2 years post op....burning, tingling, how much better?????

[terilowe60]

Hi everyone! My name is Teri Lowe and my husband Duane suffered a brachial plexus injury July 13, 2010. He was having a lumbar fusion and was face down on the table for 11 hours, thus stretching and injuring his brachial plexus on his right arm. He woke up with a paralyzed arm. He has been in therapy since his surgery (for his arm). He has adequate movement in his right shoulder, elbow, but his wrist is still with a loss of movement, along with his had and fingers. He is gradually getting some motion back, but he cannot move his thumb or make a fist. I know everyone is different, but I would appreciate some feedback. Just last week the doctor we are seeing at the Mayo Clinic said (after not seeing him for 7 months) said he was done with therapy and didn't need anymore. We thought that wrong and are trying to get him more therapy. I am appalled that a doctor would do this; if he doesn't get more therapy, everything will seize up. We have come too far for therapy to abruptly stop like this.

Also, does anyone still experience burning in their affected arm? My husband experiences this daily and no one can tell us why it is happening when he has no feeling in his arm? Thanks and blessings and prayers to all affected and hopes for recovery. Teri

[jmar]

did you see the brachial plexus specialists at mayo? or was it a regular neurosurgeon? i have seen a lot of posts on here that mayo has teams of doctors that specialise in BPI. i went to dr mackinnon, so i really dont have any personal experience with mayo. but from what i have read on here, there is never just one doctor treating a pbi. if this is wrong, correct me...chris, dan, whoever....

as far as therapy goes, you can do a lot at home. stretching, squeezing a ball constantly, do nerve glides, just keep it moving.

when it is very painful, dont let it be still, MOVE IT AROUND. excercise excercise excercise. that is the best pain reliever.

[johnmetalman]

I am 4 years post op and still gaining function. It takes time and effort but you do gain back alot including an amazing will to survive disasterous experiences. Stay strong

[Fred4545]

Hi Teri and Duane,

This is Jeff and I have a left arm TBPI, and I'm being treated by doctors at Mayo. Can you give me your doctor's name...the ceasing of PT sounds very strange as my dr (and others I've seen) are very impressed with the strength and progress I continually make as a result of constant exercise and PT. they also know how fast I backslide if I don't keep up with it regularly. Dr. Skinner and teams voiced great optimism about how the human body rebounds and finds other methods and means to achieve recovery and ability.

I too have the severe arm/hand/finger tingling and crushing pain that can be almost unbearable at times, but exercise and PT usually help. If you have to, go to another doctor and plead your case, but don't stop the formal PT if Duane is getting improvement and relief. Try to keep busy to keep his mind off the pain...unfortunately there isn't much more to offer on pain relief. I use Lyrica, B Complex and fish oil, PT and staying busy to help me. The night time is usually the worst for pain. Xanax helps with sleep if needed.

Other than that, use the people here for questions/concerns/ideas, and let me know if I can help.

Best wishes for a quick and comfortable recovery.

Jeff

[Master DIVER TOM]

I hate the pins and needle felling and burning
Its like my arm and hand are almost falling asleep this happen sometimes when my arm and hand are at rest I never have it when I am trying to assist my other arm in doing something. I really think its a blood flow issue when the blood flow slows throw the scar tissue or by the stretch nerve area It seems to be like the redness blood flow issue to when our arms and hand turn red. I wonder if you can have a blood flow test done ware veins get crimp by our injuries in the area that cause the pins and needle area?? Is there a type of doctor for a blood flow issue, when it fells like your limb is falling asleep??
What I do for the pins and needle felling is to do a message on the area that has this It has help me when it happens
Tom

[MW]

Hi Teri and Duane,

I've been injured for over 3 years and I still have that crushing pain that you describe. What I've learned from the people here is that the pain is different for everyone- some folks don't even need meds after a bit, while others like me are on a regimen of meds. I personally take gabapentin, trazodone, and tramadol. Things that seem to make the pain better for me - exercise (I do a lot of endurance events), getting enough sleep, keeping busy, and not skipping med doses.

One thing that the Mayo guys told me is that the pain is not coming from your hand or fingers, but rather from your spine to your brain. So I find that massaging the neck area can help if the pain is bad too. They also recommended finding a pain specialist, which I did, and as a result I've had the "opportunity" to try all sorts of med combinations, new things just coming on the market, mirror therapy, etc. If you have the means, I'd definitely recommend seeing a dedicated pain doctor that is local to you.

Best,
MW

[jmar]

i hd a stellate ganglion block and that really helped a lot. i have actually went off all pain meds for almost a year now. not to say i dont have pain now and then, but it is not bad enough for pain meds. you might try asking your pain management doc about the stellate ganglion block.

[hilltopfwb]

The first thing I would say is you would do well to make sure you meet with the brachial plexus surgeons at the Mayo Clinic. As far as the burning I do believe that you will find it does not even that you do learn how to deal with it better. If the nerves from the spinal cord are not avulsed but are just stretched, I do believe the body will recover as I understand that the pain and burning will cease. If you haven't an avulsion, I understand that there will never be a day that the hand ceases to burn or experience pain. (but I assure you that you learn to live with it better.). Life can be good for the TBPI survivor!

[s8n]

I'm 5 yr.s post op and I hate to say this for me and/or him but the dr. told me the pain never goes away. It might subside a little, but as long as you have the injury there will be pain. The way he really said it went like this Me:"Doc I wish there was something I could do for this infernal burning." Dr."There is....death." and he smiled at me. He wasn't being rude we joke like that lol. Just tell him to keep his head up and try different methods of pain relief. I myself find that smoking pot helps ALOT. Might be illegal, but for me benefits outweigh the risk. If I can go an hour or two and forget about my burning arm...it's worth it.
D~