Ok, so I was diagnosed with my AVM last October…its located on the right occipital lobe. Initially my doctor said I was probably a good canidate for a craniotomy. Then after a while he said he was scared that i would have some vision loss and because I have 3 small kids at home and my husband works a lot that the surgery may not be my best option. I’m originally from Houston, Tx, which is where all our family lives, but currently we are stationed in Saratoga Springs, NY (military)…so having help after surgery would be difficult.
Anyway, my neurosurgeon called today and said he has talked to some colleagues and thinks my best option may be Radiosurgery.
Can anyone tell me about your experiences??
Oh, I’m going to Boston on July 30th to get a second opinion.
Hi, Resa. What doctor do you have an appointment with on July 30th? A few of us have been treated at Massachussetts General Hospital. I belive those who had radiosurgery there have been happy with their care.
I’m going to see Dr. Carter…yes at Mass. Gen. I found him online and I talked to my regular doc to see if she could get me in to see him. I was going to be going on the 23rd, but I couldn’t make it on that day, so its the 30th.
That doesn’t sound too terrible. I have heard that most people are terrified of the Halo. I don’t have any anxiety about that…yet. I think my favorite part of your experience is the sandwich and tea. =)
8am angiogram: it’s a surgical procedure, probably the worst part but you’re put to sleep anyways
10am fit on the halo: local anesthetic so you don’t feel much pain, but you do sense them screwing the headframe into your head, not bad at all
11am radiosurgery: wheeled into a room and your head frame is attached to a machine, the ceiling in my room was painted sky blue with clouds, they played whatever you want so bring a CD or audio book, time flies here, painless
1pm recovery: you need to keep you leg straight to avoid clotting, relax in your room watching TV
5pm release: the danger of blood clotting in your leg has passed so you can go home
The worst part, to be brutally honest, is the waiting afterwards. If you think about the AVM in your head constantly, you’ll give yourself so much stres and anxiety. If you move on with your life while not taking unnecessary risks, it’ll be much easier.
Thanks for the response. I had an angiogram done a few months ago, I was awake and it wasn’t bad…except afterwards, when I got home. I had an allergic reaction to the dye. My face and ears swelled up like a balloon and I was really itchy. They said it was probably because of how much dye was used. Anyway, it wasn’t bad.
I guess I’m not so worried about the actual procedure as I am about the side effects that may happen later. I don’t know what to expect. I’ve read different things about the procedure but they don’t say much about side effects…is there anything I should be aware of?
As far as side effects, it really varies and it’s hard to predict. I had nothing until 1 year later when I had some inflammation (vomiting, loss of sensation) which subsided immediately with medication. Here is some data on rates of complications: http://www.avmsurvivors.org/forum/attachment/download?id=1543517%3A…
I think it’s good to be informed. You must be your own advocate. For example, when I started vomiting regularly one year after gamma, the neurosurgeon (over the phone) told me nothing was wrong. The radiologist at the ER told me nothing was wrong. Finally I got myself an MRI and an appointment with a new neurologist who said that I had some brain inflammation and put me on steroids to reduce the inflammation.
The point of the story is that doctors are sometimes too busy to respond to everything (several times telling me there was nothing wrong) so it’s good to be well-informed about what to look out for after gamma knife and when to see the doctor. Ask your neurosurgeon what to look out for, write it down, and monitor your health while still moving on with life and enjoying time with your kids.
Dear Resa, I think you should get a lot of opinions about your case. Being a good candidate for craniotomy is something positive. You and your doctor have to weight craniotomy and the risks of bleeding. A bleeding can do a lot more damage than a craniotomy many times. If your doctor seems scared with some vision problems maybe you should get one with more experience.
One thing I have learned after our avm experience and two craniotomies is:
the how much a surgery is complicated it all depends on doctors experience.
How many cases your doctor has treated? In how many of them he was able to remove 100% of the avm? These questions I did not ask on my son first craniotomy and thats why he did two.
Try to contact others who did craniotomy without a first bleeding to find out about their recovery. Lots of love.
Thanks. I’m always so unsure of what questions I should ask my docs. I’m going to see another doctor in a couple of weeks. I’m just not comfortable with the one I’ve been seeing. He doesn’t seem too sure about ANYTHING. First they told me the AVM was large, then they said, well, its not large. First he said that I’d be a good canidadte for craniotomy and he said radiosurgery wouldn’t work because it was too big. Now he’s saying that I should have radiosurgery. I’m going to see a doc at Mass. General and see what he thinks. Its so much to take in, ya know? I haven’t had a bleed …yet…so thats good, but there’s always that “What if…” in the back of my mind.
I am glad you can get all these opinions before any treatment. I just met this wonderful network after my son first craniotomy. You definitely should see another doctor. Things I have learned about avms are:
it is not easy to remove them 100% surgically. You need to get the best surgeon with experience in avms. It probably would be a doctor over 50 years old. Remember avms are rare and happen in 3-5% of the world population, so doctors get experiences over the years. During or after craniotomy you need to do an angiogram to be sure your doctor had removed 100%. My son just did that 6 months after the first surgery (!!?? - terrible).
talk to many doctors about the positive and negative aspects of radiosurgery.
talk about the risks and damage a bleeding can cause.
try to find other pacients that had craniotomy.
I wish I knew these before everything.
Hi, Resa-
You may wish to ask your neurosurgeon what functions the area covers in your body. For example, my AVM was on the brain stem and when it bled it affected my vision. So, they warned me that it was more likely that the radiation might affect my vision. In fact, it did. My double vision worsened. However, I’ve come to accept that double vision is much better than being dead or in a nursing home!
Radiosurgury is an amazing technology. Its been around for a while, but it still has its issues like any treatment option.
By the way- my experience was exactly like Ben. The only thing I’d add is that, when I came home, I had a lovely turban on my head and had to be careful taking a shower for a few days.