Raynaud's disease and AVMs?

General
1

I have problems for several years with Raynaud's disease. My fingers turn white after being in cold weather for a long period of time, and it take some time for them to go back to a normal state. When I had an extremely bad attack last night, I started wondering if others with extremity AVMs also have experienced something similar as well.

2

No I haven't had problems like that but I have alot of other problems because I have Cowdens Syndrome. But when I was having a bad time in 2010 with the large avm in my arm before it was operated on I was starting to get numbness in the lower part of the arm.
Lesley

3

Hi Lesley,

Thanks for your comment. I hadn't heard of Cowden's Syndrome before, so I did a Google search to find out what it was and discovered that it increases the chance of one developing certain types of cancer. Hopefully this has not nor will not become an issue for you.

4

Hi Deb,
You've probably researched case histories already, but I easily found a case in which this group of Drs do relate the vascular conditions. :

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Retrieve&list_uids=8178690&dopt=abstractplus

I also found overlapping and Differential Dx info

I know you are a search sleuth LOL because you took the time to dig into Ann Arbor for my mom, and I really appreciate that. At this point, we're leaning toward Little Rock, in spite of the long distance. If it were the more common brain AVM, it seems we would have a few local options. Sigh......

5

Thanks for the article link. There are many people on here who have multiple medical problems, and I keep thinking there is a link to all of our issues.

I'm sorry that you will have take your mom to Little Rock for treatment, but if that is the place where she will get the best care, it would be worth the trip. Hope she can get the care she needs.

All the best,
Debbie

6

Hi Deb. I'm new at this! I am a Mom of a 29 year old daughter who has known she has had an AVM in her right buttock and down her right leg for about 3 years now. She has had 6 surgeries - coils and plugs in TX and 3 glue embolizations in NYC at Lenox Hill Hospital. Every 3 months they seem to kick up again. She had Raynaud's disease it was discovered when she was in junior high school! When we asked the surgeon about it, he did say it could be related to the Arteriovenous malformations. I have read that as well. I'm sorry I don't have any other information.

It's nice to be able to communicate with others and learn from others. Have a good night.

Donna Rinkenberger

7

Hi momsAdvocate,

I am my daughter's advocate, and I live in Lansing, MI. Where do you live? My son lived in Ann Arbor and worked there until he went into the Peace Corps last October. I checked on the internet today to see if there was anyone at the U of M Hospital who did any embolizations at all. I couldn't find anyone. My daughter has an AVM of her right buttock and down her right leg and is looking for a surgeon who participates with her insurance - BCBS. The Dr. in NYC doesn't, and her vascular surgeon in Plano, TX where she lives has said he can't do anymore for her. Thanks for listening!

Donna Rinkenberger

8

Hi Donna,

Thanks for posting and thanks for the information. I have a doctor's appointment next month, and I plan to ask him about all of this next month. Hope you can find someone to help your daughter.

Take care,
Debbie

9

I have had Raynauds since I was a child, I knew I had it before I discovered my first AVM, I've always used heat packs for my hands and feet when they get really bad, try to keep them warm when you go out in the cold so that they don't get so bad. I've never noticed much of a connection between the two though. Good luck xx

10

Hi Alinta,

Appreciate the reply. The reason I asked the question was both AVMs and Raynaud's have something to do with blood flow. Also, it seems that several people on here have the same things besides an AVM that I have, so I keep wondering if there's a connection to this all.

Deb C.

11

There must be, I spoke to my mum (she's researched it a lot) and she said there was a connection. I'll try and get back to you on more information. maybe speak to your doctor or specialist?

12

Appreciate that. I don't actually have a specialist at this time, but I've had some problems that might be related to the AVM, and I plan to ask my doctor at my next appointment.

13

Raynaud's seems to hitch a ride on a host of other conditions: lupus, sjogren's, fibromyalgia, erythromelalgia, though it is sometimes all on its own (idiopathic, rather than secondary).