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tarsal tunnel

Posted by nikki s on 6/08/02 at 11:07 (086770)

I began having foot pain in heels about 9 years ago when I was a few months before graduating nursing school.It progressively got worse. All the doctors diagnosed it as 'plantar fascitis'. I knew it wasn't because I knew the symptoms were not the same, but it was a quick and easy way to 'diagnose me, order yet another pair of 'specialized' orthotics and prescribe lots of anti-inflamatories.Finally in 2000 I found a MD who finally diagnosed me correctly and I was excited as he was that this was the answer,I was told he would do one foot at a time, give about 4 weeks rest and recovery and then do the other foot and I would be able to contine in the work I loved.Supposedly I was the one in 10,000 who everything goes wrong with. The pain was excrutiating, pain pills didn't help much. after two years of trying to fix the effects of the surgery I've been on just about every medication out there:neurotin,lamictal
antidepressants (necessary when you're life has been ripped out from under you;anti-imflammatories;steroids;physical therapy;hydrotherapy; taping;TENS unit.You name it. I've done it.This past year I've been to Mayo Hospital, the best in the world, seen both by the orthopedic/surgical experts and there's nothing I can do.They suggested an outpatient therapy program for three weeks, but to do that you have to stay at a hotel and eat out for three weeks and it is just too damn expensive (says my husband).I've had to give up nursing. I'm currently in a medical secretary program at the local community college ( a step down in status and pay), I've bombed my interviews for jobs because I just can't hide the lack of enthusiasm I have for a office/desk job. I used to work in home health where you're on your own basically all day and only had to come in at the end of the day to do paperwork.There's only Pain Clinic in my town with one doctor. I know he's done everything out there and he's tired of trying to treat me with no relief. If I'm really bad he'll give me steroid shots in my ankle/heel, which do help but I can't get those on a regular basis because of the side effects (pain free) and supposedly they cause more scar tissue to build up. I have it in both my feet. The doctor will only treat the one I've had surgery on. Nobody will treat the other since I had so many problems.When I was at Mayo they told me I wasn't a good candidate for a pain/ or nerve blocking pump because of my age. If it will work I'll do it.IF ANYONE HAS ANY KNOWLEDGE OF THE PUMPS PLEASE LET ME KNOW

Re: tarsal tunnel

Laurie R on 6/08/02 at 11:33 (086771)

Hi Nikki, I am so sorry to hear all you have been through .... Also that you had to give up your work , we all need good nurses ..

I don't have knowledge on the pumps you are asking about , but I can tell you a little bit about the fentanyl catheter pump .... I had in my spine for about a week and a half after my foot surgery a few weeks ago . I will say , I did not feel much post opp pain at all...

I had a TT release and a PF release and my tendons cleaned out , also I had a groth removed from my fascia .... I also have RSD this was the reason for the fentanyl catheter pump ....

Maybe you can ask about the fentanyl cathter pump . The only bad thing was I broke the catheter and my PM doc had to remove it so I would not get an infection in my spine....

It works to control pain , it did for me anyway ... Have you tried long acting pain meds , like Oxy or the fentanyl patch yet ? They control the pain better and work around the clock ....Just a thought ....

I wish you only the best , Laurie R

Re: tarsal tunnel

Ed Davis, DPM on 6/08/02 at 12:50 (086775)

You were not specific about the surgery you had but sounded like it was tarsal tunnel surgery. What exactly went wrong with the surgery? What are they saying is wrong now and why cannot anything be done? Treating the pain is certainly important but solving the underlying cause could be curative.
Ed

Re: tarsal tunnel

BrianG on 6/09/02 at 15:09 (086851)

Hi Nikki,

One of the largest makers of pumps can be found at http://www.medtronics.com Also, one pain med that is particularly good for nerve type pain is Dolophine, which can be taken orally, or through an implanatable pump. Good luck

BrianG

PS Maybe it's time to look for another pain management clinic?

Re: tarsal tunnel

Henry C on 6/10/02 at 08:39 (086916)

Sorry to hear about all your troubles. Like you, I have tried about everything possible except pain pumps to treat my TTS pain. I may not be an expert on pain pumps, but here is what I found out in my investigation of the topic. Actually pain pumps are not widley used to treat TTS. To treat TTS, stimulators are used to send electrical impulses which confuse the nervious system and mask the pain. The stimulator produces a tingling sensation as if your foot is asleep. It is much like a tens unit that is implanted in your body

There are two types of these stimulators, a Spinal Cord Stimulator (SCS) and a Peripheral Nerve Stimulator (PNS). Both are sold by Medtronics and can be about 50% effective in reducing your pain. I really suggest you take BrianG's advice and visit their web page.

Spinal Cord Stimulator (SCS) - The one major advantage of an SCS over the PNS is that the patient can take the SCS for a test drive before deciding on actually going through with the procedure. The SCS procedure involves placing a small electrode at the base of your back next to the spinal cord A small wire attached to electrode is connected to a contol unit like a tens unit that you wear on your belt. You then get several days to determine if the device is right for you. If so, the contol unit on your belt is replaced with a small contol unit that is placed under your skin. A small remote control unit is then used to contol the unit. You hold the remote control over the skin where the unit is placed and set it accordingly. The best feature with a unit like this is the fact that you can actually try the unit out before having it permanently implanted. The bad thing about an SCS is the placement of electorde. Since the electrode is placed in your back the area where the tingling is felt can range any where from your waist down to your foot.

Perioheral Nerve Stimulator (PNS) - Major advantage is that the electrode is surgcally placed directly on the nerve causing the pain. This procedure involves sewing the electrode directly on the nerve causeing the pain. A small wire is then fed under the skin to the control unit that is placed under the skin in your thigh. The major draw back of this procedure is the wire that is ran from the electorde to the control unit. It is very fragile and can break with any repetitive motion of the leg. Hence you get better pain relief because of the placement of the electode, but are very limited in what you can do with your leg.

Both of these procedures are very expensive ( $30,000 to $40,000) and you will probably still require pain medications due to the fact that they only reduce the pain about %50. Although %50 sounds pretty good when you're in a lot of pain! Most pain management clinics prefer the SCS since it is a much simplier procedure. The PNS procedure is much more complex and requires a very good surgen.

I have consided both and have decided to wait a little while longer. If it is scare tissue, have you considered a vien wrap procedure. The procedure involves removing a vien from your leg and wrapping it around the nerve. The vien acts like an insulator protecting the nerve. I have had this procedure done and it provided some relief. If you are on the east coast, I can provide you the name of a very good doctor.

I know from experience, that TTS can make your life a living hell. I only hope that the information that I have been able to provide will assist you in making a decison. I also hope that any one out there reading this message can hopfully provide some additional information to you. Keep in touch with me via the message board, I am very interested the outcome of what ever you decide. It may help me in my decision.

Henry

Re: A different pain med, for nerve type pain

BrianG on 6/11/02 at 20:49 (087205)

Hi Henry,

How are your pain levels these days? Do you still take Neurontin? I took it for a while, for a different nerve problem. It took almost all my nerve pain away, but I couldn't deal with the side effects and dropped it. My heels still hurt, put it's not a nerve type pain, thankfully. I now you said you had some problems with the OxyContin in the past. Personlly I don't think it is that effective for your type of pain. I've read that the best pain med for nerve type pain, is Methadone. It's in pill form, and usually taken 4 times a day (for chronic pain). At small doses, you might find some relief, without that spacey feeling. Just a thought. Good luck

BrianG

Re: tarsal tunnel

eileenc on 6/12/02 at 07:34 (087243)

Who does the vein wrap procedure? I live in NE Ohio.

Re: A different pain med, for nerve type pain

Henry C on 6/12/02 at 07:39 (087244)

Hello Brian,

My pain levels are about the same. I either have a burning aching pain on the bottom of my foot or a stabbing pain behind my ankle. It seems to act like a switch, I never have the pain in both places and I can never tell which spot will hurt. As for the Neurontin, I have increased my medication to 2700 MG per day. It has helped a very little with the burning on the bottom of my foot, but has done nothing for the stabbing pain behind my ankle. Also, I have gained about ten pounds that I cann't seem to loose. Is this one of side effects of the Neeurontin?

I am now going to a new pain clinic (for me) in Pittsburgh Pa. They are really pushing the spinal Cord stimulator, but I have said no. I am due to go back there is several weeks and they plan on putting me on some type of pain medication, I don't know what type of medication they plan on using. They said that they use a medication that is taken once or twice a day. I find it interesting that Methadone is being used for nerve pain. Where did you get this information? Is there any kind of medical journal stating this. I am very interested in obtaining more information on it.

As everyone knows, life with TTS is hell. I am very thankful for this message board. I read it every day and see how other people with TTS deal with it in their daily lives. I do not know anybody in my area with this condition. Therefore I have no one other then the people on this message board who knows what life with TTS is really all about.

This message board has awaken me to see that there are a lot of people out there worse then me. It has given me strength to continue my daily life. I pray that some day some one will discover a cure for this condition. Until then, I do everything in my power to make it day by day.

Henry

Re: tarsal tunnel

Henry C on 6/12/02 at 08:08 (087254)

Hello,

I had my first nerve release in November of 1998. I was told it would be a simple procedure that would fix everything. Well to my surprise, it wasn't the cure all that I was told of. That is when I came accross a real doctor to treat my condition. His name is Dr. Lew Schon and he works at the Greater Chesapeake Orthopaedic Assocaites in Baltimore MD. I know this is a very long way from NE Ohio. It was also a very long way from home for me too.

I found Dr. Schon to be an excellant doctor and would recommend him to everyone. Unlike other doctors that I have seen, he really seems to care about his patients. When I go to see him, he takes time with you. It's not a rush like a lot of other doctors. He listens to your problems and then takes time to explain what he can do for you. He performed a vein wrap procedure on me in March 2000. It helped with the pain but it too was not the cure all procedure that I hoped for.

The vein wrap procedure is performed on patients who have had a previous failed nerve release. Besides some type of stimulator, it is the last procedure for a failed nerve release. I found that the procedure was not that bad, I was back to work in about 3-4 weeks after the procedure.

Dr. Schon is very busy and it may take several months to get an appointment with him. I really suggest you see him and I'm sure he will be able to give you an honest assement of what can be done for you. They have a web page at http://www.gcoa.net and his phone number is 800-571-9820 extension 2891. When ever I have a problem, I usally email him and I get a response right a way.

I hope this helps!

Henry

Re: For Henry

Sharon W on 6/12/02 at 08:45 (087263)

Henry,

Check out this link:

http://www.hosppract.com/issues/2000/07/brook.htm

It is actually a long report on chronic pain, but toward the end there is a scientific description of how methadone helps...

-- Sharon

Re: A different pain med, for nerve type pain

BrianG on 6/12/02 at 21:40 (087379)

Hi Henry,

That was a great post by Sharon. Dr Brookoff is a leader in the field of pain management. It sounds like your doctors want to start you on either OxyContin, or MS Contin. Both are good, long acting pain meds. Neiher of them is all that good in treating nerve type pain though. I can send you a good web site with a lot of pain management information, if you'd like to post an e-mail account. Lots of free ones out there, Yahoo, Hotmail (MSN), etc.

About the Neurontin, yes weight gain is a side effect. Some people take Topomax, which is also good for nerve pain, and tends to promote weight loss. Something to ask your doctor about. About the Methadone, it's usually taken 4 times a day, as it is not really a long acting pain med. Good luck

BrianG

Re: tarsal tunnel

eileenc on 6/13/02 at 07:56 (087429)

Henry,

Did you see Dr. Yu in Ohio? I know someone on this board did and I have forgotten who? (Side effect of the meds?)

Re: A different pain med, for nerve type pain

Henry C on 6/13/02 at 08:11 (087432)

Brian,

Yes I thought that post by Sharon was great. The only thing is that I am having trouble printing it. The first two pages print and then the printer spits out an error. Don't know if it is one of the pictures or not. Several of them do print.

An e-mail address for me is (email removed). I would appreciate all the information you and anyone else can provide. I will ask my doctor about the Topomax. At my last visit, I mentioned the weight gain and they acted surprised. What are the other side effects of Neurontin? Remember, I am taking 2700 MG a day (900 MG three times a day). The one good side effect that I have noticed is that like Sharon, it helps me sleep. Do you have any good web sites where I can get information about this that I can show my doctor?

I was told that the pain clinic did not use OxyContin, but I assume they will use a product in that same family. I have found that it is really hard to find a good pain management doctor. Last year when I was having all that trouble with OxyContin, I told my pain management doctor that I was feeling very strange and was having suicidal thoughts. His responce was that I wasn't taking enough of the mediation. He wanted to double my prescription. I told him I had a job that required me to be able to think and refused his offer.

The pain management center that I am now attending specializes in treating severe pain. They use injections and that kind of stuff. On my first visit, I was told that it would be a waste of time and money for me to go through that kind of treatment. That's when they started really pushing for the spinal cord stimulator. I don't know if this place is it or not, but I need to find a pain management doctor who can understand the type of pain I am having and provide a plan on how I can deal with it. Right now that seems almost impossible to find.

My new doctor really put the guilt trip on me the last time I saw him. He asked how I can deny my self the opportunity of feeling less pain by trying a spinal cord stimulator. I get the impression that this is all he wants to do. He seemed very disapointed when I refused. I will be very surprised to see what happens at my next visit.

Again, thank you for all the great information, I really appreciate it.

Henry

Re: tarsal tunnel

Henry C on 6/13/02 at 08:28 (087433)

No I have not seen Dy Yu, but I have seen many messages on this board with his name mentioned. All you have to do to see every message with his name in it is do a search from the main page of the message board.

Right now I don't know of any action other then a stimulator or pain medications to treat this. I do not believe that I am quite ready for a stimulator, but finding the RIGHT pain management doctor can be quite difficult!

If you have a good one you are extremly lucky!

Henry

Re: tarsal tunnel

Tammie on 6/13/02 at 12:16 (087472)

It was Ron as i was interested also but decided to try the Pain management as a few of the Drs here thought it ws a good idea and I must thank them alot as it turned out well so far for me! But Ron B I think it was went to Dr. YU you might want to look his name up to see what inor you could find on him! He has not posted in such a long time! Sorry to interfere on information on him but I was quite interested on how e was coming along! Hope you find the info you need and have a great day!

Re: A different pain med, for nerve type pain

BrianG on 6/13/02 at 22:31 (087532)

Hi Henry,

Tomorrow I'll send you a couple links, that I think you'll find usefull. One thing to remember, is that pain clinic use many types of treatments. Some use blocks, some don't. Some use narcotics, some don't. I'm sure you get the picture. If your not happy with the treatment offered to you, keep on looking. There are many people who travel for hours, once a month, in order to get valid pain relief. As a whole, the specialty is getting better. As someone with chronic pain, it can't happen soon enough. Be talking to you.

BrianG

Re: A different pain med, for nerve type pain

Sherry on 6/13/02 at 23:30 (087537)

Hi, I take 4800 neurontin and elevil 100mg at night. It has worked very well for me. Before the meds, I would walk the floor most of the night because of the pain. Now I sleep all night. Most of the pain is gone and no burning pain. I may get the shooting pains once a day. I do not want the syrgery as I have had more than my share. So I will try anything. I never heard of this until I got it, and just found this board. I feel better knowing there are others with this. I wish you well. Sherry

Re: Sharon - chronic pain links

Donna SL on 6/16/02 at 16:50 (087747)

Sharon,

I'm so glad to see the link above to Henry

http://www.hosppract.com/issues/2000/07/brook.htm

on chronic pain I sent you way back has been of some benefit, and you are referring it to other people.

These are a couple more I had mentioned before which may be a bit easier to understand.

http://www.helpforpain.com/articles/understand-neuropathic-pain/understanding.htm

This one had nice annimation

http://www.bayareapainmedical.com/

Donna

Re: Sharon - chronic pain links

Sharon W on 6/16/02 at 17:51 (087749)

Donna,

Yes, sorry I didn't mention that link came from you -- I found it VERY interesting, in fact when I was at my doctor's office recently I had brought along a battered and scribbled-on printout with to read over once again. It happened that she had a young medical student there that she 'mentors', and I asked her to give it to him. She told me after (when I asked) that she had, but that she had read it first, and put together some questions to 'quiz' him with. So I guess that is ONE FEWER young doctor who will be going out into the working world without knowing much of anything about chronic pain!

Thanks for the new links -- I haven't really had time to go over them yet, but I will.

-- Sharon

Re: Sharon - chronic pain links

Donna SL on 6/16/02 at 20:57 (087756)

Hi Sharon,

Chronic pain, and pain mgt is so poorly understood, and so many people have, and still are being undertreated by their physians for pain, a law was recently passed I know at least in CA that doctors have to attend seminars on pain mgt to keep their license here. I think someone mentioned maybe Brian that this is a national thing. I only know about CA.

A good example of ignorance is the problems you experiences yourself. I recall you had a lot of trouble getting meds in the beginning, and your pod withholding the neurontin initially which wouldn't have affected your NCV test anyway. Your reg physians should have known that was nonsense, or picked up a book, done some research, or made a phone call for info, so you wouldn't have had to suffer for one minute. Also, you shouldn't have had to feel intimated to ask for the narcotic pain killer (ultram?) before the trip.

It just upsets me so much when I hear doctors not prescribing pain meds in a timely manner, or strong enough ones, and their ignorance on chronic pain development. Not only does the person suffer in the short run when the pain is acute, but also by not treating pain properly, the person then can develop this chronic pain situation, RSD, etc., which is a disease in itself.

Donna

Re: Donna - have you ever seen Part 2?

Sharon W on 6/16/02 at 23:01 (087765)

Here is the SECOND part of that pain link you sent me way back when -- I looked it up. Not as interesting as the first, at least not to me; it is mostly about medications and dosages, etc.

http://www.hosppract.com/issues/2000/09/brook.htm

-- Sharon

Re: PS

Sharon W on 6/16/02 at 23:24 (087766)

Donna,

At the hospital where I worked, I ATTENDED a pain seminar. It lasted all day. There were quite a number of doctors there, and the seminar was not offered to the general public. But those giving the seminar did NOT present much information about chronic pain vs. acute pain, it focused on which drugs to prescribe for what level of pain, which drugs are safer, etc. At no time was the mechanism by which acute ('normal') pain gradually becomes chronic explained during that seminar.

-- Sharon

Re: Sharon - have you ever seen Part 2?

Donna SL on 6/17/02 at 01:02 (087767)

Sharon,

I still have that link, and had looked at real fast today, but as you said it's not as interesting, so I decided not to send it again. I think it's more of research type of article.

The seminar that you mentioned in your next post sounded more like just a acute pain seminar as you suggested. Usually a totally different approach is needed to treat chronic pain. Doctors need to know a lot of this pain is neuropathic in origin, and is in the process, or already has become centralized.

How many times have you heard people say I had PF in one foot, and now the other is hurting, and they blame it on one foot over compensating for the other, etc. This may not always be the case. What may be happening is the pain receptors are increasing, getting larger, and faster, and spreading. Also the longer you have pf, or other injuries, and the pain is left untreated the harder it is to get rid of. Again this is usually due to centralization of pain, and instead of more surgeries, treatments, etc. on the feet, the condition should be treated from a neuropathic perspective with nerve medications, etc.

It's much more complicated to treat pain once it reaches a centralized level. A more through understanding of the nervous system is required to treat this, plus a more intensive knowledge of psychopharmacology (sp?). Doctors need to know that they must refer their patients to pain mgt specialist as part of the total treatment package just like they would for any other problem if they are not equipped with this knowledge. The sooner they do this in the course of treating the ailment, injury, etc., the better

Donna

Re: Donna - the seminar

Sharon W on 6/17/02 at 02:10 (087768)

Actually, the seminar DID talk about chronic pain, saying that different drugs were needed to treat it -- they even mentioned methadone! And they emphasized that chronic pain needs to be treated more aggressively -- they just didn't say WHY! They focused heavily on cancer patients who are losing the fight, and on other chronic terminal conditions -- the kinds of things one needs to know about for good hospice care. But I don't remember a SINGLE reference to ANY kind of neuropathy... or to nerve compression disorders, or chronic back pain, or anything like that.

-- Sharon

Re: medications for chronic pain

Ed Davis, DPM on 6/26/02 at 16:20 (088521)

Donna:
CA is certainly moving in the right direction concerning education of doctors in the are of pain management. It has often been the hand of regulatory agencies that have led doctors to be concerned about 'overprescribing' pain medication. I know a number of doctors who acted in the interest of their patients but were sanctioned by licensing boards for 'overprescribing.' This is an area in which doctors, insurers and regulatory agencies need to reach some common ground on.
Ed

Re: tarsal tunnel

Laurie R on 6/08/02 at 11:33 (086771)

Hi Nikki, I am so sorry to hear all you have been through .... Also that you had to give up your work , we all need good nurses ..

I don't have knowledge on the pumps you are asking about , but I can tell you a little bit about the fentanyl catheter pump .... I had in my spine for about a week and a half after my foot surgery a few weeks ago . I will say , I did not feel much post opp pain at all...

I had a TT release and a PF release and my tendons cleaned out , also I had a groth removed from my fascia .... I also have RSD this was the reason for the fentanyl catheter pump ....

Maybe you can ask about the fentanyl cathter pump . The only bad thing was I broke the catheter and my PM doc had to remove it so I would not get an infection in my spine....

It works to control pain , it did for me anyway ... Have you tried long acting pain meds , like Oxy or the fentanyl patch yet ? They control the pain better and work around the clock ....Just a thought ....

I wish you only the best , Laurie R

Re: tarsal tunnel

Ed Davis, DPM on 6/08/02 at 12:50 (086775)

You were not specific about the surgery you had but sounded like it was tarsal tunnel surgery. What exactly went wrong with the surgery? What are they saying is wrong now and why cannot anything be done? Treating the pain is certainly important but solving the underlying cause could be curative.
Ed

Re: tarsal tunnel

BrianG on 6/09/02 at 15:09 (086851)

Hi Nikki,

One of the largest makers of pumps can be found at http://www.medtronics.com Also, one pain med that is particularly good for nerve type pain is Dolophine, which can be taken orally, or through an implanatable pump. Good luck

BrianG

PS Maybe it's time to look for another pain management clinic?

Re: tarsal tunnel

Henry C on 6/10/02 at 08:39 (086916)

Sorry to hear about all your troubles. Like you, I have tried about everything possible except pain pumps to treat my TTS pain. I may not be an expert on pain pumps, but here is what I found out in my investigation of the topic. Actually pain pumps are not widley used to treat TTS. To treat TTS, stimulators are used to send electrical impulses which confuse the nervious system and mask the pain. The stimulator produces a tingling sensation as if your foot is asleep. It is much like a tens unit that is implanted in your body

There are two types of these stimulators, a Spinal Cord Stimulator (SCS) and a Peripheral Nerve Stimulator (PNS). Both are sold by Medtronics and can be about 50% effective in reducing your pain. I really suggest you take BrianG's advice and visit their web page.

Spinal Cord Stimulator (SCS) - The one major advantage of an SCS over the PNS is that the patient can take the SCS for a test drive before deciding on actually going through with the procedure. The SCS procedure involves placing a small electrode at the base of your back next to the spinal cord A small wire attached to electrode is connected to a contol unit like a tens unit that you wear on your belt. You then get several days to determine if the device is right for you. If so, the contol unit on your belt is replaced with a small contol unit that is placed under your skin. A small remote control unit is then used to contol the unit. You hold the remote control over the skin where the unit is placed and set it accordingly. The best feature with a unit like this is the fact that you can actually try the unit out before having it permanently implanted. The bad thing about an SCS is the placement of electorde. Since the electrode is placed in your back the area where the tingling is felt can range any where from your waist down to your foot.

Perioheral Nerve Stimulator (PNS) - Major advantage is that the electrode is surgcally placed directly on the nerve causing the pain. This procedure involves sewing the electrode directly on the nerve causeing the pain. A small wire is then fed under the skin to the control unit that is placed under the skin in your thigh. The major draw back of this procedure is the wire that is ran from the electorde to the control unit. It is very fragile and can break with any repetitive motion of the leg. Hence you get better pain relief because of the placement of the electode, but are very limited in what you can do with your leg.

Both of these procedures are very expensive ( $30,000 to $40,000) and you will probably still require pain medications due to the fact that they only reduce the pain about %50. Although %50 sounds pretty good when you're in a lot of pain! Most pain management clinics prefer the SCS since it is a much simplier procedure. The PNS procedure is much more complex and requires a very good surgen.

I have consided both and have decided to wait a little while longer. If it is scare tissue, have you considered a vien wrap procedure. The procedure involves removing a vien from your leg and wrapping it around the nerve. The vien acts like an insulator protecting the nerve. I have had this procedure done and it provided some relief. If you are on the east coast, I can provide you the name of a very good doctor.

I know from experience, that TTS can make your life a living hell. I only hope that the information that I have been able to provide will assist you in making a decison. I also hope that any one out there reading this message can hopfully provide some additional information to you. Keep in touch with me via the message board, I am very interested the outcome of what ever you decide. It may help me in my decision.

Henry

Re: A different pain med, for nerve type pain

BrianG on 6/11/02 at 20:49 (087205)

Hi Henry,

How are your pain levels these days? Do you still take Neurontin? I took it for a while, for a different nerve problem. It took almost all my nerve pain away, but I couldn't deal with the side effects and dropped it. My heels still hurt, put it's not a nerve type pain, thankfully. I now you said you had some problems with the OxyContin in the past. Personlly I don't think it is that effective for your type of pain. I've read that the best pain med for nerve type pain, is Methadone. It's in pill form, and usually taken 4 times a day (for chronic pain). At small doses, you might find some relief, without that spacey feeling. Just a thought. Good luck

BrianG

Re: tarsal tunnel

eileenc on 6/12/02 at 07:34 (087243)

Who does the vein wrap procedure? I live in NE Ohio.

Re: A different pain med, for nerve type pain

Henry C on 6/12/02 at 07:39 (087244)

Hello Brian,

My pain levels are about the same. I either have a burning aching pain on the bottom of my foot or a stabbing pain behind my ankle. It seems to act like a switch, I never have the pain in both places and I can never tell which spot will hurt. As for the Neurontin, I have increased my medication to 2700 MG per day. It has helped a very little with the burning on the bottom of my foot, but has done nothing for the stabbing pain behind my ankle. Also, I have gained about ten pounds that I cann't seem to loose. Is this one of side effects of the Neeurontin?

I am now going to a new pain clinic (for me) in Pittsburgh Pa. They are really pushing the spinal Cord stimulator, but I have said no. I am due to go back there is several weeks and they plan on putting me on some type of pain medication, I don't know what type of medication they plan on using. They said that they use a medication that is taken once or twice a day. I find it interesting that Methadone is being used for nerve pain. Where did you get this information? Is there any kind of medical journal stating this. I am very interested in obtaining more information on it.

As everyone knows, life with TTS is hell. I am very thankful for this message board. I read it every day and see how other people with TTS deal with it in their daily lives. I do not know anybody in my area with this condition. Therefore I have no one other then the people on this message board who knows what life with TTS is really all about.

This message board has awaken me to see that there are a lot of people out there worse then me. It has given me strength to continue my daily life. I pray that some day some one will discover a cure for this condition. Until then, I do everything in my power to make it day by day.

Henry

Re: tarsal tunnel

Henry C on 6/12/02 at 08:08 (087254)

Hello,

I had my first nerve release in November of 1998. I was told it would be a simple procedure that would fix everything. Well to my surprise, it wasn't the cure all that I was told of. That is when I came accross a real doctor to treat my condition. His name is Dr. Lew Schon and he works at the Greater Chesapeake Orthopaedic Assocaites in Baltimore MD. I know this is a very long way from NE Ohio. It was also a very long way from home for me too.

I found Dr. Schon to be an excellant doctor and would recommend him to everyone. Unlike other doctors that I have seen, he really seems to care about his patients. When I go to see him, he takes time with you. It's not a rush like a lot of other doctors. He listens to your problems and then takes time to explain what he can do for you. He performed a vein wrap procedure on me in March 2000. It helped with the pain but it too was not the cure all procedure that I hoped for.

The vein wrap procedure is performed on patients who have had a previous failed nerve release. Besides some type of stimulator, it is the last procedure for a failed nerve release. I found that the procedure was not that bad, I was back to work in about 3-4 weeks after the procedure.

Dr. Schon is very busy and it may take several months to get an appointment with him. I really suggest you see him and I'm sure he will be able to give you an honest assement of what can be done for you. They have a web page at http://www.gcoa.net and his phone number is 800-571-9820 extension 2891. When ever I have a problem, I usally email him and I get a response right a way.

I hope this helps!

Henry

Re: For Henry

Sharon W on 6/12/02 at 08:45 (087263)

Henry,

Check out this link:

http://www.hosppract.com/issues/2000/07/brook.htm

It is actually a long report on chronic pain, but toward the end there is a scientific description of how methadone helps...

-- Sharon

Re: A different pain med, for nerve type pain

BrianG on 6/12/02 at 21:40 (087379)

Hi Henry,

That was a great post by Sharon. Dr Brookoff is a leader in the field of pain management. It sounds like your doctors want to start you on either OxyContin, or MS Contin. Both are good, long acting pain meds. Neiher of them is all that good in treating nerve type pain though. I can send you a good web site with a lot of pain management information, if you'd like to post an e-mail account. Lots of free ones out there, Yahoo, Hotmail (MSN), etc.

About the Neurontin, yes weight gain is a side effect. Some people take Topomax, which is also good for nerve pain, and tends to promote weight loss. Something to ask your doctor about. About the Methadone, it's usually taken 4 times a day, as it is not really a long acting pain med. Good luck

BrianG

Re: tarsal tunnel

eileenc on 6/13/02 at 07:56 (087429)

Henry,

Did you see Dr. Yu in Ohio? I know someone on this board did and I have forgotten who? (Side effect of the meds?)

Re: A different pain med, for nerve type pain

Henry C on 6/13/02 at 08:11 (087432)

Brian,

Yes I thought that post by Sharon was great. The only thing is that I am having trouble printing it. The first two pages print and then the printer spits out an error. Don't know if it is one of the pictures or not. Several of them do print.

An e-mail address for me is (email removed). I would appreciate all the information you and anyone else can provide. I will ask my doctor about the Topomax. At my last visit, I mentioned the weight gain and they acted surprised. What are the other side effects of Neurontin? Remember, I am taking 2700 MG a day (900 MG three times a day). The one good side effect that I have noticed is that like Sharon, it helps me sleep. Do you have any good web sites where I can get information about this that I can show my doctor?

I was told that the pain clinic did not use OxyContin, but I assume they will use a product in that same family. I have found that it is really hard to find a good pain management doctor. Last year when I was having all that trouble with OxyContin, I told my pain management doctor that I was feeling very strange and was having suicidal thoughts. His responce was that I wasn't taking enough of the mediation. He wanted to double my prescription. I told him I had a job that required me to be able to think and refused his offer.

The pain management center that I am now attending specializes in treating severe pain. They use injections and that kind of stuff. On my first visit, I was told that it would be a waste of time and money for me to go through that kind of treatment. That's when they started really pushing for the spinal cord stimulator. I don't know if this place is it or not, but I need to find a pain management doctor who can understand the type of pain I am having and provide a plan on how I can deal with it. Right now that seems almost impossible to find.

My new doctor really put the guilt trip on me the last time I saw him. He asked how I can deny my self the opportunity of feeling less pain by trying a spinal cord stimulator. I get the impression that this is all he wants to do. He seemed very disapointed when I refused. I will be very surprised to see what happens at my next visit.

Again, thank you for all the great information, I really appreciate it.

Henry

Re: tarsal tunnel

Henry C on 6/13/02 at 08:28 (087433)

No I have not seen Dy Yu, but I have seen many messages on this board with his name mentioned. All you have to do to see every message with his name in it is do a search from the main page of the message board.

Right now I don't know of any action other then a stimulator or pain medications to treat this. I do not believe that I am quite ready for a stimulator, but finding the RIGHT pain management doctor can be quite difficult!

If you have a good one you are extremly lucky!

Henry

Re: tarsal tunnel

Tammie on 6/13/02 at 12:16 (087472)

It was Ron as i was interested also but decided to try the Pain management as a few of the Drs here thought it ws a good idea and I must thank them alot as it turned out well so far for me! But Ron B I think it was went to Dr. YU you might want to look his name up to see what inor you could find on him! He has not posted in such a long time! Sorry to interfere on information on him but I was quite interested on how e was coming along! Hope you find the info you need and have a great day!

Re: A different pain med, for nerve type pain

BrianG on 6/13/02 at 22:31 (087532)

Hi Henry,

Tomorrow I'll send you a couple links, that I think you'll find usefull. One thing to remember, is that pain clinic use many types of treatments. Some use blocks, some don't. Some use narcotics, some don't. I'm sure you get the picture. If your not happy with the treatment offered to you, keep on looking. There are many people who travel for hours, once a month, in order to get valid pain relief. As a whole, the specialty is getting better. As someone with chronic pain, it can't happen soon enough. Be talking to you.

BrianG

Re: A different pain med, for nerve type pain

Sherry on 6/13/02 at 23:30 (087537)

Hi, I take 4800 neurontin and elevil 100mg at night. It has worked very well for me. Before the meds, I would walk the floor most of the night because of the pain. Now I sleep all night. Most of the pain is gone and no burning pain. I may get the shooting pains once a day. I do not want the syrgery as I have had more than my share. So I will try anything. I never heard of this until I got it, and just found this board. I feel better knowing there are others with this. I wish you well. Sherry

Re: Sharon - chronic pain links

Donna SL on 6/16/02 at 16:50 (087747)

Sharon,

I'm so glad to see the link above to Henry

http://www.hosppract.com/issues/2000/07/brook.htm

on chronic pain I sent you way back has been of some benefit, and you are referring it to other people.

These are a couple more I had mentioned before which may be a bit easier to understand.

http://www.helpforpain.com/articles/understand-neuropathic-pain/understanding.htm

This one had nice annimation

http://www.bayareapainmedical.com/

Donna

Re: Sharon - chronic pain links

Sharon W on 6/16/02 at 17:51 (087749)

Donna,

Yes, sorry I didn't mention that link came from you -- I found it VERY interesting, in fact when I was at my doctor's office recently I had brought along a battered and scribbled-on printout with to read over once again. It happened that she had a young medical student there that she 'mentors', and I asked her to give it to him. She told me after (when I asked) that she had, but that she had read it first, and put together some questions to 'quiz' him with. So I guess that is ONE FEWER young doctor who will be going out into the working world without knowing much of anything about chronic pain!

Thanks for the new links -- I haven't really had time to go over them yet, but I will.

-- Sharon

Re: Sharon - chronic pain links

Donna SL on 6/16/02 at 20:57 (087756)

Hi Sharon,

Chronic pain, and pain mgt is so poorly understood, and so many people have, and still are being undertreated by their physians for pain, a law was recently passed I know at least in CA that doctors have to attend seminars on pain mgt to keep their license here. I think someone mentioned maybe Brian that this is a national thing. I only know about CA.

A good example of ignorance is the problems you experiences yourself. I recall you had a lot of trouble getting meds in the beginning, and your pod withholding the neurontin initially which wouldn't have affected your NCV test anyway. Your reg physians should have known that was nonsense, or picked up a book, done some research, or made a phone call for info, so you wouldn't have had to suffer for one minute. Also, you shouldn't have had to feel intimated to ask for the narcotic pain killer (ultram?) before the trip.

It just upsets me so much when I hear doctors not prescribing pain meds in a timely manner, or strong enough ones, and their ignorance on chronic pain development. Not only does the person suffer in the short run when the pain is acute, but also by not treating pain properly, the person then can develop this chronic pain situation, RSD, etc., which is a disease in itself.

Donna

Re: Donna - have you ever seen Part 2?

Sharon W on 6/16/02 at 23:01 (087765)

Here is the SECOND part of that pain link you sent me way back when -- I looked it up. Not as interesting as the first, at least not to me; it is mostly about medications and dosages, etc.

http://www.hosppract.com/issues/2000/09/brook.htm

-- Sharon

Re: PS

Sharon W on 6/16/02 at 23:24 (087766)

Donna,

At the hospital where I worked, I ATTENDED a pain seminar. It lasted all day. There were quite a number of doctors there, and the seminar was not offered to the general public. But those giving the seminar did NOT present much information about chronic pain vs. acute pain, it focused on which drugs to prescribe for what level of pain, which drugs are safer, etc. At no time was the mechanism by which acute ('normal') pain gradually becomes chronic explained during that seminar.

-- Sharon

Re: Sharon - have you ever seen Part 2?

Donna SL on 6/17/02 at 01:02 (087767)

Sharon,

I still have that link, and had looked at real fast today, but as you said it's not as interesting, so I decided not to send it again. I think it's more of research type of article.

The seminar that you mentioned in your next post sounded more like just a acute pain seminar as you suggested. Usually a totally different approach is needed to treat chronic pain. Doctors need to know a lot of this pain is neuropathic in origin, and is in the process, or already has become centralized.

How many times have you heard people say I had PF in one foot, and now the other is hurting, and they blame it on one foot over compensating for the other, etc. This may not always be the case. What may be happening is the pain receptors are increasing, getting larger, and faster, and spreading. Also the longer you have pf, or other injuries, and the pain is left untreated the harder it is to get rid of. Again this is usually due to centralization of pain, and instead of more surgeries, treatments, etc. on the feet, the condition should be treated from a neuropathic perspective with nerve medications, etc.

It's much more complicated to treat pain once it reaches a centralized level. A more through understanding of the nervous system is required to treat this, plus a more intensive knowledge of psychopharmacology (sp?). Doctors need to know that they must refer their patients to pain mgt specialist as part of the total treatment package just like they would for any other problem if they are not equipped with this knowledge. The sooner they do this in the course of treating the ailment, injury, etc., the better

Donna

Re: Donna - the seminar

Sharon W on 6/17/02 at 02:10 (087768)

Actually, the seminar DID talk about chronic pain, saying that different drugs were needed to treat it -- they even mentioned methadone! And they emphasized that chronic pain needs to be treated more aggressively -- they just didn't say WHY! They focused heavily on cancer patients who are losing the fight, and on other chronic terminal conditions -- the kinds of things one needs to know about for good hospice care. But I don't remember a SINGLE reference to ANY kind of neuropathy... or to nerve compression disorders, or chronic back pain, or anything like that.

-- Sharon

Re: medications for chronic pain

Ed Davis, DPM on 6/26/02 at 16:20 (088521)

Donna:
CA is certainly moving in the right direction concerning education of doctors in the are of pain management. It has often been the hand of regulatory agencies that have led doctors to be concerned about 'overprescribing' pain medication. I know a number of doctors who acted in the interest of their patients but were sanctioned by licensing boards for 'overprescribing.' This is an area in which doctors, insurers and regulatory agencies need to reach some common ground on.
Ed