Members that have had a non-aneurysm SAH?

[PatrickK]

OK, that's kind of what i figured from the doc's response (he might haven even said this was very common, i was pretty drugged ).

Pat

[Louise]

I think maybe thinking about it that may have happened to me too I completly forgot about that

you made me remember something cheers for that;-) I also had a sort of Icey/hot feeling, so long ago now....

[Stuart]

Here is a long overdue update from me, bad news first.

Basically I've had a hard time following a craniotomy in Oct for my dural fistula. I was quite well after a SAH in Aug amazingly, then I had an op to disconnect the fistula which went well and I was fine straight after.

The problems then started due to swelling of the brain. I had very sroke like symptoms and at one stage I couldn't touch my nose with my hand.

My right hand felt like a constant electric shock so had to use my left for everything, couldn't walk too well, lost the peripheral vision in my right eye, developed dysphasia and cognitive problems.

The good news is that I'm improving well, my speech is 95% normal now, I can read and write ok again, have relearned how to type and everything apart from the sight seems to be slowly improving, although I'd like it to be quicker !

I've got a long way to go until I'm as sharp as I used to be but am positive I'll get there or near enough one day.

Oh and the fatigue is hard work but that is getting better too.

Stu

[kempse]

So pleased to hear from you Stuart. Sorry to hear you had the problems you did, but very glad to hear they are improving. I think we can all relate to the fatigue. It sounds like you are doing remarkably well and I hope this continues, particularly your vision problems as I imagine that is not nice.

Wishing you all the best,

Sarah

[Louise]

Hi there

sorry things have been rough for you but good to hear they're improving - if slowly.....

I had to learn to do things again when I was recoving you take so much of day to day things for granted...

hope things keep improving, take care....

[Janet]

Hi Stuart glad that you're starting to feel a bit better now. I'm not surprised that the dreaded fatigue is a problem but you sound remarkably positive considering the amount of obstacles you've had to face. Wishing you well with the rest of your recovery just remember to get plenty of rest.

[Stuart]

Thanks all for your kind wishes. I have learned the hard way about overdoing it, so am learning to listen to my body.

The NHS speech and language therapist phoned yesterday and after a chat decided that I didn't have a great need for therapy now and should carry on doing what I've been doing on my own.

[Liz D]

Hi Stuart

Good to hear from you. I was thinking about you on the 26th. You are doing really well in such a short time. I had a brain stem stroke during my coiling, which left me with left sided weakness. I'm lefthanded, so I just kept trying to do the things I found difficult and it got better in time. I did get 4 months of physio which was a great help. But it took me months to be able to sit and type on the computer! Time is our best friend!

Keep up with the hard work and rest whenever your body tells you.

[Stuart]

Well I had my follow up meet with my amazing Neurosugeon yesterday and he seemed pleased with my progress. I will be having another angiogram (yuck) in 4-6 weeks and if the results are good then that should be it. No more scans and I can get my life back hopefully.

[Liz D]

Brilliant news Stuart, fingers crossed the results will good.

[kempse]

Hi Stuart

If your neurosurgeon thinks you are making good progress then I think that deserves a big:thumbsup: Well done and good luck with the angio - hoping the results will be good.

Take care,

Sarah

[Karen]

Hi Stuart,

That's good news and will keep everything crossed for your next angiogram (yep, they are yuck!) .... wishing you the very best of luck and let us know how you get on.

xx

[MaryB]

I had a non aneururysm SAH on Sept 16, 2011. Horrible headache felt like star wars with laser light show. I had to move holding my head in my hands for a long time I was vomiting then I would I would scream in pain because I moved my head. I was undiganoised for a few days or misdiagnoised as it was in an rare region of the brain in the right back. During the first 3 days I was treated only for the DVA on the front right of my brain. After that I was transferred to a neuro center in a larger town. I was nick on brain stem during the angiogram- had fireworks & lightening coming out of my finger tips, toes, & eyes. Scared to death to get another, I have had enough radiaton to last me a lifetime between the CT Scans, and MRA's & MRI's. During my 2 or 3 month follow up MRI they found a tumor in my "posterior superior left posterior fossa along the tentorium" - Small jelly bean size. Next MRI end of February. So my offical DX was SAH with blood in spinal fluid, intracerebral hematoma or hemorrahge? ( they call it a stroke?), Verteral artery dissection, Tentorial tumor. I am doing faily well, but I had no idea I was going to down for so long. I thought I would be back to work in a few days, than weeks, maybe a month....then they said 3 months.... .....

Edited February 6, 2012 by MaryB

[chweetgurl]

I have read through your posts in this thread and it is very helpful to understand what my boyfriend is going through after his SAH on 3rd Jan 12, Unfortunately Out of Hrs and his GP did not pick it up and 3rd time around i had to ring ambulance as he was in agonising pain. After 5-6 hrs long wait in A&E the doc did blood test and CT scan picked up he had a bleed. Bless him he immediately contacted hospital with neuro speciality and transferred us by 5th Jan early hrs by ambulance.

The time we arrived A&E staff did mention he would be taken for angio gram that afternoon.He returned to his ward after 3-4 hrs surgery. Next day afternoon we managed to get hold of medical registrar looking after his case we were told that no aneurysm and the problem area not picked up. They are monitoring him currently over the weekend. Thinking to conduct a CT scan tomorrow and based on outcome maybe MRI.

After anguishing 4-5 days pain he seemed to be bit today although he gets this annoying constant hiccups, We been advised could be due to painkillers side effects.

Now need wait and see what they come back with. Its quite tough time but reading few stories here and how brave you all are there is ray of hope.

[Jod-Dee]

Hello chweetgurl,

That must have been such a scary first day for both of you. It is all a little overwhelming when it first happens, because usually we have no prior knowledge of what to expect. And it is agonizing to watch or be someone in so much pain, when it seems nothing really helps. Take it one day at a time, and if you have questions, there always seems to either be someone with the answers or a thread with helpful info. Fingers crossed that the CT scan and/or MRI brought good results. Remember to take care of yourself too. *hugs*

[chweetgurl]

Hello

Thank you for kind reply and assuring words. Its true that this is very rare condition not much information out there. First time i have ever heard about this medical condition myself. Also very little info you wuld get even from medical professionals themselves! I will keep looking for info and also once he is bit better and able to use computer will intro him to this forum as he may have his own questions and looking for answers and there are amazing people here with lot of support

Today after bit of pushing from his bro they confirmed Another angio gram in 6 months time, Although they are yet to discuss with the radiology team about his MRI scan.

He has also had terrible hiccups non stop with only few hours gap from past 3 days , Not sure if anyone had this problem after SAH? It is causing him stress and another problem to deal with as he does fall short of breath sometimes

[chweetgurl]

I though wud update that he has been now discharged from hospital with a set of medication and to be followed up by

MRI scan by 6 weeks time...

Its definitely back of our mind as to where the problem area is and what would happen next? Just take it day by day i suppose... although him being energy bunny he wants to get back to routine like before...fingers crossed

[kempse]

Hi there, sorry I missed your original post. Firstly, welcome to BTG. Pleased to hear your partner is out of hospital now -It's still very early days for you both, but I'm sure this site will give you a good point of reference with regards to what you both might expect in the coming weeks and months as he recovers from his sah. Going back to your first post, it appears quite common for doctors not to pick up on these things which is quite alarming really. I know in my own case it was missed on 4 occasions, by doctors, paramedics etc, but I did finally get to hospital a week later:roll:

I hope the hiccups have stopped.

Best wishes

Sarah

[chweetgurl]

A week!! Blimey! Although there are classic symptom signs (i only realised when i did some research) you would expect

the medical professionals to pick up most of the posts i have read here apart from few in serious circumstances seem to have not been picked up. Next thing on my list is to change is GP(Locum) who definitely let us down big time.

The hiccups have stopped they have given medication for this purpose, I also read its one of side effects to Nimodiphine.

Fingers crossed

I will try and catch up through your previous posts on how you had SAH etc..

Thank you for reply and best wishes

[loretta963]

Your site is a Godsend. My husband had his SAH just over 1 1/2 weeks ago. Was doing great in hospital by second day, but then developed a brutal sinus infection. He has had excruciating headaches and neck pain chronically since then with little or no relief from all meds. We do feel his recovery was delayed due to sinus infection, and that appears to be out of his system now.

Did anyone else experience excruciating headaches in the days, weeks or months to follow their SAH? These are occurring 24/7. They switched him to Fioricet, but these only help a little. I have to add that he is finishing up a 6 day medpak of methylsprednisolone (steroids) for the sinus infection, and we are hoping when that is out if his system, we will see improvements.

Any advice, thoughts or encouragement would be greatly appreciated. He is in constant pain that seems like it will not end. Thank you all.

Loretta

[kpaggett]

When my nonaneurysmal pSAH hit, I was paralyzed and couldn't speak. I am a neurophysiologist so I was trying to figure out what was happening while unable to communicate. Bluh! But it does get better. Whatever the initial symptoms are, you gradually improve. I'm not saying it's ever easy...as a matter-a-fact, it's the most difficult thing that I have ever gone through (even more difficult than neurophysiology-tests or projects and publishing), but talking about where you are and reading about where others are in their recovery helps to alleviate that isolation you tend to feel. I didn't have any head-aches except for the initial one which was the worst and weirdest ever, but it is a very, very common thing. However, now if I get the slightest headache, it scares me even though intellectually I know the likelihood of this ever happening again is basically 0.

[Silang]

Hello, I had a NA-SAH (perymesencephalic) on 23 april 2009, big big headache, had to stay one week at the hospital and 1 month at home, I felt retrospectively that 1 month rest was not enough. I was very tired for months, and worried that it could happen again although the doctors said it would be very unliely. I had headaches for months. Still now, usually when I am stressed, I feel again pain in the head. However, I'm in much better shape. I have much less anxiety that it could happen again.

Hope it helps those that are more "fresh" from NA-SAH.

Cheers, Sil

[Jod-Dee]

Your site is a Godsend. My husband had his SAH just over 1 1/2 weeks ago. Was doing great in hospital by second day, but then developed a brutal sinus infection. He has had excruciating headaches and neck pain chronically since then with little or no relief from all meds. We do feel his recovery was delayed due to sinus infection, and that appears to be out of his system now.

Did anyone else experience excruciating headaches in the days, weeks or months to follow their SAH? These are occurring 24/7. They switched him to Fioricet, but these only help a little. I have to add that he is finishing up a 6 day medpak of methylsprednisolone (steroids) for the sinus infection, and we are hoping when that is out if his system, we will see improvements.

Any advice, thoughts or encouragement would be greatly appreciated. He is in constant pain that seems like it will not end. Thank you all.

Loretta

Loretta,

I found a huge relief with those gel ice packs, would wrap them in a tea towel and put one across my forehead and one across the back of my neck. Think they helped twice as much as the pain pills they gave me. The pain comes from the blood in the cerebral fluid, so until it is absorbed over the next few months he will still have headaches. Hope it helps!

[Mollynjosie]

Hi it's been a while since last post. For those new here. I had my sah/ stoke back in march 011. It has left me with memory issues. And right side devisite. I remember bits of that day. I was with our vet doing a x- ray on equines leg. I was bending over to hold leg. I went inside sat down then the pain at base of head started. On a scale 1 - 10 it felt 20 it was incredible. I was holding neck screaming. That's all I remember. The rest my family has filled in. Plus they wrote a diary for me. They called a ambulance which took me to local hospital the ambo's told triage nurse I had a bad migraine. My mum & sister disagreed. The dr came in asked them what was happening after my mum told him of the pain. He went and got a senior dr. After talking to my mum & sister the dr asked nurse to call ambo's. The ambo's who got the call came. Same ambo who told nurse I had migraine. The dr told them to get me to a melb as fast as possible. Dr told my family I had a sah. If I survived the trip it would be less than 50 % as most don't survive a sah. I spent six weeks in I.c.u. Unconscious for part of it. And four weeks In h.d.u in h.d.u was where I suffered the stroke.

I forgot to say I had 5 angiograms. In which they wrecked all but one vein leading to brain. To discover my sah wasn't due to anurism.

The most upsetting of this is the memory issue not remembering family, friends. I know who my parents, sister, b/ law. Niece are but other family no memory.

Now in 012 the memory issue still remains. The lack of feeling in right side remains. I feel tired. I have headaches Every so often. I get fatigued walking long distances. I see my neurologist every three months. I have depression which doesn't help. Some days are good some bad.

By the way I'm 38 was a active person before. Now I can hardly do anything.

It changes your life. As In all honesty most people don't survive sah's. So I cheated death I guess or had someone looking over me. Not that I'm religious.

That's me.

[Sandi K]

Mollynjosie it's good to see you back here. I've wondered how you are. You were going through some very difficult decisions last time you were posting and were about to visit your neurologist. Im sorry to hear about the fatigue and depression.

Sandi K. Xoxox