PLEASE, if you are financially able, talk to the top neurosurgeons! Although I am grateful for being alive, the initial info I was given was that it was "medically urgent" that I have the AVM repaired or take a chance on having an aneurysm. I did not have private insurance. The top neurosurgeon in my City did not accept state medi-cal insurance. My embolization was NOT so successful--however, six months later, a craniotomy was done and it was successful. Yes, I am grateful. However, I ENCOURAGE you to seek and understand your options! Prayerful it all works out for your wife!
Hi Sam, Looks like you are in CT? We are too. Our son had AVM surgery in November. I highly recommend you talk to Athos Patsalides, M.D, Dr Gobin, or Dr Stieg at NY Presbytarian. All but Dr Gobin treated our son, Dr Gobin comes highly recommended by a friend. Dr Souwedaine was our sons surgeon, but I believe he is just pediatrics. (If anyone reading this needs a Pedi-neurosurgeon - I can't recommend him enough, he is wonderful and the tops at what he does). This is a wonderful group of surgeons - trusting enough for us to put our sons life in their hands! Good luck, and let us know what your wife decides. If you have any questions, let me know.
You didn't say where you are having the procedure but as the others recommend seek additional opinions especially if you have access to specialists in AVMs. Mine was first diagnosed at 18 and they wanted to do surgery. I declined and at the time chose to have radiation treatment. Jump forward 30 years and I started having neurologic problems. I live on the east coast so I had access to many medical centers that have specialists that only do AVMs. I interviewed 3 different Drs. and they all essentially suggested the same treatment. I had 3 embolization's followed by gamma knife treatments. Your Drs. should be able to tell you why it is only 20% effective but also what the next steps are. Go into this informed and if they cant answer your questions you need to find a Dr. that can. It is very scary for both you and your wife but knowing the expected outcomes can go a long way.
My son had embolization one day before his craniotomy. My understanding of the Emboization procedure is relatively safe (risk is similar to angiogram. Embolization will make the surgery easier in terms of controlling bleeding. Hope it helps. Go for second opinion and ask the doctor why he recommended embolization?
who is doing the embolization (usually is not performed by the surgeon)
The radiation oncologist recommended embolization to reduce the size of my AVM before radiation. He said the risk was too great with the size the avm was. When I went in for the visit before the embolization the doctor told me all the great risks from death to stroke to paralyzation. He could not tell me how many procedures or how much to reduce it. It scared the crap out of me and I left at the medical facility including all doctors associated with it.
I talked to another place and the doctor told me embolization is not an exact science. A lot of it is straight intuition. They have to know when to stop. Some think it is going well and continue. This is where problems can occur. In other words find a well experienced interventionist with experience with avm's. They have to have confidence in their ability.
Needless to say I have decided to wait on treatment until I know all the risks including radiation without embolization.
My avm was treated with gamma knife in 2012. Prior to leaving the hospital my Nerosurgon recommended not having a embolizum due to the risk of stoke. I would recommend a second opinion. Your in my prayers.
Hi Sam, I had an AVM rupture in May 2013. I had an Embolization done in June. They said they were able to get to 90% of it. I quite honestly couldn't tell any difference after procedure until craniotomy. I will say I don't want to go through it again. 2 and half hours of being awake while they poked around in my head with what felt like a hot glue gun. I also got sick toward end of procedure and my body temp fell to 94. They actually thought I was having another stroke on the table.
That's just what I went through. It might be fine for others, but I'll never do it again.
From all of the comments here, you can see how each individual AVM is different, and these of course are just our opinions. If you have not already done so, how about a 2nd and 3rd doctor's opinions will certainly not hurt!!!
Only in my OPINION, I think your wife is making a good decision to NOT do it. If it was my brain, and an only 20% success rate, it would not be good enough for me either.
Ask GOD for more guidance! If anyone can help you, it is Him!
Has surgery been suggested at all? Do not hesitate to seek numerous opinion from all the best Neuro center in the country. You can mail her scan and they will give you an opinion by phone. Barrow Institute of Phoenix Arizona saved my life thru a craniotomy. All others wouldnt touch me. I am doing great.
Hi Sam - be careful with Yale. We know someone with an AVM that went there with a rupture - the doctors had no idea what to do with the AVM part of it. They saved his life, thank God, but they are not experts in AVM's. Not to mention the bedside manner was horrendous!
Ask LOTS of questions - especially ask about their experience, how many cases they have had specific to your wife's AVM, success rates, experience with different options. Meet all the doctors you may need while there. Through our research and that of our friends, we found very few doctors are actually experts in AVMs. You certainly want one that has years of experience and many patients under the belt, not someone who wants to use your wife as an experiment.