I am 22 years old with an AVM sandwiched between my cerebellum and my brain stem. I had an embolization which knocked down the size of my AVM but didn't knock it out. I suffered a stroke during the surgery and had to spend 7 months in PT relearning to walk. Now, it's 1 year later and I want to get rid of the rest of the AVM. I spoke with radiologists, who are giving me uncomfortable odds; and I spoke with Dr. Spetzler's team who said they feel there is a 90+% chance of me having a successful surgery.
I am wondering if anyone has dealt with Dr. Spetzler before, and what were your experiences? This is a big decision for me to make, and my parents have been very supportive until now, but they are not comfortable with the idea of a craniotomy.
Any advice on Dr. Spetzler, or craniotomies would be greatly appreciated!!
MelJay, type Spetzler's name in the search box in the upper right of this page. You will connect with plenty of others who are his patients. He's one of the very best.
Of all the doctor's names I hear, I hear nothing but good things about Dr. Spetzler. Granted everyone's journey is different and Dr.s are human, but like Dancermom said, he is definitely one of the very best. I hope this helps and good luck! :J
I have had 3 brain surgeries with Dr Speztler over the last 12 years, with my last in 2011. I also have a malformation in my brain stem. I was told if I do have surgery on that one, not to let anyone but Spetzler do it. I have had 4 surgeries at Barrow,and I'm happy to say I fully recovered from all of them with no deficiencies. Having a brain stem surgery though is even trickier, and the chance of having some issues after are greater.
Dr Spetzler is one of the best surgeons around for this condition. If you have the surgery I would go with him. He is not too chatty- so when you meet with him be prepared with your questions! Oh and the staff calls him God!
My surgery with Dr. Spetzler was a success and I am so fover gratefull for athat man... I start rehab tomorrow for 18 days and i coulndt be happier. No paralysis, no life changing handicap... just temporaly disconfort that should fix itself within the year. I am still in the hospital and couldnt be happier.
My daughter had a craniotomy when she was 2 y and although the swelling is quite big and recovery is a bit longer than embolization (which she has also had) it’s not that bad. Overall she was aprox 1 month hospitalized (including rehab) since she had a stroke prior to her surgery. All I’ve heard about Spetzler are good things, Arizona is one of the places with more experience in open surgery to remove AVMs so I don’t doubt you will be in good hands.
