Fistula Pain Hell?

[supporter]

Hello everyone.  If anyone can answer this question, I would be very grateful.  My wife (Moosemom) has been suffering for months with fistula pain.  It's a severe pinching sensation that seems to migrate (which makes me suspect some sort of nerve irritatrion).  Occassionally there is some burning sensation associated with the piinching as well.  She went to see the surgeon who did the fistula (who has a good reputation and actually has over 40 years experience), but his response was only to examine her fistula and confirm that it is functioning correctly.  He did not address the pain issue at all, however, but just sort of looked at her like she was nuts.

Is anyone familiar with this issue, or has anyone here experienced anything similar?  If so, has anyone found anything that helps?

Thanks everyone!

[boswife]

Well hello moosemom hubby :-) , nice to see ya ....  and, to answer your post, i have always wondered why she would have pain and 'if' that was just the norm for some. It seems so wrong and i know hubbys has never had that pain.  It seems strongly to me that 'something' (i only wish i knew What that something was) needed to be done BEFORE it needs use.  Your wife is the lovelest lady and i hate to see this going on with her and with the responce she is getting from dr...  Something needs to be fixed so mabie she needs to see someone else about it.. sounds like surgeon (good or not) doesnt want to admit that mabie it's something he needs to address as HE did it...  I wish her well, and hope someone else has a better answer..

[tyefly]

Hello and Welcome.....

 I have had my fistula for a year and a half now.... when I first had the surgery I had numbness and pain in my lower arm...as I have a upper arm fistula....  they had to cut a vein from my lower arm and hook it up to the artery....  I now have a 2 to 3 inch wide area that runs the whole length of my lower arm.....  right where the vein was cut... anyway... it was pain full and numb.....  and  It still is... I have gone to the surgeon  who yes has many years of experience and has done many  many of these.... This is what is does for a living...but he told me that often nerve damage does occur...  often times it a compression injury from the clams used during the surgery....  I was told my him and others that some times there are some consequences  but that my fistula is working properly and that is the important part......   I agree   as it help keep me alive while on Dialysis.....  I still have no feeling in the area decribed above  but the pain has demished alot.... still feels funny and I bet it always will.....  I hope it gets better.....  Hard to put up with the side effects... but then there are many.... many risk to all of this..... 

[Zog]

The fistula is probably pressing against a nerve.  If the fistula is near the wrist it could be like carpal tunnel syndrome.  If it is in the upper arm, it could be an ulnar nerve problem.  http://orthoinfo.aaos.org/topic.cfm?topic=a00069

[Bruno]

I have some pain from time to time, more so as the fistula has developed. Mine does not sound as bad as your wife's so I'd be asking if something's wrong. There's absolutely no doubt there is some nerve damage involved in a fistula, steal thumb and numbness, for example. On the other hand my thumb is now a lot better, but the numbness is still there.
My fistula is on my wrist.

[jbeany]

I had nerve damage with my first one.  The surgery was actually two attempts in one - they sliced open my wrist to look at the veins there, decided against it, and moved to my forearm.  Opening the wrist sliced through a nerve.  I was in excruciating pain for months, and couldn't stand to have my wrist touched.  I couldn't even lift my arm over my head.  (I ended up chopping all my long hair off, since I couldn't manage it one handed.)  It did get better for me, although it took several years to fade to the point where I don't feel it or think about it.  I can finally stand to wear a watch again.  Even now though, if I get a nurse who wants to clamp down on that wrist for a pulse, I yelp and yank it away, since it feels like someone just sliced me from my wrist down to my thumb.

All I got for relief was large dose pain killers so I could get some sleep.  My surgeon had explained about the possibility of nerve damage, and he understood what I was telling him.  (Being believed goes a long way to making you feel better, even if they can't stop the pain.)  Unfortunately, there's no quick cure.  Hope MM's fades as well, and soon!

[Zog]

My wife had her first fistula ligated and the surgeon damaged a nerve that went to her thumb.  It grew back in several months where she could feel the side of her thumb again.  If this pain has started long after the fistula surgery, I would think it is from the fistula growing and putting pressure on a nerve.   

[MooseMom]

My husband very kindly jumped in to ask this question, probably because he's tired of me whingeing about it!

It's not nerve pain.  I had that after surgery...that pain felt like lightning.  I knew that was normal and that it would gradually disappear, and it did.

This feels like what you might imagine it would feel like if your veins were growing to accomodate a massive increase in blood flow.  It is an ache, a pulsing, pinching ache that is worse at night.  I haven't even used the fistula yet.  I can feel my pulse in several places in my upper arm right now as I am typing.  Sometimes it feel like my skin is being stretched in places.

I have an appt with my neph (oh, the dread) on Thursday, and of course I will ask about it, but I was just wondering if anyone else had had this type of sensation.  I have searched through a lot of threads and I have not come across any from anyone who has described something like what I am experiencing.  I dread thinking about having to have some sort of surgical intervention before I even use it, but maybe my fistula is just marvellous for all I know.

[Lucinda]

I had exactly the same thing moosemum and it was when I wasn't using my graft at all.  I use to cramp up in that arm and just have a sort of throbbing pain around the graft area.  They did a revision - which was not nearly as painful as the first operation - and the pain went.  When I asked them what they did, they said nothing specific but whatever they did stopped all the problem with the graft.  Never had any pain with it again.  They said that sometimes it can be a simple as repositioning a small section of the graft.  Anyhow it worked and as I said, the revision was very minor and didn't even need anything for pain afterwards.

[Bruno]

If you reckon it's the fistula growing, which it is in a way, wait until you start using it...by that I mean the development after months of dialysis is phenomenal. My left wrist which had a small fistula bump when I started dialysis in August 2010 on it now has a biggish swelling further up the wrist and the buzz and bruit has also shifted up. I can't say I'm not concerned (I am ) but I'm seeing my Neph next Tuesday and I'm going to ask her it that's normal. But I already know she's going to say yes.

[ChickenLittle56]

OMG, when I had my fistula surgery I twice felt the twitching in my hand when the student surgeon touch my nerves. The student was helping the surgeon with the procedure with other fellow students. Both times the surgeon yelled at the student not to touch the nerve. At the time I thought it was funny that he yelled at them but now after reading all the problems going on with the nerves causing pain I could have had many problems if something drastically happened in that surgery. My heart goes out to those who have pain in the arm from fistula surgery.