Feeling a teeny bit abandoned!

[DawnS]

Morning!

I'm now 6 1/2 months post sah. Apart from seeing my GP every 6-8 weeks or so, I have had absolutely no aftercare whatsoever. Is this normal? I've to have my blood pressure checked every 2 weeks and even this I do myself. There is a machine at the surgery where you put your arm in a sleeve and it prints out your BP, you hand this in to the receptionist and that's it.

I have been in touch with Headway, we are waiting for funding.

Headway have applied for me to have a care manager, I have called the Young Adult team (me, a young adult! ) and we are waiting for a case worker to come available.

I am waiting for the DVLA to give me their decision.

I am waiting for my 6 month check-up results to come back from Oxford.

There's a bit of a pattern developing here and I'm getting frustrated. I'm finding it hard not to think dark thoughts, I feel a little like I'm being fobbed off my people who a.) know I'll forget about them in an hour or so or b.) know I don't have the mental capacity to be more assertive.

I am sure that this is not really the case, but I read on here about some of you seeing neurologists and having your questions answered. I haven't seen a neurologist since the day I left hospital. I am really starting to feel forgotten. Because I am 'doing ok' it seems that it's been decided we don't need anyone else. I don't even know if there are services I should be accessing and simply don't know about them.

I'm sorry if I'm sounding a bit negative here, I just wondered if I'm missing something obvious?

Dawn x

[Gill C]

Dawn sending you huge hugs but no you are not alone.In fact I would say you see your GP more often than most of us!!

I was discharged from Wessex at my 3 month review & my GP didn't really need to see me so I had absolutely no after care whatsoever. I think most people say the same you go from 24/7 care on the ward to nothing at home & is really scary!!

I thought I was doing ok on my own & did make lots of progress but emotionally I was a wreck. My GP friend asked me how I was doing emotionally & I just burst into tears as no one had thought to ask me that before. I then contacted Wessex & asked for counselling. That was in the August & a referral was done but I waited a long time to be seen (it was almost 12 months in the end) & was then invited to a mood management course with other stroke & brain injury survivors. What I got was not counselling but CBT which was ok but not really what I needed although there were some useful pointers about negative thinking.

I got most help from headway & I saw them at 6 months post op, it was a huge help to me so may be have a google & see if they have a unit in your area. all in all the biggest help was from BTG, I don't know how I would have coped with being on my own without it.

If you feel you need help do talk to your GP, I left talking to mine about how I felt for over a year & wish I'd done it sooner.

You are never alone on here hon

xxx

[DawnS]

Hiya Gill,

thanks for that, the only source of support I have apart from my partner is this site! Thank goodness you are all here.

I have contacted my local Headway, we need funding. We can't get funding until I get a care manager. Even when we do get funding, I can't drive there. It's all just wait wait wait. I had some counselling from the corporate facility my employer pays for. It was useful and the chap I spoke with had a head injury himself years ago, so that was good. But, you only get 6 sessions and he was talking more about my upbringing than my current issues. It was useful in sorting out a few old hang-ups, but not for what's currently going on.

I'll speak to my GP and go from there.

Thanks for the hugs, they were needed!

Dawn x

[goldfish.girl]

Hi Dawn,

I think most of us have been massively short-changed when it comes to after care. It does seem that unless you make it clear to Dr's that there are some issues still affecting you, they just assume you are doing fine. It was nearly 2 years after my SAH before I got any help at all (and I didn't know about BTG then). I was at a follow up appointment with the surgeon & explained how tired I was, how my headache had never stopped & that I didn't remember things very well - suddenly there were referrals being sent to so many different people and help was put in place. I honestly think they just assume all is great unless you spell it out to them. Could your partner go to your GP with you to help you explain how things are?

Good luck, keep smiling, it will all get better & you have many people on here to talk to - you are definitely not alone!

Michelle xx

[debbie b]

Morning!

I'm now 6 1/2 months post sah. Apart from seeing my GP every 6-8 weeks or so, I have had absolutely no aftercare whatsoever. Is this normal? I've to have my blood pressure checked every 2 weeks and even this I do myself. There is a machine at the surgery where you put your arm in a sleeve and it prints out your BP, you hand this in to the receptionist and that's it.

I have been in touch with Headway, we are waiting for funding.

Headway have applied for me to have a care manager, I have called the Young Adult team (me, a young adult! ) and we are waiting for a case worker to come available.

I am waiting for the DVLA to give me their decision.

I am waiting for my 6 month check-up results to come back from Oxford.

There's a bit of a pattern developing here and I'm getting frustrated. I'm finding it hard not to think dark thoughts, I feel a little like I'm being fobbed off my people who a.) know I'll forget about them in an hour or so or b.) know I don't have the mental capacity to be more assertive.

I am sure that this is not really the case, but I read on here about some of you seeing neurologists and having your questions answered. I haven't seen a neurologist since the day I left hospital. I am really starting to feel forgotten. Because I am 'doing ok' it seems that it's been decided we don't need anyone else. I don't even know if there are services I should be accessing and simply don't know about them.

I'm sorry if I'm sounding a bit negative here, I just wondered if I'm missing something obvious?

Dawn x

Hi Dawn x well don't want to moan but it's about 14 months post sah/cranitomy,titanium clipped and i can honestly inform you that i have never had my blood pressure checked by any medical person, like you i do it myself.

Furthermore i came out of Hull Royal on the 18th Jan 11 and never saw a medical soul except my GP until 12/10/11 and i had to insist on this appointment .

Since then because i cannot get any other appointment to review my seizure meds until 4th April my GP has taken me off the tablets they were mking me ill, aggressive and so lethargic. My Gp didn't want to take me off but he had to make a decision due to my health , i'm so frustrated, like you i need to talk to a neuro staff. I have in the past spoke to the ward i was on before discharge but they are so busy and i appreciate everything they did for me during my stay I actually feel bad for complaining x so frustration is quite normal considering what we have all been through xdon't let anyone fobb you off Dawn, you have a right to aftercare but we have to stand up to the medical profession or we will be forgotton x

[Louise]

Hi Dawn I did see consultants only because I had to go into rehab hospital....then outpatients OT....

I think maybe you should give the hospital a wee call nuro as you will have a consultant see if they have info on your appt with the consultant...

I've never heard of doing your BP in that way how horrible.....

cuddles hope things feel brighter soon....

[Winb143]

Hi Dawn,

I felt abandoned today also.......Been told..No shopping trip ,,,No brunch ...sulks set in ...I became teary....and felt neglected ....

I wasn't being neglected..but I was on a downer lol....I get them now and again......swearing helps but it sounds so bad

My poor family...but my daughter said she will take me out..My hubby says "No I'll take your mum out" I am all happy .... or was !

This was at 8am and he said just let me sort my phone out,.......10.30 I was still sitting in chair ....... grrrrrrrrrrrrr

I was fuming ...so me being a sulker, took myself of to bed.

Muttering swear words....crying and eyes becoming redder....Well they are anyway !!.

Go see Doc and tell him/her how you feel..they wont understand but get it off plate xx

But all is well here now. I had brunch and fresh air,,well car fumes......so Cheer up Dawn and sing xx

Love

WinB143 xxxx Hi to All xxxxxxxxxxx Keep smiling as you get red eyes when down xx

[goldfish.girl]

Oh Win, so pleased you got your own way in the end - hope you & Dawn both feel so much better tomorrow.

Michelle xx

[DawnS]

Ah see, and there it is! A bunch of lovely people telling me that they know what it's like and sharing why they know.

That's why I love it here so much. Thank you all, I feel a lot happier and less lonely than I did this morning!

[Winb143]

Keep smiling and we can get through this...I am so sure of this.....after all we all have each other

We are the lucky ones who survived .... xxxxxxxxx okay positive thoughts only..xx

Love and laughter to us All xxxxxxxxxxxxxxxx oh yes and a song wont go amiss xxxxxxxxxxxx

WinB143

xxxxxxx

[KelBel]

Hi Dawn

I agree with Gill - you have 24/7 care one minute and then nothing... you feel abandoned, dazed and confused...

I got onto the PALS (Patient Advisory & Liaison Service) based at my hospital to ask for a follow-up appointment and had one 2 months after my SAH - because I specifically asked for it ASAP. I did however only see an assistant to the Neuro-consultant, who told me to go back to work, back to the gym and get back to everything!?! Yeah right! So I just had to listen to struggle on and learn to listen to my body...

They did then book a follow-up appointment for one year later (09/02/11).

Recently I had a follow-up MRi on 26/01/12 and have been waiting since to hear the outcome (I expected to get a letter to advise the outcome and next course of action) ... for the past 4 days I have been in email conversations with someone from PALS again, who kept telling me I had already had a follow-up appointment 02/09/2012... (erm, we haven't even got to Sept '12 just yet) ... then he said it had happened 09/02/12, but no he got it wrong again and eventually this morning he realised it was back on 09/02/11! So I have finally got a follow-up appointment booked for 7th March...phew.

I think we just have to keep on at them all. We have to fight for our rights to be seen and heard! - So get on the phone to your hospital Neurosurgery department, or the hospital PALS and request/demand a follow-up appointment.

Good luck

Kel x

[Carl]

There are huge cracks we tend to fall through after SAH. I have learned more in the past 2 months while being on here than I ever did in the care of medical people. My Doc told me once I need to take ownership of my medical condition. I wasnt really sure what he meant at the time but I think it means I need to be my own advocate. because many times there will be no one else available to speak out for me.

That is a long process. First I have to accept all that I have become and then tell others who need to know. All this without coming off as woe is me.

Emotionally when I went back to work I was ready, but as thinks skewed I came to realize the injuries my brain is suffering.

I often feel abandonded but honestly once I come on here and read I feel better. I visit and read as much as I can, but sometimes the reading is too much too so I nap

I hope you are feeling like others understand what you are going through, we can all relate.

Hugs Carl

[MaryB]

I think we all have been short changed as well. But it is not just us. My brother in law had/has cancer cells in his throat 7 months ago- dr said they got it all with biopsy. I was freaking out past 7 months knowing how aggressive you need to be with oral cancer. Well he never heal - went back - now seeing someone else. My sister in law asked if he needed to change his diet or anything. Dr. said no alochol - which was my my big concern all along as he enjoys his bottles of wine. My SIl was upset that she had to ask to get an answer but I read it in my research 7 months ago.

Dawn I am in the US so my Dr's are different maybe ? I also have thatpesty little brain tumor that was being followed up on so that is why I was back in neurosuregeons offfice the other day. Although I have a follow up headache appt with neurology on MOnday. I also have fibromyslais and had suffered with neupothy pretty bad a few years back b4 Cymbalta. I use up all my short term memory cells at work and when I get home I become a zombie.

I do not think Dr.s know the answers but certainly they can tell you more than just letting us wander around on the internet to find this wonderful site & support system.

I think I need a coloring book of the brain and them to show me exactly what happened. I cannot understand it and my surgeon and neurologist disagree I believe. I am going to ask fo rhim to take that brain scupurlture in his office and explain it to me how these seperate events occured. They never ever will admit the symptons I had for 6 months had anythgin to do with any of this but that month prior to my SAh I was so overly stressed and grieving. When my other brother in law was in that horrible tragic pill up accident and the cars caught on fire and he had to leave his greatdaughter burn with the car- she died on impact. My my BIL was a retired fire chief and I think it sucks really bad and is unfair that he had to be put in such a helpless situation. So I always remind myself as well at least that is not myflashback memory. He as well has head trauma and paralazied (SP) verterbes from the accident. Together we speak the same backwards laugage. well I guess that is enough typos for tonight. cold medicine is kicking my butt.

[donnamarie]

Hi Dawn i most of us feel abandoned after leaving hospital i would ring the hospital and try to see if they can get anyone to speak to you the larger hospitals in england seem to have nurses to talk to. i was lucky in the fact that i was referred to plenty of people but i keep going back and forward as noone was will to take me on stroke group said it was a brain injury group i needed so i was refered to them and they refered me to the stroke group swings and roundabouts. i changed GP a few months after coming out of hospital as i didnt feel my needs where been meet but i didnt do much difference. My GP hasnt seen me in 11 months even though i am still on strong painkillers which i have on script they just keep supplying them:crazy:. I am also waiting on scan results from December which i have heard nothing !!!. The best thing i find is talking to friends /family air out any concerns you have and you can talk to us anytime bigs hugs your way

donna

[SarahLou]

Hello Dawn,

As others have said, it does feel a bit like you've been abandoned. They fix us and off we're sent.

I do have to say though that the neuro support nurses where I was treated are fantastic. They met with my family and I while I was in hospital and they made it clear they were only a phone call away. And they were, many times! Even speaking to my hub and giving him advise when a few weeks after leaving hospital I went through a mega bad time of head pains, couldnt speak, screaming in agony etc, all because I'd done too much too soon.

Ive have had a couple of follow up appointments at neuro out patients, and an MRI in december, my results were back quite quick.

I'm waiting for a hospital appointment with hearing therapy, now that is proving a bit of a nightmare! Raar! Got to phone them back in a few weeks.

It often seems the way that we're the ones having to make all the phone calls, chase all scan results etc.

I do have to add that I'm also lucky enough to have a fantastic GP who I've known for over 25yrs so she knows me better than I know myself! She'll ask how I am, I'll answer, then she'll ask me how I really am. I'm walking close to the line with a few things lately which she is aware of.

I go to neuro support groups run by the hospital and I find them really helpful.

The most support I've received though is through this wonderful site. Don't know how or if I would have made it through without it, god bless you all.

Take care and keep smiling,

SarahLou Xx

[Kaz]

Sooo glad this thread has come up .....

I was treated at John Radcliffe in Oxford. The care received whilst in hospital was second to none and cannot complain but on discharge its like I was never there .... I am amazed that to have survived such a major event, survived brain surgey, we are then left to our own devices at home with not even a support phone line to call.

I often thought maybe I was too eager to just get home - couldn't wait to be in my own bed and wondered if I pushed to soon to leave hospital. I have even written to my consultant to 'complain' about the lack of after care received - this was about 6 weeks ago - I have yet to receive a reply - even an aknowledgment that they have received my letter!

I am now 5 months post SAH - I have my follow up MRI and angiogram in a couple of weeks time - again like most my GP has been fantastic (think I am now classed as neurotic patient!!) every twinge or headache I was in to see him!! Also had counselling thro both my GP and work which has helped but again only limited sessions.

Its been this site that has really helped answer questions and qwash fears - without you guys I think I would be a quivering wreck in the corner - we are not alone, and most of what we feel and fear others do to, which is such a relief to know that we are 'normal' and the weird feelings and sensations we encounter are also 'normal'

And unfortunately it woyld seem that no matter where we live, the non-exsistant after care is also 'normal' - such a shame

[DawnS]

Thanks for all the replies, while I wouldn't wish this on anyone, it's good to know that we all experience the same things!

I've a little update today, the DVLA have finally written to me! If I'd known that all I needed to do was have a whinge on a forum to get results, I'd have done it weeks ago! I've to make myself an appointment (always, the sah'r doing the running!) with a doctor in Northampton to be assessed for my ability to drive. I'll make the call as soon as I've worked out my other half's shift pattern for the coming weeks. And I've just re-read that and thought to myself, if I find that awkward should I be driving? The pattern is literally earlies/lates.

Still, I feel much more positive today, thank you for all the pick-me-ups!

Dawn xxx