Questions and Information About Cavernous Angioma

Surgery recommended after a fresh bleed?

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I'm a new member, not very sure how this works but I will give it a try...

I have seen 3 neurosurgeons in all, including 2 neurosurgeons who include CCMs as areas of specialization at top hospitals. The latter two recommend removal of the CCM in my right parietal lobe because of past bleeds and because it appears mine is becoming more active. Two radiologists have raised the possibility that I have a neoplasm (tumor), though they think it is most likely a cavernoma. I got the Dx 11/08, but now I know I had bleeds in 2003, 2008, and 2009. I have had several MRIs, an MRA, and a CA since 2008 and there has been no change. I never had a scan when I was bleeding.

I consider myself very lucky. The only symptoms I have had are severe headache with the sensation that my face is ON FIRE! These can last for a few days, but I can function.

One surgeon, the one at Johns Hopkins, whom I think has a keener research interest in CCMs, wants to wait until a week or two after a fresh bleed because she says that that pocket of blood will give her more room to work and therefore decreases the chance of damage to surrounding tissue. The other dr said it doesn't make any difference--do it when it is convenient.

Questions: 1) Has anybody out there had a resection from the right parietal lobe? What were your symptoms? If you had surgery, how well did you recover? Any regrets?
2) Has anybody else been told to wait for a bleed to have surgery?

Thanks.

Mae
I'm a brainstemmer, but it was suggested that I wait until some blood re-absorbed. After ~3 months enough blood had cleared up that I was given the green light for surgery. Therefore, it's my understanding that surgery directly after a bleed = bad. But maybe she means wait for a recognizable bleed, let blood re-absorb, then operate. Hope this helps.

Jarrett
I was told that it's better to do the surgery shortly after a bleed, because the blood makes it actually more accessible. Not only can the blood open pathways, but it makes it easier to remove from surrounding tissue.
Hi,

I was recently diagnosed and had consulted with some of the best dr's who many listed here on the boards. I had 4 dr's say that my ccm must come out. It has bled in the past several times and is "becomnig very active". My last bleed was in late June and I am having surgery this coming Thursday the 2nd. My ccm is deep in my cerebellum.

I wish I could tell you what the surgery was like and I wish I could get someone to tell me what to prepare for :) In some ways it seems like it will be not so bad but in others I read about longer times to really get back to yourself. I will let you know how it goes.

All the best!

tami
Hi Mae, glad you found the forum. I was diagnosed the spring 2008 and the support I`ve got from this organization (AA) has been a godsend.
I just had a CA removed from left parietal lobe two months ago in Arizona (I live in Canada). I don`t know about much about the right parietal lobe but assume that after 2 years you`ve done some research.
You can read about my surgery on http://www.angiomaalliance.org/cgi-bin....7;st=10
My immediate deficiates will not be the same as yours.
I have been told by quite a few surgeons and read that it is best to wait a couple weeks after a bleed before resection. Likely easier to see the lesion among other reasons.
I was told that if a CA is of an aggressive nature, it will likely hemorrhage more than once within the first year or two of initial bleed, like yours has.
I found this in a research article, ``Cavernomas that have hemorrhaged pose an increased risk of producing further hemorrhages. The incidence of recurrent hemorrhages has been reported to vary between 30% and 80%. In a series of patients treated conservatively after a first hemorrhage, in a third of the patients a second hemorrhage was observed within one year. In another study of cavernomas treated conservatively, 75% of the patients presented with a second hemorrhage within 26 months. Based on the existing evidence from the literature these authors recommend the surgical resection of the cavernomas that have caused hemorrhage.``

You probably know about how hemosiderin (iron deposit left over after the blood is absorbed) is damaging to brain tissue and nerves. That is probably one the reasons your surgeons have opted for resection. Have you asked them about this, cause sometimes you have to be pushy to get answers....
If you are considering surgery, how about asking both of them how many each have performed-successfully.
Hope this helps.
Thanks to all of you who responded, for your best wishes, and for your shared knowledge. And thanks to those who have written before on other topics. I am very grateful to you all.

I see that many of you have mentioned Arizona and a certain dr. there.  I live in the northeastern US. If (when?) I have surgery, I want the best dr my insurance will cover, but I think there might be a few "best" ones out there, and I prefer to have a dr within driving distance.

Has anybody had surgery with Dr. Judy Huang at Johns Hopkins? Or Dr. M. Sean Grady at the Hospital of The Univ Pennsylvania?

Somebody said to ask how many resections of CAs the drs have done. Can anybody tell me how many per year your dr has done?

Thanks very much.
Mae
Mae
They say  aprx 3 weeks after a bleed will make it easier to resect.
I havenīt heard of the two NS you mention but I only hear about the oneīs that are wellknown as I live in Europe;)
I know thereīs one with lotīs of experience in Chicago called
Dr.Hunt Batjer and Dr.Issam Awad is in Illinois I think.
Connie our president might know more who to see in your area so I through the ball to Connie:)

 Good Luck and Take Care//Michelle
I was supposed to write throw...LOL
Back to the doctors if I were to choose between Univ.Pennsylvania or Johns Hopkins iīd take J H as they most likely have more experience with CCM`s...
Hi,

I consulted with Dr Spetzler in Arizona, Dr Lawton at UCSF and also Dr Ogilvy at Mas General. Dont know if Mass General is in your area but he is very good and knows a lot about CM's.



tami
Tamico is absolutely correct I totally forgot Ogilvys name but yes heīs supposed to be very good.
Lawton and Spetzler too are excellent surgeons but out of your way as you want in driving distance;)

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