Scalp AVM - Hairloss

Symptoms & Treatment
1

Dear all,

Many thanks for all the welcome messages.

I come to you with a similar problem like all the other topics I've read but none that could match my own problems.

So, I believe I have had a scalp AVM on my head for sometime (9 years) and have only recently had it treated. My surgeons used Onyx bonding glue which they injected to block the network of veins.

After the first surgery, there were no symptoms. Only recently, I've had my second surgery I am now experiencing hair loss.

They didnt have to go through my scalp instead they inserted catheters into my groin but when i got home, I noticed a tiny cut/scab on my head about 2cm in length. Silly enough, I began to pick it and not notice and it would ooze white plasma/pus (I dont know which).

But I could never get the scab off, it was like I had somethign physical to pick but it wouldnt ever come off, instead it would just bleed and ooze out the see through sticky, slightly smelly substance.

Around this area, my hair is falling out. Noticably thinner and when washing my hair strands of hair would just pop out with no resistance. Each strand would have their follicle intact as well. I take great pride in my hair and to have this on the back of my mind whenever I roll on my pillow or brush my hair has be in complete paranoia.

I dont believe it is Psoriasis which the majority of other topics points to. I just want to know whether it could be permanent or temporary.

Many thanks for getting this far and I appreciate any answers you may give.

Kindest regards,

Vincent

2

Hi, Vincent, treatment for your scalp AVM involved radiation, which can cause hair loss. It should be temporary. You can type "hair loss" in the search box at the upper right of this page for other discussions about this.

There are a few other members who have had scalp AVMs; London (http://www.avmsurvivors.org/profile/londonAlexander), Danyle (http://www.avmsurvivors.org/profile/Danyle), Eugene W (http://www.avmsurvivors.org/profile/EugeneW), Kellie Farrell (http://www.avmsurvivors.org/profile/KellieFarrell), and most recently, "dad" (http://www.avmsurvivors.org/profile/dad373).

The scab on your head should be checked out. AVMs can cause ulceration, but embolization shouldn't. I believe AVMs in scalp tissue tend to be very dynamic, so monitoring for recurrence is very important. I suggest you join the subgroup Extremity AVMs (http://www.avmsurvivors.org/group/extremityavms) to learn more about treatments.

3

I think phoning or emailing your AVM doc the photo is probably the best idea for the scab. But if you are having the dizziness, vision problems, and headaches still, that would be of more concern and should definitely warrant a call to the doctor.

4

Vincent, while doing research for another member, I remembered this discussion. It occurs to me that you might have had a radiation burn on the scalp. It shouldn't happen but sometimes it does. I hope it has healed by now.