Crazy pain in arm since a/v surgery

[hillary]

Ok, so I had the a/v surgery and it didn't work...chemo veins, etc. but the thing is, I had it done two months ago, and I can barely use my arm.  I cant lift it up, like when washing or towel drying my hair, I can't even hold a freaking carrot in the hand while I peel it with my good hand. I am sick of the surgeon who just keeps saying, "well its not supposed to hurt' .  Is this normal, or common?  It's very upsetting.

[Sue]

hi Hillary well it doesn't sound normal to me! I had av fistula surgery last year and had little pain. Mine is lower arm, i had some numbness in my hand which disappeared within 3 months or so. It must be so frustrating for you, especially as your Dr is not doing anything! Have you been for a scan?

[jbeany]

It's nerve damage.  Your surgeon is an idiot for not having explained that risk, and for not recognizing it when it occurred.

I had the same thing with my first graft surgery.  The surgeon opened the skin by my wrist to see if there was viable option to use there.  There wasn't, but in doing so, he cut through a nerve.  I was in excruciating pain, couldn't stand to be touched any where near the incision, and could barely move my arm for months because of the pain.  I didn't regain full use of my thumb for almost a year.  It's been about 8 years now, and there's still an oddly numb spot at the base of my thumb, but I don't notice it unless someone grabs my hand too hard.  I'm apparently prone it - every surgery I've had has left me with nerve damage of some kind.  (My transplant damaged the nerves that control the muscles in my right side and thigh so badly I had to relearn to walk.)

The bad news is, there's nothing the idiot can do to make it better.  The good news is, it's probably going to get better on its own.

Mild heat applied regularly helped my arm.  I used a plug-in heating pad, and one of those microwavable rice bags constantly.  Flex and move whatever you can as much as you can.  The more exercise and stretching you can stand, the faster the nerves seem to heal - at least for me.  Demand good pain pills, too.  Just because there isn't a visible cause doesn't mean you aren't hurting!

[geoffcamp]

I've had the same issue and was told also it was nerve damage. However mine only lasted a few weeks then seemed to get better. I used a squeeze ball to strengthen the access before it went bad and continued to use to get mobility back into my fingers and hand. It worked and I only have a tingling sensation once and a while if I sleep on that right side just the wrong way!!  But now I'm experiencing significant constant pain in right shoulder front and back, elbow, hand and fingers. I can use and grip well but I'm ALAWAYS in pain!!  I use ice that helps only for the time it's on my body but still trying to figure out how to stop the pain. MRIs this week to get another look!!  So maybe try one of those stress balls to get back strength and sensation but keep in mind it may be a long term issue for you also. Good luck I hope you get back your ability to really use the hand and wrists. G.

[chook]

G'day Hilary. Yep, like the others have already said, same here. I had an issue with my first fistula not working so it was tied off and a second one in my upper arm created. The tied off one then ached unceasingly so the surgeon had another shot at it and that helped with the pain. Very occasionlly I get nerve pain related to either it or my current fistula, which is huge and not in use. Sorry to say it does seem the norm.

[hillary]

I am going to meet another surgeon next week and see where to go from here.  Saw my neph. last night and I am now at 10.  % kidney function.  He put me on reneval and massive doses of sodium bicarb.  If I don't get a working fistula or graph soon, he said they will have to go into my chest. I am really scared and upset.

[Cordelia]

I had nerve pain in my shoulder and arm after my neckline was put in. My neurologist diagnosed it as 'brachial neuritis"

[geoffcamp]

I had nerve pain in my shoulder and arm after my neckline was put in. My neurologist diagnosed it as 'brachial neuritis"

Hmmmm. I'll have to ask about this. For the last 3 plus years I've had a cath in to dialyze. So what did they do for you?  And relief from the pain yet??  I've had my cath moved from one side to the other side more than a few times. I will ask about this.

[Angiepkd]

Hillary, I feel so bad for you! I have the same experience. My first fistula in my wrist didn't mature so it was tied off and a new one was made in my upper arm. I have had pain and tingling/numbness in the wrist site since the surgery. My surgeon says the same thing - it shouldn't hurt.  The upper arm fistula is doing great, but I also feel like I have no strength in my arm. Lots of aching shoulder pain and my hand goes to sleep a lot. It seems to be getting better as time passes. Hope everything works out for you!

[chook]

  to you, Hilary. How I wish I could somehow send you a dose of reassurance. I know the feelings you're feeling - as no doubt lots of us do. Don't let them overpower you too much or let what may be your last months pre-D be spent worrying about what D will be like and how you will handle it. What will be, will be. By all means go into it all informed but try not to let it all take over. Easier said than done. Sending you strength!

[duncan reamhiar]

had my fistula done in June 2013... still ave pan in my upper arm.. have trouble picking up anything over sayyy 10 lbs... and it aches a good portion of the time.. heat usually helps me..