Dr Chapman, my neuroradiologist from Massachussetts General Hospital finally called me. He says there has been absolutely no change in the size of my AVM since he first met me. So there goes my theory about this pain being caused by the proton beam radiation doing it’s job. BUMMER! He said that we should wait one more year to see if it does anything and then we will look for other options that may not have been available to me three years ago.
I’ve been feeling kind down since the call, although I should at least be grateful that neither the AVM nor the four anuerysms have grown. Oh well, I’m sure I’ll be back to my “look only for the good” self soon! Thanks for listening, Family!!!
Oh man that really is a bummer! Im so sorry
1 year seems like such a long time to wait!
Connie,I am so sorry,that is just what happened to me,word for word,I was thinking all the pain was the gamma doing its job…nope,no change from the start and will see in August,another look,my doc said because of my age it may take longer to shut down.dont know if I trust my doctor any more,I did see another doctor after I had the gamma and he said my doctor,Dr Freadman here in Florida is known for gamma and nothing else,he believes radiation is the answer and does nothing else,well thats a bit late for me a year later,so come August I see this new doc and if no change at all,he will be treating me,did you get a second opinion ? hows the headaches? caroline
Connie you had proton beam,I was thinking about trying that,hmm I think we both have to wait and thats no fun…lets hang in there together ok:) we are and have been great support for each other and everyone here…stay strong ok:) hugs my friend,caroline
Connie- you summed it up well with “BUMMER!”
So does your doc have a pain management plan for the next year while you wait and see???
The neuroradiologist left that to my local neurologist here, Dr. Tolunsky. Dr.T sent me to a pain specialist. I saw her for over a year. The last combination of Advil and Hydromorphone seemed to work the best, even though nothing gets rid of the pain completely. I’ve stopped going to her because her nurses were extremely rude to me and she herself was sometimes very unempathetic to my situation and made me feel uncomfortable. My internist, who works in the same medical group with her, got very upset with how she treated me and took over my pain treatment. I’m so lucky to have him…he’s the type of doctor that will call me himself to see how I’m feeling!
Caroline - I did get a second opinion last spring. He said basically the same thing…let’s see if this proton beam works first. Thank you for always being there for me!
Oh Connie, I am so sorry to hear that. I really hope in the next year some results occur. Thank god nothing has grown.
Sorry to hear the bad news. Take your time in getting back to your “look only for the good” self.
Connie, I am glad they haven’t grown or progressed at all. It’s terrible about your pain thoughtm I am glad you found a better doctor, hopefully he can help you get rid of the pain! You said that you have four aneurysms, my mom had a few too and she got hers filled with platinum by embolization because the doctors were worried about them,have your doctors mentioned embolziation? I am jsut wondering because i thought they were automatic
Connie, I’m praying for new technology for you and everyone with this problem. I feel for you and your family.
I am supposed to have the proton therapy in March at Loma Linda. Can you tell me if you had any side effects? What was it like? If you have any information, I would really appreciate if you would share it with me. Thank you!!
Aislinn/Ciara - when I was diagnosed 3-1/2 years ago, I was told that my AVM was too large and entangled to be helped with embolization or gamma knife; and that craniotomy was too dangerous in my case unless I have a bleed (then it would be worth the risk).
Sara L - I had my proton beam treatment done in Boston three years ago.n The first step was an arteriogram to see exactly where the AVM was located. About six weeks later, I went back to Boston to have skull markers placed in my skull in same day surgery in the morning. That afternoon, they made a mold of my face for the immobilization device. I HIGHLY RECOMMEND that you do these procedures on different days. My head was very sore from the morning’s surgery and it hurt like hell having anything done to it in the afternoon!