AVM brain surgery in 4 days...trying to stay calm

I’ve spent the past few months recovering from a ruptured aneurysm in my cerebellum and now its time to deal with the AVM. My physician gave me the option of radiation or surgery and I chose surgery because I didn’t want to wait up to 3 years for it to obliterate. Now I’m trying my best not to stress out about the upcoming surgery. I can’t help but second guess if I made the right decision (I’m sure I did) or stop worrying about the outcome and recovery. I appreciate any help on getting through the next few days.

Thanks,

Renee

Hi Renee, sounds like the waiting will be ending soon! I know how the days drag as it leads up to treatments, in my case gamma knife. I went gamma as it was the better option given the location of mine, now I’m 48 weeks since and counting the days! I know the waiting is difficult, it was for me leading up to treatment, and now. As I was waiting for gamma I tried to do everything per normal, but that was difficult. A good book, walks and a friendly ear to speak to did help me. Will be thinking of you and can’t wait to see the updates! Take Care, John

Renee

Very best of luck with it!! You’ll be in very good hands.

There is nothing to doubt once you’ve made your decision. I completely understand the decision to get rid of the monster sooner rather than later. So… don’t continue to doubt yourself. It was your decision based on the expert opinions given. It’ll be the right decision.

You’ve already been through a ruptured aneurysm so you know what that’s like. You can get through this just fine.

I’d say keep busy. There’s nothing to do between now and going in other than be packed, nicely hydrated, relaxed, know how you’re getting there, so if you’re kicking your heels and thinking about it a bit too much, find stuff to do. It’s like doing boring homework… all of a sudden other things round the house that you’ve never got round to could get done, maybe (as long as they are not big undertakings or too much to do) but might keep your mind busy. I’d say find stuff you need to use a bit of thought about as well, not things you can do and let your mind wander.

Let us know when you’re going in and when you’re safely through the other side.

Very best wishes

Richard

Thanks Richard! I think I’ll take you up on your advice and try and stay busy. Besides there are a few things around the house I need to get straight before I head to the hospital.

I made the same decision after a rupture in my right occipital/parietal area.
I already had damage from the rupture so I wanted it out and not have a chance of another bleed.
yes it is very stressful but you will get through it.
as my neuro surgeon told me when I was having second thoughts “the benefits of a successful surgery outweigh the risks”.
when I woke up and he told me it was gone it was a huge weight off of my shoulders.
then I could quit worrying about “what if” and get on with rehab from my earlier rupture.
stay strong; you will get through this!

Thanks Mike, I appreciate the encouragement!

Hi Renee

As other posters have said, whether its getting lost in a book/audiobook, binging on a series you’ve been meaning to get around to, light household tasks, going out for dinner/lunch with loved ones, a good natter on the phone with friends/family, baking some comfort food, having some retail therapy or tlc time - finding ways to distract yourself whilst at the same time making sure your body doesnt get tired out I think will help lots too.

Sending my wishes for a swift recovery your way,

Corrine

Good luck!

I know its hard but try and stay positive and have a good outlook on things as it will help you get through this stage of your life… Only you know the answer whether or not you made the right decision and if you chose surgery then your heart has made the right choice for you… keep in mind your not the first or last to undergo this surgery in the world… so many of us have had it and we are all here today to assist others through this stage of their life… please keep us posted on the surgery… God bless!

Hi Renee:

Whatever decision you made is the right decision for you! Stop second guessing yourself. The AVM in my cerebellum ruptured in 2014 and the only choice I had was Gamma Knife. Yes, it is a long process and in April, 2018, I will have reached my 3-year mark. Anxious … you bet. We are all anxious. I pray that you have a successful surgery and recuperation. My recipe for you is “P&P” (Prayer & Patience). God is there for the miracles and your job is to trust and believe. Best of Luck.

Sharon D…

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Thinking of you Renee, hoping it went well. John.

Hoping all went well. So anxious to here of your outcome.

After several weeks of waiting my AVM had been completely removed. Everyone on this site has been amazing! You’ve helped me get though some rough times by encouraging me to stay strong or praying for my surgery.

I went into surgery on Monday morning and home on Thursday. I remember having a ton of questions , in fact I think they put me to sleep in the middle of my question about how they planned on flipping me over to the prone position to do the surgery. The AVM was in my Cerebellum and my surgeon said once he opened up my skull my AVM was staring right at him. As a result he didn’t have to go and find it, so I have no deficits. I have a bunch of staples in my head and some in-home physical therapy, but other than that, most of my energy will be focused on recovering from the brain bleed I had over the summer.

I’m so grateful to still be here and grateful for this site.

Renee

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Good to here your surgery went well. Let us all now how your doing with recovery.

Renee

It is great to hear from you! Very best wishes for a full recovery! Well done!

Richard

Fantastic Renee, I’m so happy it went as it did! Made my day! Take care, John.

Renee:

I am so happy that you had a successful surgery! I love hearing good news on this site because it forces me to stay positive and keep moving toward total eradication. Your good news has given me hope. Thank you and God Bless.

Sharon D…

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Renee

So happy to hear back from you and hear your surgery went well! Let us know how recovery goes and how you get on in general :slight_smile:

Im sure your story will help/has helped many people get through their AVM journeys too. This sure is a wonderful place for support and sharing experiences - we are very lucky to be in the online age :raised_hands:

Thinking of you and sending positive energy your way,

Corrine

@rhm15 Could you tell me who your neurosurgeon was? My 9 year old son had an AVM rupture in his cerebellum on December 3rd, 2019. It has been a long 3 months but he has made an astonishing recovery! He is fully walking, talking, and eating on his own. Doctors at first told us that it was operable but they wanted to wait a few months for his brain to heal and settle down, so they had scheduled an angiogram/embolization and surgery for the beginning of February. So in February they did the angiogram and said that they were only able to embolize about 60-70% of it and needed to do another angio/embolization before the surgery, so they scheduled another angio and surgery for last week (beginning of March). He had the angio done on Wednesday of last week and everything went well and they said that they were able to get it about 95-99% embolized. While we were recovering, our neurosurgeon came in and said that he did some research and saw that the mortality/morbidity rate in an AVM resection in the posterior fossa and cerebellum was about 20% which was more than he originally thought, so he started to tell us that he thinks we should now search for a neurosurgeon that has more experience with removing posterior fossa/cerebellum AVM’S and cancelled our surgery that was scheduled for last Thursday… so now we are heartbroken as we thought that this nightmare was finally going to be over and we would be recovering and moving past all of this… :frowning: Can anyone suggest any neurosurgeon in the US that they know of that have successfully removed AVM’S in the cerebellum? We are desperate! Thanks so much!!!