Help-Phantom nerve pain - Chronic Nerve Pain

[Abby]

Hello,

I am hoping someone on this network will be able to help my husband or at least direct me to someone who may be able to help. My husband was in a snowmobile accident and suffered a severe brachial plexus injury. We just returned from Mayo in Minnesota and the brachial plexus doctors there said that he was one of the only two patients that they had ever worked on who had no options to restore any type of feeling or motion in his shoulder or left arm. His spinal roots are avulsed, spinal accessory nerve, phrenic nerve, and even his intercostals were not working. His clavicle and shoulder blade have been reconstructed as well as his main artery to his left arm. Just wanted to give you a quick baseline so you know the type of injury I am talking about.

My husband's biggest problem has been severe chronic nerve pain in what we call his phantom left arm. He feels like his arm is actually in a different place than it truly is and feels like it is burning in boiling water. He has it from when he wakes up in the morning until he goes to bed at night at a baseline of about a 3-5 on a 1-10 scale. However he also has these waves of nerve pain that increase in frequency as he goes about the day which are about a 7-8 on the pain scale. He was injured about 6 months ago and so far there has been nothing that has given him much relief as far as he can tell. He has tried Neurontin(Gabapentin), Topamax, Lyrica, Cymbalta, Mexiletine, Cyclobenzapr, and many different kind of oral narcotics as well as patches. Does anyone have any suggestions of a medicine or combination of medicines that helped them with phantom nerve pain? We are open to any suggestions...massage, biofeedback, acupuncture. Even if you do not have a suggestion on how to ease this chronic phantom nerve pain, is there anyone out there that may have a similar injury who would be willing to post a note and tell him anything hopeful?

Also one more non-nerve pain issue, right now the doctors are thinking the best option for his left arm is amputation. Does anyone have a strong feeling one way or the other about where to do it-the doctors have give us three options-at the shoulder, between the elbow and shoulder, between the elbow and shoulder with a shoulder fusion(least recommended option).

Thanks to all of you for reading this and giving my husband any help you can.

[Dude]

You hopefully will receive a wide variety of opinions and advice. Research everything. I'm 13 years into this nightmare. Nothing has helped for more than a couple of days (Oxycontin and Lyrica for a few days before the pain quickly burned through them). I have done all of the pills, patches, attachments, massages, oils, and acupunctures (new word, but in keeping with the list) known to man, with much of the research done by my wonderful, ever-searching wife. I haven't tried biofeedback, but will be if my upcoming surgery fails.

I'm getting ready to have the DREZ surgery performed at the end of the month. This is given me the best percentage of chance to tame this wild beast that has taken residence in my body. The DREZ procedure is a very drastic measure, with a very specific group of people that it has demonstrated good outcomes, but it is one I wish I had heard about a long time age. If you are going to research this procedure, look over the research papers online as well as testimonials.

I wish you both the best.

Mark

[Abby]

Mark,

Thank you for your reply. I wish you the very best also. I hate to hear that you have lived with this kind of pain so many years. I hope this procedure gives you the relief that both you and my husband are so desperately seeking!

Abby

[Its1105]

Sorry to hear about your husbands pain. It does sound like his injury is much worse than mine. I had a C5-C6 cord cut during a surgery resulting in my injury. It has also been 6 months for me as well.

I have intense pain that has not gone away either. I have tried some medications but nothing has seemed to help. My occupational therapy has had to stop due to the pain levels as well.

My doctor continues to tell me that it really just takes time...and even with that - he said 50% of his patients continue to have pain for a long time and 50% will get better but still have some. So I have not really heard to much info on anything that really works. I had a pain management doctor point blank tell me that if it is nerve pain there is really nothing they can do to help.

I know this isn't encouraging.. but I just wanted to be honest about my experiences with what my docs have told me.

As far as amputation goes, my injury is not that severe and I am expected to recover to an extent that I do not need that, so I am not too sure about all of that. I have heard that even with amputation though, you still will experience phantom pains and it does not get rid of that ... just the dead weight of the arm pulling on the muscle and nerves.

[Dan]

Hi Abby,

Here is a thread from a site in Europe that had a few people discussing amputation: http://adultswithbrachialplexusinjuries ... tml?page=2

I thought there was a thread started here that discussed this, you might want to look back over the past year.

I have had my injury over 23 years and the pain has been fairly constant the entire time, it does fluctuate daily/weekly but never strong enough for me to take drugs. I avulsed all five nerves but did have the intercostal graph to the bicep.

I do know a common comment is the more active you can make yourself and keep your mind active on other things, the better it seems to be. I know for me I don't experience the pain at all when I am working out or doing some sport. I always tell people when talking about my arm and discussing pain and they ask me "do you feel pain right now" and I always say, now that I am thinking about it, yes.

I will also say and you will hear many times, everybody is different and everybody experiences this injury in a unique way. So my way of distracting or keeping the mind focused on other things might work for me, or I might just be lucky and my pain levels just are not as bad as others.

A comment on the amputation, I do know for me that if I didn't get any movement out of the bicep and I had zero use, I would have amputated mine within a year of the accident. The only reason I didn't was my surgery was five months after the accident and the Dr said I shouldn't expect to get any movement for about a year after the surgery. Right about a year post surgery, I was thinking about amputating it because it was just a huge pain in my butt and always in the way. About the same time, I started getting some movement and the benefit of using the bicep is enough to keep it.

All the best ,
Dan

[mnr0001]

I have found that when I just have the 3-5 burning type pain you mentioned, that I can take a Darvacet and rub red Tiger Balm all over my arm, and it eases the pain. The sharp shooting pain that comes sometimes... I've found no solution. I have tried acupuncture and it seemed to help some, again just with the burning sensations, not the "lightning strikes"

[Abby]

I am very grateful for each of your replies. Any information and sugestions that we can read are so very appreciated!

[ptrefam]

Hi Abby,
I don't have any knowledge about the pain. My son (22)is the injured one and fortunate not to have pain which seems to be standard with this injury. I just wanted to welcome you to the boards. We are from Neenah.
You may want to try searching amputation in the boards. I know there has been discussion about that before. Some pro, some con, some who have already have it done. I think one thing I noticed though was that many still had phantom pain even after the amputation.
Sue

[MW]

Hi Abby,

I'm 5 months out on a BP injury from being hit by a vehicle. I have similar nerve pain too, where is starts around a 4-5 and then shoots up to an 8. 2 meds that I've found that help me (that are not on your list) are amitripyline and tramadol/Ultram. Both can make you tired, so I initially took them at night.

Mike

[smokinex]

Hi Abby,

it will be to 2 years in October since my accident, and right from the start I have tried all the drugs you have mentioned,{ Neurontin(Gabapentin), Topamax, Lyrica, Cymbalta } and they didn't even ease the pain a bit. Then they tried OxyContin and Percocet, which totally killed all pain for the first few months, and then it started to come back. Before I knew it I was taking 3 OxyContin 80 mgs a day, plus over 200 Percocet a month for breakthrough, and I was still in pain. (i also take amitriptilyne an topirmate)

My next visit to the pain clinic I told him I wanted to get off all the narcotics, he started me on 5mg of METADOL {Methadone}. I take three, 5MG tablets, three times a day, 150MG of amitriptyline (50MG in the morning, 100MG at bed) and 75MG of Topirmate, (25MG in the morning, 50mg at bed)
I have been doing this for two months now, and it is working for me, I find I am in less pain now then I was on the oxy's, and I actually feel normal ( I was always going through mood swings cranky depressed etc. ) Don't get me wrong, there is still some pain, i find the night time before bed is the only time i have any real pain now. im always using hotpacks but its better then taking the oxys againg! Good Luck

Craig