Looking for some kind answers

Hello !

My mother suffered a burst brain aneurysm 08/21/2020 due to COVID I haven’t had a formal meeting with my moms doctors and it has been very hard communicating with them. But I finally had a meeting just a few days ago. I learned my mom had a right PCOM aneurysm, she had a stent and coils. During her ICU stay, she was in a coma for 26 days. She had Vasospasms due to this she had anoxic Injury ( ischemic stroke) on the right side. She did have a craniotomy and we are still waiting for cranioplasty. My mom is currently in rehab facility, but she’s not able to walk, sit or eat on her own, she is able to talk slowly and seems to be understanding everything. Has anyone had anyone had any recovery experience when someone suffers both an aneurysm and ischemic ? I just want to know what I should be expecting in the future in terms of her recovery, has anyone recovered from a similar situation? I want to know how best to help my mom. My mom is 46 years old, and her neurologist doesn’t really know how she could recover, and what disability would be permanent. Her doctor did explain her recovery would take a long time. Any thoughts on this particular situation I would highly appreciate it !

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Good Morning reynosl22! The pandemic sure has effected a lot of folks with family in hospitals. Unfortunately, no one can say exactly how your mom will recover, we all are different, especially in the way of brain injuries. I vasospasmed for 21 days following my ruptured aneurysm. The doctors all told my BH not to expect anything if I survived. No one knew if I would be able to talk, walk, recognize anyone, etc.

They were very excited not only when I woke up but was able to identify my BH and a promise made years prior to my rupture. I couldn’t remember how to walk. My brain knew it was supposed to send a message but all I could do is stare at my feet. BH started singing the Christmas song “Put one foot in front of the other…” I was able to walk around the Neuro ICU.

For me personally, music has had an extremely positive effect, “The Soldier and the Oak” quickly became one of my favorites. https://youtu.be/rJTCKol8VFU

The Neuro RNs taught me how to use my phone to listen to music, also to text, accept calls, etc. They were kind enough to move the tower so I could keep it charged. Each and every day I thank the Higher Power that gave me such wonderful RNs and Doctors, without them I wouldn’t be here.

Whilst I was at University, we were taught that the brain couldn’t recover from brain damage after age five. In fact my wonderful surgeon, Dr. Stacey Wolfe, even said my brain had healed all it was going to. She doesn’t mind when I say no, no, no (I often repeat words in 3’s). I had training a week or so before my rupture and I had learned that Dr. Bruce Perry out of TX had a significant, ongoing study in which it shows that no matter our age, our brains can still heal. This study gave me Hope and I was able to pass that on to Dr. Wolfe. She is a remarkable woman and physician!

Dr. Wolfe hasn’t given up on me either. She recently (Dec 18) put a new type of stent in and recoiled my aneurysm. It is procedure #4 for me. I ruptured in 2013. The Neuroform atlas stent was just approved by the FDA in 2019. WFBH had put in 100 for ischemic patients, prior to my procedure.

With all that there are some lingering differences in my personality. I talk a lot. I used to be very quite and just observed everything and everyone, now I can’t shut up. We call it my “chatter box”. Many of our members, myself included have photophobia, in which light, especially bright light gives us painful migraines. Loud sounds can also have a negative effect. My hearing actually “significantly improved” according to my last hearing test. I can hear things my dogs can hear, so loud sounds effect my words and tremor. My tremor doesn’t effect my quality of life, so I choose not to take medicine for it.

Some folks can have extreme personality changes to the point they are dangerous. A lot of us here in our group have difficulty with a lot of stuff, we get overwhelmed. One of our members @ronk, did a post several years ago on getting our homes organized and neat. It was a great post and I hope our members can still find it. Many of us have aphasia, in which we lose our words. Sometimes we can give words that describe what we are trying to say, but can’t find the exact word we want. If someone tries guessing for us, it can shut our brains down.

As Merl often says, this isn’t a broken bone that can heal in weeks or months. Brain damage takes years to heal. The brain has to develop new pathways for information to be processed. Be patient.

I hope other members will share the hurdles they have battles with as they are many and varied.

All the best for you and your mother,
Moltroub

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Hi, so sorry you are dealing with this, me too in most areas but to be positive I was given at 2% chance and not much hope given. I’m permanently disabled and blind left side of both eyes but glad I can walk short distances and talk and type * which I had to learn post SAH. So frustrating to hear dozens of maybees, mights and IDK;s and no guide book or warnings! Prayers for you all tc stay the course to recovery no matter how long or how far we get, i’m 11 yrs post. Heard your song Moltraub, excellant! Keep trying new things too, see what works for YOU!

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Hey Lilli,

Honestly, everybody’s injury is different and the same with their recoveries. There is no set measure when it comes to brain injuries, so trying to gauge your mom’s outcome is near on impossible. Personally, I have required a few neurosurgeries, including a craniotomy, and no 2 operations have been the same in outcome.
Big, HUGE, MASSIVE + in regard to Moltroub’s suggestion on music therapy. I couldn’t manage much post surgery, but I could listen to music. It took me outside of myself, outside of the constant thumping headache pain, it gave me something else to concentrate on.
I also must agree with Moltroub about brain damage and healing, but I must also say here that there is a process known as Neuroplasticity, where differing regions of the brain can be trained to take over ‘some’ of the processes of areas that may have been damaged. BUT, this can take time and lots of repetition. There will be good days, there will be bad days and there will be OMG days. And those days can fluctuate wildly. I can be OK today, but tomorrow find I’m bedbound in agony and sometimes that ebb and flow can be hourly. This recovery thing can take a LOT of patience from all involved. As difficult as this maybe for you to deal with, please remember it can be 1000 times more difficult for your Mom. All you can really do is be there for support of her when she needs it.

We are here if you ever need to chat
Merl from the Modsupport Team

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I know we’re you are, I am now 12 years post crazy, 4 clips, one large blood clot at the base of my brain. I was in a coma for about 11 days, and remember one thing when we are in this state, we hear everything you tell us. We just can’t talk back.
The road that you are going to have to take, is a very slow one. The first thing you need to do is get the home ready from when your mother comes home from the rehab facility.
This is have a hospital bed in the house, you might have to place it in a different room than the bedroom. My wife set mine up in our family room, be peppered for a while that your mother will be coming home in a wheelchair, so we’re you place the bed is the most important part of taking care of her, the bedrooms are to small to do a lot of things that you will have to do to care for her.
Have a place close to the bed, we’re you can get the wheelchair to, try to make it easier for the home health people when they come in. Like the physical therapist needs to keep working with your mother so that she can work on walking again. There are going to be a lot of tears during this process, but please don’t get frustrated. Also have a walker, a couple of bed pains, pads for the bed, makes it easier to clean up after an accident, and whatever you do please don’t yell at your mother or at yourself we’re she can hear you. We feel bad enough that we could move fast enough to not mess up the bed.
I came home from the hospital after 4 weeks, I could not walk, barley could talk, could not read or write, didn’t understand even how to turn the TV on.
I am still not recovered 12 years later, it took me 6 months to learn to walk again. It took me about 18 months to learn to read and write again. I still have trouble with the basic part of our language, I don’t remember what a verb, or a noun, or any other parts of English it’s difficult right now for me to write this.
When your mom starts to get better the best way to start learning to read and write is with crossword puzzle, start on the lowest level that you can find, look in the children section of books. I still can’t read a book to this day, because I forget the first part of the chapter I just read. Short term and long term memory will be the last to come back if it even does, but please never give up hope, it takes the brain a long time to heal, this will not happen overnight.
The other thing is if you have any brothers or sisters they must help you or you will be burned out in 3 months.
I just came back from my 6 months check up today and found out that the optic nerve that they removed 10 years ago has grown back and need to be removed again, so as my Dr. Harry Van Loveren head of Neurosurgery at Tampa General Hospital and head of University of South Florida, this is the doctor who saved my life, and the finest in the state of Florida said that it needs to come out again.So our brains are different some of us can repair and grow back nerves, and brain matter, but just remember it’s going to take time.
I also need a major neck surgery because I have 4 herniated disc in my neck C2-3 C3-4 I am fused at level C4-C6, but C6-7and C7-8. This is going to be another 14 to 16 hour surgery to fuse my neck from C-2 to C-8, this surgery is more dangerous than my crazy, or my anny’s.we’re.The problem I have is that I am in a wheelchair now due to a sever case of Arachnoiditis, this is from too many MRI, CT’S, and MYLOGRAMS,and finally a morphine pump that left a million crystals in my spinal cord. The dye that they used in the late 90’s and early 2000’s has caused this condition, which according to my doctor is going to be a huge problem for people like myself who had too many liquids put into my spinal cord.
So to give my wife a break I have scheduled to have my sister come down and help her out.
That’s why I am saying that you are going to need help in taking care of your mother, it’s going to take over a couple years for her to come back. All of this was caused by a drunk truck driver on the lucky day of the century 07/11/2001 and the accident happened at 7:01 that night.

Ray Dempsey

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There is life after brain surgery. I had my rupture 14 years ago while on vacation in Florida. Had a clipping, 2 to 3 strokes due to vasospasm. I don’t remember much of that but my family certainly does. Everyone is different and I hope that your mom’s road is recovery is a easy one. I have a few deficits, nothing major but I am disabled now. My personality changed some and I have had to adapt. Be supportive and by all means try to get some help when she comes home. It takes a village,
Love and hope from Jean in Minnesota

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Thank you all so much for your response, all of this gives me hope. It can be very discouraging when doctors tell me after 4 months, that this is it for her, so all of your words of wisdom is encouraging. This platform has honestly been amazing, with lots of good information.

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@reynosl22 Hi I’m so sorry to hear what your mom has gone through. I went through the same thing in feb of this year. My aneurysm rupture was also in my R PCOMM artery. I also had a craniectomy, I had my cranioplasty 5 months later - delayed multiple times because of Covid. But, it is also possible after her cranioplasty, she will have some improvements. Once the brain is in a familiar environment (closed skull) it actually can result in functional improvements. For me, i had less headaches, improved memory, my speech was also better, and I also was cleared to do more. So once she has hers done she may be a ale to try doing more things safely which can help with her recovery! Overall I am doing very well, I am very functional, I have returned to work, although limited due to fatigue, I have also resumed a steady workout regimen, I can even run and jump now. I’m not sure - but did her ischemic stroke cause other issues? Having the 2 strokes makes her situation quite complicated. Separately one would be able to rehab quite well from either one. But together it may make it a bit complicated. I believe speech therapy and physical therapy were very integral in my ongoing recovery. The brain is an outstanding organ, and it can relearn things very well with lots of REPETITION. So keep encouraging her and be patient with her and I am sure she will do well. Let me know if you have other questions!

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@Ninalexa Welcome! I look forward to reading more of your story and your support to other members!

Moltroub

@Moltroub hello, and Thank you! I am happy to contribute in any way I can. My recovery has been very fast and I have recovered well. Any tips that couple help someone else - I’d be thrilled to share! my prior level of functioning was very high prior to my aneurysm rupture, I unfortunately didn’t have any physical therapists that were willing to get me back to that level. But luckily I am a physical therapist mysel, with neuro rehab background, So I have been able to direct my own physical therapy to get to where I want to be.

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@Ninalexa I am a huge fan of PT! After I ruptured, I was able to get back to PT with a signature from my Neurosurgeon as my PCP at that time could only tell me to get a new Neurosurgeon. So I did what I thought I needed and Dr. Stacey Wolfe helped in any way she could, which was a lot! I am so glad you’re a member!

All the best,
Moltroub

Ninalexa, Welcome ! Thank you so much for responding to my post! My mom is currently in rehab and she’s currently a total care, but I’m staying hopeful. I just found her incision has slightly opened ( no sign of infection), her neurologist is now more motivated to scheduled her for her cranioplasty. And, she doesn’t seem to be in any pain. I’m hopeful having her plate back in will aid in her recovery. I’m so glad you have made a wonderful recovery, your words of wisdom are encouraging and very helpful! Thank you again for responding!

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@reynosl22 of course! My pleasure. My time at the rehab facility was so helpful, but without the plate I kind of plateaued. So after the cranioplasty i was able to really push my rehab. Mostly because they didn’t have so many restrictions. You know i actually had to wear a helmet for almost 6 months waiting around for my cranioplasty. How’s your mom’s spirit? I hope happy, I was very frustrated and often sad but my support system of my family, friends and boyfriend helped keep my spirits up.

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@Ninalexa her spirit seems to be okay, I finally got to see her the other day at her neuro follow up. She’s happy when I’m around, due to covid, I’m not able to visit her at the rehab facility. I do talk to her everyday. When I finally saw her at her appointment she did say she’s ready to come home, it broke my heart because she’s still in her feeding tube, due her two pneumonia’s she recently had she lost a lot of weight, and now she’s developing bed sores, so the situation seems to be getting a bit more difficult for her. I’m trying to support the best way possible and trying to keep her spirits up.

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Aw, I’m surprised they didn’t take out her feeding tube before she moved to the rehab facility! Hopefully soon! Then it will be one step closer for her to go home. After i had my feeding tube removed I had a lot of dietary restrictions, and I too lost a bunch of weight. But when I went home I was cleared to eat solid foods and gained some weight back! Little by little things will get better and easier. I’m glad you get to talk to her daily. I remember my highlights were when i could chat with friends and family. Even though it was only on we FaceTime.

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@Ninalexa thank you! I haven’t been on here for a while, my mom was hospitalized for having another case of pneumonia and now she’s been diagnosed with osteomyelitis on her pelvic bone this is due to her bed sore that’s developed on her sacrum. She’s now back at the rehab facility and doctors are working on healing her wound. We’re taking it one step at a time, I’ve been talking to all of her doctors. And keep talking to my mom to keep her spirits up.