Dont stop looking for the right doctor

General
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I went to Beaumont Hospital and they found my AVM...i was origianlly supposed to have the surgery done by a Dr Daniel Micheal MD PhD..(Adult and trauma). I went on to get many other opions from other doctors who also told me the same thing. I sent my CDs to Spetzler in Arizona who is the best in the world and he called back and told me i needed a VASCULAR NEUROSURGEON which Dr michael is not..(And not saying that he isnt capable of doing it becuase he is a great well respected neeurosurgeon but everybody has their specialties)

I found out about Dr.Ghaus Malik but got talked out of going to him becuase of his age but he should have done it he is one of the best in the world which i didnt know at that time becuase he never said it but i later heard it from other people. Scheduled my surgery with Dr Micheal and was supposed to have it done Feb 21rst of this month.

Dr.Spetzler recommended University of Michigan Dr Ben Carson also recommended U of M and gave a specific doctor. DR BYRON GREGORY THOMPSON. I had an appointment with him yesterday (2-17-11). He is an amazing person and the moment he started talking i knew he was the one to do the job. He is very straight forward and showed me AVMs he did the day before and they were going home within two days. He told me how many he has done and his success rate.

Please make sure if you are having surgery for an AVM please dont go with who is closest to you and who your insurance only accepts.Please find a vascular neurosurgeon and on who specializes in AVMs. They should be able to tell you how many they have done and what their success rate is...if they arent directly telling you that or showing you some kind of proof of that then you need to find somebody else.

I feel so blessed that i came across Dr. thompson and it was a long road but God finally got me to where i need to be. You will all be in my prayers and i know i will be in yours. Please do your research.

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I couldn't agree with you more Kevin. I had no way of knowing that the diagnosis of cavernous angioma I'd been given for the first four years after my AVM bled was incorrect, until every neurologist and neurosurgeon I saw kept telling me they couldn't do anything to treat it, because of the location within the spinal cord.

I kept doing research into doctors and asked my doctors here to send my information to anyone I could find who might be able to help me. Finally I heard about Dr. Spetzler and had my stuff sent to him. They called me immediately and said they didn't think I had cavernous angioma and they wanted to do an angiogram, a test I'd never been given. After going to the Barrow and having the angio, it was discovered that I have the AVM and an aneurysm in my spinal cord, and it was the AVM that had bled.

The combination of having a correct diagnosis and connecting with a doctor who is experienced in vascular malformations was the ticket to really finding out whether there was a treatment option available for me. They were able to embolize both, and I'll be eternally grateful for having found Dr. Spetzler, Dr. McDougall and the Barrow.

Since there is no one in the state of NM who can test or treat me for the malformations (if they were in my brain, I could probably be treated here, but because they're in the cord, there isn't anyone who can do it) I have to go to Phoenix every time I need an angio or embo, and that can be stressful financially, but we'll always find a way because it's my only option.

I don't really mean to toot my own horn, but none of this would have happened if I hadn't kept insisting I look for someone, somewhere to help me. Every time I found someone I thought I should send my pictures and information to my doctor would kind of roll her eyes and smile, and I'd say, 'Indulge me. Let me try. I've had so many 'nos' what's another one going to matter? Maybe someone will say, 'Yes, we may be able to help. Come see us'. And that did happen, but everyone I saw said the same thing, 'cavernous angioma, too deep into the cord to attempt any kind of treatment, it will probably bleed again, so sorry, best of luck to you' - until the Barrow. Long road it was, but it has turned out to be worth it.

So yes, if necessary, keep looking for a doctor who is experienced in VM, even if it means you have to leave home to see them and be tested and treated. It can be a hardship, but I imagine not nearly as hard as having another bleed (or an initial bleed).

Sometimes it isn't easy, but please don't ever be afraid to advocate for yourself and do the leg work that your regular doctors either can't do or won't do. Leaving everything to the doctors isn't a wise idea, IMO, anyway, because we have to be active and proactive in our health care management no matter what the situation.

Good for you Kevin for following through, educating yourself on your options and using the tools that can help you make the best informed decision for yourself.

I'll think about you on 2/21 and will be hoping all goes well. Please keep us posted.

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Tori ...wow i cant believe they didnt find it right away. That is crazy. Im so happy that you did what you did and done all you can to make sure you were treated becuase nobody should have to settle...this is your life and you cant just take one opinion. Im so happy things workied out for you. Im actually having the surgery done on March 7th ...was originally supposed to have it done on the 21rst of feb but found out my doctor wasnt even specialized in doing AVMs. The one i have now Dr Byron Thompson is amazing and i am so thankful ...so he will be doing my surgery on 3/7/11.

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Kevin so happy to hear you found some one you trust to do the surgery, that is so important. All the best. You will be in are prayers !!! Keep me posted. Tonna

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I will Tonna thank you. Hope all is well with you.

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I think my experience is just another example of why it's so important to have that 'gold standard', usually definitive test, the angio.

Apparently it's very easy to confuse one kind of vascular malformation with another with just MRIs, and difficult if not impossible to tell one from another. If it had been just one doctor making the mis-diagnosis I might have been more upset than I was (though very relieved at the same time to find out what was really going on) and might have really wondered if I should check to see if there was any kind of malpractice, etc. But the fact that every single doctor - neurologist and neurosurgeon alike, even a great doctor at Stanford - saw the same thing and made the same dx, it was easy for me to understand how the confusion occurred, as my neurologist used my MRI images to explain it.

Had I known back then about angiograms, and certainly about their importance as a diagnostic tool, I would have asked - and asked, and asked, and asked until I got it - for an angio. Now that I know, when I read about someone's fears and concerns about having an angio, while I empathize completely, I have to say - have the angio! Just. Have. It. I can't say it enough.

So Kevin, I will change the day that I send out the majority of good vibes for you to March 7th. In the meantime I will 'let it flow' your way and keep wishing the best for you.

Keep taking good care.

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Kevin you are SO right in saying this and it is just such an important part of the AVM journey. Best of everything on the 7th. We will be thinking of you.

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Hurrah!!!

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You are sooo right. I saw a surgeon once who wanted to operate on me. After talking with him for a while. I knew more about avms than he did. He was a brain surgeon but, not a vascular surgeon. Needlless to say, I never saw him again.

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Kevin…you are a very smart man. I did the same thing when I found out that I had an AVM. I was lucky that I live near a great vascular surgeon, Dr. Chris Ogilvy at Mass General, who saved my life. A friend of mine told me to go online and find the best and I am so glad that I listened to her! Let us know how you are doing…I will pray for you!

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GOOD JOB, ONE REASON I JUMPED ON 2DAY TO SEE HOW YOU WERE DOIN I REMEMBER YOUR DATES AND WANTED TO SEE IF YOU HAD POSTED BEFORE YOU WENT IN, GOOD YOU DID YOUR HOMEWORK, I HAD DONE THE SAME THING AND I KNOW GOD SEND ME TO THE RIGHT DOC. HERE IN HOUSTON, YOU HAVE TO BE ABLE TO TALK TO YOUR DOC. AND HE HAS TO BE ABLE TO TAKE THE TIME TO TALK TO YOU AND ANSWER ALL YOUR QUESTION. MY DOC. DID THIS NOT ONLY WITH ME BUT WITH MY FAMILY AS WELL. EX: I HAD 4 TRIPS TO THE DOC BEFORE MY FIRST EMBO. AND EACH TIME I WENT I TOOK A DIFFERENT FAMILY MEMBER WITH ME AND EACH VIST MY DOC. TALKED TO US LIKE IT WAS THE FIRST TIME. WE WERE ALL WELL INFORMED ABOUT EVERYTHING THAT WAS GOIN TO HAPPEN. I WILL KEEP YOU IN MY PRAY’S FOR NEXT MONTH. GOD BLESS GET SOME REST BE GOOD TO YOU.

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Thank you Joy…i finally found the right one .ill keep you posted

Joy said:

Kevin you are SO right in saying this and it is just such an important part of the AVM journey. Best of everything on the 7th. We will be thinking of you.
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Exactly Ben…everyone was saying i needed a vascular surgeon and im so thankful …the right doctor makes all the difference

Ben Morrell said:

You are sooo right. I saw a surgeon once who wanted to operate on me. After talking with him for a while. I knew more about avms than he did. He was a brain surgeon but, not a vascular surgeon. Needlless to say, I never saw him again.
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Hey Sheree thank you so much for remembering my dates.Im so thankful for this doctor and he did just how you said…talked and answered all our questions and didnt seem like he was in a rush or had somewhere to be and no time for questions.I feel so comftorable and its in Gods hands on the 7th and i beleive it will all be ok.Thank you for keeping me in your prayers and i will continue to do the same with you. I hope all is well
sheree d ellison said:

GOOD JOB, ONE REASON I JUMPED ON 2DAY TO SEE HOW YOU WERE DOIN I REMEMBER YOUR DATES AND WANTED TO SEE IF YOU HAD POSTED BEFORE YOU WENT IN, GOOD YOU DID YOUR HOMEWORK, I HAD DONE THE SAME THING AND I KNOW GOD SEND ME TO THE RIGHT DOC. HERE IN HOUSTON, YOU HAVE TO BE ABLE TO TALK TO YOUR DOC. AND HE HAS TO BE ABLE TO TAKE THE TIME TO TALK TO YOU AND ANSWER ALL YOUR QUESTION. MY DOC. DID THIS NOT ONLY WITH ME BUT WITH MY FAMILY AS WELL. EX: I HAD 4 TRIPS TO THE DOC BEFORE MY FIRST EMBO. AND EACH TIME I WENT I TOOK A DIFFERENT FAMILY MEMBER WITH ME AND EACH VIST MY DOC. TALKED TO US LIKE IT WAS THE FIRST TIME. WE WERE ALL WELL INFORMED ABOUT EVERYTHING THAT WAS GOIN TO HAPPEN. I WILL KEEP YOU IN MY PRAY'S FOR NEXT MONTH. GOD BLESS GET SOME REST BE GOOD TO YOU.
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Good for you Kevin! We will all be anxious to hear how it all goes next month. Keep us updated!

I was so very lucky to have had such remarkable surgeons. I had a massive bleed and although my husband was aware of AVMS (my aunt also had one that bled) he had no idea what was going to happen. It all happened so quickly, there wasn't time for him to do research. We just lucked out with the vascular surgeon and the neurosurgeon. I researched them well after I was out of the hospital and recovering and discovered that they are some of the best in their fields.

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I think this is such an important discussion. I wish everyone would do their research before choosing a doctor! I have both my fingers and toes crossed for you!!!

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I agree Kevin i found my neursurgeon name dr Dilante Elegala at MUSC in charston SC when i saw him this is right dr for me. keep searching until you found the right DR and you feel comportable. here i am now i have my crrany done on march 1st i was home thursday At 3pm thank god i didnt loose anything vision ext. stapples will be out next week and appointment for post opps. on the the 28th of march and hope to go back to work

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HI, MICHAEL GLAD YOU ARE DOIN WELL AFTER YOUR SURGERY BUT A LITTLE ADVICE TAKE SOME TIME TO REST AND LET YOUR BRAIN HEAL THEM THINK ABOUT WORK, I HAD MY SURGERY IN OCT AND I AM JUST NOW GETTIN READY TO GO BACK TO WORK NEXT MONTH. WE FEEL GOOD, LOOK GOOD BUT OUR BRAIN DOES NEED REST TO HEAL SO TAKE CARE DONT RUSH GOD BLESS

Michael Stanfield said:

I agree Kevin i found my neursurgeon name dr Dilante Elegala at MUSC in charston SC when i saw him this is right dr for me. keep searching until you found the right DR and you feel comportable. here i am now i have my crrany done on march 1st i was home thursday At 3pm thank god i didnt loose anything vision ext. stapples will be out next week and appointment for post opps. on the the 28th of march and hope to go back to work

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Hi everone
My brother had spinal avm so his doctor did the surgery and now he is paralysed. Some one told me maybe his doctor wasnt good enough and hurt his nerve in the surgery. Could you please tell me if it can be correct?

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Hello Kevin. Dr. Malik removed my AVM in March of this year. I have numbness and partial paralysis in my right leg but am still working on recovering. How are you doing?? It’s been 6 years since your diagnosis but I don’t see an update. I did my inpatient rehab at U of M.