Dear wise and courageous friends:
My husband has an "extensive" dural AV Fistula and has had over 7 embolizations and 2 Linac radiation surgeries. With that, he still has cortical venous drainage putting him at risk for a bleed (which he's not had yet... and we're praying we can prevent). Jefferson had told us that surgery was not an option... we've sent records and imaging results to Dr. Robert Spetzler and he is recommending surgery with a 95% confidence level that it can help my husband.
Have any of you had experience with Dr. Spetzler and the Barrow Institute that you could provide us any words of wisdom or reassurance?
Thanks for any help you can provide and God Bless........
Hi Joy. Here is a link which you might find useful…
Dr. Spetzler helped develop the grading system for AVMs. I will be praying for your husband!!
If you put Dr. Spetzler's name in the search box at the top right of the page, you will see that he has treated many members here and is much beloved by them. You look at their profiles and see their stories if you click on their pictures, and I'm sure they will be happy to share their experiences with you. I think your husband is in excellent hands with Spetzler, and I wish him the best possible outcome!
Thank you!! Your reassurance and wisdom mean a great deal to us!
Yes he flew to Bloomington Illinois in 2000 to help with thirteen others around the US. He is a good dr and to the point. He seen me five years later but my avm was so bad inside connected to avm outside. It’s now inoperable. Hell my chances were only 25 percent of survival. 13 years later I’m still kicking. laugh out loud. He is a great dr. Love Jen lynn
So glad to hear it....... both your confidence in him and your beating the odds! Keep it going!! Prayers for continued strength and healing coming your way!
I didn't get to visit the site much over the summer, so I'm sorry I'm just now seeing your post. I hope in the meantime things have worked out well for your husband, and I hope he had a positive experience with Dr. Spetzler, if he went to him.
I first started going to the Barrow under the care of Dr. Spetzler and Dr. McDougall in 2006, four years after my spinal cord AVM ruptured (I'd had a misdiagnosis of cavernous angioma for four years). After seeing my images for the first time it was Dr. Spetzler who recommended an angiogram, something none of my other doctors had ever even mentioned. My first angio was done at the Barrow and they are the ones who discovered that what had ruptured was an AVM, and that I also have an aneurysm close to the AVM. They have done all my angios and embos ever since.
Last year I moved from NM (where there was no one who could do spinal angios and embos) to NC. Now I'm going to be looking for a nearby neurologist, and will be finding out if the docs here think there's anyone in the state who can treat me here. I have to admit that I'm a little nervous about NOT going to Barrow and Dr. Spetzler. I'm a little apprehensive about whether I'll feel as much like I'm in competent and caring hands with another neurosurgeon and facility. I'm willing to give the docs and hospitals here a fair chance, but I'm okay with deciding to keep traveling to the Barrow if in the long run I feel more secure with the docs and care there.
So after all that, lol, I can highly recommend Dr. Spetzler, with no hesitation.
Best to you both.
Tori: thanks so much for your message and wishes! I'm thrilled to say that right now, Robin is doing well. Spetzler was able to eliminate his cortical venous drainage so he's out of immediate risk for stroke. Unfortunately, they were unable to totally obliterate his fistula so the prayer is that the radiation he's had over the past two years seals off the remaining vessels before they may want to recruit other vessels and he runs into problems again. I don't even want to think about that possibility and we're visualizing shrinkage and obliteration. He's been able to go through this without any adverse outcomes which is nothing short of a miracle and a testimony to his caregivers. We are so blessed.
I will pray that you continue to get expert care and that it leads you to health and wellness. Prayers coming your way and let us know if we can support you in any way!
Sending healing energy and light your way!
I have only heard excellent things about Dr. Spetzler. I sent the scans of my sons' avm to him and they called back and did not recommend surgery. I believe if he says he can do it, you can count on it.
Oh My Gosh... You are asking me about Dr.Spetzler?? haha he saved my life on March 1... I was told by numerous surgeons that it was inoperable. I was unsure of surgery , very unsure, when Dr.Spetzler offer to operate on me with a 50/50 chance of losing all quality of life, but he was very confident that I wouldnt lose my life. WHen it comes to a Neuro surgeon, what i learned, is you HAVE to go with the one that is the most confident. Dr.Spetzler is amazing, the best in the country if not in the world. If he said 95% percent to your husband, I would jump all over it. He will not have a chance like this. If you want to know more on my recovery you can go look on facebook, i have a page (you dont have to "like" it to read it) its called That brain fart. Of course he saved my life and my chances were 80% death and 98% total paralysis with other surgeons, and today, 6 weeks later, I am doing fantastic... so i am biaised!
I just realized i answered to an old post!! did your husband have the surgery? how is he doing?
Thanks to all for your responses! My husband had major brain surgery last May with Dr. Spetzler and McDougall.... alas, they were not able to cure him and his fistula continues to grow and continues to create cortical venous drainage into his brain. Thus far, we've been blessed in that he hasn't had a bleed. We were out there in February of this year where Dr. McDougall was able to embolize a large amount of the fistula and eliminate the CVD, but we're not confident it will stay that way. We pray we can make it a year without any adverse outcomes, when he can have another angiogram to see what is going on. As you all know, it's day by day, appreciating what we have, living in the moment, and praying that we can stay ahead of this beast to preserve my husband's life and functioning. We do feel we have the best in the folks at Barrow... we just wish they weren't so far away!
Blessings to you both!
I wish you both the Best, Joy! Thank you for updating us. I'm sorry there was no cure.
Oh Joy, I'm so sorry the surgery wasn't successful, but I'm glad that they were at least able to embolize a large portion of it. I tend to think it's better to have some of it embolized than to have no treatment option at all.
I have you both in my thoughts and will be rooting for good news for you both at your husband's next appointment. Until then, as you said, all you can do is take each day as it comes and be grateful for all the ones we get through without incident.
Thank you for your sweet words of support - I'm grateful for the support I find here and the opportunity to be able to offer the same whenever possible.
Wishing you both the best,