no after care Grrrrrrr

[cheezo]

Hi. I just want to moan about the ZERO after care

I had my sah on wed 8th may and my craniotomy on the 9th which is 9 weeks ago- care in hospital was fantastic but ive been out 7 weeks now and had nothing- nada-zilch contact with anyone. Thats a lie my doctor came to see me for a few minutes when i got out to say sorry to hear what happened hope your ok goodbye - seriously that was all. They opened up my skull for godsake I thought id at least get a check up of some sort, even an appointment to ask how you feeling. I'm really angry about it.

I take painkillers and common sense tells me to take them when needed and if i feel i dont need so many then dont take them - same with the ones that help me go to the loo. However what am i supposed to do about the one i take morning and night for seizures and the one i take in the morning that helps your tummy because your taking so many god damn pills

Sorry to rant but i feel sort of abandoned

Lesley xx

[Gill C]

Lesley I think you'll find most of us are the same although I did have a 3 months checkup & was then discharged & have had no contact since. I did get given the ward number & the one for the neuro nurses but I never used them as I felt silly wasting their time.

I am sure you should have some kind of checkup though so if you haven't heard anything soon I would ring the neuro to see whats going on.

[Winb143]

My Husband said he had to fight for every little bit of help we needed.

Keep well Lesley and keep on their case xx grrr

I am glad I see no one now as after having a year of being washed by others and people coming round my house

B.I.T. Team etc. doing me no good whatsoever just talking down to me !! That is how I felt anyway.(not all the bit team)

Just 2 of them on my hit list lol

Was glad to be my own person again and live my own life xx

Be Well

WinB143 xx xx

[Karen]

Hi Lesley,

I would contact your GP and make an appointment. On discharge from hospital, they would have transferred/copied your hospital notes, medication list etc to your GP so that your care can be continued - blood pressure is something that is normally monitored for a while post SAH. If you're on anti-seizure meds, you may need to have blood tests at certain intervals to ensure that you have the correct level of medication in your system.

If you're still unsure, contact your Neuro's Secretary at the hospital and explain the situation to them. xx

[iola]

Hi Lesley,

It's amazing how you just feel forgotten. I felt the same. As for your meds most definitely contact your neuro folks. I had to do that and my doctor told me what to do with the meds.

I

[cheezo]

Thanks guys

I will contact them in a couple of weeks if not heard anything- a friend has given us her log cabin from sunday and im hoping i manage to stay for at least a week so will contact them on my return.

I really think when you leave hospital it should be with an appointment for a check up be it 4wks or 6wks whatever but at least it would be something. Obviously I've had no real complications or i would have had to call someone but thats not the point- i might not need to be taking some of the meds - i might have been depressed and no one would know

Anyway I'll get on their case when i come back

Lesley xx

[MaryB]

I would not have any contact with my neurosurgeon if it were not for my brain tumor! I saw him montly for 3-4 months and now yearly. I have debated if I should get my last scan in December as it cost me about $3500 out of my pocket.

Saw 2 different neurologist and I ended up hating them both - they could not get out of the room fast enough and never opened my chart. Really a waste of time and money. Therapy worth the money big time as is my understanding GP. Although to one thing the last neurologist got right was the Channel Blocker as it controls my wacko blood pressure and headaches really well.

Personally I think we can change all this in the future. I am hoping someone other than our darling Karen will come a long and invite us into their circle. I personally beleive they do not know what to tell us so they say nothing. They do not want to lean us one way or another.

I have thought returning to work so early was a big mistake but now I think it is so interesting as that is the one thing I do best. I still stand in my house not knowing what to do but at work I have a focus. Not saying it is not really tough on my brain to work. Interesting though that area of working and making decisions on what vacccinations are next, what will the dr. need before she comes in rooms ( urine or blood etc), timing my 2 exam rooms and making sure waiting room does not get backed up etc... I still am number 1 at my job but I cannot spell, find words or reconize cases or people?

The brain is amazing and know you will continue to get better and better even after years. Maryb

[Daffodil]

Lesley, I think you have to speak up and this is not an ok state of affairs. A level of check and aftercare would be good. My daughter hurt a leg muscle and was asked to go back in two weeks , you hurt your brain! Getting BP checks etc is not a waste of someone's time. I would hope they would reassure you of that.

I had some horror story moments in the care I received in hospital but also encountered super hero nurses and doctors and received some exceptional care and I personally think that this violent swing of contrasting levels could easily repeat once your in the care of your local team if left to the system as it works and you could easily Fall through the cracks.

My experience has shown me the importance of creating relationships with the people who are important in my aftercare. I thinki have mentioned that I get monitered for life now so figured it was probably up to me to make sure I knew what care came from where and be sure that I was getting it.

I now know my doctors receptionist and they know me, if I call they do their very best to find me an appointment when I need one. My GP and I have developed a fabulous relationship and other GPs at the surgery know my history too and he is a cornerstone in supporting my recovery . I have numbers of my neuro nursing team and as i got to know them well in hospital i felt confident in asking for help especially early on by phone or email. I figure that it's part of their job and my experience has taught me they really like to be able to help and appreciate being asked. I have asked for help, been honest about what I needed and when I struggled this team have shown that they are able to wrap around and work together and support me.

I contacted Headway and they assigned me a support worker early on and whilst I don't need her now I keep in touch and the door is open should I need more help in the future.

I had a clinic check at 1 month after discharge, a check up with my surgeon 3 months after surgery and lots of GP appointments in between . The same pattern repeated after I had surgery to have my shunt placed.

You may be happy flying solo and I applaud that but I don't think it's too much to make sure you're on someone's list of people that they should check on and in with to be sure you are getting the help you need. We are all different, have varying needs and levels of rehab support but I would expect ANYONE recovering fom major surgery should at least be visited by a district nurse or have follow up appointments in the diary. If you haven't then I would make a little noise.

[Desy]

Cheezo please don't take it, you have to stand up and be counted or else you will be just another number in the nhs I know this as my partner and most of my friends work for the nhs and as good as they are you can and will get lost in the system.

I can remember when I was in and they forgot to feed me and give me my meds for the day, I had lost three stone in weight, could not get out of bed and refused to use the buzzer and had a pumping headache, my other half came in at visiting time and when I told her she went out and went through them, she was not cheeky or disrespectful but just made sure I was getting the care I needed, she always said that when you get put in a side ward you tend to be forgot about especially if you do not speak up like me.

After my second stint in I was due to be released but had to wait on the neuro doctor speaking to me, the registrar called this meeting the reassurance meeting, well four hours later was told he could not make it and I was being let home, well there was a few things I wanted answers to but hey ho off ya go lol oh and got most of the answers, off this forum.

I can tell by your post that you are upset about this which will do nothing to aid your recovery so please get on the phone and demand that someone speaks to you at the least and puts your mind at ease, like I say my other half has 13 years in the nhs and knows how it works, which is, if you don't get on there case they won't be to quick to get on yours.

[SarahLou]

Hi Lesley,

I agree, book an appointment with your GP and explain how you feel. Get a medication review and see if there's any changes needed.

I was very lucky with my aftercare. In early recovery my GP made a couple of home visits when I wasn't well enough to go into the surgery. I did find it hard to get an appointment with the doctor when I called them, I put in a complaint and that was soon sorted out.

I was given the phone number of the neuro ward and the number of a neuro nurse specialist who I called many times. Never once have I ever been made to feel I was wasting their time with my questions and queries.

I saw my surgeon 3 months after my operation (clipping) for a check up.

I had an MRI about a year after surgery and when I saw a consultant last December he said they would recommend MRI about every 3-5yrs, mainly because I was under 40 when I had my SAH.

The aftercare is out there, we just have to push for it, which I know we shouldn't have to.

I've not used Headway but I always hear positive stories of how they help so maybe this is an option for you.

Take care,

SarahLou Xx

[sarahk67]

I understand how you feel Lesley, I feel exactly the same - what the hells's going on? You cracked my skull open, fixed it up and shipped me home, now what - nothing, that's what. I had the district nurse round the first week I was home to take some stitches out where the drainage tube had been and I've seen my GP every month, but all he says is 'it will take time' which isn't really giving you the answers you want is it? That's why I find this site so comforting, it's the only place I can get any information and not feel so alone.

My medical discharge form stated that 'no aftercare was needed' despite having been in there for 17 days and my head shaved and clipped. Incredibly frustrating isn't it that you then have to go and find any answers you require where as you quite rightly say, something like a broken leg you get rehab and follow up appointments. This obviously happens to alot of people considering the amount of members on this site alone so you would think some form of 'official' follow-up would be in place.

Hope you enjoy your time away,

Sarahk x

[kpaggett]

I could have written all these posts. I had no aftercare either. I was sent home with only one brochure from a nurse about sex after stroke. Really? That was the LAST thing on my mind seeing that I could barely move my left arm and was so emotionally labile. I was suppose have one follow-up with the neurosurgeon at 6weeks post, but he couldn't make it and I got some young assistant(not a doctor) that couldn't answer any of my questions after waiting for over an hour in the waiting room. Why couldn't they just let me know what was going on so I could decide to see a lame dude or the real deal later on instead of just making me wait and then charging me. I loath the medicine here in the US. It's all about maximizing profit for the hospitals and the doctors get caught up into thinking that what's best for the hospital is best for them. It's not always what's best for the patient. Sometimes it is in a weird way.

After calling my GP over all the strange things that happened in the early days, I stopped all contact. I was so tired of being the interesting case or the one that a given GP knew nothing about. I know more about it than they did...so why was I asking them? Now I've moved and am required to see a doctor by September. I don't want anything done...I'm just going into the appointment like they come in...unprepared and not caring. No tests thanks for trying.

~Kris

[Winb143]

My Husband, Al, had a male nurse we could contact for instance Al had worries about me having shunt put in.

He rang the male nurse and said he did not want me to have another op. Nurse said hold on and he will talk with

surgeon.

My surgeon rang my Al back and said I will be okay and if it was his own wife he would go ahead.

So my Al let me have shunt fitted and in 2 day I was home. Went in Thursday pm and came home on Saturday pm.

So I am pleased at the nurse we had, as I would still have been in cuckooland.

Met male nurse in shopping centre he was so nice.

But never had any P.T. grrrr. I wont go on about them !! another grrrr for P.T's.

Be Well All

WinB143 xx