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AVM Survivors Network

Questions for those who had a Craniotomy for their AVM

Hi!

I am writing again and have about 90% decided to have the craniotomy to remove my small AVM. (waiting on a 2nd opinion to come back). My AVM is located on the left uppper cerebellum. Anyway, my surgery date is April 20th. The doctors decided on doing it all in one surgery. (no embolization because of location) My questions are for those who have had this done.

What are some things to expect after surgery that you were not really warned about? I have had all the risks given to me.....which makes me nervous. Are you really only in the hospital 3-5 days if all goes well? What things can really go wrong? Anything I need to buy or bring to hospital that I might need? The doc showed me where the incision would be. Gosh.....it is a lot larger than I thought it was going to be.

I just need to hear from some people that have had this done!!!! Thank you so much!!!

four_r...Yes, I had a cran 7 years ago. Mine was not to remove my AVM, it was because I had a hemorrhage. Even then, I was only in the hospital for 8 days.

From being on this network for so long, I've heard of many, many successful stories about having a cran to remove their AVM's.

What you need now is to have faith in your neurosurgeon and for you to stay strong & positive.

We are here to support you during your journey...

Hi Four_r , I think I mentioned this in my last post reply to you, I had a Cranio for both my rupture and my removal, The first was for the bleed and I was in hospital for 14 days, The hardest thing about it was trying to get a good sleep, as you can imagine the hospital is a place where you get looked after and get better, not sleep as it was a large haemorrhage they had to check my vitals and also memory functions often. The second cranio was for AVM removal and I was in the hospital for 7 days this time and again the only issue was the food and sleeping, But other than that it went great for me. I agree totally with Louisa, Keep the faith and stay positive. There s no point in worrying about things you cannot change or control, this is just wasted energy :) , Take care and hope all goes well.

remember also these risks are always worse case scenarios and they are just making you aware of them, You must be sure in your own head that everything will be fine :) .

Hi Four_r......................inspite I myself being an AVM suvivor and heard and made lot of complaints about wanting to know how to be make myself ready for the AVM battle.....i still stand by my belief that sometimes ignorance is bliss........JUST TRUST GOD and he will make u swim thru this. Only important thing is you need to be in the hands of good doctors and the rest of the battle will happen at its own pace. IT MAY SOUND LIKE A STUPID ANSWER which did not give u any info but thats the hint......u shud not know anything more than just the medical procedures of being in safe hands...thats it...rest of it will happen......Stay positive and meditate through this...my best wishes :) (My Right frontal AVM was removed through Craniotomy 14 years ago in April 2001)

Cheers
Santhosh
Bangalore India.

Hi, Hope you had a happy Easter. I had my cranio about 14 years ago. I had a whole year to decide what I wanted to do after a rupture. I chose surgery because the thought of having another rupture was just too scary, and painful for me. That headache, the worst ever. What I had to deal with the the rupture showed me what I could deal with(nystagmus, diplopia, and ataxia). There were no guarantees these things wouldn't happen again, or that things would not get worse. In my situation, what I experienced with the rupture occurred again but as much as I have improved I am left with deficits. I feel very fortunate because I have compensated. I have left sided weakness but I can drive and walk without a cane. I suppose I could run but I choose not too because besides making me a little nauseous, I never was much of a runner. lol
From what I can remember, I was in the hospital for about 5-6 days. I was doing in-hospital rehabilitation through a new program which was introduced on the ward. So, after about a month of in-hospital rehab, I got to go home. Still did some out-patient rehab, about once a week for about another month. What I asked for when I was in the hospital was pencil and paper so I could draw. My sister gave me a voice recorder in case I felt like doing an audio diary...I'm not much of a talker. I really didn't need much in the hospital. After doing occupational and physiotherapy exercises, I was just exhausted. I pretty much just wanted to sleep. I have a scar on the back of my neck which can be seen when my hair is in a ponytail.
I am grateful for all the medical staff, family, and friends for their help in my recovery.
I wish you much courage in the decision you make and the most successful outcome from that decision. Take care.

Thank all of you. I am feeling a lot better about this and have decided to quit researching and reading all of the things that could go wrong. I am at a wonderful hospital (Mercy) in Oklahoma where they study this stuff all of the time. They fixed my aneurysm with the catheter method by coiling it. It was a very tricky surgery, but they studied it and talked with other docs about it. I came out of this surgery with no problems. It is a different doc doing this surgery since it is a craniotomy, but he was on stand-by during my other surgery in case it didn't work and he would have to clip it. I am a miracle at this point and have faith that this will go well also. I appreciate all of you letting me know what has gone on with you. I will be sure and keep you informed on how my surgery goes. It is now scheduled for April 20th!!
Blessings to all!