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What to do when everything else fails?

Posted by Henry C on 10/16/02 at 07:39 (097603)

What does one do when everything else fails? I've been through the wringer when it comes to TTS! Two surgiers by some of the best surgons in the country and nothing but burning constant burning on the bottom of my foot. I have tried just about every pain medication on the market and nothing has seemed to help.

Currently I am taking methadone, which I have been on since July. At first I thought it was helping, but then all of a sudden it has started to wear off. My doctor has increased my dosage, but it has not helped.

According to my doctors, the next step is a nerve stimulator. Has any one out there had any experience with one of these devieces? I'm getting desprate and need more information before I make any drastic decision!

Henry

Re: What to do when everything else fails?

Ed Davis, DPM on 10/16/02 at 15:17 (097650)

Why do TT releases fail? We are not sure but one reason may be that the area of entrapment may be beyond the 'classical' tarsal tunnel. An area that has been implicated is the porta pedis which is a 'canal' beneath the abductor hallucis muscle where the nerves enter the sole of the foot.

A. Lee Dellon, MD of Baltimore, has, in recent years made many of us take another look at the porta pedis as an area of potential entrapment of the branches of the posterior tibial nerve.

I recently saw a patient whom I had performed a tarsal tunnel release on a few years back. He improved a lot clinically and his NCV got better after the surgery but he did not get complete relief. I injected the porta pedis with a local anesthetic and a steroid and he returned with considerable improvement.

Lets assume for a moment, that the problem still lies in the 'classical' tarsal tunnel. Are there any biomechanical problems which may be placing pressure on the nerve? Are there any nearby structures that may maintain pressure on the nerve such as varicose veins in or near the tarsal tunnel? That can be tested with temporary devices such as wedges. Excess pressure on the nerve may be decreased by placing a silicone sleeve around the nerve (like running wires through conduit) or even wrapping a vein around the nerve.
Ed

Re: What to do when everything else fails?

Henry C on 10/16/02 at 16:11 (097654)

Dr. Davis

The nerve was injured in an operation to fix a hole in the bottom of my tibia that was obtained from a fall. My first operation was performed by Dr. Mark Myerson in Baltimore. Before that operation, I do not believe that I had that much pain on the sole of my foot. After that operation failed, I was sent to his associate Dr. Lew Schon. He perfomed his vein wrap procedure which did not relieve the burning on the sole of my foot.

Dr. Schon said he believed that the nerve was stretched in the operation to fix the bone. Dr. Schon said the nerve looked fine in the operation, There is no sist or anything else putting pressure on the nerve. Right now all he has to offer is a peripheral nerve stimulator which would be implanted in my thigh. Every regualr pain management doctor who I have seen automatically has offered to use a spinal cord stimulator.

I have heard that the spinal cord stimulator is not that affective for extremities such as the foot. The implant Dr. Schon uses would be alright with the exception of the wire that is run from the unit to where it is attached to the nerve. It is very easy to break and would limit my movement to that of a 70 year old man. I have never came across any one on this message board that has either one of these in treatment of TTS. Are stimulators used in the treatment of TTS?

I know Dr. Dellon is in the same hospital as Dr. Schon and Myerson. Is he using some other form of treatment not being used by the other doctors? Is so, what is it? I am not afraid of going through another surgery if it might help. At this point in time I am willing to try anything even if it is experimental!

I have lived with this problem since 1997 and it has about ruined my whole life! I despretely NEED some help in making these types of decisions.

I read this message board every day in hopes of finding a cure!

Thanks,

Henry Collins

Re: What to do when everything else fails?

elliott on 10/16/02 at 16:33 (097657)

Sorry for your setback and continued pain. I had thought you were one of those miracle cases where it was just a matter of finding the right cheap drug.

I have some questions and suggestions. Is your bone problem fixed? Is the burning there all the time or only when you use your foot? If the latter, maybe staying off it entirely for a month or so would be worth a shot. Where exactly on your sole is the burning? Can you ascertain which nerve or branch it is, if any? Did you ever try my suggestion of applying topical gel intended for burning symptoms to strategic locations on your foot to see where the source of nerve pain is? Can't the wire for the peripheral nerve stimulator be lengthened? When I tried a TENS unit for a while and found the thin wire a bit too short, the PT/chiro guy who gave it to me spliced some wires together himself to give me a longer wire.

It may be worth going to Dellon just to get another perspective on things. Maybe he'll have other ideas for detection of problem (he uses a different testing device) and remedy (e.g. re-routing of the nerve or whatever).

PS--Myerson has left that practice and is no longer in that hospital.

[]

Re: What to do when everything else fails?

Henry C. on 10/16/02 at 18:25 (097667)

Thanks Elliot for your comments. I always know you are there to provide another view into the manner. The bone is completly fixed. It was in the operation to fix the bone that I recieved the TTS injury. The burning is mostly along the outside edge of my foot behind my little toe. Like a lot of others on the message board, my toes have never been affected by this. Sometimes I feel the pain directly behind my ankle. When that happens, I do not feel any burning on the bottom of my foot.

When I am off my feet, the pain seems to completly go away. But other then crutches, how so I stay off my foot for a month? Yes I have used the tropical Gel from Custom Meds in Inverness Fl.. I have tried the Formula 5 mixture and the Ket15, Gab6, and Cln mixture. Both seemed to help at first, but like all the medications it did not last for long.

The peripheral nerve stimulator that Dr. Schon wants to use would be implanted under the skin in my thigh. The wire that runs from the control unit to the palce where it is attached to the nerve is also run under the skin. The wire breaks very easily and I could not have very much repetitive motion with my leg. No swiming, biking, running or any other kind of movement that would break the wire. Hence it is possible to reduce the pain, but at the cost of having no mobility at all.

Like everything else, I too at first thougth that the methadone was the savior I have been searching for since 1997. I soon found that I required more and more to keep it's effect. I've just about run out of hope with this injury. In the last few years, I have thought about suicide many times. Thank God, something has always stopped me from doing it. I feel that I have exhausted about every means available to acheive some sort of relief from this.

As a former patient of Dr. Myerson, I recieved a letter informing me of his move. At this point in time I'm willing to do anything to get some relief!

Thank you for responce to my post. I only hoe some how someone can help me!

Henry Collins

Re: What to do when everything else fails?

Ed Davis, DPM on 10/16/02 at 18:58 (097671)

Your pattern of burning sounds like it may be related primarily to the lateral plantar nerve. That makes porta pedis entrapment more of a liable culprit. I would also encourage the second opinion with Dellon.
Ed

Re: What to do when everything else fails?

elliott on 10/16/02 at 22:19 (097698)

Again, not much to lose by seeing Dellon; maybe you'll get lucky with a diagnosis and remedy for your tricky symptoms. If you can somehow make sure your foot is in burning mode when tested in his office, that would help.

Have you considered chiro alignments on your foot? I know, a long shot to be sure.

The purpose of the topical gel is not to cure you or even provide complete relief (it can't given a functioning nervous system), but rather to aid in determining the area of entrapment. For example, if you apply the gel only at the ankle and you get no relief whatsoever but then apply it on the outside edge of your foot and do get some relief, that may be an indication that the area of entrapment is on the outer edge of your foot and not the ankle. Again, nothing to lose by experimenting.

Scary you've considered suicide without even contemplating staying off your foot for a month. There are indeed better options than staying home for the month crawling on your knees. One option is the so-called knee crutch; do a search on this site for a recent thread discussing it and providing a link to its picture. In the same thread as where that came up I mentioned a so-called knee cart on wheels; the doc's office you've been to can tell you how to get it (I may try it myself if I get another surgery). Breaking the pain cycle for a while may be worth a try.

[]

Re: What about an implantable pain med pump?

BrianG on 10/16/02 at 22:31 (097701)

Hi Henrey,

I'm sorry the Methadone seems to be building up a tolerance at unaceptable levels. The nerve simulator doen't seem like a very good quality of life. Have any of the pain management doctors mentioned the Medtronics implantable pain med pump? It has a resevoir filled with differnt combinations of pain meds and other meds as needed. Some may be used for nausia, seizures, etc. The pump will send very small amounts of the drugs, directly into the spinal cord, very efficient!

I know you have been on the Methadone for a while now, don't let the doctors wean you off it too fast. It took a while to get you were you are at now. You should be tapered off slowly, so as to really minimize any withdrawal symptoms you may have. Better have some Kaopectate on hand, just in case. Good luck, I wish the meds had worked better for you.

Regards
BrianG

Re: What to do when everything else fails?

Judy H. on 10/24/02 at 21:21 (098304)

I am new. Hope this works. I had tarsal tunnel release and neuroplasty 2 months ago. My Tulsa,OK podiatrist learned procedure from Dr. Dellon in Baltimore. Purpose was to help with buring PN in toes and forefoot. Now I have a little less burning in toes, but have tight bands and burning pain where the incisions were made. More pain and difficulty in walking than before. The PT exercises just kill me. Make the feet hurt even more.
I am the first patient at rehab (at a major hospital) that has had this surgery.

I have been offered the spinal cord stimulator also. This tarsal tunnel surgery sounded better...get to problem, etc. Doc did find yellow mushy nerves in tunnel. He still has hope that they will regenerate.
Comments please. Pain patch 50mg. and Neurontin are only meds for pain.
Since patch I have depression, anxiety and a burning/itching sensation.
Is this the Duragestic patch or have I developed these new symptoms due to surgery and being overdosed on Percocet for a month.

Re: What to do when everything else fails?

Ed Davis, DPM on 10/16/02 at 15:17 (097650)

Why do TT releases fail? We are not sure but one reason may be that the area of entrapment may be beyond the 'classical' tarsal tunnel. An area that has been implicated is the porta pedis which is a 'canal' beneath the abductor hallucis muscle where the nerves enter the sole of the foot.

A. Lee Dellon, MD of Baltimore, has, in recent years made many of us take another look at the porta pedis as an area of potential entrapment of the branches of the posterior tibial nerve.

I recently saw a patient whom I had performed a tarsal tunnel release on a few years back. He improved a lot clinically and his NCV got better after the surgery but he did not get complete relief. I injected the porta pedis with a local anesthetic and a steroid and he returned with considerable improvement.

Lets assume for a moment, that the problem still lies in the 'classical' tarsal tunnel. Are there any biomechanical problems which may be placing pressure on the nerve? Are there any nearby structures that may maintain pressure on the nerve such as varicose veins in or near the tarsal tunnel? That can be tested with temporary devices such as wedges. Excess pressure on the nerve may be decreased by placing a silicone sleeve around the nerve (like running wires through conduit) or even wrapping a vein around the nerve.
Ed

Re: What to do when everything else fails?

Henry C on 10/16/02 at 16:11 (097654)

Dr. Davis

The nerve was injured in an operation to fix a hole in the bottom of my tibia that was obtained from a fall. My first operation was performed by Dr. Mark Myerson in Baltimore. Before that operation, I do not believe that I had that much pain on the sole of my foot. After that operation failed, I was sent to his associate Dr. Lew Schon. He perfomed his vein wrap procedure which did not relieve the burning on the sole of my foot.

Dr. Schon said he believed that the nerve was stretched in the operation to fix the bone. Dr. Schon said the nerve looked fine in the operation, There is no sist or anything else putting pressure on the nerve. Right now all he has to offer is a peripheral nerve stimulator which would be implanted in my thigh. Every regualr pain management doctor who I have seen automatically has offered to use a spinal cord stimulator.

I have heard that the spinal cord stimulator is not that affective for extremities such as the foot. The implant Dr. Schon uses would be alright with the exception of the wire that is run from the unit to where it is attached to the nerve. It is very easy to break and would limit my movement to that of a 70 year old man. I have never came across any one on this message board that has either one of these in treatment of TTS. Are stimulators used in the treatment of TTS?

I know Dr. Dellon is in the same hospital as Dr. Schon and Myerson. Is he using some other form of treatment not being used by the other doctors? Is so, what is it? I am not afraid of going through another surgery if it might help. At this point in time I am willing to try anything even if it is experimental!

I have lived with this problem since 1997 and it has about ruined my whole life! I despretely NEED some help in making these types of decisions.

I read this message board every day in hopes of finding a cure!

Thanks,

Henry Collins

Re: What to do when everything else fails?

elliott on 10/16/02 at 16:33 (097657)

Sorry for your setback and continued pain. I had thought you were one of those miracle cases where it was just a matter of finding the right cheap drug.

I have some questions and suggestions. Is your bone problem fixed? Is the burning there all the time or only when you use your foot? If the latter, maybe staying off it entirely for a month or so would be worth a shot. Where exactly on your sole is the burning? Can you ascertain which nerve or branch it is, if any? Did you ever try my suggestion of applying topical gel intended for burning symptoms to strategic locations on your foot to see where the source of nerve pain is? Can't the wire for the peripheral nerve stimulator be lengthened? When I tried a TENS unit for a while and found the thin wire a bit too short, the PT/chiro guy who gave it to me spliced some wires together himself to give me a longer wire.

It may be worth going to Dellon just to get another perspective on things. Maybe he'll have other ideas for detection of problem (he uses a different testing device) and remedy (e.g. re-routing of the nerve or whatever).

PS--Myerson has left that practice and is no longer in that hospital.

[]

Re: What to do when everything else fails?

Henry C. on 10/16/02 at 18:25 (097667)

Thanks Elliot for your comments. I always know you are there to provide another view into the manner. The bone is completly fixed. It was in the operation to fix the bone that I recieved the TTS injury. The burning is mostly along the outside edge of my foot behind my little toe. Like a lot of others on the message board, my toes have never been affected by this. Sometimes I feel the pain directly behind my ankle. When that happens, I do not feel any burning on the bottom of my foot.

When I am off my feet, the pain seems to completly go away. But other then crutches, how so I stay off my foot for a month? Yes I have used the tropical Gel from Custom Meds in Inverness Fl.. I have tried the Formula 5 mixture and the Ket15, Gab6, and Cln mixture. Both seemed to help at first, but like all the medications it did not last for long.

The peripheral nerve stimulator that Dr. Schon wants to use would be implanted under the skin in my thigh. The wire that runs from the control unit to the palce where it is attached to the nerve is also run under the skin. The wire breaks very easily and I could not have very much repetitive motion with my leg. No swiming, biking, running or any other kind of movement that would break the wire. Hence it is possible to reduce the pain, but at the cost of having no mobility at all.

Like everything else, I too at first thougth that the methadone was the savior I have been searching for since 1997. I soon found that I required more and more to keep it's effect. I've just about run out of hope with this injury. In the last few years, I have thought about suicide many times. Thank God, something has always stopped me from doing it. I feel that I have exhausted about every means available to acheive some sort of relief from this.

As a former patient of Dr. Myerson, I recieved a letter informing me of his move. At this point in time I'm willing to do anything to get some relief!

Thank you for responce to my post. I only hoe some how someone can help me!

Henry Collins

Re: What to do when everything else fails?

Ed Davis, DPM on 10/16/02 at 18:58 (097671)

Your pattern of burning sounds like it may be related primarily to the lateral plantar nerve. That makes porta pedis entrapment more of a liable culprit. I would also encourage the second opinion with Dellon.
Ed

Re: What to do when everything else fails?

elliott on 10/16/02 at 22:19 (097698)

Again, not much to lose by seeing Dellon; maybe you'll get lucky with a diagnosis and remedy for your tricky symptoms. If you can somehow make sure your foot is in burning mode when tested in his office, that would help.

Have you considered chiro alignments on your foot? I know, a long shot to be sure.

The purpose of the topical gel is not to cure you or even provide complete relief (it can't given a functioning nervous system), but rather to aid in determining the area of entrapment. For example, if you apply the gel only at the ankle and you get no relief whatsoever but then apply it on the outside edge of your foot and do get some relief, that may be an indication that the area of entrapment is on the outer edge of your foot and not the ankle. Again, nothing to lose by experimenting.

Scary you've considered suicide without even contemplating staying off your foot for a month. There are indeed better options than staying home for the month crawling on your knees. One option is the so-called knee crutch; do a search on this site for a recent thread discussing it and providing a link to its picture. In the same thread as where that came up I mentioned a so-called knee cart on wheels; the doc's office you've been to can tell you how to get it (I may try it myself if I get another surgery). Breaking the pain cycle for a while may be worth a try.

[]

Re: What about an implantable pain med pump?

BrianG on 10/16/02 at 22:31 (097701)

Hi Henrey,

I'm sorry the Methadone seems to be building up a tolerance at unaceptable levels. The nerve simulator doen't seem like a very good quality of life. Have any of the pain management doctors mentioned the Medtronics implantable pain med pump? It has a resevoir filled with differnt combinations of pain meds and other meds as needed. Some may be used for nausia, seizures, etc. The pump will send very small amounts of the drugs, directly into the spinal cord, very efficient!

I know you have been on the Methadone for a while now, don't let the doctors wean you off it too fast. It took a while to get you were you are at now. You should be tapered off slowly, so as to really minimize any withdrawal symptoms you may have. Better have some Kaopectate on hand, just in case. Good luck, I wish the meds had worked better for you.

Regards
BrianG

Re: What to do when everything else fails?

Judy H. on 10/24/02 at 21:21 (098304)

I am new. Hope this works. I had tarsal tunnel release and neuroplasty 2 months ago. My Tulsa,OK podiatrist learned procedure from Dr. Dellon in Baltimore. Purpose was to help with buring PN in toes and forefoot. Now I have a little less burning in toes, but have tight bands and burning pain where the incisions were made. More pain and difficulty in walking than before. The PT exercises just kill me. Make the feet hurt even more.
I am the first patient at rehab (at a major hospital) that has had this surgery.

I have been offered the spinal cord stimulator also. This tarsal tunnel surgery sounded better...get to problem, etc. Doc did find yellow mushy nerves in tunnel. He still has hope that they will regenerate.
Comments please. Pain patch 50mg. and Neurontin are only meds for pain.
Since patch I have depression, anxiety and a burning/itching sensation.
Is this the Duragestic patch or have I developed these new symptoms due to surgery and being overdosed on Percocet for a month.