doesn't cover the cost. I've had them for over 2 months. I spent a month in a cast. The inconvenience was worth it, as the cast was the only thing that provided any sort of relief. Pain came back about 4 weeks after the cast came off. But I had a month that was great!
I have near constant pain. Right now I live on ibuprofen - if I had to estimate it would be about 3000 milligrams a day (4 200's 3x/day). No one in my family understands the kind of pain I'm in. Usually, if I'm sitting on a sofa with my foot elevated and iced, I get a sarcastic 'What, your foot hurts again?' No, my foot ALWAYS hurts. It's frustrating. I also get the 'red sock' phoenomenon when my foot is in water - warm or cold. It's bizarre, if you ask me!

How long is the recovery period after surgery? I don't have an 'on your feet' job during the day. (Which really mystifies my podiatrist - he has no idea how I got TTS!) Would it be possible to return to work in a week or so using crutches/wheelchair? Or should I go the route of compression socks?
Thanks for any help/advice you guys can provide. I visit this board every two weeks or so and it's comforting to know there are others out there that have this affliction.

Re: Neurontin ?

BrianG on 9/01/02 at 22:50 (094184)

Hi Lisa H,

I don't have TTS (I have PF), but it sounds like you should be trying a different class of drugs. For nerve type pain, most people seem to be taking Neurontin, and other anti-seizure meds. Something to talk to your doc about. Also, Rest !!!!

Good luck
BrianG

PS: Document everything, you never know how far this injury will take you! Lastly, save surgery for your very last treatment. It can make you worse!!

Re: TTS Relief - Nothing works!

Julie on 9/02/02 at 03:22 (094190)

Lisa, have you read Wendy's FAQ on TTS? There's a link at the top of the page: do have a look, it's extremely informative and helpful.

I doubt whether you'd be able to return to work a week after TTS surgery, but I'm sure some of the people who have had TTS surgery will respond to your question.

Re: TTS Relief - Nothing works!

Sharon W on 9/02/02 at 11:19 (094220)

Lisa,

I doubt if you would be up to going back to work in a wheelchair or crutches, one week after surgery. I was not even supposed to touch my foot to the ground, at that point, and I was still taking prescription pain meds. I gather it is typical to take the stitches (or staples) out about 10 days to 2 weeks after surgery (in my case, it was 12 days).

At 2 weeks, I was able to change from the splint to my air boot (walking cast) and was allowed to touch the surgery foot to the ground, but not to walk on it (I was still using crutches and wheelchair to get around). I had stopped taking the prescription pain meds by then, except sometimes at night if it was REALLY sore.

At 3 weeks, my foot was still very sore and hard to move. I was just beginning physical therapy. I was still pretty weak; my energy level definitely had NOT completely returned to normal by that point. I wasn't using the wheelchair quite as much anymore; I was hobbling around on crutches and wearing the walking cast, finally just barely BEGINNING to try to walk a few steps putting most of my weight on my surgery foot.

Now, 6 weeks after the surgery, I'm not using crutches or even using my cane anymore, but I'm still wearing the walking boot cast any time I'm on my feet, and I still have to lie down and rest several times a day with my foot up. (The surgery foot starts to swell up as the day progresses, and it still HURTS when that happens.)

My surgery foot has gone back to having a normal range of motion, though, and while it does feel like something is 'pulling' around my scar as I move my foot around, I'm feeling pretty good about that. Just this coming week, I am scheduled to BEGIN to wear a regular shoe while walking, but of course, my pod wants me to take it slow and easy...

That might sound like really slow progress to you, but if you read up on other people's experiences, I think you'll find that it is neither the slowest progression after surgery, nor the fastest. (Then again, I'm convinced that being too much in a rush to recover from this surgery can actually hurt your chances for your surgery to be a SUCCESS!)

And I do think (so far) that my surgery is probably a success. MY FOOT HURTS A LOT LESS THAN BEFORE THE SURGERY, and I feel VERY good about that!

Sharon

Re: TTS Relief - Nothing works!

Cheri A on 9/02/02 at 13:47 (094244)

Sometimes I get so tired of having to defend my pain! I know you need to have people close to you acknowledge your pain. I had surgery in 2000, and I have been in constant pain since then, but not as bad as the pain I had before the surgery. I take 600 mg. of Neurontin at night, and I take Ultram usually in the afternoon. The dose of Neurontin is all I can tolerate because of side effects, but it helps the burning pain by taking the 'edge' off. The Ultram is very helpful for taking the 'edge' off. The pain is better some days than others, and I am thankful for that. On really bad days, I just use my crutches at work to keep the weight off my foot, and that seems to help it. I don't care what people at work think, or anyone else for that matter! I haven't always felt that way, but I think I have accepted the fact that some people will think I am faking it, some will think it can't be that bad, and some people will think I am a sissy for not being able to tough it out. I have to let their lack of understanding and compassion be their problem and not mine.
I use an elastic 'sock' to help the swelling, but I can't take the anti inflammatory meds because of stomach problems.
I don't have 'red sock', but sometimes I can't tell if my feet are hot or cold, which seems weird to me.
I also use ice packs sometimes, and I took physical therapy (workman's comp wouldn't pay for that!!). I think the therapy helped my flexibility
and strengthend my ankles, but it did not decrease the level of pain.
Every case is different, so I hope I didn't give you any discouragement.
Some people have reported getting much better after surgery!

Re: TTS Relief - Nothing works!

KathyB on 9/05/02 at 19:40 (094557)

A. Go to doctor get pain killers and get out of pain so you can think straight. If doctor does not want to give you good pain killers, get another doctor. If the pain killers are not good enough, call doctor and get better ones.

B. It does not matter how you got TTS, get your doctor to get you on the first stage drugs like neurontin, topamax and others you may have read here. If he doesn't know about these drugs get another doctor that does.

C. Do not go to surgery unless the docotr knows where to cut and why. It does no good to fish around with no real idea where or what or why. Don't be among the 50% that have surgery and it does no go. You should have all of the tests first to see if they can pin down the cause.
D. See someone about how down you are about the lack of support you are getting at home and how down the pain is getting you. It is hard enough fighting this condition than to try to do it while down or downright depressed. Don't feel you are alone, pain causes depression as sure as I am sitting here. I know I have gone that route and back again.

Take care of your self.

Re: TTS Relief - Nothing works!

Lara T on 9/30/02 at 06:57 (096494)

I'd definitely try compression socks before surgery. I haven't posted for awhile (had knee surgery!), but I'm pretty much a cheerleader for compression socks. I relaize they don't help a lot of people, but they are relatively inexpensive, non-invasive, and if you have an adverse reaction, you can just take the socks off. You can get OTC compression socks (most people get them for varicose veins). I don't know if I would have noticed a difference with them. I had mild & moderate RX compression socks. I felt some relief within a couple of days, and got to a place where I have a nice life (including a moderate amount (20-30 min) of exercise for my heart/bones although I had to give up tennis, karate and such, and I use a wheelchair when sightseeing on vacation). Good luck.

Re: Neurontin ?

BrianG on 9/01/02 at 22:50 (094184)

Hi Lisa H,

I don't have TTS (I have PF), but it sounds like you should be trying a different class of drugs. For nerve type pain, most people seem to be taking Neurontin, and other anti-seizure meds. Something to talk to your doc about. Also, Rest !!!!

Good luck
BrianG

PS: Document everything, you never know how far this injury will take you! Lastly, save surgery for your very last treatment. It can make you worse!!

Re: TTS Relief - Nothing works!

Julie on 9/02/02 at 03:22 (094190)

Lisa, have you read Wendy's FAQ on TTS? There's a link at the top of the page: do have a look, it's extremely informative and helpful.

I doubt whether you'd be able to return to work a week after TTS surgery, but I'm sure some of the people who have had TTS surgery will respond to your question.

Re: TTS Relief - Nothing works!

Sharon W on 9/02/02 at 11:19 (094220)

Lisa,

I doubt if you would be up to going back to work in a wheelchair or crutches, one week after surgery. I was not even supposed to touch my foot to the ground, at that point, and I was still taking prescription pain meds. I gather it is typical to take the stitches (or staples) out about 10 days to 2 weeks after surgery (in my case, it was 12 days).

At 2 weeks, I was able to change from the splint to my air boot (walking cast) and was allowed to touch the surgery foot to the ground, but not to walk on it (I was still using crutches and wheelchair to get around). I had stopped taking the prescription pain meds by then, except sometimes at night if it was REALLY sore.

At 3 weeks, my foot was still very sore and hard to move. I was just beginning physical therapy. I was still pretty weak; my energy level definitely had NOT completely returned to normal by that point. I wasn't using the wheelchair quite as much anymore; I was hobbling around on crutches and wearing the walking cast, finally just barely BEGINNING to try to walk a few steps putting most of my weight on my surgery foot.

Now, 6 weeks after the surgery, I'm not using crutches or even using my cane anymore, but I'm still wearing the walking boot cast any time I'm on my feet, and I still have to lie down and rest several times a day with my foot up. (The surgery foot starts to swell up as the day progresses, and it still HURTS when that happens.)

My surgery foot has gone back to having a normal range of motion, though, and while it does feel like something is 'pulling' around my scar as I move my foot around, I'm feeling pretty good about that. Just this coming week, I am scheduled to BEGIN to wear a regular shoe while walking, but of course, my pod wants me to take it slow and easy...

That might sound like really slow progress to you, but if you read up on other people's experiences, I think you'll find that it is neither the slowest progression after surgery, nor the fastest. (Then again, I'm convinced that being too much in a rush to recover from this surgery can actually hurt your chances for your surgery to be a SUCCESS!)

And I do think (so far) that my surgery is probably a success. MY FOOT HURTS A LOT LESS THAN BEFORE THE SURGERY, and I feel VERY good about that!

Sharon

Re: TTS Relief - Nothing works!

Cheri A on 9/02/02 at 13:47 (094244)

Sometimes I get so tired of having to defend my pain! I know you need to have people close to you acknowledge your pain. I had surgery in 2000, and I have been in constant pain since then, but not as bad as the pain I had before the surgery. I take 600 mg. of Neurontin at night, and I take Ultram usually in the afternoon. The dose of Neurontin is all I can tolerate because of side effects, but it helps the burning pain by taking the 'edge' off. The Ultram is very helpful for taking the 'edge' off. The pain is better some days than others, and I am thankful for that. On really bad days, I just use my crutches at work to keep the weight off my foot, and that seems to help it. I don't care what people at work think, or anyone else for that matter! I haven't always felt that way, but I think I have accepted the fact that some people will think I am faking it, some will think it can't be that bad, and some people will think I am a sissy for not being able to tough it out. I have to let their lack of understanding and compassion be their problem and not mine.
I use an elastic 'sock' to help the swelling, but I can't take the anti inflammatory meds because of stomach problems.
I don't have 'red sock', but sometimes I can't tell if my feet are hot or cold, which seems weird to me.
I also use ice packs sometimes, and I took physical therapy (workman's comp wouldn't pay for that!!). I think the therapy helped my flexibility
and strengthend my ankles, but it did not decrease the level of pain.
Every case is different, so I hope I didn't give you any discouragement.
Some people have reported getting much better after surgery!

Re: TTS Relief - Nothing works!

KathyB on 9/05/02 at 19:40 (094557)

A. Go to doctor get pain killers and get out of pain so you can think straight. If doctor does not want to give you good pain killers, get another doctor. If the pain killers are not good enough, call doctor and get better ones.

B. It does not matter how you got TTS, get your doctor to get you on the first stage drugs like neurontin, topamax and others you may have read here. If he doesn't know about these drugs get another doctor that does.

C. Do not go to surgery unless the docotr knows where to cut and why. It does no good to fish around with no real idea where or what or why. Don't be among the 50% that have surgery and it does no go. You should have all of the tests first to see if they can pin down the cause.
D. See someone about how down you are about the lack of support you are getting at home and how down the pain is getting you. It is hard enough fighting this condition than to try to do it while down or downright depressed. Don't feel you are alone, pain causes depression as sure as I am sitting here. I know I have gone that route and back again.

Take care of your self.

Re: TTS Relief - Nothing works!

Lara T on 9/30/02 at 06:57 (096494)

I'd definitely try compression socks before surgery. I haven't posted for awhile (had knee surgery!), but I'm pretty much a cheerleader for compression socks. I relaize they don't help a lot of people, but they are relatively inexpensive, non-invasive, and if you have an adverse reaction, you can just take the socks off. You can get OTC compression socks (most people get them for varicose veins). I don't know if I would have noticed a difference with them. I had mild & moderate RX compression socks. I felt some relief within a couple of days, and got to a place where I have a nice life (including a moderate amount (20-30 min) of exercise for my heart/bones although I had to give up tennis, karate and such, and I use a wheelchair when sightseeing on vacation). Good luck.