So I had an appt with my neuro today and he thinks it is a good idea to go to either the Mayo Clinic or Cleveland clinic. The reason is primarily the intractable Trigeminal nerve pain (or atypical face pain) due to the pontine lesion in my brainstem. He said usually gamma knife or craniotomy is effective for the nerve pain, but was concerned since there are blood vessels involved -causing this pain (and now he says he doesnt know what type of vessels are involved??? He specifically called it an AVM in the past which implies arteries and veins right??). Anyway, I think it is a good idea to have this opinion and do further testing so that I least have peace of mind even if they dont think they can treat this...
But I feel like crying. Not because they are referring me, but because I feel like I have been told so many conflicting things by the same doctor and now I dont even know what is going on in my brain :( And I have had a lot of pain in the past week. I just dont know what to do.
Blahh. I try to be positive, but my energy with this is fading.
Both the Mayo Clinic & Cleveland Clinic are great facilities. However, I'm going to be a bit biased here and state that I would choose the Cleveland Clinic hands down as that is the facility which treated me 23 yrs ago by the absolute best neurological team. Also, keep in mind that there have many more advancements in treating AVM's since that time too.
Good luck with your decision regardless of which clinic you decide to use.
My daughter had a craniotomy in March 2010 at Mayo in Rochester. I have not seen or visited Cleveland. What I can tell you is that doctors everywhere have differing opinions and recommendations. I have a doctor whose office has changed advice multiple times, just one doctor involved. I understand the frustration you're feeling about all this.
I am confident either Mayo or Cleveland have the expertise and doctors to take good care of you.
Oh my gosh. I was getting on tonight to look up or ask the same question! My daughter has been fighting headaches/migraines since her AVM in August. she has has had them daily and we have tried 6-7 different meds. I asked the pediatric neurologist yesterday about going to the Mayo Clinic, and he actually told us he would recommend the Clevland Clinic as they are better with pain. so, now we are trying to decide what to do. Mayo is only 5 hours from us and Clevland is 13 hours... does anyone know the "wait time" to get into either of these places??? are we looking 2- 3 months down the road before getting in??
I understand your frustration... I have a bunch of people telling us what to do as well- Mayo, or holistic treatment, or psychological treatment. hard to know where to go and what will work.
Just out of preventing your full on frustration, I say go to Mayo. They’re closer to you. Have you gone to northwestern? They’re supposedly have a decent interventional neuroradiology program. No luck there?
Patti, while I haven’t been to either hospitals, my thought is that you pick the doctor that you totally trust. When my AVM was found, I went to a doctor that I totally trusted and that worked for me. My thoughts and prayers are with you. Stay stronge!
Thank you everybody for your input- it is much appreciated.
I *think* I am going to go with Mayo Clinic because it is closer- I will see if they feel they can even offer me anything because of the area of the brain and the risks associated with it.
dont go for the closest - go for the best!! there is a lot of confusing information out there 4 of my neurosurgeons diagnosed me incorrectly, before i was diagnosed properly and it turned out it was as my GP first thought, and AVM - i wanted to give up, trust me i did, i was lost i didnt know what this was all about, why i knew about something that nothing could be done about, but then i just got the extra energy and push by my beautiful mum and got as many opinions i could until i got the right one that was best for me, gave me hope and slowly decreased the fixation around this AVM. I trust you will find this on your journey - stay strong and never give up! x