Intervention radiologist in Green Bay wi is referring me to neurosurgeon at UW Madison. As of this morning, the Green Bay guy is saying that radiation or resection are my two best choices. I have a small AVM in my left parietal occipital artery with a venous aneurism behind it. It is not deep, or large, so he is guessing surgery to resect it would be my best option. Just looking for opinions, not medical advise. What others have gone thru with radiation and/or resection on small, superficial AVMs near the occipital lobe. Also, if anyone has worked with UW Madison.
Thank you!
Leahr
I had my AVM resected; it was a moderate-size along the occipital and parietal lobe border and it was near the surface so the resection went smoothly… unfortunately it had ruptured 3 months prior to removing it so most of the damage had already been done but I had to have it resected so it didn’t rupture again.
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Thank you. My sympathies that it wasn’t found or taken care of before it ruptured. How long did it take to recover from the surgery? Did they gove you the option of radiation? What made you decide on resection?
thank you. yes they gave me the option of radiation but the chance of another rupture before the radiation would destroy the avm was high and I probably wouldnt have survived another rupture so I went with the resection.
my recovery in the hospital was 11 days
Thank you. This really helps. I haven’t gotten an appointment with the surgeon at UW yet. Just waiting for the call to get this process moving. Radiation sounds like a long, painful process with a lot of uncertainty, steroids, swelling, etc. If the surgery, looks somewhat uncomplicated, I will probably decide on that, knowing it will be gone and done with. Just scary stuff to think about. Also, insurance wise, I really don’t want to be hitting my deductible every year for the next couple years. It’s already going to take me 3 or more years to pay this years bills off.
Good luck I hope you find a good surgeon, I know UW has a good medical school… I went to college at UW!
Hi Leahs, My AVM was also in my back left occipital area. The Neuro surgeons said that as my AVM was deep into the brain that the only safe option for me was Gamma Knife surgery, which is was I had in 2o12, and have recently been advised that the AVM has been obliterated…praise the Lord!
The Gamma Knife process is much less invasive and obviously not as scary. I think i May have opted for the instant fix if given the the option, but as I say , Gamma Knife was my experience, and has much less risk of damaging the brain further (although mine was already damaged from my haemorrhage… and left me visually impaired 50% in both eyes , but I’m alive and very grateful to be here a while longer God willing).
I pray that you stay calm throughout your journey and that your healing will come very soon.
SmilerDi
Thank you! I’ve heard some pretty bad things about gamma knife. Its a relief to hear such a positive experience from you. Congratulations! I know I am strong and will get thru whatever the recommend. But just hearing about other experience makes me be able to breath again. Thanks!
Dear lehear
I had AVM with 7mm vein malformation 4 years ago.Now I am totally healed from AVM comming with hydrocephalus, the worse case ever, lucky person thanks to my angel.My AVM gone due to gamma knife treatment.No worry you will feel just a little heat inside head where is focused radiation beam.Just a little pain from screws fixing stereotactic frame on head.Good luck with you! Andy
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Leahr,
I have a small AVM on my left frontal lobe discovered incidentally in June 2016, no bleed. The options presented to me were also resection or gamma knife. I opted for resection, wanting an immediate resolution as gamma knife can take several years to obliterate the AVM. I went to Mayo in Rochester, MN. Great Neuro team, but the avm was more complicated than they anticipated and after 8 hours of surgery, they were unable to resect it. My recovery was incredibly quick, with little pain. After surgery I was in ICU for about 18 hours, moved to a regular room for another day, then discharged. I was driving again in about 10 days. No pain meds after about 4-5 days.
I then returned 6 months later to have gamma knife. It is more painful than resection due to the injections they have to give you to get the frame screwed into your skull. The worst part of it is that its so freaky. Kinda seems barbaric. But…after 12 months my avm had reduced by 40%. They expect it to be gone in another 6 months or so.
Its a difficult decision as to what to do. I agonized over it. But whatever you decided is best for you. Good luck!
Thank you so much for this! I have decided on resection as long as my consult with the surgeon at UW Madison goes well. I meet with him on August 1st. I am rated a 1 on the 1-6 scale of surgery according to my angiogram, with 6 being inoperable. It’s good to know your experience as you have done both and did not have the complications of a previous bleed. I am a divorced mom with an 11 year old and a 13 year old who need to be driven to all of their activities. I have people who will help me, but I’m sure it will get old quickly if I need help for too long, and honestly,’I am one of those really stubborn people who hates asking for help. Lol This information really comforts me thinking it might not be too bad. It sounds like you are doing well with the radiation. Best of luck to you that it is gone in 6 months. I’m sure it feels like forever, but knowing that it’s working must be somewhat of a comfort. Good luck to you, and again, thank you so much for sharing your experience with me.