I had a brain aneurysm over the right PICA (Posterior Interior Cerebellar Artery), which is near the brain stem.
Has anyone ever had or knows of someone who has had an aneurysm in that area? Perhaps we can share similarities post the aneurysm and can compare what works and does not.
Thanks.
Hi Holly, Mine was the left PICA and was a rupture in 2007. I couldn’t see for a while because of the blood behind my retinas. It took a while but eventually cleared up pretty good. My biggest challenge is balance.
Shelly
Hi Shelly,
I have balance issues as well. The one doctor indicated that the cerebellum had just about been destroyed. However to what extent and how long it might take to regenerate itself was a question as this area can regenerate.
I had retina detachments in both eyes, which was due to the pressure on the optic nerve and eyes themselves. I had a complete retina deptachment in the right eye and have a buckle around that eye to hold the retina in place. Then due to age I had a cataract in that eye which was removed. You would think having the aneurysm is bad enough but no, age related things also come up.
What can you say. You either cave into these impediments or get beyond them. I am alive and that in itself is a miracle.
I hope you are doing well.
Do you do exercises to help with the balance?
Holly
Holly, Yes I have done physical therapy several times now.
I had done some physical therapy but then they indicated they could do nothing further. I think I have to continue to use my tread mill and just go about doing things as best I can. I think a big part of the balance is the vision. The left eye is fine. The right eye is not and I think that throws things off a bit.
The biggest factor I face is having traumatic brain injury. The brain has been traumatized. I seem fine to others but to me I am not. So each day is an adventure as I never know how it will be. However, there is much I can manage and I am thrilled about that.
What have been your hurdles to overcome, if you do not mind discussing them?
Holly, many, many hurdles. I had to learn how to walk twice. The emotional part of it is just as difficult as the physical part. Here’s my story, sorry, it’s hard to keep short but I’ll try:
June 3, 2007 I had a rupture while in the grocery store with my husband. I was taken to the local hospital then flown to the city where they put in a drain and then did coiling surgery. About 10 days later they put in a shunt. I have no memory of the first 2 weeks or so. I was in the hospital about 28 days then home. August 2008 my surgeon wanted to do another coiling surgery. The artery that ruptured originally was very diseased and he was afraid it would rupture again, he wanted to totally eliminate it so that there was no danger of another rupture. He felt that another rupture would be fatal. The artery is my left PICA. The coiling would not work, they couldn’t get the coils in so they used a liquid called onyx to close off the artery. They told me when I was going in to the surgery that it would cause a stroke. It did but the surgery was successful and since May 2009 I have been back to work, went back full time July 2009. I was blind for several weeks after the rupture due to the blood behind my retinas. It slowly cleared and my vision improved, in fact, I was just back to the eye doctor in March and he could not believe again how much my vision has improved. It is amazing how the body heals and then how it adjusts to it’s new self after the healing. I know doctors say that all the healing is in the first year, that may be so but the recovery continues for so many years after. I drive and for the most part my life has returned to a very normal. I am left with some balance issues and dizzy a good bit of the time but have learned to adjust to that too. I will say there has been some change in my personality, I have noticed a temper that I never had before, but that too has improved and still seems to be improving. My biggest challenge these days is the fatigue. My body requires so much sleep it can be frustrating. I have had some thyroid issues and had thyroid surgery last September and that probably has contributed to some of the fatigue. I do think that working out helps so much and I need to get back to that, I was so good about working out up until I had my thyroid surgery. Tell me a little about yourself.
Shelly
Shelly,
I had a grade 5 Hunt-Hess aneurysm over the right PICA, which is over the brain stem. I died in the emergenty room but the doctor restarted the heart. I was flown to another hospital and they were prepared to do surgery but my condition had detiorated so much they could not. By this time I was in a coma. First they tried to coil the aneursym but could not. Then the coma was deepened and a clip was put on the aneurysm.I I also have a shunt which I seriously considered having removed as I thought it contributed to the odd taste. However unless it is infected the doctors do not want to consider that. (They still consider me a miracle in the first place and do not want to mess with that idea.) I was still in the coma when I came out of the surgery which baffled the doctors as I shuold not have been. Everything seemed fine. So after a few weeks my family was told to take me home to another place as they could not keep me. They had done everything. So still on a ventilator my family moved me to a nursing home near my house. I was in the coma for almost 7 weeks at this point. It was now considered a persistent coma and the coma team indicated most likely if I become conscious I would be a vegetable due to the damage. My family called the minister and pulled all the feeding tubes. Then as the minister finished saying prayers and the 23rd Psalm, I came out of the coma. Originally it was thought I would be blind, paralyzed on the left side and some other side effects. However, none of that occurred. I did have to learn to talk and walk. I also have had both retinas tear and due to age a cataract removed. I am currently 61. The aneurysm occurred when I was 52 and an active professional. I am a widow and was just starting to think about dating after three years following my husband’s death. Then wham, that occurred. It is thought to have been congenital.
I began to do volunteer work in 2002. I could not go back to my job and was on Long Term Disability until 2009. I do receive Social Security Disability. thank goodness. When I was tested for that, I failed evey test as I really could not formulate thoughts at all. To me, I could navigate better physically. However, people tell me I have improved but to me I have not, at least over the last few years. So, I do think the brain trauma takes it toll on you. Although the one Neurosurgeon indicates it does not really do that any more than any other health event. Well we will see. I am a person of great faith and if I wake up I smile, as there is a reason for it. I have authored two books about my experience hoping someone else might relate.
My taste has gotten worse which my doctor feels is due to the neurons having to switch gears as to what they now do in the brain. The actions of the damaged cells are being diverted to other areas and he feels that is causing the oddities.
I also agree with you on the healing factor. I was told that most progress occurs in the first two years. However, it may not be as fast, but I feel improvement can occur as long as you keep working in that direction. I do not accept progress cannot continue and to that end I keep my sight on that. I do not expect to be as I once was, but I do enjoy life very much and will continue to do so.
Sorry this is probably more than you wanted to hear.
Wow Holly. Amazing story and it sounds like you are an amazing person!
Shelly,
I am not sure I would say I am an amazing person. I have just had a very usual even occur. I dearly wish I could not had have it happen. However, it did and it does make me more sensitive to others as they daily struggle with trying to live a normal life. Well, it seems we all have something to deal with.
I am sure you have found, like I, that progress does not come from sitting around. It comes from the determination to do something about your circumstances and reaching out in faith that change not only can, but will occur. The doctors can only go so far and the rest is in your hands. I am fortunate to rely not only on may hands but those of another source. That doubles the results of the effort.
Yes, I agree, we all have something to deal with in our lives. I also wish this didn’t happen to me but it did and I feel the same as you in that I push myself hard every day. I am not one to sit around. Take care and keep in touch - please share the names of the books you have authored, I would be interested in reading them.
Shelly
Shelly,
The names of my books are:
Hello Tomorrow, I’m still here!
Negotiating the Speedbumps-Living with Traumatic Brain Injury.
They are both available on Amazon.com
I do not know why why I did not see the reply feature in the last email from you. My email address is ■■■■■■■■■■■■■■■■■■■■■■ if you care to use it.
I can relate to much of what you wrote. I think the hardest thing was when it dawned on you that you were not the same as you once were. I know I was depressed for months and would cry. One day I heard a small voice say “Well, just how much has that done you!” It had done nothing and I had to pick myself up by the bootstraps and begin to live the new life God gave me. I have had the weird moments and some of the biggest laughs as well as the absurdity of it. One thing I have not done is give up on myself or the belief I can improve. So, it has ben nine years with lingering effects, but with more desire now than ever to keep up the effort. Thank goodness for my faith and my relationship with God.
I am sure you thought wasn’t it bad enough to have the aneurysm, why did I need all these other things? I feel like that at times. I did not need the retina tears, the cataract, the balance issues, the taste issue. I appreciate that God feels I can handle all of this, but enough is enough! I certainly would not mind some sweet surprises once in a while, not another issue to deal with. Oh well, such is life. Adversity makes you strong in so many ways and faith gives you the ability to deal with its trials. I think it becomes a matter of how you personally deal with the event. You can either be lost in it, or carry on. Take care.
Holly,
My anuerysm is on the left PICA - 4 X 6 wide neck with a 1 mm teat. I also have a 1 mm on the left superior
cerebellar artery.
5mm rupture on the right PICA aug 13 2008 – i am still having “issues” with my recoveries
memory, personality mostly
Hi Jim,
It sounds as if your rupture was in the same spot as mine. I had mine 9 years ago (May 2001). Do you have any lingering issues you are still dealing with? Did your rupture affect your balance and taste?
Well, I would think Michele that would give you perhaps differnt consequences that one on the right side. However, no matter where they occur it is an event I would have liked to have missed? I don"t think other can fully comprehand how you feel when the brain is affected. I do not have any phusical detriments, which is byself a miracle. So, to others, I look perfectly normal. However, to me, that is not how I feel. But what is the use of dwelling on that. I have much living I desire to do and just ahve to figure out how to get around the obstacles to do it-not unlike many others.
I hope you get the answers you seek. I hate not knowing things. I would rather have something difficult to face but have an answer than face an unknown and have no reason to know why. That is what I face now.