I have had 3 bleeds from a cavernous malformation in my brainstem. My doctor and I have agreed that surgery is the best course of action and we have set a date for March 9th.
This seems so far away. It's odd that I simultaneously want to just get this over with, but at the same time take pause. I'm nervous. I'm scared of the outcome. I'm trying not to think of what could happen, but focus on what will happen. The result I plan for is to be rid of this malformation, never have to worry about a bleed again, and to provide for my family for as long as they need me.
I don't know if it will help anyone, but I've written about my story, and will continue to do so as I have surgery and onto my recovery. If you have any advice, can find comfort in my story, provide strength to me and my family, or take strength from watching a community rally (which I am blessed for the support) - I hope my story will help: http://goodness-to-go.blogspot.com/
Dan, I now have you on my prayer list! Thank goodness for our Barbara..who sends great information for those who need it. Stay strong and stay positive, Dan...Please keep in touch with us!
hi there, GKR or embolism? I would try not to worry. Simple terms, but the percentages are very high for a great result, from many off people. Ive had 2 doses of GKR myself - i tried not to think about it. whatever will be, will be........
I too had surgery to remove my AVM,which I think, was in my small posterior fossa, I'm asking my neuro-surgon again tomorrow.
Anyway, I am and was 42 when I had my surgery. I am not in the correct age range to get much good information about my recovery. Most discover their AVM much younger or older than I. Also, I was and am in excellent health. My advice to you is to get into as good health as you can, if you aren't already. You will come away with some side-effects and if you are in good shape before-hand, then you will be one step ahead of the game.
My side-effects. Firstly and thankfully, I only have one. Double vision. I am greatful that it is the only one an all my Dr's say it should self-correct with time but it is a bitch. I see a neuro-opthomologist who has the bed-side manner of a snake and I think he is a douche. He says he will fix it no matter what. A very important thing to remember is that everyone recovers at different rates. Some faster than others. I have a hard time remembering that. Balance is another issue because I bled into my cerebellum, which, I think controls all visual skills. Once you're vision goes, everything else is screwed. Walking helps a lot and I listen to "Dead Man's Rope" by Sting from "Sacred Love". It's a bit depressing but give it a try. Good luck and God Bless.
Dan, I really appreciate the humor in your story. That is what will help you more than anything. I honestly believe that laughter speeds the recovery process. My thoughts and prayers will be with you and your family!! The good news is that with two little ones at home (adorable by the way!!) you will not have too much idle time. Keeping busy really does help!! Godspeed my friend...
Thank you so much for all of the well wishes and advice.
As I have a Cavernous Malformation as opposed to an AVM - the course of action is to perform a craniotomy and then physically remove the CCM from the brainstem. My doctor thinks the potential side effects will be similar to when I have had a hemorrhage which has been numbness on my left side, double vision, and some weakness. I'm trying to stay on the positive side of things and say if I do get any of those side effects, they will only last briefly. Then back to business as usual :)
I'm trying to relax as best I can here and take it easy. I just keeping thinking about March 10th. The day AFTER my surgery. My new beginning.
Anyways, thanks again. You are all helping! Thank you.
Hi Dan, My heart goes out to you & your "cookie baking!" ;) family for the fears & anticipation you're going through.
I have multiple cavernous malformations & have had 4 surgeries. My 4th surgery of 3/9/10 was in the right thalamus, which 'sits' on top of the brain stem.
Especially with your CM being so deep, your fears for the unknown are truly understandable & I strongly encourage you to discuss at length any of your concerns w/ your drs., so that they can best address your concerns & you can have an idea what to expect.
Surgery dates feel like an eternity away, but it will be here before you know it! So in the meantime, try to relax as much as possible & (within any limits) find pleasurable activities & be extra kind to yourself. :)
Take care & please keep us posted as you are able.
Patti
Wow! Your story is so similar to mine. I had a CM as apposed o an AVM in my brainstem. My doctor had to fight with other doctors as they said it was in too sensitive an area to operate. Apparently I would have only lived a very uncomfortable max of 2 years.
After my bleed I was in hospital for a week and then sent home for a week before the op. Unfortunately I bled again in that week. I had a very successful craniotomy. My bleed went into my cerebellum so my balance is quite bad but getting better every day. I lost all hearing in my right ear. My right side is a bit 'off' and the right side of my face is paralyzed. All of this is a result of the bleed though and not the surgery.
After the surgery I had to relearn to walk and swallow, I was relentless and this took a matter of days. I go to acupuncture every second day for my face and my fatigue which you will find knocks you harder than anything else. It has been three months since my surgery and each day I am so thankful to be here. Its tough but it makes you a stronger person. I feel like my life is now getting back to 'normal'. I can now do pretty much everything I did pre-bleed.
I hope my story helps you and your family. As I said its not easy but a strong home and family life helps recovery happen faster. Good luck Dan.
Thank you Candice, I'm so happy to hear that you're getting back to "normal".
When you had your surgery, what was the immediate period after the surgery like? Were you in a lot of pain? You mentioned being fatigued - what was that like?
There was no pain post surgery, they kept me quite sedated I think. In retrospect I think I actually felt a lot better then when I went in. The fatigue happens with most injury to the brain. It’s the brains way of healing. It got frustrating when trying to get back to life but the rest is necessary. It’s a lot better now and as odd as it may sound I do believe the acupuncture has been amazing for my energy levels.
Approaching surgery I suggest you have everything done and in order at work and home so that you don’t have any “to do’s” when you should be healing. I’m sure your wife has already done her research but be sure she know what to expect and what she can expect from you post surgery. For a few days after the op I needed to be bathed and help even brushing my teeth. It sucks but does not last long. If you have a strong will your recovery should not take long. You will be useless to man or beast for the first week to month but it will pass so use the time well to rest otherwise you will just hamper your progress. Don’t get stressed about the op though. You won’t feel a thing as they keep you so well medicated. Stressing never helped anyone anyway;)
I really hope it goes well. I just wish they could do it sooner because bleeds are so dangerous. I don’t know what you are suffering with as a result of your bleeds but I know you can’t be comfortable. The op is scared but it is only for the best.
I’m so afraid of not being able to swallow. How do u get thru that. I’m having a craniotomy in 2 weeks for my AVM in my vermis celerbellum. I’m a wreck but sure trying not to be.