Gamma knife a third time?

Hi guys! My stories started 24 years ago. It’s been a long process to get where I am, but I made it. Now I am facing a dilemma again. I suffered a stroke at 17 and pregnant. Went through a D&C before any treatment was considered. Went through embolism, then a crainotomy. Shortly after that I went for GK in '94. 4 years later what was treated had been obliterated. That was the good news, however it was discovered that the vessels that had been embolized were expanding around the coils that were used at the time. So, I went back to receive another GK treatment. A couple of year after that the Dr.'s thought it too was obliterated. The next MRI revealed that was not the case, so I watch and wait. Fast forward to 2015 I begin to have symptoms and undergo an angiogram since I moved to a new city. I get the 50/50 talk and decide to wait and keep it under observation. I started to have TIA symptoms, which I believe was caused by vasospasms. New set of docs recommend GK again, but red flags due to possible necrosis if treatment may be an area that was treated previously. The doctor that did the GK has since passed away and the records concerning the treatment have been destroyed due to me not having been a patient of his for 20years. I am totally frustrated, and unsure what my next step is. The interventional radiologists stated that I was not a candidate for embolism again as the AVM is only 7mms.

Any advice is gladly welcomed

Hey there Jen. Reading the post, and having no professional training in the matter other than having had three cerebral AVM myself, I would get a second opinion and soon. I say this because my brain bled “waiting” for surgery. Though some docs will attempt to tell you to wait, as a survivor of bleeds that weren’t supposed to happen, it is your body and brain so get it checked asap in my view. Blessings as you continue.

I totally missed your post back in August, my apologies. I’ve only had the one gamma knife treatment six months after a bleed. I’m interested what you decided and agree with Paul, a second opinion would be a good start. Take Care and wishing you the best in 2019, John.

Thanks for the replies. Since I posted this, I moved and my husband has found my films that I have kept over the years. I am wondering if it may help the doc make the decision for treatment. The problem I have found is a lack of qualified docs to treat my avm. It’s only by the grace of god that I found the ones I have. And this is a second opinion. The other doctor that I have seen, while good, had moved to a different city. The 2nd one was arrogant and talked down to me and treated me as if I didn’t know what was happening with my own body. So, I’m still waiting and will contact the doctor.

Here is an option for another opinion that I know lots of folks here have had great success:

Barrow

Get a Second Opinion | Barrow

We offer second opinions for brain tumors, spine surgery, aneurysms, pituitary tumors, acoustic neuromas, and metastatic brain tumors. Learn More.

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@JazzyJen I highly suggest sending your scans to Barrow in Arizona - Dr Lawton is considered the best and has done surgery where others have been told no surgery.
I have seen his work
He is amazing and others can speak to his work as well on here
I believe it’s $150 for a remote consult
Hugs
Angela

Yes go to Barrow if at all possible - I went there for 2nd opinion - thank goodness I did

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The advice to talk to Barrow is excellent. Lunsford at Pitt would be my go to for a gamma knife question. I don’t think that a third round on the same area is something that most docs will do, but my knowledge is a couple years old. Maybe things are different now.

@DB20 there in lays the question. Is what needs to be treated, been treated before. And you are correct, I don’t think most docs would do it. Dr. Clark wouldn’t. He wanted me to go back to UVA in Virginia where I had the GK before to get the second opinion. And it’s only a second treatment of the same area. I have had 2 treatments on two different areas.

Got it. Given this is so complicated, I do think it might be worth talking with Lunsford. He’s got scads of experience with repeat gamma knife cases, and is a really great individual personally. Lots of hospitals will do gamma knife, but he’s been at the forefront of the hard cases, e.g., volume stage radiosurgery to deal with huge AVMs. Very data driven doc who has seen it all. He’s my kid’s doc, and I’ve traveled a long way to see him - picked him because GK was my kid’s only chance, and the case was crazy complicated. Also - best wishes. This stuff is really hard.

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