Hi!

[Guest Ember]

Hello, my name is Ember. I'm 35 and just had a category II SAH in the brain stem area. My neurosurgeon tells me that I am in a 15% of people with this kind of bleed that do not have any neuro effects other than headache and tiredness. I feel very, very blessed! My bleed happened on October 1st. My fiancee took me to the nearest hospital when I developed that intense fire headache and vomiting. They did a CT scan and diagnosed the bleed, then transfered me to a different hospital for neuro ICU care. My first angio showed the bleed but no obvious aneurysm so they kept me on bedrest and in ICU with all the meds and stuff to keep me from vasospasming and keep my blood pressure in control and to control the hydrocephaly that was developing. 9 days later they did another angio which again showed signs of the bleed but no sign of anything to coil or clip. A follow up CT showed that I had reabsorbed the blood. They also did MRI and MRA to try to find a congenital abnormality or some such but still negative. So, I got transferred to a regular floor where they weaned me off steroids and other stuff and I went home this past Saturday. I am having daily headaches that are pretty well controlled with Tylenol and my body is so not happy with having been in bed for two weeks, but I consider myself incredibly lucky and blessed. My doctors didn't clue me in to the statistics much, which I have been reading up on since I've been home and I'm very glad for it because I probably would have been much more frightened while in the hospital. I'm a registered nurse myself, so they did speak to me directly about tests and labs and meds and things. Anyway, I am learning more and more since I've been home and it is nice to find this site. I see my neurosurgeon in two weeks and will have another CT, MRA, and MRI done in four weeks but unless those show anything new, no more angiograms. I am filled with gratitude to be alive and healthy and thank you for the space to tell my story to others who understand.

[Karen]

Hi Ember,

Welcome to the site!

Hope that you're taking it easy! Sounds as though you're doing pretty well, considering what's happened to you. Please do take it easy though, sounds as though you have been blessed....but listen to your body and rest up....even though you're a Nurse!

Hope that you find the site helpful.....lots of us just look in to have a chat ...we all have good days and bad days ... so hope that you will let us know how you are getting on.

Take care and rest up!

Love Karen x

[Annie]

Hi Ember!

Your experience sounds a lot like mine. The hospital part was very similar. I had some other difficulties as the blood disapated, and awful alergies to some meds, but also very grateful and glad to be part of that small %.

Expect to re-enter the earth's atmosphere s l o w l y! I am a year after and still napping a lot.

You are very lucky to have this site during your recovery... all thanks to our intrepid Karen!!!! rah!!

xo,

Annie

[Guest barney]

Hi Ember & Annie,

Well it looks as though I may have entered the exclusive 15% club as I too had a bleed (age 61) somewhere in the brain stem (indicated by swelling that showed up on campartive MRI's taken when I was admitted to hospital and about four weeks later), fortunately the brain stem swelling had diminished by four weeks and the bleed repaired itself so there was no surgery involved. The bleed occurred suddenly in the middle of the day with the symtoms being a tightening of the muscles up the back of the next and along the top of the shoulders, followed by unblievable pain in the back of the neck. I spent 12 days in the high dependency unit (HDU) of a neurological ward. Had bad headaches for about two weeks after discharge, those have gone but I am get tired very easily - interested to hear that you still get tired after a year Annie. I suspect that some of my tiredness may becoming from the drugs (betablockers) that I am taking to get my blood pressure down. Just before being admitted to hospital my BP hit 210. I have gone back to work parttime (as a consulting biologist) and suspect that I will stay parttime for some time.

Like you both I am just very pleased to be in that 15% and plan to get as much out of life that I can.

Take care,

Barney

[Annie]

Yes, Barney, we are lucky. And it's true that we have the gift with everyone on this site of making sure we are living life to the fullest of our capabilities. I do still have fatigue and memory issues. But in a way I've learned to accept it (usually with humor, but not always) and work around it. I am fortunate to have a very caring husband that is on the lookout for me too. He writes all of my appointments on HIS calendar for example. And he gives me "permission" to rest when I need it and would otherwise feel guilty or inadequate.

Several things have been a real gift to me as a result of my SAH. One of these is Karen and this site for sure. Another is that I joined an art club with giggly ladies and am enjoying doing art FOR FUN. Since I illustrate for a living I just never did any art activities in my spare time. But what a difference when there's no due date or price tag. It's been wonderful.

I am more open to people in general than I used to be. And I try a little harder to make room in my week for friends. I never had kids, and I find I am regretting that more than ever since my SAH though, and that's hard.

It was also a pleasant surprise to meet all of the people in the health professions that TRULY want to do what they are doing more than anything else. I can't even imagine doing what they do. But boy am I glad that they do!!! I found the nurses especially to be extraordinary and sooooo caring. That's really good to know.

xo,

A

[Guest Ember]

Thanks everyone, for the replies and your own stories. I feel so lucky to be in a subtype with such minor issues relating to the brain, and also oddly alone in the world. It's nice to hear from you, Karen, and also from you two who are in the same subtype.

I am now into my second week of being home-bound and going stir crazy! 8O I am not used to being cooped up in the house for so long. Last week I was in lots of pain just from re-adjusting my body to be up and around a bit, and having headaches. In the last few days my headaches have gone, I'm up at 7 or 8 in the morning and going to bed around 11pm without a need to nap, and my back and legs have recovered from bedrest. I feel amazingly blessed, a little wary that things can be touch and go with headaches and tiredness and all and they might return, and pretty bored in the house. I've read four books and my brain might be more damaged from all the TV I'm watching than from the actual bleed in my head. I see my neurosurgeon on the 31st and hopefully she will give me permission to drive and start resuming my normal life. I'm lucky in that I work from home and can make my own hours, so I plan to start slow and take it really easy. My spiritual community is holding a weekend event this weekend and I'm going to a few of the events for that--not driving of course, and making sure I can come home any time if I need to.

I have a great respect for this condition and what it has done and could do to my brain and my life. I'm just struggling with balancing that respect with being cooped up in the house. I've had diabetes since childhood and I'm used to being constantly tuned in to my body and what it's telling me. I'm also struggling with this post as it seems to be one big long complaint! 8O That is so not like me. I will cultivate patience and find something really entertaining to do tomorrow. Perhaps I will experiment with baking, that should be entertaining!

Thanks all, for listening. Bright blessings on you all!

Love.

Ember

[Karen]

Hi Ember,

Great to hear that you're making such a good recovery! It can be pretty boring if you're house bound, but even so, don't overdo things....take life at a gentle pace. I still have days when I'm feeling fatigued and overdose on daytime TV...I don't often need to nap, but my body has a tendency to come to a grinding halt and I need to re-charge the batteries for a bit!

Good luck with seeing the Neurosurgeon on the 31st .... it's great when they tell you that you can drive again.....you start to feel a bit more human and feel as though you've regained a little control back over your life.

It must be hard coping with the diabetes as well as the SAH. My brother was 18 when he became an insulin dependent diabetic.....I know that he's had plenty of health problems due to the diabetes.

Well, you sound as though you're doing wonderfully well!! At least when the boredom starts to set in, you know that you're beginning to feel better!

At least you have the weekend to look forward to and that will hopefully keep your spirits up.

Good luck with the baking

Catch you later,

Love K x

[Annie]

Good morning, Ember!

Yes, it certainly does sound like you are doing very well for only being 2 weeks along. I was flat on my back for 7 weeks. The morning Jack got up and found me polishing my nails was a big day! haha That was the beginning of my not being an invalid. Do be aware though, that while you will be up and about, you might experience even more fatigue than you have yet. Sounds like you are handling everything very very well.

AND.... Don't apologize for expressing down times!!!! That is a big part of what we are about here. On this site we all have permission to express exactly how bad we feel. And then we want to hear from you when you're feeling good too of course. But only in your own time. Heck, just look at my posts. I'm a huge sad sack most of the time.

You should go to the Green Room and tell us about your spiritual group. I'm curious! Also... what is your profession? I am also a work at homer.

xo,

Annie

[andyp]

Hello-I am also part of your 15%..I had an SAH 2 years ago..what is your spiritual group then and where in the world are you??

Andy P

[Guest Ember]

Thanks Karen, Andy, and Annie for your posts. It is really nice to touch base with people who have been there.

I work with insulin pumps. When doctors prescribe them, or people with diabetes buy them, I teach them how they work and help them transition off of injections. I've worn a pump for 16 years. I work with Medtronic pumps, which is the pump I've worn all that time. When I was in the hospital, my diabetes doctor wrote an order that as long as I was "talking straight and not acting odd" I was allowed to manage my own diabetes. So the nurses basically let me do it all and I just kept track for them so they could chart it.

My own personal spiritual path is nature based. The community I work with holds weekend "retreats" three times a year and they focus around an all-night event where we gather around a fire from midnight until dawn. There are drums, songs, prayers, movement, sharing food and water, time and space to work through personal transformations and letting go of things that don't serve us anymore. I have lots to give to the fire this year, lots of gratitude, lots of things I am letting go of. My fiancee and I were to be married in Egypt this year--in fact it might have been tomorrow if not for my bleed. We were supposed to leave on October 13th and I was released from the hospital on October 14th. Of course, my neurosurgeon said absolutely no air travel for some time so we knew by the second day that we wouldn't be going. I'm pretty sure that some of that work of letting go will be done around the fire this year. We are making new plans of course.

I had a good day today, I went with a friend to rent some movies and pick up a couple of things at the grocery store. I did get very tired afterwards and rested on the sofa for a bit but then came right back to life again after about half an hour. It gave me a measure of my endurance which will help me plan for the weekend.

I'm happy to answer more questions about my spiritual path either here or in private message. It has helped me stay positive and focused, and helped me stay "in the moment" while in the hospital, instead of wishing I was home or being overwhelmed. The outpouring of love and prayers from community played a very large part in my recovery so far.

Thanks again for the interest and the posts!

Love.

Ember

(From Las Vegas, Nevada in the US.)

[Karen]

Hi Ember,

Really interesting to hear about your work...think that my brother now uses a pump......know that he gets quite a few problems caused by the diabetes, especially with his feet.

The description of your "spiritual path" was interesting to read...Do you think that you will be able to keep your eyes open all night! Well, I hope that it helps you out.....just make sure that you have a good nap beforehand! Hope that you will let us know how you get on.

Good luck with the new wedding plans!

Lots of love Karen x

[Annie]

Very interesting, Ember! My own spiritual path is a bit of everything. Raised Methodist, married a Catholic, I feel a very strong bond with the earth and animals and lean on that a lot. Tried the Unitarian church for a while. Do some reading on Buddhist philosophy. and there's NO WAY I could ever stay up all night!!!!! hahahaha

[Guest Ember]

Oh, I won't be up all night! We make little nests just outside the circle where people are moving and rest off and on even we're not recovering from something like this! I'll have a nice cozy place to fall asleep to the sounds of drumming and the voices of friends and family. I'll be napping during the day too, to prepare just to stay up till midnight or so.

UUs and Buddhists often cross pollinate with my own path. And as far as the fire circles go...we've had everyone from agnostics to Catholic priests and devout Jewish folk with us. "All are welcome" is a common saying among us.

I'm going to make cookies today! Hooray!

Love!

Ember

[Annie]

How nice. I wish I could be in your group.