as you all know that have met me my avm was just discoverd on 28. I am going in at 7 am for angio tomorrow. i have dr zipfel in st louis mo. i need some more feed back about him. His nurse said my is immediate so he is looking at gamma knife or open surgery. i just need to hear how great he is from ones that have been ther. his creditinals are very good . but i dont have to type how scared i am.
I did a search on this site, and there's no mention of Dr Zipfel.
I'd suggest listen to what he says, ask lots of questions, and see how comfortable you feel after visiting with him. I think it's a fair question to ask who he'd recommend for a 2nd opinion.
Another key question is "how many AVMs like mine have you treated? What are the results?"
He works with Dr. Dacey who is also an excellent surgeon. I believe you are in good hands. As for surgery or radiation they only have Gamma (not Cyberknife that I know of) and their Proton Beam is almost complete I believe. The intervention radiologist who has incredible credentials is Dr. Moran. Hopefully you have him. He is the doctor who was not in my insurance network. Believe me I did a ton of research.
My advice is go and see how he is. Honestly you will probably want a second opinion anyway no matter what they suggest. If risk for surgery is great get a second opinion. If you are interested in it and that is the way you want to head then look for another great neurosurgeon and get another opinion. You will have to have your angiogram and an mri for these second opinions anyway.
If the surgery risk seems too high then look at different avenues for radiation.
I do know that they do not work as a team to evaluate your AVM. If they can do surgery then he will tell you the risks. If they seem to high they will refer you on to the oncologist. If they think it is too big for radiation then to the interventionalist. They all did work on a research paper for multiple approach for large avm's that was impressive.
From all of my research and I was obsessive on it you are in good hands in my opinion if that makes you feel better.
The angio is vital, in order for the medical professional to make a call. Please have someone else with you at consultation, when their opinions are provided - two heads are better than one. Ultimately, no one else can make your decision for you.
This is a scary, but we know you will stay strong and positive.
thanks Robin :>) needed that :>) let u guys know after angio tomorrow morning. I have made a few jokes to day so i guess i am ok. they may have not been funny . ha
I got his site from here some where but cant remember where. but Robin seems to know a lot about him and his hospital so that made feel better . I will let u guys know after angio tomorrow. thank u good questions and i wrote them down. tks Ron
Hi tony thank you for the reply. it is scary, i am even scared of the angio tho i am so hoping it goes without a hitch. I think i am prepared but are we ever really ? thanks again :>) i will repost after angio tomorrow. thank you Brenda
Hi Pongladi ( I forget your real name - sorry),
Angiograms aren't bad at all. I kind of like them. I've had 5 or 6 of them. To many to remember the exact amount.. lol They give you a local so you are out of it but, conscious. They put a catheter(?) in the artery at the groin to shoot die in different areas of the brain to take the pictures. The radiologist will tell you what's going on every step of the way. When they put the die in the area, that section gets very warm but, it's only for about 2 to 3 seconds. Then it goes away as quick as it came. When it's all done. They move you to a recovery room and your husband can sit with you there. You'll need to stay lying down, I think for 1 1/2 hrs(?). The actual angiogram only takes about 45 mins.
Good Luck, You'll be fine. :)
YOUR AWESOME ! THANKS LEAVING OUT OF TOWN TO GET IT DONE :>) SEE ON HERE WHEN I GET HOME TOMORROW ALL HAPPY AND SPRY ! ( SMILING)
Let me add; You have every right to be scared. If you weren't scared - you wouldn't be normal. (Your husband might say your not normal anyway.. LOL LOL) This is all knew to you. We were all scared when we first found out. Once you have all of the facts and what your options are. Then you will have the ammunition you need to deal with this.
Through this process, you may get some feelings that you are all alone. It's because it's YOU that is going through this. It can happen. All you have to do is remind yourself of everyone who is there for you, everyone who is there to help and support you through this.... And those feelings will subside. Yeap! I'm talking from experience.. :)
Its official Ben--you do have a brain problem. I can confirm it. You like angiograms? I think mine would have been better if the meds would have actually worked. I was not out of it at all and remember every conversation and felt no different then when I walked into the hospital. At one point I was so scared and freezing that the docs had to tell me to try and lay still. I told them I was scared to death and freezing and the meds sucked. They gave me a little more which helped my shaking a little but was still completely normal.
After the angio my head hurt and my leg. They would not even give me Tylenol. They told me if I had some I could take it but they don't provide it. I should have known then to look elsewhere for a different hospital.
Lol.. My sister would agree with you. I like being put under, even when it's just a little. It makes me giddish and it's the only time my pain doesn't bother me. I like having no cares in the world. Hee hee.
I'm sorry you had such a bad experience. You must have had a bad anesthesiologist. I can't believe they wouldn't give you tylenol. What's wrong with them? I've had them done at three different hospitals and they always knocked me half out for it.
By the time I got to read this, you probably already had your angiogram. How did it go? I hope as good as mine where! Let us know!