This is Rupert's mom. He will be 21 in a week. He had a brain avm that ruptured in August 0f 2012. He had crain. surgery to remove most of the avm and then had cyberknife radiation treatment to try and take care of what surgery did not get. We just had his 2nd follow up to the radiation surgery MRI - 6 months apart. The radiologist said there was no change in an area that showed a small spot - he thinks it is scar tissue from radiation. The neurosurgeon is not convinced it is scar tissue but possible more avm and has ordered a angiogram (we have had several prior) - which we are very glad they are doing to make sure. However, the surgeon indicated that if it is avm, he will want to open Nathan (rupert) back up and remove it because if left it will eventually bleed again.
His was a very extreme avm - and he has come out of it with little to no effects. Struggles with short-term memory, and seems to be a little regressed in maturity - but other than that he is pretty much as he was prior. A 2nd surgery scares me that would change.
Question is this - has anyone ever had to have a 2nd removal surgery and if so what was the outcome.
We are dealing with St. Louis University Hospital in St. Louis MO. Have been extremely please with the treatment / outcomes so far - but are thinking before a 2nd surgery we would like a 2nd opinion - does anyone have a surgeon they would recommend for a 2nd opinion - we will travel anywhere. Our original surgeon was Hemket Zarzour and he was outstanding but he has since left SLU. Would you recommend tracking him down to do the 2nd surgery if needed - because of his familiarity with our case ??
Only starting out on my journey and so cannot offer any advice but did not want to read and run.
Wishing you and your son all the love and luck in the world. Jane x
Mom, After his angio, if they see that Rupert still has his AVM, I would suggest you send his records to Dr. Robert Spetzler at Barrow Neurological Institute, 350 West Thomas Road, Phoenix, AZ 85013.
Barrow's has an online way that you can pay $100.00 for them to review Rupert's records and provide you with a second opinion. Many, many of our members think extremely highly of Barrow Neurological Institute.
In the meantime, please stay strong & positive. Also, please keep us informed regarding Rupert's progress.
Mom, I second Louisa’s recommendation. He’s well worth the $100 to get an opinion, as he is one of the best with AVMs. A second opinion (or even third) is invaluable - it can confirm your choice or give you a completely different option. Educating yourself empowers you to make the best decision when the time is right. All the best!
Hi! My son's AVM ruptured a little more than a year ago. Over the course of a few months he had 4 embolizations and 2 crainiotomies. He is now being scheduled for cyberknife to get what they couldn't last winter. The neurosurgeon - the only one to give us hope - is DR. Eric Nussbaum in St. Paul MN at United Hospital.
I have no advice,only well wishes to you and especially Nathan Rupert.He is young and strong! Three years ago this 65 year old Grannie, had an avm burst on my spinal cord and bleed into my brain. I spent 43 days in hospital. By the grace of God, after three years, I am almost my old self.I do have short term memory loss and keep a daily journal, or the day is just gone.But, who cares? I live! Tell your son, chin up, keep strong and you too are going to recover and have a happy life once again! All the best. Donna
Barb, you are being so strong and doing all the right things! Getting a second or third opinion is a good suggestion. I was new to all this when I was diagnosed in August 2014. I just returned from Phoenix and very pleased with Barrow Neorological Institute and Dr Spetzler. I live in NW Arkansas and got opinions from a local neurosurgeon, a Springfield, Mo neurosurgeon and Dr Spetzler. I want to wish you the best, add this to my prayers and let you know that what you are feeling is perfectly normal. Sounds like your little one is strong and a fighter! May you find comfort in your decision!
By ALLLLLL means, absolutely and of course, DO get a 2nd opinion ! The replies herein I've read recommending Barrow Institute seems to be the very top medical center for AVMs from many, many , many contributors that I've been reading on this site for about ten years !!! Hopefully you'll follow such advice ! Blessings to you and your son ! Sally
My sons had 2 crainotomies. His was very large and complex. Dr. Spetzler performed both of his surgeries. As Louisa suggested sending your records to him for a 2nd opinion would give you peace of mind. I also sent records to Dr. Dan Barrow, he was in Atlanta at the time, and Dr. Hunt Batjer in Chicago (this was prior to his 1st surgery). These physicians are known for treatment of vascular issues eg. AVMs. I felt better having the consenses of all the doctors. You can never 100% determine the outcome, but you can go into it feeling you have made the most informed decision. For his second surgery I just went with what Dr. Spetzler recommended. I wish the best to you and your son. It is such a difficult place to be. It sounds like you have some really good resources.
I agree with the others -- by all means, get a second opinion.
My son had to have a second craniotomy because either they didn't get the whole thing the first time around or it grew back -- they're not sure. My son, like yours, had little to no ill effects from his original rupture or his craniotomy. Like your son, he has a few issues with short-term memory, but that seems to be it.
The second surgery went just fine, too, with no additional ill effects. There was a slightly higher risk of complications, though, because they had to cut through the original scar tissue to get to the AVM the second time around. Be sure to ask your doctor about the level of risk compared with the first time around so that you know and are willing to accept the risk.
Dr. Kantrowitz from My. Sinai in Miami. Hes the best! I would highly recommend him. He has THE A Team! Best wishes and God Bless. Pray a whole lot. It works.
Question for all of you : Do I correctly understand that an AVM that was removed can grow back ? Or after surgery when there's still remnants of the AVM was it overlooked , instead of growing? Unlike a tumor, etc, I didn't know they grew at all. Mine was found accidentally ten years ago and I've never had a symptom, and thusly no treatment, for which I am most prayerful and grateful. I do understand they change, like the route of the blood flow, etc. But do they actually grow and get larger ? Thanks goodness I had my last MRI last week, which we do every two years, and there was no change in mine. I am just curious and will look forward to any and all answers and comments. Thanks, Sally
Hello my name is Bob I really would like to share my avm problems with you my first avm burst and caused me to have a stroke,after 2 titanium clips were installed.then my surgeon found 1more avm and an aneurysm no joke. He treated both of them bye doing angiogram and more titanium clips. I am serious about everything I said feel free to contact me.
I would recommend a second opinion too. I so wish I had done so in the beginning. Mine was discovered after having a seizure. I was immediately taken to the Mayo in Jacksonville that night. Had all initial testing done there including one embolization prior to going home. I think about it all the time. If I had gotten a second opinion would this thing be out of my head now. My doctor recommended radiation treatment. Second one caused multiple seizures over the course of several months to a year. Last bad one was last July. I hope they have my medicine right now. I would be interested in getting Speltzners(probably not spelled right) opinion. Does anyone think that I would be disrespectful of my doctor if I did? I am well into treatment. 2 year angiogram coming up at the end of the year.
Hi Barb I am sending my doctor’s contact information. I trust he will be as helpful for Rupert as he was for me. I hope he can help you make the best decision. I will pray for Rupert and you. I know how hard this situation is for parents.
Dr. Reinhard Schulte
Phone:(909) ■■■■■■■■ Ext. 42654,
Fax:(909) ■■■■■■■■
E-mail:■■■■■■■■■■■■■■■■
God bless you.
I wonder this same thing and plan on asking next Wednesday when we go back to SLU for the angio. His ruptured on 8/22/12 he was life flight to Springfield MO from Joplin MO and the neurosurgeon in Springfield sent him on to St. Louis Univerisity Hospital. Had emergency surgery the next day to relieve his ICP (was highest they had seen)and then put into a coma - Had actual craninotomy surgery the day before Thanksgiving 2012. Came out pretty good - only side effect is short term memory loss. They did not get it all out so they did cyberknife radiation surgery almost exactly a year ago. 1st 6 mo mri showed a spot that the radiologist was sure is scar tissue. The 2nd 6 mo. mri and the spot was the same - radiologist sure scar tissue but the neurosurgeon wants the angiogram to make sure it is scar tissue and not more avm that was missed. If it is avm,the neurosurgeon wants to open his head back up and go in and get it. He said it will definately bleed again if left.
We will be asking lots of questions like - why can't we do another cyberknife surgery instead of more invasive surgery, could we just watch it and tell when it might be getting close to rupture, what are risk of more brain damage than he has experienced, etc.
If anyone has helpful questions we should be asking - please share. I need to write it all down to take with us because I know if it is more avm we will be upset and not be able to think clearly.
Thanks for all the help we are going to definately use some of the recommendations for 2nd opinions if it comes down to more surgery - God is so good and I know He has got this!! Blessings to all.