How common for second surgery?

General
1

I'm just curious how common it is to have a cavernous malformation grow back and require a 2nd surgery. I had a malformation with a venous anomaly, and my surgeon said that by leaving the venous anomaly that there is a chance that the malformation could grow back. I didn't ask what kind of chance, ie 5%, 30%, 50% etc. But I've had a seizure since the surgery and I've had some strange feelings, so now I'm wondering.

Thanks!

2

Hi George,
It is to my understanding that CM's can 'grow back' if any residual malformation is left behind.
Are you on anticonvulsants?
If the seizures and "strange feelings" are new symptoms, it's especially important you let your drs. know, then they can best advise you.
You may be interested in joining our CM sub-group @ http://www.avmsurvivors.org/group/cavernousmalformationsupportnetwork.
Best wishes.

3

Hi Patti,

Thanks for that! I am on anticonvulsants now. I had the seizure after weaning off of Dilantin about 6 months after the surgery. I'm back on it now. I just did a 72 hour EEG, and those results will determine if I need to remain on medication or not.

:) George

4

Hi George,
I hope you soon get readjusted on Dilantin & have no more seizures! :)

5

I haven't had the same one grow back, but I keep having new ones grow. I was told once you have one bleed the chances of others bleeding are greater. I have had 4 surgeries total and my doctor told me he has a patient that has had 100 surgeries! Yikes!

the strange feelings do sound like they might be seizure related. I've had those too. Good luck! Keep bugging the doctors until you are satisfied they have found what the deal is.

6

Thanks for the feedback! The problem that I'm having now is about two weeks ago I had a pretty extreme case of vertigo. My head was swimming as if I was on a heavy dose of iv medication. The room was spinning and I felt nauseous. I layed down for about 10 minutes then felt fine. The next morning it happened again. Then I was fine until yesterday. It happened again yesterday, and wouldn't really go away. I layed down for about an hour and it was still there anytime that I moved around. I'm concerned now because it seems like a recurring problem and it's getting worse each time.

Has anyone else experienced anything like this?

I'm going to call the neurologist tomorrow morning and see if she has any ideas.

7

Hi Livi,
I too have multiple CM's & have had 4 surgeries. I'm guessing that you too, see more CM's with each annual MRI?
Hopefully there will be NO MORE BLEEDS or surgeries in your future - only good health! :)