Colleen

Welcome Claudette,

I have to say that sometimes when I read what someone had to go through before getting a proper diagnosis, I am truly amazed they are still with us, much less writing intelligent messages. Human resilience is so unbelievable! The will to survive and prevail is a strong biological drive. When I came to after my SAH, after determining I had missed a day, I was concerned about when our dogs had last been fed. My poor husband had to drive an hour home in the middle of the night to calm me down. They pretty much decided then that I would survive.

That said, unfortunately the psychological effects take much longer to conquer. I am going on seven years. I haven't slept enough this week and my head has weird sensations that I know are are innocuous, but they trigger nerves that I should be past by now. (So my rational mind says). I'm not trying to discourage you Claudette, because you definitely will feel better and progress with time. But what you are feeling now is so normal for what you have lived through.

I was told that four percent of people who have an SAH survive with minimal deficits. Just hearing the odds is enough to keep you scared from leaving the doorstep, but hang in there and bring any question, any concern , any time to this site. I guarantee you that someone here has lived it and can help you through the hurdle.
Colleen

Hey Daffodil,

Just wanted to chime in with a big "I hear that!".  I didn't need a shunt or have the same degree of problems you and some others have, but do know what it's like to not be yourself, or at least the self you were used to knowing.  It really is kind of interesting that the med teams that are so great at saving lives don't give a little more direction or insight for changes to expect in your future life.  Guess they are just too busy, kind of like the world these days - on to the next one.

Sometimes it's such a comfort to just get a little validation and that is what BTG is so wonderful for doing.  Daff, I truly hope your weather has brightened and that your spirits have lifted.  After everything you have endured, you deserve to feel good about yourself and the things you CAN do.

Take care, sweetie.

I live 1700 miles away from my family so the only sane way to visit is to fly. The first trips I took after the SAH were nerve wracking, plus I worried about being away from my brilliant health care team if something happened. It has become much better with time and repeated trips, but there's still that little bit of trepidation. I think carrying the medical info is a good idea. I do carry a letter that says the clips in my brain are titanium (can still do MRI).

Welcome Johnboy, to you and you wife,

According to my neurologist ( in USA) SAH causes brain cells to die and even those of us who come through with very good outcomes have some sort of permanent damage. The particular deficits depend upon where the bleed occurred ( that is, what functions are governed by that part of the brain). I'm not familiar with medical systems in other countries, but perhaps your wife's neuro can help support your case.

Good luck.

Colleen

Hello Geoff,

You are fortunate to have found this site so soon and to realize you have been experience common affects from the SAH experience.  I'm just going to chime in and repeat what others have said, which is don't rush things.  If you are going to work, that alone will use up alot of your stamina for now.  It takes a good while to truly get back to feeling as normal as you are going to feel.

I am not a doctor, but from experience I'm guessing your head is telling you that you are overdoing it.  Eat healthy, get lots of rest and sleep, maybe try vitamins, and listen to your body.  It takes awhile for the blood to break down and be reabsorbed; in the meantime, your brain doesn't like it and is trying to tell you that.

Following my SAH (and associated clipping surgery), I was off work for about three months.  Nobody even discussed phased return - basically I was told the aneurysms were fixed, go live your life. 

So, I went back full time, with a full time commute to go with it.  No one ever said anything about not driving; guess it is different here in USA.  Anyway, it definitely was a struggle. 

Within three months, I was so exhausted I tripped over a metal hammock stand on the deck, broke a bone in my foot, and had to take a little more time off! 

My job involved processing applications and renewals for structures on State waterways; I never was caught up with my work again, no matter how hard I tried, or how many hours I worked. 

One year ago today I changed jobs and haven't looked back except to say "Thank God". I know jobs can be hard to come by and I was incredibly fortunate to have the opportunity to switch to something I truly love, but sometimes I think you just have to make up your mind that the switch is needed.

And wow, Ponigirl, you were treated that way by HSUS??  That brings my future ability to be a supporter into question.....

Oh, and I have been told, Iola, that HR is there to protect the company, not the employee.  Crazy world.

Congratulations Lorraine. Be very proud of your achievement. Best wishes for an exciting and successful next step!

Colleen

I'm not sure how things are done across the sea, but when I was still seeing my neuro radiologist and surgeon it was common for them to double up the appointments. They generally had clinic appointments one day a week and since everything went straight to computer files they would review results with me right away. Maybe it's better to not have to wait and stew about what the results might be??

My Doctors definitely said do not smoke again ( and I haven't, despite all those years of the nasty addiction). I think they told me not to drink at first and I didn't for several months. However, I do enjoy a couple drinks here and there and my neurologist is aware of it, but it is going on 7 years since SAH. I definitely have to know the limit as well, as it doesn't take much for a headache or fogginess the next day.

A glass of wine is relaxing for me but I suggest you ask your dr to explain his orders before you just decide it's ok. For sure you want to give your brain plenty of healing time. In early days I drank a lot of herbal teas to help relax.

Hey Brandi, welcome to the site. I am in Texas. Funny, I waited a long time before I posted on the site, although I visited frequently. There is a great group of folks here, always ready to help with advice or support or just to laugh at ourselves. The SAH wasn't fun, but it does make you look at life differently. Enjoy those beautiful children!

Welcome Bill,

My SAH occurred directly after I stepped out of the shower. There must be something in the water! Mine has been nearly seven years ago now, but my husband (who WAS in the shower when it happened) saved me with his quick reactions and constant attentiveness. He rarely left the hospital, and then would only go when a family member was present to watch for the dreaded vasospasms (which I never had, thankfully). At the beginning, he got all our closest friends gathered in the waiting room of the ICU and they prayed for me non-stop; the power of prayer truly is a phenomenal thing and the whole experience turned me much more spiritual.

I have been blessed to have what is considered minimal effects from the bleed and surgery, but I still have experienced the whole merry-go-round of emotions, from extreme gratitude to anger over the fact that I didn't just go ahead and die. I had always been a fairly bright and quick person, so the memory lapses and word searching and general feeling of having ADD has been difficult to assimilate. It still frustrates me...but then I think of the "could have beens" and get over my pity parties. And, it has gotten better with time, adjustment, and the help of a good neurologist. Just recently I told him I am feeling better than I have in years.

I can also relate to your lovely wife; I too have had the cervical spine fusion, C-3 through C-7. Makes figuring out the sensations quite interesting: Hmm, is that numbness in my face from the craniotomy or the neck surgery? or Where is the head-ache coming from? Hope it's a neck thing.......I had the fusion like 3 or 4 years ago, but some days the heating pad is still my very best friend.

So, the next time you're in the grocery store and all the colorful items on the shelves becoming totally overwhelming and you just want to leave the cart and run, just remember you are not alone in this. Believe me, you can come to this site and look for support or information about anything related to that SAH and someone here will have experienced the same thing. I came to the site for years before I finally posted and it truly has kept me grounded and sane. BTG is one of the real blessings to have come out of the SAH.

Colleen

Hey Paul,

I am outside of Houston and was blessed to be Life-flighted there when I had the SAH. There were lots of angels that day and my husband was counseled to send me to one of the best neuro teams ever, imo. So the Drs I have had are associated with the Mischer Institute and Memorial Hermann. I still go for a yearly CT scan that my neurosurgeon reviews, but I haven't actually seen him for a couple years. I now see a medical neurologist every six months; he helps keep me sane LOL (anti anxiety meds).

So you are only like 5-6 months past the bleed. I am going on 7 years. My neurosurgeon is highly gifted and extremely compassionate, but has been known to quote the stats ( like only 4 percent of people who have a ruptured aneurysm come thru this well) and then say "now go live your life", because for him once the aneurysm is fixed, it's fixed! (BTW this surgeon also placed the shunt for my ex co worker and treated Gabby Gifford when she came to Houston). However, once I really made it clear that I had lingering issues, he did send me to the other dr who explained that we don't get off free, even if we can still walk and chew gum at the same time.

It takes a lot of time to get past this assault. Two weeks ago I told my neurologist I had been feeling better than I had in years. This week I am extremely fatigued, my memory is horrible and I am barely functioning. Thank God Blue Bell is back! Seriously you will get better, but there will be ups and downs. For me though, if a dr doesn't have compassion or even attempt to help you cope with these changes, it is time for another dr. But I have been spoiled by the best........

Such great news!! Best wishes for a speedy recover.

Hello CW

I have been reading your posts since you came to this site and truly hope you are finding some solace and encouragement from the responses of these folks. Collectively, we have experienced the full range of emotions. While I do not have a shunt and cannot know what that feels like, I can tell you the SAH alone commonly invokes a terror of death every time something feels a bit weird.

I was told by my interventional radiologist at the time that PTSD was not uncommon. I have also learned that the part of your brain that was affected by the bleed can also cause heightened fear response. I don't know where you are in Texas, but I can tell you there is excellent neuro care available in this state.

I did have a co-worker who had a shunt implanted by a neurosurgeon here and it did take some time for the adjustment. She has gone on to have two babies. Prior to the shunt, she was passing out from the fluid imbalance and would not have much of a life without the correction.

I sincerely pray that you can find the help you need to come to terms with the changes the SAH has wrought. It does take time. Eventually you will be able to move about more confidently. In the meantime, we are here.

Hey Kris,

Congrats on the 4 years of progress and the great attitude to go with it. Like Macca, I can't say I'd want to relive my SAH, but it has given me a new appreciation for many things and brought about some positive

changes. It is also a marvel to realize how finely tuned the brain is; how the ability to perform certain functions can be shuffled from one area to another in response to the assault. Simply amazing.

By the way, for those interested, the American actress Sharon Stone discusses the impacts of her SAH (she had it 2001) and the lengthy process of regaining function in this month's Harper's Bazaar. It is an uplifting interview.

Following my SAH, my interventional radiologist told me that post-traumatic stress anxiety is not uncommon and suggested I give it some time. I talked to myself alot and my lab Annie became my surrogate nursemaid. With time the anxiety lessened, but was still present. I finally saw a neurologist who explained that the part of my brain that was impacted contols fear, which would explain heightened anxiety.

I now take a medication that helps. Bottom line: if the anxiety is affecting your quality of life, see a medical professional. And don't be stubborn like I was and try to tough it out for 5 years!

I had a craniotomy in 2009. The incision went from my right temple, along the hairline, to the bottom of my ear. As I remember, portions of the skull at the temple were plated back together while bones down near my ear basically were bonded with some sort of cement. Directly after the surgery, the incision looked horrendous, like Frankenstein; but, it healed and isn't even noticeable. My scalp had weird, itchy sensations for some time as the nerves re-established. Over time, the area of skull that was plated has sunken a bit, so I am a little dented at the temple. Overall, the craniotomy was much easier to recover from than the SAH was an it sure beats worry about whether or not that second aneurysm would burst.

Hello Laura,

How great that you are your Dad's eyes and ears at this challenging time!  As has been stated, none of us can hand out medical advice, but only share our own experiences.  I think if you read a number of the past posts, you'll find experiences vary with the type of bleed, location of bleed, extent of complications, etc.

But one of the things I have seen time and again is the lament over loss of ability to remember.  For me, it is more the recent things; I can remember any number of ridiculous incidents or facts from pre-SAH but struggle at times to remember what I did at work last week.  It has improved with time and the difficulty is definitely more pronounced when I am tired.

I do remember having the lumbar puncture when I was in the hospital following the SAH, to help pull blood off my brain and relieve the head-ache.  It was explained that the blood has nowhere to go, just has to break down like you will see with a bruise, and the brain does not like the irritation that causes.  It takes a goodly amount of time for all the blood to break down, so head-aches can last for awhile.  I could not read at all during that period.

I did not have the confabulation problem, but one night, following an angiogram, I repeatedly asked my husband and sister why I was in the hospital.  Mind, I had been there over a week and was clearly aware of all that had occurred up to that time.  Neurologists explained the phenomenon was not uncommon and thankfully it passed.

It's been over 6 years since my SAH but I love this site because I can come on, read others' concerns and challenges and think, yeah, I'm not crazy.  I also have an excellent neurologist helping me deal with some of the lingering after-effects.  As long as your Dad is in the hospital, he likely is surrounded by doctors every day, but when he gets out he may want to continue to consult with a neurologist.  As mine has explained to me, SAH causes a part of the brain to die and even those of us who seem quite intact afterwards are not getting off free.

There may be anxiety, sadness, weird sensations, extreme fatigue, frustration, difficulty focusing and learning.  I have felt like I developed a case of attention deficit disorder.  Best to keep reminding yourselves how blessed you are that Dad is one of the very lucky ones of us, still breathing and walking and talking.  Just encourage him to rest, eat well, and take things slowly.

Best wishes and God bless, Colleen

Two months after having the SAH, which was coiled, I had surgery to clip a second aneurysm that was discovered during all the scans for the bleed.  I then went back to work full time one month after the surgery - with an hour and a half commute each way.  It was as though I was obsessed about losing the job or something.  As Iola said, people don't see the damage on the inside of your head.

I was quickly exhausted and had frequent anxiety attacks.  I was never able to do that job the same way as I had previously; I just didn't have the attention span and stamina.  It took me a very long time to work up my confidence to try for something else that I am better suited for, but even now - 6 1/2 years post SAH - I still have days where I'm struggling with the fatigue. I find I cannot work and keep house like I used to and while I enjoy extra social activities, it can be difficult to work it all in. 

Just take care of yourself and don't push too hard if you don't have to. And don't get down on yourself if you find you are not the "machine" that you were before the SAH.  It takes a long time to rest and recover and work ourselves back to whatever our full potential is going to be.

Best wishes and God bless, Colleen

So, well said, Daffodil that I may print and frame this for daily reading.

And Teechur - I don't get a headache every day and the "deficits" I experience are relatively small considering what could have been.  Even so, I have had days when I thought "maybe it would have been better if ......".  Sometimes we just have to work a little harder to find the joy.  I truly hope your pain management therapist helps you.  You just sound like you have so much to give and God has a purpose in keeping you around awhile longer.

Welcome, Michelle.  I had my SAH in 2008, just before turning 51.  Like you, I had one aneurysm that burst and was coiled and that led to finding the other one, which was clipped.  My neuro team was excellent and explained many things to me.  First and foremost, your brain does not like being bathed in blood.  It finds that treatment very irritating and rebels against it.  The blood has no where to go and takes a long time to break down completely.  I had headaches for some months, but was blessed that they did go away and I have not had dizziness.

I had lots of anxiety that continued until I finally sought help from a neurologist last year.  He explained to me that even those of us who come away from the SAH appearing to be fully functional have not escaped unchanged.  Part of the brain died.  Miraculously, the functions performed in that area get picked up by other areas, but since these are not the preferred pathways, they may not be performed as fast or as well as before.  My short term memory suffered.  I have embarrassing moments of not being able to find the simplest word.  I can't type as well as I did before.

Sometimes I just feel like there is a heavy curtain between me and the stored information I am trying to get to.  I fatigue more readily and don't accomplish nearly as much as I used to.  Some days this all really bothers me.  I've had scans every year since the SAH and craniotomy and am assured each time that everything is great, but whenever I get those weird sensations, I have to talk to myself to keep from being overwhelmed with anxiety.

So, I just wanted to let you know - like others here have done - that you are not alone in the things you are experiencing.  It does get better, but it does take time.  And like my neurologist told me, you have to cut yourself some slack because your brain is injured.  Reading the BTG posts helps immensely because it keeps reminding you that you are not the only one and others do understand and support you.  Hang in there and give yourself the time you need.

Hi Janey,

I was sorry to hear your procedure became more complicated than anticipated and about the stroke.  However, I am so glad your speech has returned and will pray for recovery from the vertigo.  I can't say I have suffered that myself, but have known sea-sickness and if they are at all alike, it is totally miserable.

Rest up and feel better soon.

Colleen

Prayers and positive thoughts winging your way!