Kathy Posted July 16, 2018 Share Posted July 16, 2018 Hello.Thank you for this site. I have read many of the posts. It has been so helpful. I had my SAH on March 6, 2018. I was in the hospital until April 13 (39 days). I am 60 years old. I was on the phone when I felt the severe headache and darkness from back to front of my head (my memory). I fell to the ground but was conscious. My husband heard me fall and came. My speech was slurred. I told him "stroke" and "Get to ER" ~ I don't remember what followed (or first 4 weeks in the hospital). He called ambulance. I was vomiting and had incontinence. CT indicated massive bleed (SAH). It was determined aneurysm by the pattern, sudden onset and amount and location of bleed. However, 2 hospital angiograms and 1 post discharge angiogram could not locate any aneurysms or point of bleed. In the hospital I had a ventricular drain catheter inserted and treatment to prevent vasospasms. I also had hydrocephalus and leg blood clots developed (IVC filter placed and removed 30 days post discharge). In the hospital I also had lumbar puncture drain. I had weakness on my left side but no paralysis. I was scheduled for shunt placement surgery, but late the night before the neurosurgeon said pre-op tests indicated improvement. No shunt. Double vision but okay now (still need to see eye doctor for new prescription ~ changed). My youngest daughter is a nurse and was so helpful during my hospitalization. Our four adult children and their spouses took shifts during the day and late into the evening to be with me. At discharge I was still fairly weak and was told that I had to have 24/7 supervision (concerned about falls). We hired home care assistance for one week but then I wanted to be on my own (it was very expensive and not covered by insurance). I continue recovery with specialized PT, OT and Speech therapy (for mental deficits). I am doing well overall. I struggle with the "new normal" and have trouble knowing how to pace myself. I still have constant headaches, some short term memory loss (and we have discovered that I also have some long term memory loss), trouble with multi-tasking and math computation. Occasional confusion, balance problems and fear / anxiety. I get tired so easily. My husband (he has been wonderful) had just started a new job a couple months before my event that requires much travel. Life is demanding for us as we are raising 2 special needs children (boy age 8 Autism / ADHD and girl 15 Intellectual Disability / Autism). We have four adult children and four grandsons. I also used to teach part time. That is on hold for now. It has been an emotional roller-coaster. My mother passed away soon after my discharge and I was not cleared to attend her funeral out-of-state. There was a miracle in that my mother had been in a comma for almost a week, came out of comma and spoke to me while I was in the hospital (she had Alzheimer and didn't recognize me a year ago) ~my mom was completely aware and lucid and knew who I was. It was a wonderful gift. She passed a few days later. The latest "shock" is that my post discharge MRI / MRV showed that I have cerebral vein and cerebral venous sinus thrombosis (blood clots in brain). I am now on blood thinner and have repeat MRI/MRV on August 1, 2018. I have been told I am a walking miracle (survived SAH without repair and few disabilities) AND I am a walking time bomb. I could have blockage stroke or another brain bleed. I know that this site does not offer any medical advice, but has anyone had blood clots in the brain post SAH? Review of all images shows blood clots not present at admittance to hospital. I am now seeing a hematologist. Testing whether I have any "acquired" or genetic blood clotting disorder. I am a Christian so believe that my life is in the hands of my Creator. It is well with my soul. However, it still is a bit scary. Again, I am thankful for this place where I can share and learn so much. Link to comment Share on other sites More sharing options...
Swishy Posted July 16, 2018 Share Posted July 16, 2018 Hi Kathy, I am so glad you found this site. I felt like I found a support group here. You have been through quite a time, you sound like a fighter. It is such a gift to have family nearby. I had my NSAH at 64 years old, I had vasospasm which was the more difficult to recover from but have done well. Saying that it is a slow recovery, our brains take time to heal. I am hoping you get some answers from the hematologist, keep plugging until you are satisfied with the information you are getting. I was a bit slow to do that. I struggled with multi tasking, math and balance but all have continued to improve I am 15months out... Having faith is a gift when going through something like this but as you stated "it still is a bit scary" it sure is Kathy... Sincerely, Jean Link to comment Share on other sites More sharing options...
Winb143 Posted July 17, 2018 Share Posted July 17, 2018 Hi Kathy, Welcome to BTG xx I have had Epilepsy since 14. When in my 60's I had SAH4 with a shunt fitted a year later, . I was sleeping for approx. 1 year saw my Mum who was always swimming away from me, she died in 1976 and she told my Brothers who passed not to sing to me or talk to me. I also had ventriculitis and sepsis while in hospital Call me lucky lol xxxx Recently I had a real bad seizure not the normal one (if there is a normal seizure?) anyway my Epilepsy Doc got me a brain scan and it showed blood on my brain so I'd had a Chronic bleed. I read it and thought arghhh as it scared me witless. So I went on line and Chronic bleed is not as bad as an Acute one which relieved me …..I always put no stress on my posts but never practised what I preached ha. Good luck and keep happy thoughts for the times you feel a little/lot stressed. Anytime you feel down there is always someone on here who you can talk to, this site has been a life saver to me xxxx And of course my Family. xxxx Link to comment Share on other sites More sharing options...
Kathy Posted July 27, 2018 Author Share Posted July 27, 2018 Okay. I am somewhat computer challenged ~ and even more so after my SAH. Also, I am not used to this type of on-line support. I wanted to thank Swishy and Winb143 for the warm welcome to this site. Is there a way to respond directly to those who have made comments to my post? I have been having tingling in my left hand for a week or more. I put a call in to my neurologist and the operator said the nurse would call back ~ but never did. Perhaps I have just been over doing it lately. We traveled to help my 85 year old aunt sort and pack for an upcoming move. I am doing better. I am still learning how to pace myself and adjusting to the new "normal" in slower thought processing and lack of energy. I have another MRI / MRV on August 1 to check the status of blood clots in brain (post SAH event March 6, 2018). I hope the clots are diminished or gone! And, no new clots. I would like to come off the blood thinner Eliquis without further complications. I worry about another brain bleed. But, I have taken the advice of Win and try to sing my fears away. Too bad for my family ~ I can't carry a tune. Thank you again. Kathy Link to comment Share on other sites More sharing options...
Super Mario Posted July 27, 2018 Share Posted July 27, 2018 Hi Kathy, to respond to someone privately, click on their name and at the top of their page there is a blue box saying message. Click on this box and a new window will open titled " Compose new" Fill in the fields, add your message then click on "Send " at the bottom right hand corner. If you have received a message/s there is an envelope at the top right of every page that will tell you if you have any message/s, if so, how many in a blue circle. Click on this envelope to read them. Link to comment Share on other sites More sharing options...
Kathy Posted July 27, 2018 Author Share Posted July 27, 2018 Hello Super Mario. I will try to follow your instructions when I get home. I think it will work. I am on my cell now. Thank you. Kathy Link to comment Share on other sites More sharing options...
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