New DX Seeking Info
1: Wed Sep 08, 2010 11:46am Shirley
Hello, my 16 year old son Simon was dx last week w/ 2 cavernomas in the left frontal lobe, each about .3 cm. He was having terrible headaches and had MRIs at our cancer center, Memorial Sloan-Kettering (he was treated for stage IV neuroblastoma there in 1998-0 and we feared relapse). He is being seen by a pediatric neurologist affiliated w/ MSKCC & NY Presbyterian. The only symptom he's had is the headaches and the advice is to monitor the cavernomas closely, w/ no surgery at this time.
Last week I found this website, which has provided some very helpful information. I am wondering if anyone here has any insights into the following:
1. Most importantly, is there any neurologist who is considered a specialist on cavernomas in NYC?? If not, in any not to distant city such as Philadelphia or Boston??
2. The MRI showed that the bleed had occurred some time in the past (I think such as a month ago). Is it common for terrible headaches to start after a bleed (not before), and persist for weeks or longer?
3. Simon is now on neurontin for the headaches, which the doc said takes time to kick in. Have others found neurontin to be effective for headaches? Any suggestions on how to cope with grogginess during the school day (just started today)?
4. Are there other pain meds people have found effective for headaches? (Simon is allergic to morphine which eliminates all the opiates.)
5. Are there any other parents here of children who have developed cavernomas due to their cancer treatment? I am wondering if their cavernomas present the same as other cases?
Thanks for any answers to any of the above questions, or comments on any of the above. It is certainly hard not to feel afraid and demoralized about this diagnosis, on top of all the other effects from my son's cancer treatment. I hope to get as informed as possible and learn how to manage the situation as best I can. Best to all, Shirley
2: Wed Sep 08, 2010 4:15pm Debi32355
Hi Shirley, and welcome to the forum.
I had a consult with Dr. Robert Solomon at NY Presbyterian. He does specialize in vascular malformations. I did not have surgery due to the location of my angioma. There is one other doctor in his practice who also specializes in vascular malformations ... I believe his name starts with an E ... I'll have to research and get back to you.
There is also a hospital in Boston that has a good team, but I'm not familiar with it ... I believe someone else here will know, though. It could be Boston Children's Hospital, but I'm not sure.
Do you live in the City?
3: Wed Sep 08, 2010 6:09pm Shirley
Thank you Debi! I looked him up and he seems to have a very impressive resume (altho I see he does not take Empire BCBS, hmmm). Right now getting on top of the pain issue is our priority -- we're seeing the MSKCC pain team in a couple of days. After we settle down I plan to get a second opinion.
We live in Park Slope in Brooklyn. Are you anywhere near?
I'd love to confer with someone who knows more than I do!
Thanks again, I will try to learn more about Dr. Solomon. Best, ss
4: Wed Sep 08, 2010 7:25pm Debi32355
Shirley, I live in NJ, but I work in midtown NY. Would be happy to meet for lunch one day if you want to come into Manhattan.
5: Fri Sep 10, 2010 12:35am beckyinaz
I know that one of the moms takes her daughter to Boston Childrens hospital. I can't remember the drs name, but hopefully she will see this soon. Also our president Connie, her daughter and her live in Virginia so they might have some suggestions.
as far as the headaches, yes, they can start with a bleed. I haven't unfortunatly been able to get rid of mine. I have tried all sorts of medicines. Can he take as much of the neurontin at night as he can? that way he can sleep it off? After school have him try to come home and put an ice pack on the back of his head for a few minutes to take some of the edge off the headache.
Go to the Angioma Alliance Community Hub
Go to the Angioma Alliance Forum
Go to the Angioma Alliance website