Advice? Doctors?

I have had an AVM of my face, neck, throat, and airway since I was born. I have been seein my Dr for about for years now and for the past year he has been treating me with Scholarotheraphy ( Achohol Injections) to kill off some of the AVM and keep my airways clean. While I have been getting these treatments i have been having a lot of Neurological problems, for example I can’t walk up stairs, look at patterns, have severe headaches, can’t hardly carry on a normal conversation with anyone anymore, and have been diagnosed with Severe Narcolepsy. My mental state has greatly deteriated over the past year and it is very hard to deal with.
I had an MRI ran monday because the Dr wanted to see the progress that was bein made. He called me Wednesday and said “I had absolutely no idea how evolved and extensive your AVM has become, it has moved to the base of skull and directly beside your spinal cord we need to start being more aggressive”. After we got off the phone I started wondering if all these treatments have been causing the AVM to get worse or killing it off in one place but its growing back close to my brain and spinal cord and thats what is causing the decline in my mental healthand all the Neurological problems, I never thought they could be connected. I didnt have any of the problems that I have now a year ago and I cant afford for it to get any worse. I think I need a second opinion! Please send me the names/numbers of some good AVM Specialist!

Thank You for your help, Melanie Caulder

Hi Melanie,

I’m really sorry your AVM has grown so much and that you’re having more problems now. I’ve only had treatment at one place, and I highly recommend it - the Barrow Neurological Institute. Perhaps your Dr. could send your information (pictures, etc.) to them. That’s what I did when I was looking for someone to help me, and they were the only ones I found who could (and still do). If you’re interested in the Barrow I will be happy to give you contact information for Drs. McDougall and Spetzler (they’re awesome).

I think there’s a thread where members have recommended doctors and hospitals - I will look to see if I can find it, and I’m sure there are a lot of members who can recommend doctors who can give you a second opinion.

Best to you,

Tori

Tori,

Thanks for your help, I would appreciate there contact info, I would love to look into them.
I thought at one time I had found a thread where people recommend Drs and I haven’t been able to find it since! If you find it please let me know.

Thanks,
Melanie
Tori said:

Hi Melanie,

I’m really sorry your AVM has grown so much and that you’re having more problems now. I’ve only had treatment at one place, and I highly recommend it - the Barrow Neurological Institute. Perhaps your Dr. could send your information (pictures, etc.) to them. That’s what I did when I was looking for someone to help me, and they were the only ones I found who could (and still do). If you’re interested in the Barrow I will be happy to give you contact information for Drs. McDougall and Spetzler (they’re awesome).

I think there’s a thread where members have recommended doctors and hospitals - I will look to see if I can find it, and I’m sure there are a lot of members who can recommend doctors who can give you a second opinion.

Best to you,

Tori

Hi Melanie,

I tried to send you a message with this info., but because we aren’t on each others friends list I wasn’t able to. So I’ll post it here, and maybe someone else will find it useful too.

This is the website for the Barrow http://www.bnaneuro.net/

I copied and pasted this information from the website for Dr. McDougall and Dr. Spetzler. You can click on the ‘Physicians’ link at the top of the front page to see all their doctors.

If I were you I think I would contact Dr. Spetzler’s office first, as he is the director. That’s what I did and he then had Dr. McDougall take my case and he is who has been treating me.

I wish you all the best. I hope you’ll keep us posted on how you’re doing and let us know when you find someone to give you a second opinion. Again, I don’t think I can say it enough - the doctors at the Barrow are incredible, and like me, I think you’d feel you were in excellent hands there.

Dr. Spetzler

How do I make an appointment?

If there is a clear surgical diagnosis or for 2nd opinions, then either the referring physician or the patient can contact our office at 602-■■■■■■■■ to schedule an office appointment.
For out of state or out of country patients, we prefer to review the most recent images and medical records prior to scheduling an appointment. Patients or their physicians may call our office at 602-■■■■■■■■ for further instructions.

Cameron G. McDougall, M.D.

How do I make an appointment?

The referring physician’s office should contact Dr. McDougall’s office at (602) ■■■■■■■■ to obtain a consult/referral form.
The referring doctor’s office should send or fax (602) ■■■■■■■■ patient demographics and records, including a copy of the patient’s insurance card, recent imaging and a referral if required by current insurance company(s).
If the patient is a self-referral, then records as listed above from the most current physician or the physician who referred the patient to BNA are required. The records can be mailed, faxed or hand carried to us.
What happens next?

Dr. McDougall will review the patient’s records before any appointment is scheduled, so that the most appropriate level of care will be given for his or her condition.
Dr. McDougall’s office will mail to the patient all necessary forms required for the appointment, to be completed in advance.
Dr. McDougall’s office would like the patient to come in 30 minutes early for registration if all forms have not been completed in advance.
What else do I need to know?

Dr. McDougall will schedule patients on Wednesdays.
Dr. McDougall will see patients who have had previous surgery(s).
Dr. McDougall will provide 2nd opinions.

Melanie,

I finally found the thread with the list of hospitals. Try this: http://www.avmsurvivors.org/forum/topics/best-hospitals-2010

Just noticed it’s a ranking of the best hospitals in the US for neurosurgery - hope it will help.