10 replies to this topic

[stubby]

My wife was reading a medical website today and noticed a piece about the company Neuros Medical. They have made a neurostimulator specifically for amputees who suffer from nerve pain.
http://neurosmedical.com/
I tried to contact them to ask when it would be available, but didn't reach anyone. Anyways, thought maybe someone else would like to know about it.

Stubby

[Neal]

I read that article and thought of you.

How is your phantom pain level? Did the treatment do any lasting good?

[snuba]

My wife was reading a medical website today and noticed a piece about the company Neuros Medical. They have made a neurostimulator specifically for amputees who suffer from nerve pain.
http://neurosmedical.com/
I tried to contact them to ask when it would be available, but didn't reach anyone. Anyways, thought maybe someone else would like to know about it.

Stubby

Very interested, keep me informed, and I will follow up myself..

[Higgy]

Maybe this falls in those catagories somewhere? Didn't know if it would interest you or not..It comes from the American Pain Foundation

http://www.painfound.../speak-out.html

The Safe Use of Implantable Pain Therapies: Dialogue between a Health Care Provider
and a Person with Pain
Thursday, April 21, 8:00 p.m. Eastern time
Please join us on Thursday, April 21, 2011, at 8:00 p.m. Eastern time for a one-hour live webinar featuring special guest speakers Dr. Lynn R. Webster and Mary Vargas, Esq. The speakers will engage in an interactive dialogue about the different types of implantable pain therapies used in the treatment of pain. They will focus on identifying the risks associated with the therapies and steps the person with pain can take to minimize the risks to ensure safe therapy.

© 2011 American Pain Foundation
201 North Charles Street, Suite 710, Baltimore, Maryland 21201-4111
A 501©3 nonprofit organization.
Please contact the Webmaster with questions or comments about this site.

[stubby]

Hello. I am doing alright, but that is just about it. The Calmare Therapy worked for about 3 weeks, but my new job was making me walk so much, it negated everything. I was having to walk 2-3 miles per day to "find" work. Obviously, that was not part of the deal when I accepted the job. I had to quit because I was in so much pain and they would not work with me. I have been out of work since, which is a horrible thing and I have to walk with a cane (uggh).
I have gone in for "booster" treatments of Calmare, but it doesn't hold for more than a day. My ortho thinks that maybe my neuroma removal has caused the other nerves to over compensate and become extra sensitive. We are not sure of the route to take yet.
My ortho is debating on if it would be helpful to do another surgery and remove the cutaneous nerve about mid-thigh. Also, we are looking at a spinal cord stimulator as an option. We opted to do a nerve block last Thursday in the hopes that would give me some relief and allow us to figure out which option is best. Unfortunately, the nerve block has, of yet, done absolutely nothing.
Hopefully some of you have found something that works for you. If you have, please share. My wife and I are looking for every option out there that is not medicine. I am so sick of pain medication and the way it makes me feel. I hope that you all are having better luck than I am right now.
If any of you have done the SCS route, I would very much like to know. Thanks
-Stubby

[Neal]

I'm sorry Stubby. I was hoping that therapy would work for you. I'm thankful that I don't have much pain.

[bearlover]

How long does recovery take, from removal of a exposed nerve? I can't stand not being able to wear my leg..

[stubby]

Sorry I haven't been on this forum for awhile. I did get surgery to remove the nerve next to my knee. We were told by my surgeon that it was just going to be a small cut and that I would be up and on my leg in no time. However, during the surgery my surgeon decided to do more digging than he normally would. He really doesn't want me to come back again, which is just fine by me. Well, he found a pretty good-sized bursitis and removed it. He also just took out any nerves in the surrounding vicinity. All in all, I ended up with a 3 inch incision just to the side of my knee where the socket is going to rub all nice. I am glad to get all that bad stuff out though. So, as the story goes on, my body decided to hate me more and didn't dissolve the underlying stitches. So, I had a massive infection burst out of the partially healed incision about two weeks post op. My wife actually pulled about 5 stitches out of it. More antibiotics and pain killers, still no leg.
I am now happy to report that I do have a leg!! I had to get a new test socket made because my leg is still quite swollen and has a bit of a funny shape in that area. My wife has been trying to massage the incision area every night now that the infection is gone. It feels so incredibly good, which makes me truly happy. I haven't been able to stand anyone rubbing my stump for a few years now.
All in all, I am doing very very well! I have my leg on, it feels really good. I am completely off the fast-acting pain killers and am about to go down on the long lasting ones. I truly hope to be completely pill free within the next while.
To give you a timeline bearlover, it has taken me about 8 weeks, but I had an infection and swelling. If you are just getting a neuroma removed, you should only need to be off your leg 2-3 weeks. I hate crutches, but I have been on them a long time now. I am happy to be on my leg and without pain, at least not much. And, I am happy to say, the twitches and phantom pain is mostly gone.
The thing that narrowed it down to being a nasty nerve was a local nerve block done right at the site. That killed the pain for a day, so we were pretty sure that was the issue. I would not recommend Calmare Therapy to amputees however, which is sad for me to say considering the money we spent on it. My wife and I believe that it is a good therapy if all you have is phantom pain. However, that is really hard to tell and this therapy costs a lot.
We decided not to do an implant, which is what started this thread in the first place. Just seemed to risky, being next to the spinal cord and all. My doctors agreed and that is why we went for the surgery.

Have a good night.
Stubby

[cherylm]

Sounds like a lengthy challenge there, Stubby...but I'm glad it seems to be working out for you now! I've suddenly found myself dealing with my own pain issues, so I was glad to hear about what finally allowed them to determine the cause of your pain...if mine continues to be a "mystery" I'll suggest trying a local nerve block to try and narrow it down myself.

Here's hoping for a long, pain-free future for you!

[ann]

I was really interested in your posting Stubby, and really pleased to hear that you are well on your way to getting things sorted out and no longer in pain.

It has long been in my own thoughts that people are sometimes getting fobbed off with being told that any pain they have is 'phantom pain', with sometimes very little investigation and given increasing levels of pain meds to try and deal with it. Not saying there is no such thing as phantom pain, as I know especially in the early days after surgery the pain is very real, but this is then I imagine originating from the residual limb and the nerves which were obviously damaged by being cut or whatever, in the surgery, but longer term there may also be real physical reasons, like you describe.

Having been an amputee for a pretty long time now, have been relatively lucky and usually any real pain I have, other than occasional zingers & zappers, generally has a reason. When I first became an amputee no one ever mentioned phantom pain to me, but somewhere along the way I realized that there were everyday phantom sensations and very definite, what I called, nerve pain (with the latter being what I imagine people usually refer to as phantom pain) And that the nerve pain definitely originated from the stump and would set off more uncomfortable sensations, and for me usually set off by an injury or ill fitting prostheses. For about thirty years I really didn't get any real problems then an infection and series of bad fitting prostheses seemed to set the ball rolling, never was given any investigations, just suggestions of hypersensitivity and psychological problems, looking back from what I have learned since, it all seems a very backward way of being treated and not something I'd like to experience again but something I have learned from.

Like you Stubby, I eventually ended up having surgery, mine was a complete revision but did help with a lot of the problems I was having and allowed me to get a prosthesis fitted that I could actually walk in, so was very positive, but in the process learned quite a lot about my stumps and also that there are many things that can be done to help, and like you've found yourself, real 'physical' reasons why we sometimes experience nerve pain. As a result, nowadays I have become much more proactive in my treatment, before I didn't know that neuroma's or spurs existed, let alone that I had them, but know now that they can be treated and will push for that if necessary. As you might have read in another thread, I have recently had a few problems, fortunately this time I did get investigations and it was also explained to me that as well as possible problems in the leg, stump pain can also be caused by problems in the spine, though fortunately I didn't have this problem.

I wish you well with your recovery, I have been following your threads with the therapies, and am really glad you have managed to resolve things, take care and don't rush the healing.

Ann

[Neal]

It is good news that you finally have some relief. I can't imagine how hard it must have been to go through each day knowing that you would experience that amount of pain. I get grumpy when I have the slightest pain in Stumpy. I was in a hurry yesterday morning and must have rolled my liner on wrong. I am still paying for it. It isn't that bad, just discomfort on the fibula head. It causes me to have a hitch in my get along.

I know all too well how bad it is to have to use crutches after years of walking with a prosthesis. There were days when that walking was with a great deal of pain, but I was walking. I had surgery last fall to remove scar tissue that was caused by repeated infected hair follicles. I was on crutches or wheelchair for 8 weeks. I luckily had all my old sockets. I had to go back to the biggest I had and start the shrinking process. I went through all 6 sockets in 10 days. That was really hard to keep up with. I had to carry around a suitcase of socks just to keep somewhat comfortable. The surgery though was the best thing I could have done. I haven't had an infection since last Sept. That last one was one of the worst. I won't forget that pain for quite some time.

Glad you reported back. We worry about what happens to you guys.

Keep in touch.


Neal