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AVM Survivors Network

Recommend Dr -would love to hear your experience or opinions


#1

I had my first bleed the drs think in June 2014. I have been told I have a cavernous malformation with dva on right side of my brain near my sensory nerve area. I have since gone to a specialist in Chicago and Baltimore at john hopkins and spoke to a Dr at mayo clinic. I had my 2nd bleed they think in October. I had another MRI in march and it showed no new bleed since October. One Dr says to leave it and watch it and my local Dr and another Dr suggest to remove it. I will travel anywhere for the best treatment and best Dr. I decided to submit my images to Dr Spetzler in Arizona. He says he wants to remove it. I keep going back and forth on what to do. I'm only 30 years old and don't know if I should risk leaving this in my brain basically waiting to see if it will bleed again, but surgery is so scary as well. I don't really have any symptoms besides headaches. I'm looking for any suggestions or opinions on treatment and Dr Spetzler. I am so glad I found this group. I have a great husband and family who support me but its always nice to have another "family" who can relate.


#2

Hi Sara from my area. From this website, I have read great praise of Dr. Spetzler. I hope you are helped by other replies. Best wishes to you during this stressful time.


#3

Sara,
I'm so sorry to hear that you have this huge and scary decision to make. I'm happy, though, that you've found another 'family' here to give you additional support.

I have not had any experience with Dr. Spetzler personally, butI believe he's considered to be the top notch guy when it comes to AVMs. It's common to get 2 different opinions on how to best treat an AVM.

Doctors look at the size of the nidus, the venous drainage (deep or superficial), and the proximity to "eloquent" (necessary for normal functioning) areas of the brain. They assign a number to the AVM which is a rough prediction of the risks and predicted outcome of surgery.

The site has a list of questions that may be helpful for you to go over with your vascular neurosurgeon - if you go to the top of the page and mouse over "AVM Info" and then click on "questions for your doctor" there's a list that goes over things that are good to know before you make a decision. It may seem like a long list, but this is your brain you're talking about, and a neurosurgeon will be able to give you a clearer picture of the outcome possibilities if you go through the list with him (or her). Especially ask about things like what the likelihood is of another bleed is you leave it untreated (usually they say once you've had a bleed, you're at higher risk for another to occur).

Best wishes as you make this decision!


#4

Hi Sara - I don't have personal experience with Dr. Spetzler, but I have only hear good things. No make that great things. He's one of the best, but if you want to hear from others, you may want to use our search box (top right of page) and type in Dr. Spetzler. That way you can see the various discussions about this great doctor. You may want to start there, as I'm sure there are many discussions about the Doc.


#5

Hello Sara
I have only heard good things from Dr Spetzler
I see Dr Michael Marks at Stanford and I know you can have him review your scans and him will give his opinion contact his nurse Mary to start the process never hurts to get a second opinion he is the founder and head of neuro radiology

https://stanfordhealthcare.org/doctors/m/michael-marks.html

Good luck and keep us updated
Angela


#6

Sara, I've been on this Network for a very long time. What I have learned is that this is an extremely difficult decision to make. What helped me was the true faith I had in the neurosurgeon I chose. From the members, Dr. Spetzler has been well recommended, particularly for difficult cases of AVM's.

Thankfully, you are a wonderful husband, a supportive family and this Network.

What also helped me was staying strong and positive.

Please keep us informed regarding your discussion and progress!


#7

Sara,

Since it has bled once, chances are strong that it will happen again. My suggestion is to go for the surgery. I was 53 when this happened to me. My AVM was in my occipical lobe. No warning signs when this happened. You are young so recovering will be easier for you than when you are my age.

I am sure your doctor is a good doctor. I know that it is scary. So far I seem to be making good progress. I had two bleeds and a craini and a pulmonary embolism. I will keep you in my thoughts and prayers.

Pat


#8

Sara,

Your AVM is an abnormal birth defect, therefore the only way to fix this is to have the surgery. The sooner, the better. Again, you have your youth on your side. It wont go away. My mom in law was also sent to this doctor. I know that she is in good hands. I wish you only the best here.

Pat


#9

I did. No options for me, in fact there was concern that I would not survive bc my situation was that critical. My mom in law has a different situation. She has lymphatic lukemia and her doctor is sending her to Dr Wiles. I dont know much more at this point. She is 74.

I had my first bleed Dec 5th, 2013. The surgery was on the 10th. I had a 2nd bleed in surgery. You make the best decision for yourself, but address if u can. Dr Wiles saved my life. U can look him up on line.

friends here,
Pat


#10

Hi Sara - Only you can make the right decision for you but do NOT let fear be your motivating factor for not having surgery at this time. You should make your decision based on your health and Doctor's feedback. Btw, Dr. Spetzler is one of the best and if thinks it should be taken out, you should give it some serious thought. Surgery is scary for all of us, regardless of our age. Age is also on your side, especially while you are very young. Please keep us informed about what you plan on doing. all the best to you Sara.


#11

Sara, Im not trying to use fear as a motivating factor. Yes, talk to ur doctor first. And go with the best doctor that u can find. If they say you can opt out on surgery then thats great. I am sure this Dr Spetzler is a good doctor. But then again, so is my brother, and he played a big role in my care when all this was happening to me. Best to you.


#12

Hi Sara, I has my AVM removed at Columbia presbyterian hospital in NYC, 12 years ago .I had no choice but to have brain surgery it was my key option but now after having it if I was given the choice to either have it or leave it I’d say go for the surgery. I wish you the best!!


#13

Hi Sarah,
I had my AVM removed at Barrow's by Dr. Spetzler. He is a great surgeon and has a very enthusiastic team. I have no complains about the hospital, surgery or anything related. On the contrary, I was very glad I had my surgery there. It's important to have a surgery with a doctor that you trust.
Unfortunately, we cannot make this decision for you; every single case is different. Mine was located on the left occipital lobe and was small, about 2.5 cms. In the Spetzler's scale, it was a grade2-3; what typically doctors are okay operating. I wish you luck. Stay positive and keep us posted.


#14

Hi Sara,

I have no personal experience with Dr. Spetzler, but from the other comments it seems he's one of the best. I saw Dr. Robert Rosenwasser, a Neurosurgeon at Thomas Jefferson University in Philadelphia, he is one of the top neurosurgeons in the world. I highly recommend him.

Take care and best wishes to you.