Brain avm open surgery

oh goodness really hope she improves :frowning: wishing her a very speedy recovery.

Hi jg200
Best Wishes To You For Your Surgery I Will Be Thinking Of You.
Please Keep Us Up Dated.
Crystal

Hi its going to be one year since my brain bleed tommrrow dec 17 It took me 2 months to get out of the rehab they said I will never walk again IM WALKING I DONT NEED ANYTHING TO HELP ME WALK THEY CALL ME A MIRACLE I HOPE THIS HELPS AS LONG AS YOU HAVE GOD IN YOUR LIFE YOU CANT BE STOPPED!

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Hello jg, My surgery was in the MCA area and was small about a cm with a small 'annie' attached in 2007. Suppose to be easy in and out and it was. I am grateful to have had it found by accident and obliterated. Went in on a Thursday a.m. and home by Sunday. Was lucky to have family/friends with me as they helped me the first few weeks. They took care of the medications and scheduling. It was good to have someone near the first few days to keep me steady and not falling. Had to take things pretty slow or I would get dizzy at first. Within a week walking around the block, slowly and with someone. So having someone paying attention the meds and house stuff was a huge plus that first week.

I had to watch about getting to overwhelmed with 'things'. Seemed all my senses were heightened.
If their was a disaster somewhere I could hardly stop crying for the sorrow I felt for those lives lost. I couldn't shop for there was to much stimuli, to many things on the shelves to look at and figure our what. Noise was to loud. To many people in the room. To much talking. I learned to refocus and that helped me recover and taking things one at a time not a two or three. You may have to give yourself time to get back to normal but you will find your way. Or you may sail right through. I am so glad that I had it done as I did have choices.

Any questions keep asking as it really does help to know as much as you can.

Bless you!

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I had a craniotomy on 5-19-14 after having had a brain bleed (hemorrhagic stroke) on 4-8-14 due to an AVM. The surgery took a total of 5 hours. My AVM was located in the left frontal/parietal lobes of my brain. I went from recovery to ICU where I stayed for 24 hours post-op then went to a neuro floor for another day, then home. My surgeon estimated my stay would be 4-5 days, however I was very uncomfortable in the hospital and asked to come home. My husband was with me for the 1st week post-op and both my daughter's came daily (one daughter is a physical therapist and the other a nurse). I had a lot of noise in my head (sounded much like water running), and pressure in my head at first. I was uncomfortable in the hospital because of all the noise (I still have difficulty with too much input) and my roommate on the neuro floor was hard of hearing and ran the TV all the time as well as being on the phone for hours on end! I slept a lot after coming home, continued to have noise within my head and a feeling of extreme pressure. I didn't have any pain to speak of from the surgery. I feel that everyone has a different experience based on the location of the AVM as well as different personalities. I will pray for your complete recovery and be thinking of you. From my perspective I had a total knee replacement in 2012 and as far as pain, the brain surgery was "a piece of cake" compared to the knee surgery, but of course the brain is much more involved and post-op recovery takes time. I continue with speech therapy to date (7 months post-op) as well as tiring easily, anxiety at times (which has improved drastically) and have had to learn to cope with short term memory deficits, but each day gets better. Life is good and each day I thank God for blessing me.

My son who is 11 had his AVM removed just over 4 months ago. He was out of hospital 3 days after surgery and only needed panadol for the pain. He still gets a little dizzy and tired. He also is more emotional which is normal after such a big scare. Good luck with your operation

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And it was the size a golf ball so not a little scar on his head god bless.

I just wanted to say that I’m getting an open brain surgery to remove my avm from my left temporal lobe in January and I’m sooo scared. I obviously don’t have any hospital time advice, so I’m with you and this was really nice to read everyone’s responses. I’m 25 and my rupture happened in august right before my birthday. I have been miserable and in pain ever since then. Did you experienced a rupture?

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Hi TLo yes my avm was discovered when i was 17 years old while i was playing hockey i collapsed and told a bleed im 23 now and to date i have 3 haemorrhagic strokes. so i think we both probably feel the same way i sent u a friend request i would like to keep in touch as we r both of similar age and im sure have all the same worries and concerns.

yes lets defintely keep in touch! We can both give eachother information on what we go through, especially since we are doing the surgeries around the same time. Good luck and let me know if you learn something else in the meantime and I will do the same :slight_smile:

were abouts r you from by the way ?

Ohio, united states

Hi I was in at the same time of the year, you will be ok, your life can only get better

I was scared too. I was in the OR for 14 hours, in the ICU for 3 days, in the hospital for 2 weeks, and I have been enjoying a wonderful life for 14 years since.

My advice is to try not to let it bother you right now. Enjoy the holidays! Go to your favorite places, hang out with your friends and family, think about the Christmas ham/turkey, and the presents! Do your favorite things, have you been to Paris yet? What have you always wanted to do? to go? to be? Spend every day well :) there will be a brief pause in the new year, and then you can get right back to doing the things you love in the new year :)

Hi jg200,
I had an AVM on my right frontal lobe that was discovered in an MRI after I complained of headaches. I didn't even mention the bad dizzy spells. It was a surprise when they found the AVM. I didn't even know what that was at the time. I had two embolization's and then the surgery to remove the AVM. After the surgery I was in ICU for a day and on the floor with the main population for two days. Then home. I did require someone watching over me and caring for me at home for a few weeks. Recovery was very slow, but we'd been told it would be. It has been about a year and a half since the surgery. I still have a numb spot on my head where they removed the bone, but the doctor said that would gradually go away. I am doing remarkably well considering everything. Just roll with the flow and take it easy afterwards. Try not to think too much about the coming surgery. That is the worst, the waiting. Just try to enjoy Christmas and before you know it everything will be over and you will be recovering. As my doctor told me, enjoy being pampered for a while. Good luck. Keep your chin up. And Merry Christmas. Leave the rest to God.

thank you for ur message trying my best to focus on christmas :)

I was in hospital for 3-4 days and took time off work to recover which was near 6 weeks but had to wait 3 months to feel normal again...try and be mobile as the more you lay down the harder it gets...BUT dont over do it and dont start going out places...i mean be mobile in your home get up and go to the kitchen etc etc.

Its a long road to recovery, i wont lie but stay positive as surgery isnt supposed to be easy...I have yet to see anyone mention they were looking forward to their brain surgery...its hard but try and be strong and know there is light at the end of the tunnel...keep us posted & God bless!

It's hard to say what you will experience, but here is what I experienced:

Had my surgery on a Weds (june 18) and was released Friday afternoon. The worst part is, I was nauseaus the entire time I was in the hospital. Coming down from anesthesia, I was sick but never threw up. My surgery was 8 hrs and I think my first question was "What time is it?" They put me out at 11:00, my surgery didn't start until 1. I was done at 9 I think. They woke me up at 3am for a CT scan. Here's what else I experienced:
- For the first 12 hours you cannot sit up. They made me stay on my back in case there was any air pockets in my skull
- My head was so numb and sore for the first 2 weeks. Morphine did not help.
- They place a breathing tube down your throat, therefore my jaw was sore for at least 2 months
- Fogginess for 5 weeks
- No washing your head bc you can't get the staples wet. I washed part of my hair in the sink but was still a hot mess.
- I wasn't able to feel the part of your head where the staples were for at least 3 months. Don't worry! It's completely normal! I finally got feeling back within the last week.
- I hear random clicking noises in my head (right now) all the time. It too is normal.

I thank God for my Dr's and nurses. They rocked. After my staples came out (which you can't feel at all) I went back to the hospital with a thank you basket of lollipops to the two floors I stayed on.

I wish you all the luck in the world. It's quite an experience and you are very brave. Not many people can go through what you will be going through. I will be thinking of you next week.

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Hi silverbeach and I remember welcoming you. Good for you in sharing your experience with jg200. I wish you a magical holiday.

hi silverbeach thank u for leavin me a message I really appreciate u going into so much detail and telling me all the things that the docs maybe dont tell u. im incredibly scared so its nice to know people here r supportive.