United Brachial Plexus Network, Inc. • Unfortunately, new to this site:0(
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Unfortunately, new to this site:0(

Posted: Mon Aug 30, 2010 7:24 pm
by teri lowe
My husband had a lumbar fusion on July 13, 2010. His surgery lasted 11 hours, and he was facedown during the whole 11 hours. When he got out of surgery and was extubated, he found he could not move his right arm. He is right handed. He has been told he has "brachial plexus palsy". He has regained some use of his shoulder but still has no use of his arm. With the estimate of 1 inch per month, we are looking at at least 1 year before he even may get feeling or movement back. He is of course very upset and depressed. This is a man who has worked with his hands all his life. Nothing was really done, and no attention was given (even though I addressed with each person, doctor, nurse, therapist that came in). He now has continuous burning, aching pain in his right arm and we have found out as the, website states, that painkillers do not help. He is in occupational therapy and has tried Lyrica, but does not work. We feel really alone, and that no one cares. It was nice to find this website and know there are others out there. Thanks for reading, and having this site.

Re: Unfortunately, new to this site:0(

Posted: Mon Aug 30, 2010 10:06 pm
by AngelaW
Hello, so sorry that your husband is in pain. Painkillers don't necessarily not work......different drugs work differently for every person. Lyrica did nothing for me but neurontin (gabapentin) worked a bit for me. Sometimes it's just a matter of trying different drugs until one works. Just make sure they're drugs for treating nerve pain. Regular painkilleers like oxycodone won't help much. For me I found the worst of the pain to be in the first 2-3 months and by then iot had faded to a bearable "buzzing" feeling.
I think the thing here you will hear the most will be to make sure to see a doctor who specializes in brachial plexus injuries in order to get the right treatment as most doctors don't seem to have a clue. I can recommend the brachial plexus clinic at the Mayo Clinic in rochester, mn. They are professional, knowledgsble, and kind. I know there are a few other doctors in the US but I don't know them. It's important to get a test done called an EMG to doscover the extent of the nerve damage so they know if it is either better to "wait and see", or if a surgical intervention can help. The main surgery is a nerve transfer but there is a 6 month window from the time of injury to get the best surgical results so it is very important to see a brachial plexus specialist asap.
I am curious too if the injury to your husband's b.p. nerve was from the actual surgery, or from the position he was lying in for 11 hours? I ask this because I sustained nerve damage in my foot from lying on my side for 8 hours during surgery and in that case it took about 3 months for the worst of the pain and weakness to subside........but it did improve and become useable again. :)
I hope this help a little. If you have any questions feel free to ask.

Ang :)

Re: Unfortunately, new to this site:0(

Posted: Tue Aug 31, 2010 10:23 pm
by teri lowe
Hi Angela:

Nope, it was from positioning. It is depressing to think that it will be months....I know my husband is very depressed about it. He has kind of accepted the loss of the limb (hopefully not permanently) but the constant burning and buzzing pain of his arm is what he is having the worst problem with. It is kind of refreshing to know that maybe it will start calming down in a month or two. He had a lumbar fusion (lower back) and they were no where near his brachial plexus.
Thanks for the reassuring words. It is good to know that there are others out there with the same problem. Have you heard anything about the Mayo Clinic in Phoenix?? We live in Las Vegas, and it would be a trek to Minnesota, but if need be......thanks again:0)

Re: Unfortunately, new to this site:0(

Posted: Wed Sep 01, 2010 11:28 am
by AngelaW
The Brachial Plexus clinic and the three specialists are in Minnesota, though all three Mayo Clinics are connected and they communicate quite closely with each other. Maybe it's it"s possible that you could have the test done in Arizona and have a communuication set up with Minnesota to find out if it's necessary to travel, though if you go to the MN one you will NOT regret it. :)
That said, I really think you should see a bp specialist because you would find out what exactly is damaged, and what your recovery options are. The most permanant damage and pain is when the roots of the nerve are avulsed (pulled out) from the spine or like my case, trapped in scar tissue. Since your husband's nerve damage is from positioning (probabaly pinched off the nerve?), then I think he may have a much better chance of regaining function and loosing the pain like what happened with my foot......but you need to see a specialist and get that EMG to find out. Also, they may have better options on hoiw to treat the paun :)

Re: Unfortunately, new to this site:0(

Posted: Wed Sep 08, 2010 7:25 am
by hilltopfwb
I just read your situation (haven't been on the site in a little while). 1st, I want to say that I am truly sorry! It is awful to go into surgery with one problem and have a worse problem when you are through. I understand the depression, I fought it for a while myself after my accident. I found that (Neurotin) Gabapentin is the only thing which really "calms down" the pain.

I strongly suggest getting your husband to Minnesota and the Mayo Clinic. The team there is nothing short of awesome and you will find the best help in the country right there. I did find a very good BPI doctor here closer to home to do my nerve transfers, but I still have gone to the Mayo Clinic to discuss the possibility of a tendon transfer to help my TBPI. If you are within the 6 months of your injury, its imperative that you get on the stick to get him there. The Clinic will help you in every way after you make the call.

Again, so sorry he is going through this. Tell him to keep his head up, there is lift after BPI.

Re: Unfortunately, new to this site:0(

Posted: Thu Sep 09, 2010 1:27 pm
by Sherrise
Time is indeed of the essence. Don't hesitate to get him the best help possible, and meanwhile find a place where you can get an EMG of his arm, someplace where they TRULY know what they are doing to detect the extent of the damage. Perhaps if you begin to communicate with MAYO, they can suggest a place to get such a study done closer to your home while you await treatment options. They will have to know the results of that at any rate before they would begin treatment.
My prayers are with you. I know the day to day trauma of living with a person in excruciating pain. It's a very hard path. Keep us posted.
Sherrise

Re: Unfortunately, new to this site:0(

Posted: Sun Sep 12, 2010 3:45 pm
by teri lowe
Dear Sherrie and other posters:

Thank you so much for your kind words and support. We will be 2 months out Sept 13th. I guess the biggest and most disappointing part of this is having people who don't know what to do. His spine surgeon doesn't have a clue, the neurologist we are seeing is a joke (been fighting with them for 3 weeks now for EMG studies) and got no response from day one from any of the physicians that have been on his case since day one. I think I will call the Mayo clinic. If it takes the rest of the money that we have, I will get someone who knows what the hell they are doing to look at him. He is getting OT and now PT (for the lumbar fusion), which is good. The only thing we have not found is relief for his constant pain in his arm. We have tried just about everything (lyrica, gabapentin, narcotics, now cymbalta). Just keep trying I guess.

Re: Unfortunately, new to this site:0(

Posted: Mon Sep 13, 2010 10:12 am
by jmar
this may sound crazy. but i have found that when i am in severe pain, i do excercises on top of excercises. it is very hard and excruciating to do, but if he could stick it out for just 5 minutes it will relieve the pain. not totally, but it does help.

Re: Unfortunately, new to this site:0(

Posted: Mon Sep 13, 2010 4:37 pm
by Christopher
jmar wrote:this may sound crazy. but i have found that when i am in severe pain, i do excercises on top of excercises. it is very hard and excruciating to do, but if he could stick it out for just 5 minutes it will relieve the pain. not totally, but it does help.
I completely agree with jmar here.

Get the natural endorphins kicking in. Best medicine on the market... and believe me, I've tried them all!

Re: Unfortunately, new to this site:0(

Posted: Tue Sep 14, 2010 12:38 pm
by RobertRacer
Agreed on both the exercises and seeking out a BPI specialist. The Lyrica however did help me but I didn't start taking it til 2yrs after. The first 6-10 months were awful as far as nerve pain goes but it subsides.