Could use advice

[bwebb]

My husband was injured and had surgery on I believe c6c7 maybe c5. He has severe pain 24 hours a day in arms,hands,shoulders and,chest when its bad. He is on Nueroton, zanaflex, and a narcotic for pain management. It helps but pain never goes away. When he is still laying down its better than when he does things. It's been a year and seems worse. We lost our insurance when he lost his job. He is going to the VA hospital in March to see the nuerologist. We moved here to Mich from Co because the altitude seemed to cause even more sensitivity on his arms. Any advice would be greatly appreciated.

[cbe411]

hI Bev, I live in MI also! Where are you guys? I am just outside of Detroit. I HATE the winter! The cold drives met nuts!! I would like to move further south! haha Heat really helps! So does staying busy, even if just mentally... keepig your mind off the pain is one of the best meds! I have had my injury almost 5 yeras and have been med free for the past 4.5 years! The pain is BAD some days but anything that helped me made me a zombie! I am in grad school and I need to be able to concenrtrate! Welcome here... and ask away!!

Courtney

[EllenB]

Hi Bev,

Here are our experiences w/pain mgmt. For starters, my son John couldn't tolerate the codones so the best he ended up with was daily dosages of 3600 Neurontin, 200 Topomax & 100 Amitriptyline. The good news is that by the 2nd year after his nerve transfer surgeries, he was completely off all the pain meds. It was SO good to finally have him "back" - he was kind of zombied out those couple years. If your husband isn't currently seeing a pain specialist, I highly recommend it. There's a lot of trial & error in finding the right recipe, since it seems people respond differently to the different meds - so the more experienced person you find, the better the chance of finding something relatively quickly that will help. I think seeing John in pain was the worst part of this whole ordeal - down on his knees & yelling from it - this from a very quiet 15 year old who would do anything to avoid attention. I know how hard it is for you to watch a loved one in pain.

Take care, keep asking questions - and know you're not alone.

Ellen

[admin]

What is nerve transfer surgery? Thank You for your response. It seems so awful that even children must suffer with this. I'm glad your son is better than before. I would love if my husband could get back part of his life.

[admin]

We are in the Grand Rapids area. Your right the cold is making it worse but last summer the humidity seemed to help. He has found using a heatable neck pillow helps when things get really bad. Thank You for responding. Right now his pain is so severe going off meds would be impossible. I pray maybe someday something can help him.

[EllenB]

Nerve transfer surgery is used when nerves have been avulsed from the spine, thus will never work. The surgeon then takes another nerve that hasn't been damaged and "reassignes" it to a new function in the injured arm.

In John's case, for instance, transferred nerves included the phrenic (normally used in breathing so he now has a partially collapsed left lung that doesn't bother him), contralateral C7 from the good arm (after about a year his good arm was back to normal strength) and intercostals (around the ribs). These nerves were moved from their original purpose to instead fire the bicep, tricep, deltoid and transferred gracilis muscle. A LOT of "stuff", to be sure, but then again John had lost all five bpi nerves so would have nothing if not this surgery.

Bottom line, John's doing great. All donor sites are fine - he still even competes in cycling - and his injured arm now has movement & functionality. And perhaps best of all, his pain levels have gone from severe to nonexistent.

Hope this helps. If not, keep asking questions.

Take care,

Ellen

[admin]

JGMFAJ Well He takes meds around 8:00 am., 2:00 p.m., and 8:00 p.m. He does fair throught the night as long as he is laying down but doesn't sleep sometimes until late. Then after med's in morning will rest again till noonish. Thanks bwebb

[jennyb]

I had the insane pain at the beginning, most of us with avulsions do. I went back to work after 3 months (it was that or starve!) and found I couldn't work drugged up, so weaned myself off the meds. Best thing I ever did, I learned coping skills I am still using now, and long term the pain gets more bearable without meds, believe it or not. Good pain clinics can help with this, long term meds are not the answer.

Jamie, I know you were in the process of weaning yourself, how did you do? Funny, your words about 'chin down when it hurts' really rang a bell, in fact, last night one of my cats fell off something and landed on my bpi arm. For about 2 milliseconds I felt nothing, then OH MY GOD it was as bad as the early days, and deffo the worst I've had in years and years. I fell to the ground yelling, tears flowing down my face, but then went into pain limitation mode like a woman in childbirth, got my breathing even, dropped my shoulders, dropped my chin onto my chest, consciously loosened all my muscles, which right down to my toes had twisted in agony. Within 20 minutes the pain had gone enough for me to go to bed. There's still an ominous buzz in my hand but I am functioning as a human being, so I feel ok :0)
Cheers Jen NZ

[admin]

Dear JGMFAJ Sorry I haven't responded sooner Computer was down while painting. My Husband has started taking med less amount more often and seems to help him considerably. His Nuerologist appt with the VA was cancelled. They say they can't help him so they are sending him to the pain clinic in Ann Arbor. Is this a good thing or bad thing?