I wanted to see if I can get some insight and/or testimonies regarding the recovery process.
My Mom suffered from a Cerebral Hemorrhage due to an AVM On April 15th. The doctors were certain she was not going to survive the initial attack but she defied their expectations and is still alive. The doctors ‘coiled’ two of the affected veins on April 16th and told us they could treat the remaining veins if she were to recover and wake up. However, the neurosurgeon told us that her chances of recovering from the attack were slim to none. After the attack and the ‘coil’, she started to move her left arm and left leg regularly and would respond to some commands. On April 25th we met with the palliative care doctor. She gave us all the information they had and gave us her professional opinion on the matter. She also told us that they don’t have much hope she’ll make a full recovery and even if she did they weren’t sure what kind of quality of life she’d have. We decided to wait to see if she recovers after more time. On May 1st the doctors performed a tracheotomy and on May 3rd they removed the respiratory machine all together as she is able to breathe on her own now. On May 7th they removed the drain from her head once they were sure that it would no longer affect the pressure in her head. Yesterday May 9th they moved her from the ICU to a step-down unit and they’d like to move her to a rehab center soon. At this point, we’re pretty much waiting for her to progress, if she will at all. What’s worrying me now is that she isn’t moving or responding like she used to. She’ll still respond to some pinches and movements but it is significantly less noticeable than how she responded a couple of weeks ago.
I wanted to hear some testimonies from other people that were/are in a similar boat. How long did it take for the patient to recover? Did they recover? Were there serious doubts they’d recover at all? Did responsiveness slow down before recovery? Or did they never progress? Some people have told me that 3 months is normally the max wait time and that if they don’t make significant improvements by then it’s likely they never will. Any insight would be greatly appreciated.
Welcome to our community. It is good to have you with us. I’m sorry to hear that your mum is so poorly.
I think the honest views that I have (having been here for 1.5 years or so, and I do mean views) is that it is very difficult to know whether or how much she will recover but if she does, it will more than likely take a very long time. I also hold the view that recovery is not a straight line and it may be reasonable to see some regress from time to time. I don’t know if that is to be worrying or just to be expected. I think to some extent it should be expected and although I’ve never had a bleed, I’d say my recovery from an embolization has not progressed regularly.
A couple of months ago, I watched a film on BBC about a patient recovering from a stroke. Again, whether he would recover at all was in question, how long and how much he would recover was also in question.
The link to the BBC video may not work in the US but in my thread above is another link that may work.
The beginning of the film, I have to say, is quite distressing to see a person so deformed but if you can access the video, I promise it will give a fascinating view into a retired or semi-retired gentleman’s recovery from a massive stroke.
I am also convinced that stimulation by relatives and friends is vital.
Don’t give up hope
My daughter suffer a massive bleed from ruptured avm and was not expected to live ( the doctors talked to us about switching off life support )
Well she awakened but progress was slow and I guess we all quietly whether are prayed for her to awaken were answered but at what cost – was my daughter going to be trapped in a body that would never recover and was her brain so badly affected that her quality of life was zilch
Well slowly after going through stages from baby like to childlike etc she slowly but thankfully regained her self
I’m not saying she is back to " normal" and still has paralysis on her right side sight odd to right vision in both eyes and brain injury but we have her back
It’s wonderful as every day is a bonus we laugh we cry but best of all we love each other so very very much
So please hang in there the signs may be small but they are still signs of hope
Wishing you and your family the best and remember you may not get your mum back as she was before but each day is a step in the recovery progress
Love and best wishes
Jenny
I had 3 months recovery till things started to look normal. Even after that went to physical therapy and occupational therapy 3 times a week for some time. Even after you look physically healthy remember this is the brain that is damaged so short term memory loss is the biggest struggle. To this day it’s the biggest struggles but as long as I keep my notes on my phone or timer things are more simple.
It took me 3 months to lift my left arm above my head or even begin trying to walk with a cane it took me almost a year before I could do math or write anything is a very slow process but if you make the effort you will see progress just very slowly.
She just needs to stay strong and keep fighting!
Hi Jose,
I’m so sorry to about your mother. You will find support here. It’s frightening & the “not knowing” can feel overwhelming.
After our young daughter had her AVM rupture we had so little information & were frightened by the research that we did. We were also told 3 months, but that has not been the case at all.
Each brain injury is unique & recovery is unique to that person which is why it is hard to know what the norms are. I cannot advise you on how or if she will recover.
A little over a year on I can pass on what we have learned.
Time. Patience. Love. Support. Time. Acceptance. Resilience. Love. Humour. (Repeat).
It sounds flippant but these qualities will be what you need-plus time.
There is no linear line to improvement or the grief. Your mother will have good months, bad weeks…try to take the long view.
Cherish what remains & build out from there.
I send my love to your family.
I sure hope that your mother shows some improvement soon! I know that brain injury recoveries can take a long time and are unpredictable.
Jennybaker, how long did it take for your daughter to “awaken” after her AVM ruptured and where was the AVM located? I have been following this board since my daughter’s 31 year old sister-in-law suffered an AVM rupture in her brain stem last September. Her family was also encouraged to turn off life support after emergency surgery but they did not agree to that. It has now been 8 months and she is technically “awake” I guess and breathing on her own through a trach but only responds to therapy minimally, at best. She does not track with her eyes and has no responses or voluntary movements of any kind. The family is still holding out hope that there is a chance for improvement but the doctors say it is unlikely. I keep waiting to read a post that might be encouraging in this particular situation. If recovery can happen for one person it might happen for others, right? Thanks to everyone who is willing to share their experiences on this board!
There are so many variations on recoveries that even the best doctors can not determine on how long or to what extent recovery will be after an avm rupture but gaining support and encouragement from others who have gone through similar situations helps us learn more of what to expect
My daughters avm was in the basal ganglia region she was a perfectly healthy 44 year old ( no headaches no nothing ) when her avm decided to rupture in doing so it changed my daughters life and the lives of all who love her upside down forever. We had never heard of avm’s before but my mate dr Google has taught me a lot ( you can obtain some useful information ) I have gained a lot of knowledge from this group too because these are real people going through the same pain as you
My daughter was in a coma for two weeks they tried to rouse her at day 12 to no avail
The night of day 14 she roused enough to open her eyes
From the on it was a slow process about another week in icu then ini high dependency ward then transferred to rehab
All in all it was 5 months before she came home
We don’t know what her future holds and if she will regain the use of her right side but she’s alive and has her cheeky spence of humour and it’s made us all to appreciate what we have
Your sister in law is young and that was one thing the doctors told us frequently that younger patients stand a far better chance of recovery and that younger brains find other pathways easier
I wish you all the best and hope that your outcome is as good as ours xxx