sbaker

Hi all , So home and all good . Think hubby feels better knowing he's not having another SAH ...me too His neuro wants him to start a low dose statin ...understand why but. Can't do Lipitor because he was on it for a few years and had all the super nasty side effects , so called in zocor ..... Well ! Me being me I then researched the contraindications .........HOLY ...... New warnings August 1. Should not take if ...brain bleed .... Called cardio and neuro re this and both said ohhhh my ....oh yes ...ummmmmmmm ok Crestor low dose ok ??? Can someone please put me out of my nightmare

Hello all , Sitting in our room at hotel after a long but good day at tufts medical , hubby is sleeping like a baby now , thank god.... ANGIO done , good news all good, stents and coil is good... Now they tell me that stents actually will narrow the Arteries while they are healing into artery walls , then will open up again once absorbed into walls ... So that would probably cause the lightheaded feeling etc... All good.. Want him back on a statin however , Lipitor is a no since he had all the bad side effects before , so now will try others , but very low dose .... Also the hearing issue is to be expected , side effect from sah....probably go away but ? When ...not sure ... First time they have used 2 stents to bypass aneurism , so test case .... Found out today he was a grade 4.5 bleed , so very unusual for him to be walking and talking...they truly see him as a miracle baby. Hide my pity party last night , and no one was invited .... Tonight I'm so relieved ...and grateful I must have told 4 neuros and pas today about this site ... Thank you all for listening ... Bless you

Thanks all, and Yes Daff, unfortunately, this is the week in Boston that has 3 huge conventions and a lot of the University's have orientation starting also for the new students ....SO ...loads of fun...I just hope all goes well and we can come home on Thursday....

Change of plans !!! Surprise .....now we go tomorrow for Angio on Weds. ....TRY TO GET A HOTEL IN BOSTON THIS WEEK !!!!! Shoot me please....You don't want to know what its costing per night, but I can tell you that "Claridges" in London doesn't touch a candle to it !!!

Morning all , Mri done Sat.am, back to maine same day....Today got call telling us to come back to Boston for Diagnostic Angio first thing tomorrow am. MRI showed no further seepage and shunt seems fine also. BUT, concerned that there is a narrowing where the 2 stents were put in June 8, so need to check that out, since that would be causing the now almost constant lightheadedness and dizziness ..So off we go this afternoon for 2 more nights in Boston ...At least we are being proactive....Will advise tomorrow when I know more.... Kelley is feeling scared, frustrated ( understandably so) , I am too....On the bright side I got to spend an entire day with my 2 wonderful grandkids yesterday ( Poppa stayed home ) .... Thanks for listening ...

MRI/A scheduled for this Sat. at 11:45 ....Cross your fingers.....

Good Morning Subs and Daff, Thank you so much for your responses and advice ....Late yesterday, I finally heard back from his Neuro office, they want to do MRA/I asap to make sure there is nothing bad going on ( i.e. Small strokes) . Originally scheduled for follow-up MRA/I and diag.angio on Sept. 4 and Sept.8 . So currently patiently waiting for them to phone with appt. for new MRI/A. I opted not to give him the details, just told him they wanted to make sure everything was operating properly with this lightheadedness he has been having . No need to add to anxiety.... AS for your ideas Sub, well financially I could not afford to not work , our medical bills after insurance are in excess of 780,000 usd...and keep mounting. Again we might have great medical care, but its comes at a huge price in the US ..I also did not work for over 60 days this winter, lived in hotels for 50 of those days ( and none of that was paid by anyone but me and it was in Boston, which is priced like London ) . Luckily, I do have office attached to house, so it does allow me the flexibility to pop in and out most of the time. I also have the total flexibility because of my staff and junior business partner to do all the medical appts. and doctor visits etc..again, thank god... A typical day for my spouse ( Kelley) , well he usually wakes early these day 5 to 5:30 am..he putters with minor repairs on fly rods , chats with his springer spaniel ( they are inseparable buddies) , checks his email , then depending on schedule , has Gym with Personal Trainer now , 3 times per week for hour each, and then also one on one pilates training on Fridays also. The other days have been getting better most of the time...He will do errands, grocery shopping with a list . I have started giving him lists of other things that need to be done around property, ie. mowing with riding mower, trimming with weed eater. Fills his bird feeders ( he has 12 of them) and that has gotten much better, more regular now. He will take a nice long nap in the afternoon most days. Sometimes he will feed our animals, 2 dogs and 2 cats, sometimes he doesn't. He no longer does things he used to, like laundry, cooking meals during the week , the mowing is usally random, but at least he 's doing it...I hired a landscaper to handle the bigger stuff, spring and fall clean up , mulching all the flower beds etc.. He also used to take care of all kinds of DIY stuff, power washing the house, treating our deck ( which is huge) generally fixing small stuff. Now , no more, but trying to find people to do this is impossible !! I have found that social situations are not good, especially if a lot of people, so now I am trying to avoid them. He thinks he's fine, but that is not what I see at all, he gets very edgy, withdrawn and irritable with me, usually barks at me and sometimes I BITE back !! LOL ..... We have a Harley trike, which he got for his 65 birthday...loves it...he is riding again, but I again find that a lot of traffic or going somewhere not familiar is too frustrating for him. Again he doesn't see it.... As for the driving thing, here unless you have suffered grand mal seizures, you can drive after you have been cleared by a neurologist, which he was. Wow, are you glad you asked me those questions ?? I have gone on and on and on....Sorry :P Guess I was really having a pity party the last few days, things could be sooooo much worse...and he really is doing remarkably well considering everything.... Thank you for listening...

My heart goes out to you , what a tragic loss for you and the children. I ditto all that has been said, so no need to repeat it.. I will however tell you and all of those above: My husbands Neurosurgeon is considered to be the SAH guru in our country. His recommendation because it turns out that my husband had 2 male relatives that suffered ruptured aneurisms ( not in the brain ) and then my husband having the SAH , our 28 yr. old son should be CT scanned now for a baseline and going forward 1 x per year. Says that although there is no "proof" these seem to be familial in nature. Even though my husbands may have been a result of Eliquis

Morning Subs, Yes I am 5 hours behind you....thank you for your very helpful words. and perhaps bullied was not correct on my part....I would say encouraging and helping him to stay on track is a better explanation.... He has so much anger these days with all of this , but yet finds it almost impossible to talk about his feelings, so it seems to come out in such a nasty, impatient way...AND today is one of those days...I am currently trying really hard to avoid him at all costs...LOL.. I actually own my own Wealth Management firm, and the office is connected to my home. My husband is retired but has a small business/hobby , he builds and repairs split bamboo flyrods and teaches a class on build your own 4 times year. ( have one coming up) and he is having someone help him with that this time.. What I find for myself is : 1. hard to concentrate , especially when he insists on my attention randomly during my working hours... 2. Like today, which is more difficult because of his temperament....and I don't know how to get this across to him...I have employees here and cannot tolerate having his nastiness and barking in the office ..... I have searched high and low for a therapist that deals with SAH survivors / or TBI ....There are NONE anywhere near us....and again Boston is to far.... TODAY I could scream.....sorry need to vent ....

Thank you all for your welcome and kind words of support.....We have No support groups near us, we about 2 1/2 hours from Boston which is the closest, but my husband doesn't do well with that drive into the city anymore...Too much chaos ....This is the only site I have found that has any sort of forum for this , which is so sad since you are mostly in the UK.... We may have great surgeons here, but support systems are really bad ....... In response to the question of what about me ? Well our 2 adult sons do not live near us , 1 lives in Wyoming which is 2800 miles away , and the other is about 3 hours away with 2 young children. I have asked for his help on numerous occasions, but that has gotten me no where...We do have good friends here, but unfortunately their plates have been overflowing this last 7 months...elderly mother moved in, youngest son taken to drug rehab.... Just not a good place ..... So, found a great therapist that I talk to...weekly....She has done her research / homework on sah etc. and that has been helpful.. Overall, he has come a long, long way in a very short period of time and I do get this will be a forever recovery so to speak...small things go a long way....keeping a small daily diary, lists of to do items, structure, structure...Found that structure in his daily life helps tremendously... There are days that I feel like I could scream ! but those are lessening....I have learned to let him make mistakes, mix up appts., , I think the letting go has also helped me.. I Thank god I work at home and have flexibility . I try to avoid situations that would be chaotic or overwhelming for him. I think currently one of my issues is that he sometimes goes off on me verbally in almost a rage over nothing....loud barking at me.... He doesn't see it .....I can take it for a while , than I just snap back at him.... I would love to get him on this site, but he is beyond technologically challenged lol !

Hello to you all, My 67 year old active husband suffered an SAH on Jan.14, 2015 around 3:30 pm. All the "classic worst headache, vomiting, disoriented " , took 20 minutes for ambulance to arrive, got lucky , went to small local ER and had a great Dr., took him straight to CT scan diagnosis SAH with extreme bleed, then tried to life flight, but they were grounded due to icing, so special ambulance had to be called to transport via ground to Boston ( this is about 2 hours drive) , Tufts Medical Center, Neuro ICU unit..Was told there was a very tiny chance he would survive.... Stabilized, external drain , then surgery next am to coil .Excellent Neuro care, my husband was a textbook case, he had every possible complication, vasospasms, ischemic strokes, heart stopped twice ( my husband was diagnosed with AFIB 2 months prior to this) and paddles came out, pneumonia, UTI, negative reactions to Morphine, Haldol ..( all in all a really fun time) . When he finally stabilized 28 days later in NICU, they felt he could be moved to Neuro Intermediate CCU.....things seemed to be going ok for a few days, actually was alert after being comatose all that time. seemed to know me most of the time, but that was about it....then suddenly he regressed...because we were blessed with specially trained neuro nurses and I had been researching 24/7 during this time and asking questions nonstop , I questioned his sudden change....Another Emergency MRA....Hydrocephalus ! 2 lumbar punctures were done over 3 days, decision made to put in a permanent shunt. Please understand that during this time period, I was at my husbands side 20 hours a day, lived at hotel across the street , thank God....because if you remember the news this winter, Boston had all time record snowfall and the city ground to a halt !!!! After shunt was placed, I saw immediate improvement finally...took him off of Valproate ( anti seizure med) 2 days later we were ready to leave to go to Acute rehab hospital ! NOT....suddenly had silent seizures, 4 over the next 48 hours , so back on another anti seizure med, Keppra....so 3 days later we finally leave for Acute Rehab. Total days in the Neuro ICU = 40. Total days in bed, 40. Was told he would be in rehab hospital for at least 3 to 4 months .......Well they had not met my husband or me before...I never left his side....Started PT and OT the next morning, I cheered him on, bullied him when necessary, and sent the rehab Doctors packing whenever they wanted to give him a "pill" for everything....my new goal was to reduce meds at all possible costs . As soon as he started PT/OT and started moving his body around, improvements were astounding .....yes, tired, easily fatigued, lots of naps really helped.... 10 days later, they discharged him to come home .......That was terrifying , but he is doing very well now...still does outpatient PT and has a personal trainer at the local gym 3 times week. driving now, some minor weakness on his left side. Odd things are: ears, hearing both seem to be affected ( doctors don't know why) also, lately a lot of lightheadedness - BP is fine, well hydrated ...and no pattern, ( again Doctors don't know) I see personality changes, but most of the time is good. So thanks for listening.... Caregiver in Maine, USA