I am new to this forum. I was recently diagnosed with a cerebral avm after I had a seizure in my sleep in August. The neurologist assigned to me decided that the conservative watch and wait approach was best, however I am looking for a neurologist or neurosurgeon in Hawaii who has had experience treating this condition. Due to COVID i am concerned with traveling and until it’s safe to travel I was hoping that someone may be able to recommend a doctor in my home state. I have already received a second opinion from Dr. Lawton who thinks that open surgery may be my best option, but again I am concerned about healing while traveling during this pandemic. Thank you for your time.
Welcome to our community! I love Hawaii, have been to Maui twice, sure hope to be there again in the next few years for another visit. I don’t know much about the specialists available there, however Dr. Lawton is referred to bu a number of our community folks, extremely well known, respected and one of the top surgeons available. If surgery is your choice, Dr. Lawton would be a nice option to have! Take Care, John.
Yes, I was treated there four months ago. Right through the worst of it for my cerebral hemorrhage & dAVF
It was an experience to say the least. I have never met Dr Lawton, my procedure was completed by Philipe Albuquerque & assisted by Joseph Zambraski
I had a Onyx Embolization - it went very well. Me & Joseph sat down multiple times & discussed what was going on - he’s who gave me faith in their work. He broke it down to terms that I can understand & told me what to expect(he was very realistic) - the procedure went even better than he expected & 100% occlusion was achieved
Their expertise is what gave me the chance to be here today the way that I am. In my opinion, not many if any could have performed the way that they have on me.
We discussed all three procedures(craniotomy, GK & embolization) and, how they applied to my case
I have nothing but good things to say about the whole process
If anyone with similar things that we deal with has a choice, I strongly recommend to make it here.
I feel so beyond blessed to be where I was. I use to travel a lot & always made Arizona my home. Right before this happened we just got back in from LA.
If you have any other questions, feel free to message me. I think it’s ok to put their info on here. Plus, it gives others some good info if they’re looking for it later.
Thank you so much for all the information. Unfortunately I haven’t received much information about it from my current neurologist. I was curious, how did your recovery go post surgery? In my consult with Barrow Neurological they mentioned I might have some speech issues since my AVM is located in my left temporal lobe which is terrifying since I am a PhD candidate. Thank you for taking your time to answer my questions.
They didn’t discuss possible side effects with me at all - this was a very crucial procedure & my dAVF is apparently rare even for them
After, they let me have it pretty good on what could have been the possible side effects
So far, I feel the best that I could - slightly four months post hemorrhage & embolization. In all seriousness, I feel good & now feel like I am about 95% back to “normal”
But, from what I gather - my results aren’t typical for folk, specially that I suffered a hemorrhage
Thank you for responding. Do you mind telling me about your experience at Queens? I actually was able to get a primary care physician to look over my medical history and he is referring me to Queens neurosurgery to review my case, I am hoping that I could be treated here since I am worried about the spread of COVID in the mainland.
I stayed at Maui Memorial to get diagnosed but surgery was done at Queens. I thought Queens treated me very well although I liked the beds better at Maui. They were organized, thorough and I thought the nurses in both ICU and recovery treated me exceptionally well. They made sure I got my current meds while I was there.
I’d head back there anytime for surgery. They will let your husband or partner stay in your room although my husband tells me his sofa wasn’t too comfortable. And the food isn’t too bad.
Like Mike I too was treated at B.N.I. (It’s a 20 minute walk from my house), but it was in 1993 after my AVM was discovered by chance after a car accident. If you’re bored you can read about it in my profile.
Your circumstances are similar to mine as I was presented with the options to wait-and-see or surgery. I chose the latter. Everyone’s AVM is a bit different. And covid wasn’t an issue. But I would make the same choice now with covid as I did in 1993.
Make no mistake, brain surgery is unpleasant. And recovery is long and slow. I’ll give you the same advice as I’ve shared with others on this forum, if you go the surgery route: get into your mind that there is no other option, NONE, other than making a full recovery and resuming your life as before surgery. Being stubborn helps.
Be patient and don’t do it alone like I did. Everyone here has experienced exactly what you are right now. Reach out. We’re here to help. And if you end up at B.N.I., let me know!
Thank you so much for responding. Do you mind telling where your avm was located and was was done for you recovery post surgery? My main concern is issues with speech, movement, and independence. Unfortunately my family and most of my friends are located outside of Hawaii. One of the only people I have with me here is my husband. Knowing someone was treated here does give me a sense of comfort and relief.
I am so happy to hear that you are doing well. I will definitely continue to consider Barrow as a possible option if it is possible for me to wait until then pandemic is under control.
Glad I could help. My AVM was located in the left temporal area. It affected my ability to speak although I could understand everything. We found it after I had a minor stroke. It was located in an area of my brain that made surgery possible.
Two days after surgery, I was talking a blue streak! Recovery post surgery: after having the staples removed from my head, was rest, rest, rest. Six weeks after surgery I called my doctor to tell him how I was doing. I was doing so well, my husband and I kept our reservations to visit relatives in CA about 3 weeks after surgery. So I was in CA when I spoke to him. He mostly listened to my speech and was assured pretty quickly that I was doing well. I’ve been fine every since.
I have a strong feeling that you’ve been referred to Dr. Donovan. In 2015, when I had my surgery, Dr. Donovan was the only one in Hawaii doing this type of surgery. Not sure if he is the only one 5 years later. Again, he is wonderful.
Wow! Your story as well as the advice I have been reading in this survivors forum is giving me hope. My avm is located in the same place as yours, left temporal lobe. It seems like they took very good care of you which makes me feel so much better. When I was first diagnosed, I felt so alone and isolated. The stories and strength of all of you have given me a lot of strength and confidence that I can make it through this. Thank you for answering all my questions.