AVM in the Neck

I have been diagnosed with an AVM in my neck…although my doctor says it is small, my xrays (MRI) show a mass from the back of my head to the back of my shoulder. My doctor suggested we wait for six months and then get more MRI`s to see if it has grown at all…My husband got laid off from work and i lost my insurance…the six months have since passed and I have not gotten rechecked yet…I have another month before my new insurance goes into affect…I have been having alot of headaches in the past month along with eye pain, neck pain, shoulder and arm pain and numbness. even the back of my head hurts to touch…kind of bruised feeling…this is almost daily…the headaches are at the back of my head and some pain over my eye…anybody have any suggestions on what i should do?..when i was diagnosed i had shoulder and arm pain but my doctor said the AVM wouldnt cause this. anybody else with AVM of the neck have these symptoms? any suggestions?

Hi Deadra,

I had an AVM removed from my neck in April. Since then, I have had fewer headaches, and I the problems I had with my left eye not opening readily when I woke up have lessened dramatically. However. after the surgery, I lost movement in my arm. I had regained most of it, but I lost some last week after a headache that sent me to the emergency room. Since them the movement has come back pretty much, but I have increased pain when I move my arm.

Your AVM sounds much larger than mine. Mine was confined to my neck. If you doctor still doesn’t want to remove it if it hasn’t grown, I’d get a second opinion. I wish you well with all of this.

Take care,

Debbie

can you tell me about the surgery?..how long was your hospt. stay?..the incision?..did you have general anestisia?..stitches?..about how big was your AVM?..how long was your recovery?..anything you can tell me would be very helpful…the doctor i have is suppose to be the best for my area but i am beginning to wonder…he says my AVM is small…is the entire mass that is seen in the MRI considered the AVM? or just the bump that is in my neck?..did yours branch out furthur than your neck?..my pain including the headaches isnt that extreme…just uncomfortable…but i have been waiting for almost a year to get rechecked…is an AVM in the neck considered serious as one in the head?..so many questions…sorry.

Debbie Considine said:

Hi Deadra,

I had an AVM removed from my neck in April. Since then, I have had fewer headaches, and I the problems I had with my left eye not opening readily when I woke up have lessened dramatically. However. after the surgery, I lost movement in my arm. I had regained most of it, but I lost some last week after a headache that sent me to the emergency room. Since them the movement has come back pretty much, but I have increased pain when I move my arm.

Your AVM sounds much larger than mine. Mine was confined to my neck. If you doctor still doesn’t want to remove it if it hasn’t grown, I’d get a second opinion. I wish you well with all of this.

Take care,

Debbie

I’m not sure my description of my surgery will be totally relevant since they didn’t know I had an AVM before it was removed, but I’ll give it anyhow.

The surgery was done in a surgical center under general anesthesia, and I went home the same day. There was a tube put in my neck so that any excess blood could drain out. Before the surgery, the doctor told me there would be instructions about how to change the dressing, but he must have changed his mind because the nurse didn’t get those instructions to give me. However, she thought that he should have since I was bleeding before I was released. As a matter of fact, The bleeding got so bad that I got blood in my hair and on my pillowcase.

A day after the surgery, I was carrying my laundry upstairs. I felt a sharp pain, and I wasn’t able to lift my arm past my shoulder readily. There’s some disagreement among my doctors as to whether or not this was caused by the surgery. I got the movement back in the arm eventually, but I had a small setback last week that I’m hoping will abate itself in time. I also experienced some numbness behind my left ear. At this point, the numbness behind my ear is more like pin pricks when touched.

I know that the MRI report mentioned three dimensions of my AVM, but the only one I remember was 1.2 cm, which is quite small compared to the size of the AVMs others members on this site have experienced.

I would say that the AVM in my neck was not as serious as the ones members have experienced in their brains. I had an AVM done on my brain at the same time as the one was done on my neck, and there was no sign of an AVM there.

Hope this has been helpful. Don’t worry about the questions. I still have them myself.

Take care,

Debbie

Deadra Petrosilli said:

can you tell me about the surgery?..how long was your hospt. stay?..the incision?..did you have general anestisia?..stitches?..about how big was your AVM?..how long was your recovery?..anything you can tell me would be very helpful…the doctor i have is suppose to be the best for my area but i am beginning to wonder…he says my AVM is small…is the entire mass that is seen in the MRI considered the AVM? or just the bump that is in my neck?..did yours branch out furthur than your neck?..my pain including the headaches isnt that extreme…just uncomfortable…but i have been waiting for almost a year to get rechecked…is an AVM in the neck considered serious as one in the head?..so many questions…sorry.

Debbie Considine said:
Hi Deadra,

I had an AVM removed from my neck in April. Since then, I have had fewer headaches, and I the problems I had with my left eye not opening readily when I woke up have lessened dramatically. However. after the surgery, I lost movement in my arm. I had regained most of it, but I lost some last week after a headache that sent me to the emergency room. Since them the movement has come back pretty much, but I have increased pain when I move my arm.

Your AVM sounds much larger than mine. Mine was confined to my neck. If you doctor still doesn’t want to remove it if it hasn’t grown, I’d get a second opinion. I wish you well with all of this.

Take care,

Debbie

OK I dont know how long it has been since I have up dated my discussion…It is now Jan 2010…i finally have my insurance and an appointment to get my AVM rechecked on the 25th! I will post more when i find out if my AVM has changed or not or what the doctor plans to do.

Deadra