Neurosurgeons recommendations for AVM treatment

Welcome & Help New Member Introductions
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Hello All

Last week, after suffering my first ever seizure, I was diagnosed with an AVM on my left temporal lobe. I am 59 years old in very good physical and mental condition, I live in South Florida. Below is a summary of my AVM and doctors I am evaluating for second opinions and potential treatment. Any recommendations about these hospitals and neurosurgeons would be greatly appreciated

Thanks a lot
Luis

AVM

Size: 2.7cm by 1.8 cm by 1.5 cm

Location: Inferior temporal lobe gyrus (left side).

Supplying arteries: left middle and posterior cerebral artery

Draining veins: vein of Labbe into the left transverse sinus

Condition: no sign of bleeding, AVM is unruptured but it has a 3.9 x 4 mm flow related aneurysm.

Brain MRI and angiogram completed. A functional MRI will be done on October 11.

NEUROSURGEONS/HOSPITALS BEING EVALUATED FOR TREATMENT

1. Cleveland Clinic (Weston)

This is where I was hospitalized due to my very first and clear seizure (grand mal) on September 17, and where initial exams and diagnostics were performed.

Dr. Badih Adada would be the neurosurgeon if surgery and treatment are done at Cleveland Clinic
Badih Adada, MD | Cleveland Clinic

2. University of Miami Health

A second opinion and potential treatment to be done with Dr jacques Morcos

Dr. Jacques J. Morcos, MD, FRCS, FAANS - Miami, FL - Brain and Tumor Neurosurgery, Endovascular Neurosurgery, Neurosurgery, Neurosurgical Oncology - Book Appointment

3. Brigham and Women’s Hospital (Boston)

A second opinion and potential treatment to be done with Dr. Nirav Patel

Nirav J. Patel, MD - Brigham and Women’s Hospital

4. Barrow Neurological Institute (Phoenix)

A second opinion and potential treatment to be done with Dr. Michael Lawton

Michael T. Lawton, MD\

5. Stanford healthcare

A second opinion and potential treatment to be done with Dr. Gary Steinberg

6. Indiana University

A second opinion and potential treatment to be done with Dr. Aaron Cohen

Aaron Cohen-Gadol, MD | Expert Second Opinion | Neurosurgery

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Aaron Cohen-Gadol, MD Expert Second Opinion Neurosurgery

Dr. Aaron Cohen-Gadol (Cohen) is an expert top neurosurgeon with extensive experience in surgeries of complex br…

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Welcome luis, great you linked up with us and too bad you had a reason! I too had a left temporal lobe AVM, it bleed causing its discovery. I ultimately had gamma knife due to location on the inner side of the lobe. I think all those choices are fantastic, there are a lot of skilled and experienced surgeons out there. Another really well reported facility is Mayo in Rochester, MN one of the highest rated neuro facilities as is UCLA. In respect to surgeons, I do not know a lot of the names but can tell you that Dr. Lawton is incredibly well known and probably the best known in respect to AVMs that I am aware of. At the end of the day, be at peace with your decision! If I needed surgery, Dr. Lawton would be at the top of the list to consult. Take Care, John

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Thanks for your feedback John, much appreciated!!!. Regarding surgeons, I agree with your feedback about Dr Lawton. One thing that I am very curious about is that I have seen very little comments and recommendations about Dr. Aaron Cohen, who is the creator of the Atlas for neurosurgery and who has performed over 7000 operations according to his bio.

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@Luis

Welcome to the club nobody wants to join!

I’ve had a look through our member conversations (you can also see by using the :mag_right: magnifying glass above) and Drs Morcos, Steinberg and Lawton get plenty of mentions by other people here, so they sound like great people to consult. Like John, I can say that Stanford is world-famous, as are Mayo and Barrow. If you can get to any of these, you’d have to think you’re in the best hands around. I’m sure Cleveland gets plenty of mentions here, too.

Please note that we are not a review site and we do not allow negative reviews of doctors. This is because it is a patient platform and there’s no opportunity for doctors to defend themselves against any negative press here. So we are always happy for people to report who they’ve had a great experience with but we would remove any negative named feedback.

Like you and John, I was about 50 when I discovered my AVM and it’s a pretty frightening diagnosis to receive. I hope that by still being here and being healthy we can encourage you that good outcomes can be had. I had an embolisation procedure for a DAVF affecting my occipital lobe.

Anything you want to ask at any stage along the way, just ask. If we can help you by sharing our own experience, then that’s what we are here for.

All the best!

Richard

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Hi Richard, thanks for your feedback. I think this is a great, very helpful forum, so I am very grateful for having the opportunity to participate in it. It is indeed very motivational to see success stories like yours and John’s. For me, having a seizure that led to discovery is just a blessing, now I just getting ready to go to “war”, I have plenty of motivation to overcome this challenge, including a beautiful, wonderful wife and three phenomenal kids,

Thanks again

Luis

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Well, I can personally vouch for Barrow Neurological.

Conveniently enough, I live 20 mins away from it.

Definitely not a club I wanted to join either. But, it’s thanks to them that I am still here the way that I am.

Got “lucky” with one shot kill embolization. It was from a walk in the park & I doubt I will ever be 100% - but, considering the brain hemorrhage I suffered, I’m darn near

But, we’re all different - I can’t say another neurosurgeon is worse than the other.

I just speak from my own experience

Wish you the best!

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Luis,

The are all great surgeons. My resection was done at the Barrow. This facility is one of the best, i had my resection done in 2013 by Dr. Spetzler. When Dr. Spetzler retired he reached out to Dr. Lawton from UCSF and asked he him to take over. Dr. Lawton is one of the best.

I traveled to Arizona for the surgery, stayed near the hospital for 3 weeks. First week was 2 days of embolization and the 3rd was resection, everything went as planned and then 3 days in the hospital. I stayed there till the staples were removed and had the checkup.

I am sure you are aware, but Barrow has a online second opinion where you can upload your films. I would send them after the functional MRI. Hopefully this helps.

Carlos

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Hi Luis, I, too, was 59 when I had my first brain bleed. Great age to discover you have an AVM. At least you’re not 60 yet. This is what I told my Doctor when discussing the treatment, and whether to go with a Craniotomy. I did, after the 2nd bleed, the day after my initial consult with the Neurovascular surgeon, following the first bleed which led to the discovery of the AVM in the first place.
Go with whatever treatment is possible, that you are comfortable with, and that the Doctors recommend. The best thing you can do, in my opinion, is to approach with a positive attitude – always look at the hand you have been dealt, and play it out as best you can.
7 years later, life is pretty good, much like it was before. Just forget where I put my keys…

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I am sorry to hear of your diagnosis. This is a terrible disease and great to see you actively looking for the best doctors and treatments … My son had his AVM rupture in 2019 at 17. We were blessed to live in miami and have access to Dr Morcos and Dr Stark (neuro vascular).

Best of luck

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Hi Luis,
You look to have an amazing selection of expertise and speed of response to your situation, as well as having everything to look forward to with a great family.
Dr.Lawton is a renowned expert, and you may appreciate his Seven AVMs Surgical Masterclass on YouTube on the Barrow Neurological Institute channel if you have not seen it yet.
Good luck to you and your family.

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Hi Mike

Thanks for the reply. Great that it only took one embolization for you and that you are ding well. I lived in Tucson for about 16 years, that is where I went to college, I am an Arizona Wildcat, so I am quite familiar with Phoenix.

Best regards

Luis

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Hi Carlos

Thanks for your reply. Yes, definitely, if resection is the way to go, Barrow and Dr Lawton would be my top choice. I already uploaded all the images and reports that I have so far and then will upload the functional MRI. I think this week I will get a preliminary second opinion.

Best regards

Luis

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Hi @ebAVM

Thanks for the reply. I am very happy to hear you are doing well, it also gives me a lot of hope and optimism to hear successful treatment cases like yours. Just forgetting the keys is phenomenal!!!

Best regards

Luis

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Hi @JLardi

Thanks for your feedback, I hope your son’s recovery continues to progress well. I will have my appointment with Dr Morcos in two weeks, UM is a great facility.

Best regards

Luis

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Hi Dan

Thanks for your reply, it looks like we are both embarking on this AVM journey almost at the same time, my very best wishes to you for a successful treatment and full recovery. I will definitely look at the Youtube videos from Dr Lawton/Barrow.

Best regards

Luis

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Sorry to hear about your diagnosis, but rest assured there is light at the end of the tunnel & so many members here who can help with their experiences… please continue to keep us posted… God bless!

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Hi @Luis !
Sorry to hear about your AVM, but I’m sure you will be fine! I had my surgery in July and I had to say that I’m almost recovered. I feel pain of my incision site from time to time and when the weather changes, but overall I’m much better than I was on my first 2 weeks post craniotomy. You will be just fine, be optimistic!
Good luck!
Jenny

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Hi Adrian, thanks, definitely getting feedback and being exposed to stories of other people that have gone thru similar issues have helped a lot. I am looking forward to sharing my own success story too, I have faith on that!!

Best regards

Luis

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Hi @JennyY

I am glad you are doing well, it definitely bumps my optimism to see stories like yours, thank you!!

I hope you continue to get better.

Best regards

Luis

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I can tell you first hand that Barrows in Phoenix was phenomenal!! My undiagnosed AVM ruptured and I was airlifted to Barrows. Their group of neurosurgeons was the best, and I not only survived - but was left with minimal residual effects. Also - the ancillary staff was incredible. I did not know ICU nurses were so highly trained! Good luck with your search!