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SAH'ers in the USA


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I know from the stats or numbers that visit this website and join, that we have quite a few of you guys from the USA?

Would be good to know who you are, where you're from, as we have a bit of a time difference in the UK, so when we're asleep in the UK, perhaps some of you would like to chat?

I also know that the care varies even inside the UK, so it would be good to hear what you would like to see from this website?

Would appreciate any suggestions .... and hopefully, we can accommodate....

Love Karen x

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  • 3 weeks later...

KAREN

AS YOU KNOW I AM IN SHOW LOW, ARIZONA

NOT SURE I KNOW WHAT TO SUGGEST YOU ARE NOT GOING TO HAVE THE RESOURSES TO OBTAIN ALOT OF INFO FROM USA LIKE THE WAY YOU DO FOR THOSE IN UK AND WHO TO GO TO FOR HELP ON DIFFERENT THINGS AND US HERE DON'T GET THE RESOURCES LIKE YOU DO THERE.

BUT WILL LET YOU KNOW IF I COME UP WITH ANYTHING.

THANK YOU EVELYN

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  • 1 month later...
  • 3 years later...

I am from South Carolina. I had my SAH on Oct 11, 2011 and was treated in Aiken, SC for 4 days and then transferred to MCG in Augusta, Georgia for further treatment and coiling. I spent 3 weeks in ICU at MCG and another 3 weeks there before being admitted to Walton Rehab in Augusta for and additional 10 days.

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BTG has been my life line for the past 1 1/2 years! Never saw this thread before :). I'm in Florida and I, like most of you in the UK and other spots, received no real after care, nor did I know what to expect as far as recovery. Still dealing with that to a certain extent. Once the surgeons and other doctors have "fixed" us, we're on our own. I am so thankful for all the wonderful people here at BTG - you're such extraordinary and inspiring people. Special thank you to you, Karen, and the other admins who voluntarily give your time and talents to this site!!! Love you all. I can't think of any suggestions, either - BTG is a superb place to be, with all the information, support, and new friends!

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I'm in the US too! Washington state.

Yup, nothing afterwards. I got a handout on "hemorrhagic stroke", my discharge papers that said "Take it easy for 2 weeks, limit exercise for 4 weeks, no strenuous exercise for 6 months--patient needs PT"

Then a two week followup that was really just a little over a week out because I was really struggling emotionally. Agreed with using a walker (a neuro PT had suggested the walker on discharge), don't drive "until you feel ready" and that's it. Go back to work tomorrow.

I don't know what I would have done without this site and some other UK sites that had such CLEAR information. No one told me I'd be so tired, emotional, tired, angry, tingly, sensitive to light, heat, cold, sound, and colors, dizzy, scatterbrained, etc.

BTG helps me not feel so alone! I'm a pretty "up" Pollyanna kinda girl, but I was getting pretty dark there for awhile because I didn't know what was WRONG with me!

So thanks everyone!

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I'm in the US too! Washington state.

Yup, nothing afterwards. I got a handout on "hemorrhagic stroke", my discharge papers that said "Take it easy for 2 weeks, limit exercise for 4 weeks, no strenuous exercise for 6 months--patient needs PT"

I spent almost 2 months in hospitals including 2 weeks in a rehab hospital learning to walk and function in the world. All of that was wonderful but, like you, the most information I got about how I would feel after leaving was instructions on how to get into and out of a car without bumping my head. I got absolutely no information about the rollercoaster I was about to be on. I had one meeting with the psychiatric department after discharge but they were basiscally checking to make sure I was not suicidal and, here in the US, my insurance doesn't cover mental health after discharge. Nice. One more medical bill to worry about.

I have learned more from one week in this group than from all of my doctors combined. Before finding this group, I found some other good information online that also came from England. Why is that? Lord knows we pay through our noses for healthcare here. Don't get me wrong, I appreciate the quality of care that we have if you can afford it. I am fortunate enough to be able to afford (barely) insurance. I stopped adding up my bills from my SAH after they topped $500,000.00. Would I be here if I couldn't afford insurance?

Enough for my medical care rant. I felt well enough to join a gym today and will have my first workout with a trainer in the morning. I explained to him that we were going to have to take it slow and that this was not a condition where we could just "walk it off". I am looking forward to it though. I plan to do a little cardio and some weights. Any tips for starting an exercise program?

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I was told no weight lifting for one year, so I've put my gym membership on hold for the time being. I will get clarification on whether that just means heavy weights, which I've never done. I've only done weights for a cardio program - light weights and lots of repetitions. So, I would make sure your trainer is very familiar with recovering brain injury patients. Mine is and he returned to the gym 4 months after his event last year. I'm in good hands and will aim for that four month mark to return as well and start with baby steps. My cardio is getting better each week now that I've added cycling to my routine.

Just be careful ok?

Sue

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Thanks, Sue!

My neuro surgeon gave me the green light to do anything I feel I can do. I have had restrictions on lifting for 6 weeks each time I've had an eye op so I made sure I can put my membership on hold if need be. My next eye appointment is Tuesday and I can't wait to see what new hell they dream up for me! I am so looking forward to the cardio and giving my neglected abs a much needed workout.

I'm glad you posted in the USA thread. Canadians are Americans without medical bills to worry about. That's why ya'll are so nice. :-)

Mike

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  • 1 month later...

Hi, I'm also from the US - northern Michigan. I was airlifted to the University of Michigan where I spent the required 2 weeks after a SAH. My surgeon was wonderful and I had amazing care. Like everyone, I just received discharge papers with the usual stuff. The hospital has a huge neurosurgery

staff and ICU. I can't understand why they don't have someone to talk to patients about what they can REALLY expect after they're discharged.

I had a 6 week checkup where the surgeon said I was doing better than expected and released me from his care. I was really surprised by that. Did anyone else only have one follow up visit?? Nobody mentioned anything about having emotional/mood issues, frozen shoulders, weak legs, body aches, weird sensations in my scalp, etc.

I'm also very grateful for this site. It has been such a great source of comfort and reassurance. I can't think of anything I'd like to see changed

or added. Thank you to all the volunteers who keep it going!

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Hello,

Lisa C,

I had pretty much the EXACT same experience. I'm in Michigan also, near Detroit. My wife just had a partial hysterectomy at U of M and they were great. As far as aftercare, it is certainly much to be desired. I think there are not enough SAH'ers for them to know or care about. Most of what I learned has been on this site.

I had one follow up visit as well. I told the doctor I "thought" I might "try" and go back to work and he was like great see you later. I went back after two months, much too soon. The NP at the hospital told me I'd be back to work in a week. Not!

I have the weak legs, body aches and weird scalp too. Usually only when tired though. Stay positive, it is early in your recovery. Send me a message anytime if you like.

David

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Thanks, Sue!

My neuro surgeon gave me the green light to do anything I feel I can do. I have had restrictions on lifting for 6 weeks each time I've had an eye op so I made sure I can put my membership on hold if need be. My next eye appointment is Tuesday and I can't wait to see what new hell they dream up for me! I am so looking forward to the cardio and giving my neglected abs a much needed workout.

I'm glad you posted in the USA thread. Canadians are Americans without medical bills to worry about. That's why ya'll are so nice. :-)

Mike

Thats for sure Mike!

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HI guys,

I'm in Michigan too. Went to U Mich and then to the inpatient rehab there so...3 weeks total. Then discharged with scripts for drugs and outpatient rehab (PT, OT, Speech). I did all of that even though my insurance only covered the PT after a $5,OOO deductible. When I chose the deductible, I never thought I'd have something really bad happen that carried over to a new deductible year...yikes and who would have thought I'd need speech therapy? I just thought I might break my leg sometime because I was so active and I was so young.

Support is very lacking here in the US after the hospital. Our type of care is also VERY discombobulated while the PT only works on the large muscles, the neurosurgeon - the surgery if needed, the rehab doctor for the rehab issues, and the GP for your annual visit that we all should do, but don't. Who takes care of all of me? I have yet to experience "Patient Centered Care" It's been about what's best for the hospital and most people have this issue, so you must have it too. Well, I don't...I have a different issue...health care providers seem shocked or have never dealt with it...'What is PBA" my rehab doc wondered and why does she think it's so bad? Well I have it and it sucks!

~Kris

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Hi Mary B,

All is well, thank you! I live in a small town in the valley called Bakersfield, CA. Central Cal, in between Los Angeles and San Francisco. It is so nice to meet people here that truly understand what we're going through...i don't have a lot of support system here in the valley. Not very common my neuro said. Really glad i found this site! My first year SAH anniversary is coming up! (May 24) I still clearly remember how my first week out of the hospital, i was so worried and not understanding what's really going on in my head. I even updated my will! LOL Thinking of the worst. Then i found this site and started to understand more of my situation. This site has helped me cope with things i do not understand and most of the times, explained things better than my doctors and neuros. Hope all is well Mary.

Sincerely,

Ryan

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Ryan, I can one up you I am selling off stuff that my family would sell in a garage sale for 50 cents or just give to goodwill! I also asked my neurosurgeon flat out if body donation to a teaching hosptial is better than organ donation.

I have not been to Bakersfield but my sisterin law and family live in Riverside so I make a trip out there every couple of years and we usually do some short trips. I love CA. I went to San Francisco a few times but mostly stay around Riverside area. My BIL was City of Riverside Fire Chief Tedd Laycock. Nicest people in the world.

One year anniversary! Congrats to you! How do you feel? All back to normal I bet!!!! I wonder how many people have SAH a year??

Maryb

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i have lots of friends that lives in Riverside. Yes, i'm pretty much back to normal, still have the scalp sensitivity, can't use hair gel or hair spray...when it dries it hurts. Feels like someone pulling my hair. besides the occassional headaches, i easily get tired. Luckily my boss 's in the hospital room when my neuro explaining the whole SAH and it side effects so he knows my situation. it doesn't happen very often but "it" make sure i'm aware "it" still around.

i'm glad the sun is finally out! it's been raining here a lot lately. have a good one.

Ryan

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Hey Ryan:

Our California connection. Anniv coming up, hope you're feeling better.

I used to live in California for 3 years. Lived in Orange County. Mission Viejo, Huntington Beach and Orange. Then moved to Woodland Hills in the West Valley of LA. I loved it there. Never saw a cloud from April to Septmeber, beach etc.

My boss and roommate turned out to be an alcoholic so I split and moved back to Michigan.

Regards,

David

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