Jump to content

Consistant Aftercare?


Recommended Posts

Hi Scott

Count me in aswell i came out of hospital and sent to rehab with nothing at all noone told me even with asking nothing came i didnt even know i had a stroke during op until they sent me to rehab....and the tablets oooh i could go on...so count me in its a very lonely place out there and i was so glad i found you lots

Love luck laughter

Michelle

xxxxxxxxxxxxxxxxxxxxxxxx

ps my GP didnt even know the Park Rehab Centre and its inthe same borough!!!!

Link to comment
Share on other sites

Scott, Karen and all, Yep! Count me in too.

I am (since I saw your post Scott) trying to collect my thoughts and my experiences into a coherent whole, but as I'm still battling with the aftercare I keep coming across great big new gaps in the care package, if it is worthy of the name, at this early-ish stage.

I will forward my thoughts for what they are worth at a later date when you are ready for them. I think the info needs to be across the board, medically speaking, as there seem to be so many regional variations. Me still being here to rant like this is actually down to three folk, my partner and the ambulance man, plus a new but on the ball Houseman, who recognised what he was seeing ( then a cracking good surgical team,) we became quite intimate after three dates in theatre :wink::wink:

Link to comment
Share on other sites

Scott at Kings they gave me 2 leaflets from the Brain and Stroke foundation one on Coiling and the other on recovery from SAH. They seemed to answer a lot of the points other posters are concerned about. So you should check these out if you have not seen them.

We were also given the tel no of the liasion nurse.

Giving out these 2 leaflets and a liasion nurse contact would be an appropriate national minimum standard to aim for.

Link to comment
Share on other sites

Hi there

Count me in too. No aftercare info and still floundering in some areas (mainly psychological). Someone mentioned whether it's ok to have a massage. When I was coming out of surgery from second aneurysm clipping my neck was really really bad (still suffer now) so Fiona was massaging it and a nurse told her off really, really sharply saying massage increases the blood pressure. As the only thing my neuro has told me is to watch my blood pressure carefully does this mean I can't have a massage again? So small areas of 'usual' life are being impacted on by little or no knowledge of what we can and can't do, or what we should avoid.

Like most people on here I've had to fight for any post-SAH info and possible care which is probably easily resolved if the right resource(s) were available.

Any help I can give let me know. Writing, editing, typing and proofreading are specialities of mine!!!!

Sarah x

Link to comment
Share on other sites

Guest Beth1957

I like the idea... I've a couple of suggestions for questions to ask the neuro...

"Do I need a card for airport security?" (the last doc I asked had no idea)

"Should my family be checked?" (I believe this depends on the type of annie)

The massage question is a good one. I have a lot of trouble with my back/neck/shoulder & used to use a massage device but haven't dared since the annie was diagnosed - not have I dared go to the chiropractor!

Also - a silly point - I'm due for a dental checkup; there's no way I'd be happy letting him gset about me with a drill until I've been coiled!!! :D

Link to comment
Share on other sites

Hi everyone

I was refused treatment by my dentist so referred to the hospital. I guess I will always be scared of having drilling done.

I think more information should be given to patients, I am flying off to Frankfurt and I am worried, someone told me that I should inform the airline about my SAH but I think that is not right. I have no idea of this and neither does my GP, and what about this card for airport security, i had coiling so should i be worried ?

When having a massage done especially using aromatherapy it is an obligation by the therapist to ask about contra-indications as some of the oils used can increase blood pressure. I do know this because i am also a qualified beauty therapist who has also passed the diploma in aromatherapy. I personally would not of done massage on clients with history of SAH, stroke and heart problems because i know it might cause problems.

Myra xx

Link to comment
Share on other sites

Myra,

I've flown several times since my coiling and have never warned the airline. I doid always carry my discharge letterfrom the hospital incase I bleep going through security :lol: but I never have.

I've never had an issue with the flight procedure just always get a headache when on plane :roll:

Hope this helps

Laura

xx

Link to comment
Share on other sites

  • 1 month later...

Dear Myra

I've flown twice since my SAH and coiling. Had no problems, not even a headache from the altitude. Always have lots of information such as: hospital details, operation details etc in my handbag in case I did collapse or something. (In fact always have info in bag even when shopping or driving just in case).

My dentist refused to treat me for a few months post SAH but I contacted the hospital to get permission for her to give me an anaesthetic and she accepted that.

Had no problems with physio since, but wouldn't dare go back to yoga and am very, very careful washing my hair etc, stooping down to pick stuff up from under tables or anything like that.

Hugs

Lesley xxx

Link to comment
Share on other sites

I asked my neuro if I could go through airport security safely with my coils. He said it was fine and would not set off security.

I have since flown at least 20 times over the last 4 years and have never had a problem with the flight or anything, likewise with my shunt.

I always carry details of my aneurysms, coils and my shunt type and settings with me as well as info about my heart stents. Just seems to be a wise thing to do.

Link to comment
Share on other sites

Hello

Apparently the airport machines are tuned not to detect certain types of metal, such as that used for coiling... I was a bit disappointed not to make the machine beep, tbh. I've never informed the airline of my SAH.

I always intend to carry some relevant info with me, but invariably forget!

Blondie

Link to comment
Share on other sites

Guest Vivienne

Hello Scott,

This is a brilliant idea! And you can count me in too!

When I left the hospital, I wasn't given any instructions apart from "take it easy!" My family didn't know what to expect, and I think my husband thought I would be back at work after two weeks!

I don't see my consultant for another 5 months yet! He may consider everything to be going well, but for us not to know is scary.

It wasn't until I had a check up at the dr's 2 weeks later, complete with my list of symptoms(!) that it finally sunk in how long recovery was going to take.

And of course, finding this fantastic site and reading that things I'm going through that others have already been through, are normal has been very reassuring.

Vivienne

Link to comment
Share on other sites

  • 4 months later...

Just to let you all know that the DVLA finally replied to me this week!!!

Don't get too excited though, they stated that "we do not as a matter of policy comment on individual medical cases".

So in this case it really wasn't worth the wait :(

Scott

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...