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Elliott

Posted by Carmen H on 12/03/01 at 16:46 (066010)

Okay..I'll do my best to keep it brief and to the point. I have had doctors sending me for tests for all kinds of things....I mean the caudal epidural was just the beginning....anyway. I have had the following:
NCV (negative), EMG (on arm they thought I had carpaltunnel...even though I told them my feet hurt more than anything! It was negative), Somato Sensory (slight abnormality of the tibial nerve), Evoked Sensory (visual for the brain...) negative, MRI of lumbar spine, (slight degenration disk disease) otherwise nothing abnormal, MRI of brain and cervical (normal), X ray of back and pelvis, (slight sclerosis in the SI joints...nothing major), ALL the blood work you can imagine!!!!!!! ALLL normal.
The myelin sheath discovery came from the neurologist being concerned about me having damaged nerves...etc. etc. My main concern was the LONG term effects of this condition. The fact that I had seen so many doctors and everyone was perplexed about what could be wrong made everything worse...so much worse! Once I got the tsts back that nothing MAJOR was really wrong I was able to relax.
I know it's not PF...I never had typical morning pain. I told this to every doctor I saw and they all said it was until this guy. He knew it right off the bat.

So I have had pain and symptoms in my feet since June. I have tried icing, night splints, stretching, inserts, Orthotics (geting new ones in about two weeks), etc etc...you name it. I've tried it.
The pain (tingling and numbness) is on the inside of my heels below the ankle bone and the outside of my heels under the ankle bone and along the arch. I know you said 'exactly' where it is but the medical terms are lost on me at this time of day.....tired.
Both feet are affected it used to be worse at night but has moved into ALL day long. Sitting still is the WORST even walking is okay....right worse than left most of the time. The times I feel the BEST is when I have on these shoes with a slight heel.
Something you may find interesting though Elliott....It's worse when I sit down at my desk. This leads me to believe there is more back involvement or sciatic nerve relation than I thought.
Does this make sense? I know it's all over the place but I don't know how else to put it. I have back issues where the nerves of the feet are supplied as well.
The burning ended about a week ago (last Tuesday) and the tingling remains.
Whew! Thanks for your time again Elliott...I DO appreciate it!
Tell me how you deal with this and how you feel most ofthe time? Do you work? What shoes have worked best for you?
Birkenstocks KILL me....and now my Danskos hurt too. $400.00 down the drain.

Re: simultaneous bilateral

elliott on 12/04/01 at 00:00 (066045)

To me that almost always means a systemic ailment (somewhat less likely after all bloodwork is negative, but there are so many and some can stay hidden till later) or back trouble, for which it sounds like you have some evidence leaning that way; the sitting discomfort fits with that too (I have sciatic pain running down butt and hamstring especially when sitting due to a bulging disc, but it radiates into only one foot). Can't say if the degeneration detected is enough to give you all that. Tingling on outside of heels is just not TTS. Not sure what you should do next, but definitely not a TTS release. You can try neurosurgeon if you haven't done so (global kind who does neck and back) who may zone in on the cause. I think that's the next step. Did you try a rheumatologist? After that, maybe chiro, PT, see what they say. Orthotics worth a try too. And let's not forget yoga. Maybe your problems will just fade away. Hope so.

You didn't say if shoes irritate you. If not, try the Brooks Addiction or Saucony Motion shoe, which I've recommended to Paula in previous threads (unless, perhaps, you have very high arches).

Yes, I work, post when I have time. Maybe getting too caught up here.

How do I deal with it? Not well. Very weak post-op right foot, a still-irritating post-op left foot, and sciatica all wear me down. It helps that I have a wife who is good to me and kids to tend to. But I am forever depressed because I can't run and almost certainly never will again; running was the one thing in life I really enjoyed doing and I can't let go. Immature? Yes. Just started taking Celebrex two weeks ago for the sciatica; did absolutely nothing for that, but mysteriously helped my weak right foot quite a bit! Left foot better than six months ago. But the more time that passes, the less convinced I am of a complete recovery in either foot. At least left foot not so bad with shoes off, so I'm not in constant agony. No problem sleeping. One outlet I have is cycling; with all my ailments, I fortunately feel little if any pain doing that, even riding hard. In fact, it's much easier for me to ride than to walk. Did a 50-miler several weeks ago and no problems. Did 30 on Sunday. Sometimes bike the 8 miles to work too. Only real exercise I can get. Power yoga also helps, both with inner peace, and with alleviating some of the sciatica. Thanks for asking.

----------

Re: Hmmmm

CArmen H on 12/04/01 at 07:37 (066059)

Well the funny thing is the doctor tapped the inside of my ankle and it sent tingling into my toes and he said that is a classic test for TTS....things I have read indicate the same thing.....did I say inside of my heels? I meant the inside of my ankles. Don't worry I definitely won't be doing surgery unless I am close to death. (just kidding!) When I wear shoes it feels better than without sometimes...probably because of the heel. I have tried Saucony's and they made the burning worse.... I don't know why. Do they have tennis shoes with a heel? What about heel lifts? I have researched diseases to the death and nothing correlates with my symptoms....weird but true. Seriously Elliott when the burning was there I was ready to CUT off my feet. This tingling off and on is much better than that...I guess the test will tell what's up. Do you have any other ideas of what this could be besides TTS? The NST treatments I get really does help though.
I can't walk for exercise or do anything like that but I do some yoga and Pilates. I have maintained my weight (lost 8 pounds even) and will get back to the pool evetually for aerobic exercise. It's just BORING. I understand you're depression. I used to be a runner, weight lifter, walker, kickboxer, spinner etc. Now I am none of the above. You are lucky you enjoy biking and are able to do so. That's a great release...I used to love it. Do I remember correctly that you had said it fels better to go barefoot (a loooonnnng time ago.....) and we all badgered you to 'put on your shoes????' NOW I understand ... barefeet sometimes do feel better even though I rarely go without these shoes.
Take a look at http://www.drweil.com if you are into the alternative healing methods and mind control for pain. His book Spontaneous helaing has changed my outlook lately. You may want to check it out.
I am sorry for your depression....I went through it BIG time....but this has been a learning experience anyway. Regardless of the pain.
thanks for your time Elliott....I appreciate your willingness to share your input. Keep in touch and hang in there....I bet your family is grateful EVERY day you don't have a serious disease to worry about......at least that's something? right?

Re: TTS or something else

elliott on 12/04/01 at 09:40 (066071)

In addition to the simultaneous bilateral, you also said you have tingling on the outsides of your ankles. That's just not TTS; the posterior tibial nerve and its branches just don't run there. Now there are other, distally unconnected nerves on that side, but the fact that you have it everywhere and bilaterally suggests it's clearly not the typical singular peripheral nerve entrapment for which a surgical release would likely work. The fact that he taps at inner ankle and it sends tingling into your toes isn't surprising since you also have it on inner ankles, but ask him to explain why you also have it on outer ankles and bilaterally. Do you have any neck pain, by the way? That could be a cause and you probably weren't tested there yet. Try the neuro, see what he says (he usually wants to see lumbar MRI and xray films himself, so bring with). Try shoes, try lifts, try orthotics, try stretching, try it all. You might have some kind of weird imbalance causing it and these may alter it.

What's NST?

Due to a very tight abductor muscle in my right foot about which I can do nothing, which likely contributed to the TTS, and which likely was made worse during surgery, I get a lot of heel pain at times, and then my right foot is often screaming for a comfortable support shoe (when it's not so bad), while my left foot is always screaming to be barefoot. Now the one-shoe-on, one-shoe-off thing would do wonders for my balance, wouldn't it? :-) So in short, can't stand long due to right foot, can't sit long due to sciatica, can't wear shoes long due to right foot. :-) Pretty funny! Makes me start wondering if something global is going on. Family grateful? We had a thread here a while back that family can be loving, but can't really understand what TTS is all about. But I'm grateful, wife too. And I see there's some here in worse shape. The improvement I have had over the last month ot two was a big psychological boost. Gave me some hope. We all need hope. Cling to what you can get. Never ever give up.

--------

Re: TTS or something else

CArmen H on 12/04/01 at 10:12 (066073)

I do have neck pain and yes I have had MRI of the neck, brain, and lumbar spine. The neurologist is perplexed as well. The chiropractor is the only one who is like 'Okay we're going to get this under control....once and for all. It will take a little time but I anticipae you not coming back after 5-6 visits'.
SO...Eliott...we have problems in the same areas....I have suffered with sciatica for almost 3 years. I often said 'I can't sit long I can't stand long and wlaking is impossible...' So yes I understand your plight.
However the stretching regimen I have been on for 5 months has REALLY eased up the sciatica (gone almost completely), and I think the caudal epidural REALLY settled down the inflammation around the sciatic nerve as well.
Sitting isn't as bad anymore for the first time in almost 3 years I can sit in the car comfortably and not scream in pain at my desk.
I am assuming you don't have a wallet in your pocket anymore as this can cause sciatica?
Have you been treated for Sciatica? I think the foot nerves sciatic nerves and all that stuff IS realted for sure. It has to be.....it only makes sense...have you posed this theory to a neurologist or anyone yet?
Are you seeing a chiropractor?
I will mention the other sides of the ankle tingling as well and see what the pod says.
NSY (Neurostructural Technique)...www.usbowen.com
Try that site....very limited amount of people do NST but let me tell you...it REALLY REALLY feels good and REALLY helped my feet that day I could hardly walk.

Re: Neck pain too?

elliott on 12/04/01 at 10:44 (066084)

Then please go to a big-name neurosurgeon and see what he says.

Re: What would I ask him....

Carmen H on 12/04/01 at 10:59 (066087)

What would the neck have to do with the tingling in my ankles? The MRI came back normal....no abnormalities. What do you think I should ask him?

Re: just go!

elliott on 12/04/01 at 11:15 (066089)

The neck may have a lot to do with it. Tell him your history and see what he says. You have neck problems, back problems, global neurological disorders; that's right up their alley. He may see something on the films (oh, do bring the films) the radiologist missed. Not everything shows up on an MRI/xray anyway; based on your description, he may figure it out. He may know of drugs that will help, PT that will help, or surgical options. Just go! Nuff said!

--------

Re: all right you meanniiieee~

Carmen H on 12/04/01 at 11:18 (066090)

Okay meanie I will go!!!!!!!!!!!!
Once I get on a PPO in January I am going to a different neurologist. Mine doesn't seem to be too interested in my situation now that it's not MS or RSD or anything likethat and I can't get them to see me before January anyway. I think it's time for a second opinion anyway on the neurologist level.

Re: neurosurgeon, not neurologist

elliott on 12/04/01 at 13:18 (066105)

A neurologist checks for diseases and the like and tests nerves. You've been to one already. A neurosurgeon tries to connect your symptoms with damage to the head, neck, spine. Someone with a herniated disc would go to a neurosurgeon, not neurologist. As another example, the neurosurgeon (not neurologist) may ask you if your nervy symptoms radiate between or into a certain toe, and then say that means it's coming from your xyz vertebrate, or whatever. Neurosurgeon, not neurologist. Despite the word neurosurgeon (not neurologist :-)), it does not automatically imply that surgery is indicated. Ask around for a big name. Your primary will probably also be able to recommend a good neurosurgeon (not neurologist :-)).

Re: neurosurgeon, not neurologist

Carmen H on 12/04/01 at 15:13 (066112)

So let me just make sure I understand....go to a neurologist?
HAHAHAHAHAHAHAHAHAHAHAHAHAHAH
couldn't resist. thanks Elliott!
:-)

Re: simultaneous bilateral

elliott on 12/04/01 at 00:00 (066045)

To me that almost always means a systemic ailment (somewhat less likely after all bloodwork is negative, but there are so many and some can stay hidden till later) or back trouble, for which it sounds like you have some evidence leaning that way; the sitting discomfort fits with that too (I have sciatic pain running down butt and hamstring especially when sitting due to a bulging disc, but it radiates into only one foot). Can't say if the degeneration detected is enough to give you all that. Tingling on outside of heels is just not TTS. Not sure what you should do next, but definitely not a TTS release. You can try neurosurgeon if you haven't done so (global kind who does neck and back) who may zone in on the cause. I think that's the next step. Did you try a rheumatologist? After that, maybe chiro, PT, see what they say. Orthotics worth a try too. And let's not forget yoga. Maybe your problems will just fade away. Hope so.

You didn't say if shoes irritate you. If not, try the Brooks Addiction or Saucony Motion shoe, which I've recommended to Paula in previous threads (unless, perhaps, you have very high arches).

Yes, I work, post when I have time. Maybe getting too caught up here.

How do I deal with it? Not well. Very weak post-op right foot, a still-irritating post-op left foot, and sciatica all wear me down. It helps that I have a wife who is good to me and kids to tend to. But I am forever depressed because I can't run and almost certainly never will again; running was the one thing in life I really enjoyed doing and I can't let go. Immature? Yes. Just started taking Celebrex two weeks ago for the sciatica; did absolutely nothing for that, but mysteriously helped my weak right foot quite a bit! Left foot better than six months ago. But the more time that passes, the less convinced I am of a complete recovery in either foot. At least left foot not so bad with shoes off, so I'm not in constant agony. No problem sleeping. One outlet I have is cycling; with all my ailments, I fortunately feel little if any pain doing that, even riding hard. In fact, it's much easier for me to ride than to walk. Did a 50-miler several weeks ago and no problems. Did 30 on Sunday. Sometimes bike the 8 miles to work too. Only real exercise I can get. Power yoga also helps, both with inner peace, and with alleviating some of the sciatica. Thanks for asking.

----------

Re: Hmmmm

CArmen H on 12/04/01 at 07:37 (066059)

Well the funny thing is the doctor tapped the inside of my ankle and it sent tingling into my toes and he said that is a classic test for TTS....things I have read indicate the same thing.....did I say inside of my heels? I meant the inside of my ankles. Don't worry I definitely won't be doing surgery unless I am close to death. (just kidding!) When I wear shoes it feels better than without sometimes...probably because of the heel. I have tried Saucony's and they made the burning worse.... I don't know why. Do they have tennis shoes with a heel? What about heel lifts? I have researched diseases to the death and nothing correlates with my symptoms....weird but true. Seriously Elliott when the burning was there I was ready to CUT off my feet. This tingling off and on is much better than that...I guess the test will tell what's up. Do you have any other ideas of what this could be besides TTS? The NST treatments I get really does help though.
I can't walk for exercise or do anything like that but I do some yoga and Pilates. I have maintained my weight (lost 8 pounds even) and will get back to the pool evetually for aerobic exercise. It's just BORING. I understand you're depression. I used to be a runner, weight lifter, walker, kickboxer, spinner etc. Now I am none of the above. You are lucky you enjoy biking and are able to do so. That's a great release...I used to love it. Do I remember correctly that you had said it fels better to go barefoot (a loooonnnng time ago.....) and we all badgered you to 'put on your shoes????' NOW I understand ... barefeet sometimes do feel better even though I rarely go without these shoes.
Take a look at http://www.drweil.com if you are into the alternative healing methods and mind control for pain. His book Spontaneous helaing has changed my outlook lately. You may want to check it out.
I am sorry for your depression....I went through it BIG time....but this has been a learning experience anyway. Regardless of the pain.
thanks for your time Elliott....I appreciate your willingness to share your input. Keep in touch and hang in there....I bet your family is grateful EVERY day you don't have a serious disease to worry about......at least that's something? right?

Re: TTS or something else

elliott on 12/04/01 at 09:40 (066071)

In addition to the simultaneous bilateral, you also said you have tingling on the outsides of your ankles. That's just not TTS; the posterior tibial nerve and its branches just don't run there. Now there are other, distally unconnected nerves on that side, but the fact that you have it everywhere and bilaterally suggests it's clearly not the typical singular peripheral nerve entrapment for which a surgical release would likely work. The fact that he taps at inner ankle and it sends tingling into your toes isn't surprising since you also have it on inner ankles, but ask him to explain why you also have it on outer ankles and bilaterally. Do you have any neck pain, by the way? That could be a cause and you probably weren't tested there yet. Try the neuro, see what he says (he usually wants to see lumbar MRI and xray films himself, so bring with). Try shoes, try lifts, try orthotics, try stretching, try it all. You might have some kind of weird imbalance causing it and these may alter it.

What's NST?

Due to a very tight abductor muscle in my right foot about which I can do nothing, which likely contributed to the TTS, and which likely was made worse during surgery, I get a lot of heel pain at times, and then my right foot is often screaming for a comfortable support shoe (when it's not so bad), while my left foot is always screaming to be barefoot. Now the one-shoe-on, one-shoe-off thing would do wonders for my balance, wouldn't it? :-) So in short, can't stand long due to right foot, can't sit long due to sciatica, can't wear shoes long due to right foot. :-) Pretty funny! Makes me start wondering if something global is going on. Family grateful? We had a thread here a while back that family can be loving, but can't really understand what TTS is all about. But I'm grateful, wife too. And I see there's some here in worse shape. The improvement I have had over the last month ot two was a big psychological boost. Gave me some hope. We all need hope. Cling to what you can get. Never ever give up.

--------

Re: TTS or something else

CArmen H on 12/04/01 at 10:12 (066073)

I do have neck pain and yes I have had MRI of the neck, brain, and lumbar spine. The neurologist is perplexed as well. The chiropractor is the only one who is like 'Okay we're going to get this under control....once and for all. It will take a little time but I anticipae you not coming back after 5-6 visits'.
SO...Eliott...we have problems in the same areas....I have suffered with sciatica for almost 3 years. I often said 'I can't sit long I can't stand long and wlaking is impossible...' So yes I understand your plight.
However the stretching regimen I have been on for 5 months has REALLY eased up the sciatica (gone almost completely), and I think the caudal epidural REALLY settled down the inflammation around the sciatic nerve as well.
Sitting isn't as bad anymore for the first time in almost 3 years I can sit in the car comfortably and not scream in pain at my desk.
I am assuming you don't have a wallet in your pocket anymore as this can cause sciatica?
Have you been treated for Sciatica? I think the foot nerves sciatic nerves and all that stuff IS realted for sure. It has to be.....it only makes sense...have you posed this theory to a neurologist or anyone yet?
Are you seeing a chiropractor?
I will mention the other sides of the ankle tingling as well and see what the pod says.
NSY (Neurostructural Technique)...www.usbowen.com
Try that site....very limited amount of people do NST but let me tell you...it REALLY REALLY feels good and REALLY helped my feet that day I could hardly walk.

Re: Neck pain too?

elliott on 12/04/01 at 10:44 (066084)

Then please go to a big-name neurosurgeon and see what he says.

Re: What would I ask him....

Carmen H on 12/04/01 at 10:59 (066087)

What would the neck have to do with the tingling in my ankles? The MRI came back normal....no abnormalities. What do you think I should ask him?

Re: just go!

elliott on 12/04/01 at 11:15 (066089)

The neck may have a lot to do with it. Tell him your history and see what he says. You have neck problems, back problems, global neurological disorders; that's right up their alley. He may see something on the films (oh, do bring the films) the radiologist missed. Not everything shows up on an MRI/xray anyway; based on your description, he may figure it out. He may know of drugs that will help, PT that will help, or surgical options. Just go! Nuff said!

--------

Re: all right you meanniiieee~

Carmen H on 12/04/01 at 11:18 (066090)

Okay meanie I will go!!!!!!!!!!!!
Once I get on a PPO in January I am going to a different neurologist. Mine doesn't seem to be too interested in my situation now that it's not MS or RSD or anything likethat and I can't get them to see me before January anyway. I think it's time for a second opinion anyway on the neurologist level.

Re: neurosurgeon, not neurologist

elliott on 12/04/01 at 13:18 (066105)

A neurologist checks for diseases and the like and tests nerves. You've been to one already. A neurosurgeon tries to connect your symptoms with damage to the head, neck, spine. Someone with a herniated disc would go to a neurosurgeon, not neurologist. As another example, the neurosurgeon (not neurologist) may ask you if your nervy symptoms radiate between or into a certain toe, and then say that means it's coming from your xyz vertebrate, or whatever. Neurosurgeon, not neurologist. Despite the word neurosurgeon (not neurologist :-)), it does not automatically imply that surgery is indicated. Ask around for a big name. Your primary will probably also be able to recommend a good neurosurgeon (not neurologist :-)).

Re: neurosurgeon, not neurologist

Carmen H on 12/04/01 at 15:13 (066112)

So let me just make sure I understand....go to a neurologist?
HAHAHAHAHAHAHAHAHAHAHAHAHAHAH
couldn't resist. thanks Elliott!
:-)