Dealing with Pain from AVM

#1 12-25-2005, 10:26 PM

Hi, I was hoping that someone had some info that would help my daughter deal with the pain that she is having from the AVM that is in her forearm and hand. (Bone and muscle) She always has some pain, but sometimes, it becomes overwhelming for her. What can we do to help the pain, preferably no medication, and why all of a sudden does it hurt so intensely?

I know that triggers of growth can be hormonal change, stress, and I have recently heard illness. Do pain and growth go together? She has had a hard couple of days. We know from a recent MRI, that it is on the "warpath" again and we are in the process of getting her medical info to Dr. Burrows, but in the meantime, I thought that there might be something that we could do to help her along with the pain.

Thanks for your help. Sarah

KristieinStMarysGA · #2 12-26-2005, 12:45 PM

Hi,

I am not sure what brings on the sudden intense pain, some of had said it's blood clots (phlebities..sp) in the malformatioin. I have had quite a few of those they are hard lumps, sometimes with a blue dot on the lump. And when I have that I take asprin and elevate the arm.

I was told to try to swim at least 2 times a week, and I have started to do that and that seems to help alot but now that the weather is getting cold I have stopped.

Really what works for me when the pain becomes intense is rest,elevation and motrin. I notice mine gets really bad when it's time for my "monthly visitior"

Hope this helps some

Kristie

#3 12-26-2005, 02:29 PM

Hi Kristie, It is funny that you mentioned that, my daughter has that going on right now. We try the rest, elevation and either tylenol or ibuprofen; however, sometimes we are not in the position to stop everything and do that.

Is the pain, from pressure that is being exerted on the nerves? Does that cause any damage when it occurs? Do the blood clots ever travel to other parts of the body (i.e. the brain or lungs)?

Thanks for your help. Talk with you later, Sarah

KristieinStMarysGA · #4 12-26-2005, 10:49 PM

Sarah,

Yea, the whole rest/ice/elevation doesn't always work..it's frustrating. Some days I would just lie in bed an be miserable becuase I couldn't position my arm just so...but I have gotten to the point to where I just fight through it as it's not going anywhere soon. And it will not run my life. It's hard, but hey what am I going to do?
Has your daughter had any treatment at all??
From what my doctor told me, is that these blood clots are (in my case) in the superficial veins and are not a danger as they will not travel to the brain/lungs...that's not to say they aren't painful becuase they are..but again just another aspect of this and I just deal with it.
With my malformation, it's located in the elbow joint and then between the radius and ulna in the forearm, and then I have a mixed lesion Venous and Lymphatic going from the proximial area of the forearm to about the wrist (which is newly dx'd) and I am not sure how that will be treated. I do have some bony involvement which needs to be watched and that is in the elbow joint, and could lead to losing more ROM in it than I have already lost..

Well good luck to your daughter and I hope I have helped somewhat

Kristie