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Searching for some info please

Posted by Mike M on 1/30/02 at 08:26 (071906)

Hi board, well I'm back having posted here about a year ago.
I had TTS & PF 02/2001 and developed scar tissue which needed removed 06/2001. The pain never went away.
Oh yes, I am able to walk without the original pain that brought on the TTS/PF, but now its a new pain like a live electric line in my heel-ankle area and at times my legs (both) feel sooooooooo tired and burn.
My POD (he's great) sent me to Baltimore for a 2nd opinion, by a well known neurosurgeon, because of the continuing pain and problems.
I fell and broke this foot about 4 years ago - 5th metatarsual.

The outcome?
Neuroma of the calcaneal nerve - whats that?

Active vasculitis - again, whats that? - likely leading to peripheral neuropathy - too medical of a term for me.

Possible lupus - i.e. elevated WBC, up/down sed rate, positive ANA (Graves disease treated with I131 radiation in 1979)

Any help would be very very greatly appreciated.
Oh, the kicker -
due to having to work on light duty for 3 months after the third surgery, I was forced out of my job of 15 years, due to a apparent disregard for light duty policy and treatment of employees on such.
Thus, I am to start a new position with another agency next week, but need some info on the above problems BEFORE then.

Thanks a bunch
Mike

Re: Searching for some info please

Henry C on 1/30/02 at 10:27 (071922)

Mike,

Who did you see in Baltimore? Did you go to Greater Chesapeake Orthopedic Assoicates?

I have seen and had surgery from both Dr. Myerson and Dr. Schon. Both seemed very knowledgeable about TTS. I really liked Dr. Schon and would suggest him to anyone with foot or ankle problems.

As for your foot problems, well as I was told 'You have to learn to just live with it'. I know that's not very easy to take and it was very difficult for myself to come to terms with. I have tried just about everything to seek my own comfort and am still looking for something that will provide relief.

I suggest you get in contact with elliot on this message board. From what I can see, he is the resident expert for TTS. I know that I would like to get some more information from him concerning myself.

Sorry I couldn't provide any answers to your questions, but I'm sure elliot will be able to assist you.

Henry

Re: Searching for some info please

Dennis B. on 1/30/02 at 13:49 (071950)

Hello Mike. Are you the same Mike that had TTS release the same day as I did, Feb. 07, 2001?

Re: Searching for some info please

Mike M on 1/30/02 at 13:55 (071952)

Yep, Feb 7th, 2001

Re: Searching for some info please

Dennis B. on 1/30/02 at 14:14 (071955)

Good to hear from you again, but sorry things are not going well. I have been diagnosed with peripheral neuropathy which now is in the lower legs, arms and hands. At first I said that the TTS release did not work, and maybe it didn't, but with the peripheral neuropathy co-existing, who knows? You may wish to check out http://www.neuropathy.org for any additional info on that subject. Sorry to hear that they strong armed you out of your job. Take care and keep in touch. Dennis

Re: medical dictionary; bookmark this site

elliott on 1/30/02 at 21:56 (072018)

http://www.graylab.ac.uk/omd/index.html

No excuses!!

----

Re: Mike and Dennis

wendyn on 1/31/02 at 22:57 (072160)

I seem to remember you both having surgery the same day.

Mike - didn't you initially have a fairly good outcome?

Is this correct that you both had the surgery for TTS, and both had poor outcomes from the surgery - and have both been diagnosed with possible systemic causes now instead?

We really should keep stats on this.

Re: Mike

wendyn on 1/31/02 at 22:59 (072161)

Mike, prior to your surgery - did you have blood work and a nerve conduction test done?

I understood that Lupus/sed rate etc were all standard test that should be done with someone suffering unexplained foot pain - esp BEFORE surgery.

Re: Henry, curious, did you have the "vein wrap"?

Matt L on 2/01/02 at 13:15 (072192)

No further message.

Re: Mike and Dennis

Dennis B. on 2/01/02 at 13:55 (072193)

Yes, I had a poor outcome from the surgery. At the time that the neurologist diagnosed the TTS he also indicated that I had the Peripheral Neuropathy, however we 'focused' on the TTS. As mentioned earlier, the PN has now spread to the hands and arms as well as up the legs. So, I really feel that the PN is the over-riding condition in my case, and am probably not in a position to judge the TTS release as to the degree of success. As a side note, I am scheduled for a sural nerve biopsy on the 18th of this month at a teaching hospital here in Nebraska. It is to be performed on the foot that did not have the TTS release. I try not to comment on this board because I don't want to create any confusion between the two conditions since I can't define the differences myself. However, I am a daily reader of the board and find all of the inputs valuable to me.

Re: Henry, curious, did you have the "vein wrap"?

Henry C on 2/01/02 at 14:08 (072195)

Yes, after complications from my first release, I had the vein wrap procedure. I must say that a lot of poeple on this board talk of all the pain associated with these types of surgeries. I on the other hand did not think either operation was that bad. I would go through it ten times, if it would provide relief.

Now I have a lot of pain on the bottom of my foot. The pain seems to move from my heel to the base of my foot under my toes. I have noticed one thing, sometimes when the pain acts up behind my ankle, where the surgery was performed, I do not have any pain on the bottom of my foot. It seems to act like a switch. The pain is either behind my ankle or on the bottom of my foot.

The only last recourrse that I am aware of is a nerve stimulator. Right now that seems a little drastic for me. Even though it's been a long time, like every one else on this board I'm trying to learn to live with this. I think I've tried just about everything to find some relief. I open to any sugestions that any one has out there.

Re: Meds ??

BrianG on 2/01/02 at 15:45 (072203)

Hi Henry,

You mentioned trying a lot of different things, but no meds? Have you talked to your doctor about any pain meds? There are quite a few that can be tried for nerve type pain. Neurontin and Dilantin are a couple. If these type of meds do not work, there are other, stronger pain meds that will work. You may be able to get them through your family doc if the specialists 'can't be bothered'. I hate it when I hear someone say you should learn to live with it, would they? Good luck

BCG

Re: PN vs. TTS

elliott on 2/02/02 at 22:18 (072365)

It's not that complicated. Technically speaking, a peripheral neuropathy is a nerve dysfunction due to a *systemic* process affecting the peripheral nervous system. Examples include diabetes, rheumatoid arthritis, Lyme disease, B12 deficiency, alcohol-induced disease. TTS is simply entrapment of the nerve in a specific area of the ankle, just behind the medial malleolus in the so-called tarsal tunnel. Now, whether entrapment in the tarsal tunnel caused by a systemic problem (which often shows its face first in the tarsal tunnel due to the tunnel's narrowness) would also be called TTS, that's more a matter of semantics than anything else. Even if it's yes, the key is that the treatment approach might be different if there is a systemic problem. Also, sometimes the term 'peripheral neuropathy' is used more loosely, even by doctors themselves, to mean simply neurologic injury to a peripheral nerve (as opposed to one in the neck or back); that would include TTS. Hope that's not confusing things all over again. :-)

--

Re: PN vs. TTS

Dennis B. on 2/03/02 at 15:11 (072448)

PN can be inherited or aquired. For those wishing a full explanation I would recommend viewing 'explaining peripheral neuropathy' at http://www.neuropathy.org .

Re: PN vs. TTS

wendyn on 2/03/02 at 16:50 (072468)

Elliott - my basic understanding is that all TTS is Peripheral Neuropathy (nerve problem with peripheral nerve) but not all Peripheral Neuropathy is TTS.

As you said - the most important thing is the 'Why' is it happening.

I've also had the term polyneuropathy thrown about in my case because I have problems with multiple nerves.

Re: PN vs. TTS

elliott on 2/04/02 at 02:29 (072508)

Your understanding is true if the looser meaning I referred to is used (and it is).

--

Re: Henry, curious, did you have the "vein wrap"?

Matt L on 2/04/02 at 11:13 (072526)

I heard about the nerve stimilator and your right, it doesn't sound appealing. I've had the vein wrap mentioned as an option for me but I don't think I'm there yet. A few questions about your experience if you don't mind. Did the vein wrap reduce your pain significantly? How bad was your pain prior to the vein wrap? Did it cause the new pain you feel on the sole of your foot? Are additional surgeries now out of the question as a result of the vein wrap.

Re: Meds ??

Henry C on 2/05/02 at 06:40 (072610)

Yes, I am currently taking 1200MG of Neurontin, I have tried Elevil, Oxycontin, and Larcet. It has been a while since I have taken any of these medications. I became over medicated on Oxycontin and went off it last April. Since then I have not been on any pain medications. I saw a web page on TTS written by Stephen Williamson and he suggested taking Liga-Tend. I have ordered some and am waiting for it to arrive. At this point I wam willing to give anything a try.

Re: Henry, curious, did you have the "vein wrap"?

Henry C on 2/05/02 at 07:21 (072613)

The vein wrap was very sucessful in reducing the pain behind the ankle. Comparing the time before the vein wrap and now, a lot of the pain behind the ankle has been removed. Ocassionally, depending on my activity, the pain does return behind the ankle.

Before my first release, I had shooting pains behind my ankle and up my leg. The first release removed this for about a year. It was not until after the first release that I began to notice the pain in the sole of my foot. I do not know if it was always there and I did not notice it because of the over welming shooting pains or not. It did become quite noticeable after the first release. I tried magnets, a noght splint, and accupuncture to releave the pain and nothing seemed to work. That is when I was refered to Dr. Schon.

I was diagnosed as having scar tissure around the nerve. Before the vein wrap procedure was performed, the pain had once again returned behind my ankle. It felt as if someone had stuck a screw driver into my foot and was turning it. Needless to say I had the vein wrap procedure performed on March 11th 2000. Now depending on my activity, the pain is pretty much gone from behind my ankle. It comes back once in a while, but nothing like it was before the surgery. I would say the vein wrap procedure was well worth it and would recommend it to anyone that had a earlier failed release.

One thing, I still notice is the pain on the sole of my foot. It is not always in the same spot, some days it is around my heal and others it is around my arch or at the base of my foot where the toes connect. The pain is always on the outside edge of my foot. It feels like I have been standing on concrete all day and it seems to get worse durning the end of the day. It seems to get worse if I stand still. One thing I do notice is that when the pain returns behind my ankle, the pain seems to go away from the bottom of my foot.

I have tried all the medications, from Larcet to Oxycontin. Yes you get some relief with these medications, but you are always a little fuzzy. I am an Engineer and am required to have a clear head at work. Now I take 1200 MG of Neurontin a day and that's all. As for additional surgeries, I was told about the nerve stimulator and that was it.

Presently like many on this board, I am waiting for some new TTS treatment. If there is any other information that I can provide on the vein wrap procedure, please don't hesitate to ask.

Re: Thanks very much (no further message)

Matt L on 2/05/02 at 08:41 (072621)

no further message

Re: Searching for some info please

Henry C on 1/30/02 at 10:27 (071922)

Mike,

Who did you see in Baltimore? Did you go to Greater Chesapeake Orthopedic Assoicates?

I have seen and had surgery from both Dr. Myerson and Dr. Schon. Both seemed very knowledgeable about TTS. I really liked Dr. Schon and would suggest him to anyone with foot or ankle problems.

As for your foot problems, well as I was told 'You have to learn to just live with it'. I know that's not very easy to take and it was very difficult for myself to come to terms with. I have tried just about everything to seek my own comfort and am still looking for something that will provide relief.

I suggest you get in contact with elliot on this message board. From what I can see, he is the resident expert for TTS. I know that I would like to get some more information from him concerning myself.

Sorry I couldn't provide any answers to your questions, but I'm sure elliot will be able to assist you.

Henry

Re: Searching for some info please

Dennis B. on 1/30/02 at 13:49 (071950)

Hello Mike. Are you the same Mike that had TTS release the same day as I did, Feb. 07, 2001?

Re: Searching for some info please

Mike M on 1/30/02 at 13:55 (071952)

Yep, Feb 7th, 2001

Re: Searching for some info please

Dennis B. on 1/30/02 at 14:14 (071955)

Good to hear from you again, but sorry things are not going well. I have been diagnosed with peripheral neuropathy which now is in the lower legs, arms and hands. At first I said that the TTS release did not work, and maybe it didn't, but with the peripheral neuropathy co-existing, who knows? You may wish to check out http://www.neuropathy.org for any additional info on that subject. Sorry to hear that they strong armed you out of your job. Take care and keep in touch. Dennis

Re: medical dictionary; bookmark this site

elliott on 1/30/02 at 21:56 (072018)

http://www.graylab.ac.uk/omd/index.html

No excuses!!

----

Re: Mike and Dennis

wendyn on 1/31/02 at 22:57 (072160)

I seem to remember you both having surgery the same day.

Mike - didn't you initially have a fairly good outcome?

Is this correct that you both had the surgery for TTS, and both had poor outcomes from the surgery - and have both been diagnosed with possible systemic causes now instead?

We really should keep stats on this.

Re: Mike

wendyn on 1/31/02 at 22:59 (072161)

Mike, prior to your surgery - did you have blood work and a nerve conduction test done?

I understood that Lupus/sed rate etc were all standard test that should be done with someone suffering unexplained foot pain - esp BEFORE surgery.

Re: Henry, curious, did you have the "vein wrap"?

Matt L on 2/01/02 at 13:15 (072192)

No further message.

Re: Mike and Dennis

Dennis B. on 2/01/02 at 13:55 (072193)

Yes, I had a poor outcome from the surgery. At the time that the neurologist diagnosed the TTS he also indicated that I had the Peripheral Neuropathy, however we 'focused' on the TTS. As mentioned earlier, the PN has now spread to the hands and arms as well as up the legs. So, I really feel that the PN is the over-riding condition in my case, and am probably not in a position to judge the TTS release as to the degree of success. As a side note, I am scheduled for a sural nerve biopsy on the 18th of this month at a teaching hospital here in Nebraska. It is to be performed on the foot that did not have the TTS release. I try not to comment on this board because I don't want to create any confusion between the two conditions since I can't define the differences myself. However, I am a daily reader of the board and find all of the inputs valuable to me.

Re: Henry, curious, did you have the "vein wrap"?

Henry C on 2/01/02 at 14:08 (072195)

Yes, after complications from my first release, I had the vein wrap procedure. I must say that a lot of poeple on this board talk of all the pain associated with these types of surgeries. I on the other hand did not think either operation was that bad. I would go through it ten times, if it would provide relief.

Now I have a lot of pain on the bottom of my foot. The pain seems to move from my heel to the base of my foot under my toes. I have noticed one thing, sometimes when the pain acts up behind my ankle, where the surgery was performed, I do not have any pain on the bottom of my foot. It seems to act like a switch. The pain is either behind my ankle or on the bottom of my foot.

The only last recourrse that I am aware of is a nerve stimulator. Right now that seems a little drastic for me. Even though it's been a long time, like every one else on this board I'm trying to learn to live with this. I think I've tried just about everything to find some relief. I open to any sugestions that any one has out there.

Re: Meds ??

BrianG on 2/01/02 at 15:45 (072203)

Hi Henry,

You mentioned trying a lot of different things, but no meds? Have you talked to your doctor about any pain meds? There are quite a few that can be tried for nerve type pain. Neurontin and Dilantin are a couple. If these type of meds do not work, there are other, stronger pain meds that will work. You may be able to get them through your family doc if the specialists 'can't be bothered'. I hate it when I hear someone say you should learn to live with it, would they? Good luck

BCG

Re: PN vs. TTS

elliott on 2/02/02 at 22:18 (072365)

It's not that complicated. Technically speaking, a peripheral neuropathy is a nerve dysfunction due to a *systemic* process affecting the peripheral nervous system. Examples include diabetes, rheumatoid arthritis, Lyme disease, B12 deficiency, alcohol-induced disease. TTS is simply entrapment of the nerve in a specific area of the ankle, just behind the medial malleolus in the so-called tarsal tunnel. Now, whether entrapment in the tarsal tunnel caused by a systemic problem (which often shows its face first in the tarsal tunnel due to the tunnel's narrowness) would also be called TTS, that's more a matter of semantics than anything else. Even if it's yes, the key is that the treatment approach might be different if there is a systemic problem. Also, sometimes the term 'peripheral neuropathy' is used more loosely, even by doctors themselves, to mean simply neurologic injury to a peripheral nerve (as opposed to one in the neck or back); that would include TTS. Hope that's not confusing things all over again. :-)

--

Re: PN vs. TTS

Dennis B. on 2/03/02 at 15:11 (072448)

PN can be inherited or aquired. For those wishing a full explanation I would recommend viewing 'explaining peripheral neuropathy' at http://www.neuropathy.org .

Re: PN vs. TTS

wendyn on 2/03/02 at 16:50 (072468)

Elliott - my basic understanding is that all TTS is Peripheral Neuropathy (nerve problem with peripheral nerve) but not all Peripheral Neuropathy is TTS.

As you said - the most important thing is the 'Why' is it happening.

I've also had the term polyneuropathy thrown about in my case because I have problems with multiple nerves.

Re: PN vs. TTS

elliott on 2/04/02 at 02:29 (072508)

Your understanding is true if the looser meaning I referred to is used (and it is).

--

Re: Henry, curious, did you have the "vein wrap"?

Matt L on 2/04/02 at 11:13 (072526)

I heard about the nerve stimilator and your right, it doesn't sound appealing. I've had the vein wrap mentioned as an option for me but I don't think I'm there yet. A few questions about your experience if you don't mind. Did the vein wrap reduce your pain significantly? How bad was your pain prior to the vein wrap? Did it cause the new pain you feel on the sole of your foot? Are additional surgeries now out of the question as a result of the vein wrap.

Re: Meds ??

Henry C on 2/05/02 at 06:40 (072610)

Yes, I am currently taking 1200MG of Neurontin, I have tried Elevil, Oxycontin, and Larcet. It has been a while since I have taken any of these medications. I became over medicated on Oxycontin and went off it last April. Since then I have not been on any pain medications. I saw a web page on TTS written by Stephen Williamson and he suggested taking Liga-Tend. I have ordered some and am waiting for it to arrive. At this point I wam willing to give anything a try.

Re: Henry, curious, did you have the "vein wrap"?

Henry C on 2/05/02 at 07:21 (072613)

The vein wrap was very sucessful in reducing the pain behind the ankle. Comparing the time before the vein wrap and now, a lot of the pain behind the ankle has been removed. Ocassionally, depending on my activity, the pain does return behind the ankle.

Before my first release, I had shooting pains behind my ankle and up my leg. The first release removed this for about a year. It was not until after the first release that I began to notice the pain in the sole of my foot. I do not know if it was always there and I did not notice it because of the over welming shooting pains or not. It did become quite noticeable after the first release. I tried magnets, a noght splint, and accupuncture to releave the pain and nothing seemed to work. That is when I was refered to Dr. Schon.

I was diagnosed as having scar tissure around the nerve. Before the vein wrap procedure was performed, the pain had once again returned behind my ankle. It felt as if someone had stuck a screw driver into my foot and was turning it. Needless to say I had the vein wrap procedure performed on March 11th 2000. Now depending on my activity, the pain is pretty much gone from behind my ankle. It comes back once in a while, but nothing like it was before the surgery. I would say the vein wrap procedure was well worth it and would recommend it to anyone that had a earlier failed release.

One thing, I still notice is the pain on the sole of my foot. It is not always in the same spot, some days it is around my heal and others it is around my arch or at the base of my foot where the toes connect. The pain is always on the outside edge of my foot. It feels like I have been standing on concrete all day and it seems to get worse durning the end of the day. It seems to get worse if I stand still. One thing I do notice is that when the pain returns behind my ankle, the pain seems to go away from the bottom of my foot.

I have tried all the medications, from Larcet to Oxycontin. Yes you get some relief with these medications, but you are always a little fuzzy. I am an Engineer and am required to have a clear head at work. Now I take 1200 MG of Neurontin a day and that's all. As for additional surgeries, I was told about the nerve stimulator and that was it.

Presently like many on this board, I am waiting for some new TTS treatment. If there is any other information that I can provide on the vein wrap procedure, please don't hesitate to ask.

Re: Thanks very much (no further message)

Matt L on 2/05/02 at 08:41 (072621)

no further message