If surgery doesn't eliminate what are the chances it will grow back?

I am almost ten years post surgery and still active. I am curious to know if anyone has had regrowth. They tell me it is possible. I had Steriotactic Radiosurgery on my AVM after 4 aneurisms in it ruptured, that’s when they found it. I have been at least 3 years w/o a check now because I am scared, they started talking about another surgery. I am very afraid after what I have survived, if I let them go messing w/ it now, I will not be this ok when they are done. I am having some symptoms that I know need checked but am fearful and curious. So glad I found this site so I am not alone now!! Any comments will be much appreciated.

Hello Susan,
What you are going through is so scary, and I completely understand the desire to just ignore it and hope for the best, but I think you know its time to take back control of your health. Following up and getting further diagnoses opens up all the fears of getting bad news or being faced with the possibility of further surgeries. What you have to remember is that following-up and getting completely informed about your situation is never a bad thing–even if you find out something that is sub-optimal, diagnosis will never cause the condition, it will just put more power in your hands to make the best decisions for you health. You are actually in a very good position right now. You don’t seem to be in the midst of any acute crisis. This means that if anything is wrong you will have the broadest possible range of treatment options. If you wait, and god forbid something goes wrong, your options may become very limited, and much less attractive. Go see a doctor. You won’t be obligated to make any decisions if you do. Once you are completely informed about what is going on you can worry about what to do next. It is very possible that your symptoms are unrelated to the AVM, but there is only one way to find out. If it has been 3 years since your last check, the AVM might even be obliterated by now! No matter what happens, the stress of uncertainty can only make you feel worse. Good luck, and let us know what happens.

Sincerely,
Marilyn

Very well said Marilyn!

I just found out that I have grown a new Brain Aneurysm and my doctor told me he had taken all out. It is not true you are born with them I think once you have one you can always get another. A new Japanese doctor came to our hospital where I was operated on another brain aneurysm he said he could do laser on them and you could be out in an hour and a half and go home. I called my doctor about this and his answer was "everybody wants to stick their nose where it don't belong" sadly I think he wants to be the number one surgeon for this. What hope do I have now?

Justice, I’m sorry to hear it. You may be confusing a brain aneurysm (which can develop at any time) and an AVM (which occur during fetal development, except in rare cases such as HHT).

I’ve included a link to the National Institute of Health for you to review.

http://www.ninds.nih.gov/disorders/avms/detail_avms.htm

It sounds like you may have an issue with your doc. The good news is you live in CA, so you may be interested in getting a second opinion. There are some great docs for AVMs (Dr. Lawton and Dr. Steinberg, to name a couple) in CA. :slight_smile:

Thank you so much for this information I will definitely check these doctors, Thank you again!