We met with Dr. Zomorodi of Duke Raleigh Hospital yesterday. He was fantastic. He has agreed to take Josh as his patient - and he is now our primary Neurosurgeon. He is having Josh do two more MRIs. He thinks there is a plane between the motor control section and the AVM. Josh will do a functional MRI to double check the AVM isn't too close to the active areas, and another MRI to show how the fibers going from the section to the spinal cord are located to make sure they are beside the AVM and not tangled up or underneath it. If the MRIs come back with what he wants to see - Josh will be able to have surgery for removal of the AVM. Dr. Zomorodi is taking special care to make certain he reduces the risk of paralysis and loss of speech as much as he can before surgery. We are so very excited about this. We feel we're actually getting somewhere now, and we feel very comfortable with the new dr. We have been so very lucky and blessed. Not sure when the MRIs will be scheduled because of the holidays but Dr. Z was thinking we should be done within the next two weeks. Then the waiting part will be over and we can move on to recovery.
Good news! I'm glad you're happy with the new doc. So very important when you're considering brain surgery, yes? Please keep us updated.
Yay…sounds like you have a good doctor!
Great!!! There is a young lady at Duke now that has an AVM. I wish you all the best and look forward to meeting with you some time soon.
I was diagnosed with a cerebellar AVM on Monday and saw Dr. Zomoradi on Wednesday. My first meeting went really and I really got a good feeling from him but I want to make sure that I find the right doctor before starting down a treatment path. Would you be willing to share your experiences with Dr. Zomorodi with me? How did surgery go? How has the recovery been? Anything else that you think would be valuable for me to know.
Weems03 - we adore Dr. Zomorodi! I cannot speak highly enough of him. He did two embollization surgeries on Josh. He has us do some more tests first - even though UNC had already done an MRI and angiogram. Josh did a functional MRI - which was really cool to watch. He had to think during the MRI on specific tasks - and that gave Dr. Zomorodi a better idea as to how much room there was to work around the AVM. Unfortunately, the MRI cannot predict how the brain will swell, so it's not exact. Each case will be different. Josh was partially paralyzed - thankfully only temporarily - during the second surgery. The paralysis lasted a little over a month, even with steroids to control the swelling. He had PT about 3 times a week during that month. He got about 90-95% accuracy back and that's pretty close to perfect, so we were very fortunate. But after that, Dr. Zomorodi didn't want to do the other surgeries. So the next two embollizations and the full removal of the AVM were cancelled and we opted for radiation. Dr. Zomorodi was on the radiation team along with Dr. Kirkpatrick of the Duke Radiology Center. Josh did another MRI, they made his mask, did the radiation surgery, and we're almost at the year mark now. Josh did lose his hair in the spot of the AVM, and has had a few setbacks. But only a few and they've mostly been bad reactions to medications. We see Dr. Timothy Collins of the Duke Pain Center to control the pain.
The biggest problem has been the pain. Josh always had headaches before, but there weren't debilitating. After the second embollization - he's had severe pain. We aren't able to get it under control. Considering all else that could have been going on - it's really minimal, but it's hard to remember that when he's in so much pain. The clinic always asks to rate the pain on a level scale of 1-10. 10 being an emergency room visit. We've had only one of those trips so far, thank goodness, and it wasn't a bleed or rupture - just a bad headache. He maxes out at about a 7 most times now, although there are times when it hits 8 and 9. He can't work those days. He's too distracted to drive, talk, move around. This level of pain only started happening after the second surgery. I don't think it was faulty surgery, just the nature of the deal, as his brain is readjusting to different blood flow levels and all. We were told to expect it - and we did. It's just frustrating to not be able to control the pain for him, that's all.
Dr. Zomorodi was available for all our questions and concerns. When we were freaking out over Josh's paralysis, he was available to us via text, cellphone, email. He has been excellent about returning calls, emails, and remembering who Josh is - which is amazing knowing how many cases he has. Dr. Zomorodi was nice, caring, helpful, and his team was more than helpful.
The only thing we really hated about the surgeries was that the rooms at the hospital were always full. His first surgery he didn't get a room for many hours and had to stay in recovery - where there was a lot of noise, bright lights, people talking, yelling, moving around - so he was in a lot of extra pain and didn't get to rest. The second surgery they didn't even have a bed for him in recovery, so he spent a long time on the stretcher which was very uncomfortable. Again, it was bright lights, noisy, crowded. He was in a lot of pain and sensitive to all of this as he just went through brain surgery - but they didn't have a room available for him to move to - so they kept him in recovery. In fact, they kept him in recovery until release for the second embol. but they did at least move him to a private recovery room - so he could have the lights off and be away from the noise and all a bit more. But he was basically tethered to the wall and couldn't move much because of the bed not being a "real" hospital bed. That's why we didn't realize he was paralyzed until he was already home. he could really move his arms like he needed to at the hospital because of the tubes and all.
Hopefully this is helpful. We love Dr. Zomorodi and he did a great job. He took Josh on as a patient when no one else would even consider him for surgery due to the location of the AVM. And we're sticking with Dr. Zomorodi until the AVM is completely obliterated - whether that means a few more years and another round of radiation, or after this first round of radiation we have enough room to try another embollization.