Non Aneurysm SAH

[Guest Phil Price]

Hi All,

I am new to this site. 8 weeks ago today I had my non-Aneursym SAH. Had 3 CT scans and 2 Angiograms. Although identifying the bleed, no other usefull information gleaned from scans. No idea what category my bleed was but I am going to ask that when I see the consultant next. I have a follow-up MRI in 10 days time and hope that shows NAD also. Anyone have any encouraging recovery stories to tell me - say 1 or two years down the line??

Look forward to hearing from you. Take it easy. Phil.

[Ann]

I Phil

I have also responded to you in the "Introducing yourself" section, I took great comfort when I first came on here from Diane's postings from Australia as she was over a year on and was doing so much, I kept reading about her kayaking, walking etc and got great comfort from hearing that there was good life to be had again!It encouraged me to go swimming and cycling again (although I achieve much shorter distances than previously up to now)but I have now come to the conclusion that I was being impatient and that eventually, 2 years down the line I will be able to do everything i want to again. As I said I got great encouragement from Dianes postings and hope she is now doing really well and that we will follow in her footsteps!

Ann

[Janet]

bumped up for kellie

[Guest reme_1]

Hi you all,

I am a non aneurysm SAH'r too. Back in 2/2002. Don't remember too much about the 2 weeks in the hospital as I was alone in the hospital- family was far away. Had MRIs, angiograms, Catscans and xrays. On pain meds constantly. I think Iv and liquid diet. One vessel burst and the other went into spasm. We waited almost 2 weeks to see if the knot turned out to be an aneurysm. I was very lucky. Don't know why. I don't understand the cause, or why my body healed. I was also set adrift with the dr saying he didn't have any idea if it would ever happen again. Just be careful he said. Be careful? I lead a boringly careful life.

I still have temporal pain several times a year- it turns me into a mumbling zombie for several minutes. Mother (81) saw it happen for the first time and freaked out. I was wondering if i am dealing with any side effects or is it due to several years of stress and getting older. Forgetting what I was about to say right in the middle of a story seems to be the biggest nuisance. Anyone dealing with that? I just want to add that to all of you who have suffered a SAH, my very best to you or your loved one.

[Janet]

Bumped up for Sam hope it helps.

[SamB]

Hi

Thanks for that, Janet.

At least I know I'm not alone! There does seem to be a thread of lack of information being given to us NASAH (please excuse acronym - just a lot to type several times over!). You're just told you're "lucky" and to get on with life but "take it easy" - very frustrating! I am due to have another angiogram in 5 weeks and am feeling pretty apprehensive about it. For one, I'm not sure that the severe allergic rash I suffered wasn't due to the dye they injected (nobody at the Hospital seems too concerned about it!) and two, what if it shows up something they weren't expecting? Unfortunately, I do tend to have a bit of a pessimistic view on life so this kind of thing is driving me nuts! I have ordered a 'Positive thinking' relaxation CD to try and help.

Anyone know the score with the DVLA on this kind of SAH?

Thanks all x

[rod123]

Hi if you search for dvla you will find other threads on this subject as it was discussed very recently, I think the score is that you inform the insurance company but provided your doc says it's ok for you to drive then your ok but check what i've told you Good luck

[Jod-Dee]

I had my SAH on Oct. 23, 2009 and the doctors "think" it was non-aneurysm. 2 CT scans, a spinal tap, and so far 1 angiogram. It has been frustrating with the lack of answers sometimes, but I guess I should be grateful that it wasn't worse?

Sometimes it doesn't even seem real, there are no scars to prove it...I didn't need surgery. They said "it will heal itself". Why did it happen? Don't have the answer to that one either. Will it happen again? Probably not...How long will I take to heal?...

When I asked my doctor these questions the first few days after going into the hospital, he started with these answers. Then he got annoyed and rudely told me to stop dwelling on the negative. When I asked if I could see my CT scan he told me that it was too difficult for him to show me. I am one of those people who need to see tangible evidence in order to understand what is going on. Lucklily I had a very helpful nurse who printed off some info from the internet about SAH so at least I could understand what it was about.

Sometimes I felt that, because I didn't have physical proof of an injury, I was almost a burden to the nurses. That I was taking up a bed for "real" patients. Even the doctor seemed annoyed when I would tell him that my headache pain was sometimes not bearable with the morphine. He said my angio had come up clear, so he didn't see why I was even having a headache.

So far I have off of work until after Christmas, (I am a teacher's assistant) and am hoping by then that I will feel a little more like myself. Right now it is driving me insane that I am not able to do as much as I used to be able to do because of the headache that follows too much exertion. I kinda get sick of everyone telling me to relax and enjoy this time off of work, it's not like I am spending this time at an all-inclusive resort in Mexico! haha

Thanks for listening to my whining, and I do know that everyday gets a little better and things get a little easier...

[rod123]

Hi jod-dee, and welcome, you get all the support you want here, i think your doctor was very rude. I do think you are doing very well just to be posting,my wife had her sah in March and is yet to post it would be a major task for her at the moment so you sound as though you are doing very well, recovery periods are different for everyone and it's not always all steps forward as i am finding out all the time, I am always told all the time that i anylise far too much, so i understand where you're coming from, I think an sah is a life changing event for most people but you sound as though you're doing very well, so good luck with your recovery and best wishes Rod

[Louise]

Ji Jod-Dee

And warm welcome to the site. yes the doctor was rude to you, dont think in a lot of cases they know why it happens.

It is just a case of taking things easy (sorry) listening to your body saying slow down......

take care

[Karen]

Hi Jod-Dee,

You are extremely early days into recovery and sounds as though you're doing pretty okay...

I wouldn't worry too much, as to what's been said to you .... you've had a brain haem and that will take time to recover from. I can only say, play it by ear and try not to stress too much about returning to work after Christmas .... I'm sure that if you're still not feeling good at that point, that your GP will sign you off.

Nope, you won't be able to do as much as you would like for the minute .... but it will eventually happen ..... the time limit is different for us all and depends on the amount of damage that's been caused to the brain, by the bleed.

I think that a lot of us have questions that haven't been answered and I'm only a little wiser 4 years on ....

Wishing you the very best of luck and anything that you want to ask, then please feel free.... xx

[Ann]

Hi Jod Dee

Oh how familiar your post sounds, we must have had the same neurologist I think!!

No seriously though, most doctors only come across a few people in their career span who have SAH with no aneurysm, in addition to that there is little research evidence available either, so we are a bit of an unknown quantity, and as such tend to get fobbed off as doctors are not prepared to tell us they don't know the answers, that is how I feel anyway.

I have posted on here previously how I have felt a fake as there are no scars etc (try looking back at my posts, it used to help me to look back at a couple of others on here who had been through similar things who were a couple of years further in to recovery)

I can only echo what everyone else has said, you are doing really well to even be on the computer at this stage. Recovery is an unknown path, take it as it comes, one step forward and occasionally two steps back. Rest is definitely the most important thing, frustrating though it may be. Only you know how you feel and don't let anyone else dictate how you should be feeling and do not let them put a time scale on it, only your body can do that. Good luck,

Ann

[Janet]

Hi Jod Dee

A warm welcome hope you can find some of the answers you need here. We are a friendly bunch so any questions just ask. Hope your recovery continues to go well and lookk forward to hearing more from you.

[Jod-Dee]

I am supposed to be going back to work on Jan. 4, so hopefully all goes well with that. I am a teacher's assistant, and luckily had just started a new position (3 weeks before my SAH) that is not overly taxing on the mind. I think I feel fine to be going back...I know I am bored enough to be! And obviously if I felt well enough to go scuba diving on vacation, I should feel fine enough to go back to work, right?

I am scheduled for a CT Angiogram on Jan 14, and am hoping that there will not be the excrutiating pain like there was with the last one. (or is this the less invasive angiogram, with just he contrast dye injected in my arm or whatever they did the first time, and not the procedure where they go through your artery?)It was worse than the SAH, because at least with the SAH I was getting the morphine injections for the pain and also some compassion. The headache from the angiogram was about 85% compared to the headache from the SAH, and all I was given was Tylenol 3 and the wonderful bedside charm of the doctor's and nurses who made me feel like I should not even be taking up the space of the hospital bed! Admittedly, my SAH was nowhere near as bad as the majority of my fellow posters here at BTG, but I still wish I wasn't just put on a normal ward after the few days in intensive care on the cardiac ward.

I think if I experience any setbacks, my extended medical insurer will be fine with me requesting reduced hours/days. Was hoping to have been able to talk with her before going back, but have heard that there may have been a death in her family, so will just think positive and take each day as it comes

[Ann]

Hi there

DO not worry, the CT angiogram is the easy one with the dye in the arm just as you suspected so no pain and nothing to worry about.

Congratulations on feeling well enough to return to work but do not underestimate how tired it may make you feel, take care and do not feel that you have to be superwoman, if you need to do less hours then do so and speak to your employer. Good luck with the return.

Ann

[Karen]

Wishing you the very best with your return to work Jod-Dee! By the time that I have posted, you would have been back to work for a couple of days, so really hope all is going well .... I think that you can only play things by ear and just take each day as it comes, as we all seem to vary as to what we can achieve, post SAH etc.... but really hope that it's going well for you.....xx

I don't think that I had a CT Angio ..... I believe that I was given a CT scan when I was first admitted to hospital, but can't remember a thing about it... Hopefully Ann has put your mind at ease....

All the best Jod-Dee xx

[Jod-Dee]

Well, I have been back for 4 days now. Today I started to get a bit of a headache towards the end of the day. Lots of going up and down the stairs and trying to track down teachers. From now on I will use the elevator and just e-mail people. I guess it is lucky that a "full day" for me only consists of 5 hours, and that I am not required to do anything strenuous. So far, so good! Thanks for all the support and well wishes

[Helenm]

Hi Jod-Dee

Like you & many others on here I too had a Non-aneurysm SAH, back in August, & I am due back to work next Monday (11th). I'm sorry to hear you had such an unsympathetic response from your docs & nurses.

I agree with you that some people do seem to think we are sat at home having a jolly old time of it - some acquaintances (I refuse to call them 'friends' anymore - I now know the difference between them & REAL friends) have said 'Oh it must be lovely, aren't you lucky to have all this time off work, what have you been doing with yourself, etc etc...', like I'm on some kind of holiday!! I tell them that 'actually I have been working really hard - mostly on getting my brain to function normally' - it kind of shuts them up!

It is hard when there are no scars or real evidence of what has happened to you to come to terms with it; it's psychologically difficult. I had seizures when my SAH happened and was put on life-support for three days, so I find it very very hard to 'get my head around' ( no pun intended!), as I woke up feeling fairly OK.

How has your return to work gone? Are you coping OK? I work in a school too, as Admin supervisor in the school office.

don't overdo things, remember to rest & drink plenty. This site is fantastic - you will get plenty of love & support here.

Love Helen

xx

[VixC]

Hi there

I'm a new member - SAH 23.11.09 - It's interesting to see how you are getting on on your return to work. I'm not going back just yet, it's only been 2 months - do not feel able to go back unless I'm feeling emotionally ready as well as physically. I'm going to contact Occupational Health to try and arrange a phased return in perhaps another month or two. My neurosurgeon said that this was a good idea. I have been officially discharged today as I suffered an 'angiogram negative' SAH so there's nothing more they can do for me.

I do feel that SAH is, in many ways, an 'invisible' illness (apart from the tiny scar in my groin and that's not on show!!) Unless you wear a T shirt saying I'VE HAD A BRAIN HAEMORRHAGE people are unaware. I might get one printed!!!

[Janet]

Hi Vix and Welcome

I think you're very brave to be considering returning to work so soon. It took me nearly 7 months and even on a phased return it was really tiring in the first few months.

You'll find a lot of us have and had the same problem even though I had an Anuerysm clipped after my SAH the scar healed really quickly so a lot of people didn't even realise that I had suffered a major trauma. Most people just assume that if we look ok we must be back to normal.

Look forward to hearing more from you.

[rod123]

Hi Vixc, i agree with Janet returning to work too early is a very brave thing to do,and could be a set back, I found with my wife Merrill,that not everything was steps forward, sometimes different problems occur as you go along admittedley she had quite a lot done but my theory is that these are different stages of the brain healing, this may well not be the case for you but please don't try to rush things too much. Best wishes Rod

[Skippy]

Hi Vix

I have a tee shirt with "I can see clearly now the brain has gone" written on it lol - gotta keep that sense of humour lol

[bogbrush]

Sami, I bet you didn't know we still had this photo Click the picture for a larger version.

[Jod-Dee]

Sounds like we may have similar circumstances, as my SAH was unexplained as well. For me at first it was the headaches, then after about a month it was tiredness. But the worst was the first 6-7 weeks of an emotional roller coaster. Maybe the sympathy lasts longer when you have an actual surgery...I don't know about you but I "lucked out" (if you all will pardon the expression) and did not need a clip or coil. I think that is when the emotions would all well up, because I felt somewhat abandoned by everyone in my life except my boyfriend, who because he lives with me could see that most days were a struggle. I think going on my holiday helped to cheer me up quite a bit, nothing like a huge dose of sunshine to make everything seem more bearable! My extended health person was supposed to talk with me before my return to work, and she just never returned phone calls or e-mails after my disability claim originally started. I was supposed to start back to work, with the idea that she would contact me to see how I was doing, and possibly be a gradual return. Luckily, it was bearable, because there was no support from her! Although there is an advocate at my job and she asked if I was doing okay after about 4 days. And I know that if I really couldn't have handled it I could have talked to someone at the schoolboard office to say so. After not doing much exercise for a few months, it was a shock to the body anyway going back to walking around and doing stairs. For the first 2 weeks I was quite tired at the end of the day, with somewhat of a headache most days. But for me it was like when you have a headcold, nothing major like the real ones that started it all. I would just take it easy when I got home and get lots of rest, even go to bed sometimes at 8 or so. My job is only 5 hours, and mostly an office type job, so not very strenuous. So I guess, VixC, what I am trying to say is......your body will definitely let you know when it is ready to go back to work, so don't push before then. Some people like to say don't rush it, but some may go a little bit crazy sitting around...hurrying-up-and-waiting. I know I was like that. But on the other hand, I sure wasn't gonna show up for work when I was ready to cry or argue at the drop of a hat, because that wouldn't be anymore fun than a headache or exhaustion. Well, that's my update and hope it gives a bit of help. Good luck and take care.

[Liz D]

Hi Vixc

I returned to work in December after being off for 9 1/2 months. It's not been easy (there is a thread titled Returning to Work where my stress is documented!) but things are much more positive now. I think some people are under the impression that we are "better" because we're back at work! It's hard to explain that this is another step in recovery. It comes down to each person's nature, if they have an empathetic nature confidence grows with the support. But if they are unable to show any empathy then it's harder. As I said to an OH nurse, this is a big enough battle without having to battle with other people!

I see you are an assistant head teacher, is this a primary school or high school? Involving occupational health will be a good idea, ask if they have experience of someone with a SAH, don't agree to too much at the start, take it slowly at first. My phased return is being referred to as a rehabilitation programme. Phase returns in our NHS Trust are usually over a fixed period from 4 to 8 weeks. My return (if I do manange 35 hours) could take 6 months. Just think things over carefully and don't push things too much at the start of your return.

Take care

Liz xx