Aftercare?

[FionaH]

Hi everyone

I had my follow up hospital appointment come through this week. It was meant to be 6 weeks post discharge (8 weeks post SAH) but it isn't till the start of May.

My GP has been very helpful but she isn't a specialist. I just wondered what is likely to happen at the appointment, does anyone know? I guess I'm seeing Mr Patel at the Hallamshire again, does anyone know if I will have to have anymore tests and stuff or will they just discharge me altogether?

I still feel a bit like no one has really sat down and actually talked this through with me properly. They told me things when I was still in hospital but I struggled to take a lot of it in then. I have had a look at the Headstart website and am considering contacting them, has anyone any experience of that? Sorry if this is a bit rambly!

[Gill C]

I think it very much depends on how you are & how they feel you cna cope at home . I was discharged after 17 days (16 days post clipping) straight home & have had no after care at all other than a 3 month review by neuro & then discharged from there. I am physically ok apart from my eye & some slight weakness on my left side but I know others have had visits from the stroke team, oT & Physio.

I would make an appt with your gp about 10 days after your discharge so that the discharge letter reaches them & just run through any concerns or worries you have. Most GPs have no idea what an SAH patient need & ahve rarely had patients before with one.

I was discharged with a contact phone no & email for the SAH nurse specialist so I could always get an answer for any worries. Ask your GP about counselling as there may be a long wait so get the ball rolling even if at this stage you feel you don't need it.

xxx

[Louise]

Have to say my first appt I was so worked up but it was nothing more or less like a visit to the GP how are you? hows things been that sort of thing.....

but yes it really all depends on what you've been through.....

take care

[kempse]

Hi Fiona,

It seems a long time ago since my first follow up appt with Mr Patel and consequently can't remember too much detail. I think it was very much to see how I was doing, asked if I had any headaches etc. But if I were you, I would take a list of questions/queries you may have thought of since leaving hospital and take your hubby with you if poss, to help remember the answers! Further tests etc will probably depend upon your individual situation, but again ask if not sure of anything. All correspondence from Mr Patel following any meetings I have had with him, has always been sent to my GP and in the case that any letters have been sent to my GP and not me, my GP has printed me off a copy.

I've not had any dealings with Headstart, so can't help on that one.

Sarah

[FionaH]

Thanks everyone.

I saw the GP this morning and they are doing their best to help. I have ordered Dented Image too so I hope that will answer some questions too.

I am actually very nearly a qualified counsellor myself and am in therapy as part of my training so will be going to see my counsellor as soon as I feel up to it. (That is good, the thought of writing my final essays is not!) Its defnitley a good idea thanks for that.

[karen78]

Hi Fiona...

I have the Dented Image book, I am slowly getting through it...

Good Luck hun x

[KelBel]

Hi Fiona

At my first follow-up appointment (which I requested via the (PALS) Patient Advisory & Liaison Service at the hospital as I didn't know if or when this would be arranged...) I took along a whole list of questions, which I had written in blue ink with spaces for comments, and whilst at the appointment I made notes in red ink!

I wanted to know the grade of my bleed, where my aneursym is located, what size it is, how many coils they used, how long my op took... etc etc

I also noted all symptoms I had experienced since discharge, including the fact that my left leg still felt tight and they should have scanned it before I was discharged to check for DVT...but they hadn't, and I then had to go to A&E to get it checked a few days later at my local hospital as my blood test was indicating a problem - luckily it wasn't DVT, but I did have a bad chest infection that was dismissed by my GP even though I had said I'd had trouble breathing and felt heavy in my chest...

I actually saw one of my neuro-consultants assistant at my 1st appointment, who had to phone others to be able to answer some of my questions... however this year I actually met my consultant; I thought for the 1st time, although I do have a vague recollection of seeing him before I was discharged...

Be prepared and make lots of notes at your appointment as it is very difficult afterwards to remember all that is said (I forgot to do that on my recent follow-up! doh!)

Take care

Kel x

[Lin-lin]

I had my first follow up around four months after my SAH. I too was told at hospital that I would be invited to an appointment after six weeks and having to wait longer made me anxious. The appointment itself was a simple chat about how I felt I was progressing. We discussed my fatigue and insomnia and I was reassured that this was normal.

I was told at this appointment that I should undergo a CT scan. This was not to do with the SAH per se, but rather to assess the damage caused by the hydrocephalus after my SAH.

Looking back, I can understand how my follow up appointment took so long to arrange. The recovery journey is unfortunately long and the doctors know this. Had my doctor seen me at the six week mark, I am unsure what progress could have been made. I was still very ill.

It is unfortunate how a lot of us experience conflicting emotions whilst recovering, but we are not warned of this at hospital. Maybe doctors are reluctant to tell us, because I guess it is not guaranteed that we will feel down, but from chatting with people on this forum and at Headway, I understand that it is more common than not.

I have found chatting with people on this site and meeting people at Headway an important part of my emotional recovery. It is reassuring to hear how another person is experiencing or has experienced the same.

You are incredibly early into recovery, although to you it probably feels like a long time. I am 14 months in and if I could do things differently, I would have taken the first six months easier and not put too much pressure upon myself.

Another thing I should have done is contact Headway sooner. I approached them in December 2010 and it is a shame that I did not find them in the summer when I was really struggling.

Your brain needs time to recover form its ordeal and the only way it can do this is if you give it lots of breaks and take the pressure off.

Every time you are feeling anxious or emotional, remember that it is your brain’s way in asking you slow down. Use it as friendly advice from your brain; try not to rage against it. (The brain usually wins so it’s a losing battle anyway!)

Try to rest as much as possible in the next week or so. Don’t look upon this as ‘doing nothing.’ Instead, you are building a strong foundation to build your recovery.

Chat soon,

Lynne xx

[Sandi K]

Well said everyone.

I had my first appt with a neurologist 4 months and 1 week after my SAH. The appt was yesterday. I agree with Lynne, so much changes in a few weeks and think the docs wait to see how we are managing before saying anything. He explained to me that some people are back to work in three months but others take 6 months or longer. He said the 'type a' or 'overachiever' patients take longer because they are unable to do 5 things at once which was their regular routine prior to the SAH. They don't know us and they don't know how we are going to experience symptoms through our recovery and they don't want to draw out the path for us.

I learned that I might have some permanent eye damage but he doesn't want me going for an exam yet because again, things will change in the next few weeks so he suggested I wait until at least the 6th month mark.

It's hard to accept that it all takes time and in the first month or two it seems to be taking forever to get better but even at just 4 months now I understand that this just a blip and my brain is working magic in just a few short weeks. My perspective has changed significantly, once I accepted I needed to give myself time to get better.

Sandi K.

[FionaH]

Thanks Sandi and Lynne what you say makes a lot of sense.

I am (or I was at least) a 5 things at once type person so I am really trying to rest and not push myself too hard. I am just unsure what is taking proper care of myself and what is being lazy. I guess right now it is all taking proper care of myself! Work already mentioned my return to my huby when he took my first sick note in, I think that stressed me out more than I realised. He set them straight that it would be a couple of months at least though.

I am also glad to hear others have waited more than the 6 weeks they were originally told for their appointment. It does make sense no to be seen too quickly.

Headway meets monthly in Sheffield city centre from what I've read. I am considering getting in touch but feel reluctant somehow at the moment.

[Gill C]

Fiona I put off my 1 st appointment at headway 3 times but the final time they made the appointment I knew I was ready to go there! I mentioned this to the lady doing the assessment & she said it is common to go when you feel ready & not before. Having said that they tell me they usually deal with people further on in recovery (1 year or so) so I've been lucky to go at the 6 month stage. I also find it's really helping me, especially understanding why I feel like I do, my damage is mainly frontal lobe so it affects emotions & personality. It has also helped me understand my Dads stroke even though he is no longer with us.

Go to headway when you're feel it's right for you, you won't benefit if you're not ready for the help they can give you

xxx

[FionaH]

That makes sense Gill.

I am finding a lot of the stuff I have found on the internet confusing. I can't work out if a SAH is a typ of stroke or not and I don't know if that is because the information isn't clear or because my brain isn't working properly - probably the latter!

I think someone I train with is involved with Headway so I might ask him about it all when I am ready to go back to college and approach them when I am feel ready.

I really hope I don't have to have loads more tests when I go back to hospital but on the other hand I almost do want them to do one more scan just to tell me everything is fine if that makes sense? I think the reality of what happened (and what nearly happened) is starting to hit me and its had to deal with.

[Gill C]

an sah bleed is a stroke, also you can also have a none haemorraghic stroke (no bleed) caused by a clot blocking an artery starving some of the brain of oxygen. Both can cause parts of the brain to die off either by pressure or lack of oxygen. Vasospasms are a kind of stroke to as the blood vessels contract starving the are up flow of oxygen.

I didn't have a bleed (unruptured anni) but did have vasospasms during the op.

Hope that helps?

[Sandi K]

Took me a long time to understand that SAH is a type of stroke. Especially because the neurosurgeon told me clearly 'you did not have a stroke'. What the heck. Only confused me more and I didn't need any help with that!!

Sandi K.

[JayKay]

Hi there. I, too, was supposed to be seen 6w after the op, but the appointment came through for 3 or 4 months I think. Being a medical secretary I know how hard it is fitting patients in clinics, so all I did was check with the Specialist Nurse that it was ok for me to wait that long (she checked with consultant) and then chilled.

When I first returned to clinic they looked at my scar to see if it was healing well, removed a stitch from the back of my head where the drain was (it had been forgotten lol), and basically answered questions about the size of bleed etc. They also told me the fatigue was normal but did send for some bloods to check my thyroid was ok etc and that there was nothing else causing the fatigue.

At the second follow-up I told the surgeon's registrar I fully expected to be discharged from their care and he said "let's see if we can meet your expectation then" lol. This is because I know (again through my job) that they've done all they can surgically - I'm healing well etc - but any other issues are cognitive and not their remit. I was indeed discharged so my GP is the one I go to with any questions.

And yes, according to the Stroke Association, a SAH is a haemorrhagic stroke: something like 20% of all strokes are bleeds. The other 80% are ischaemic (due to a clot).

[Louise]

Hi Fiona

I cant remember now but I was months rather than weeks after I was out of hospital before I had an appt....

I suggest someone going with you to your appt, If like me although you could write the questions, writing down their replies is another thing, my hubby came in with me, so anything I forgot he could tell me what they said....

Kel, good idea though using diff colour of pen for answers I did ask about mine but they never did tell me where it was size or anything....I just asume it was front right as thats where my scar is.... could be wrong tho.....

keep resting as and when and listen to your body....

[Nessie]

Hi Fiona,

I can't remember the when of my appointments, but I thinks it was about 4 weeks after hospital. (got admitted in rehab center after, cause it didnt really go well at home.

I keep forgetting all that is said in a doctorapp. So I take my camera and tape it. (just point at the wall so I don't have them on camera.) I always ask if that's ok, and it has never been a problem. Saves my husband time since he doesn't have to tell me 100 times what was said and how.

My first neurologist appointments were just talking ( and a depression scorelist which is standeard here apparantly with stroke patients) , then after 6 months an MRI, and a new MRI in May coming up.

Hope that helps..

[JayKay]

Hi Fiona

I cant remember now but I was months rather than weeks after I was out of hospital before I had an appt....

I suggest someone going with you to your appt, If like me although you could write the questions, writing down their replies is another thing, my hubby came in with me, so anything I forgot he could tell me what they said....

Kel, good idea though using diff colour of pen for answers I did ask about mine but they never did tell me where it was size or anything....I just asume it was front right as thats where my scar is.... could be wrong tho.....

keep resting as and when and listen to your body....

Yep, I got my partner to come with me in case I forgot anything, but I like the idea of taping it....

Also, I didn't find out the first time where my aneurysm was (assumed front right like Louise!), but the second time I asked and the doctor put one finger on the bridge of his nose and the other at the temple and said draw a line from each finger and where they meet is where the aneurysm was! Right in the middle then I asked because when I looked up ascending communicating artery it was indeed in the middle underneath the frontal lobe (kind of) so I was confused why the scar was on the right. Apparently they gently probe between the lobes till they get to the middle (sorry if that's too much information) - they don't cut through the lobe, if you know what I mean.

Sorry to be graphic but it helped me understand! It also gave me greater respect for what I'd actually been through...

Edited March 21, 2011 by bogbrush
Removal of text-speak.

[FionaH]

Thanks

Husband will be coming along for the appointment as I won't remember what they say otherwise and I will write down any questions I have. I had to do that for my GP appointment last week!

I just wish the doctors had talked to me when I was leaving hospital not just before and just after the op when I took in so little (beyond THIS HUUUURTS!). I feel pretty rough today so off for a rest I think but really appreciating all your experiences x

[JayKay]

Take it easy!! You still need loads of rest.

[goldfish.girl]

Hi,

my experience has been that you are only told things are normal in recovery if you mention they are a problem for you. In some respects I think this is good as, otherwise, you might convince yourself you have all the problems on the list! On the other hand, perhaps if we were told more we wouldn't question whether we were just lazy or suffering from fatigue after a brain injury?

Maybe a list would be helpful for people to 'score themselves' but that would depend on the individual being determined to not suffer all the after effects and take pride in crossing many after effects off the list (the flip side being that it might make people feel worse if they can't cross as many items off the list as they'd like to??)