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New Member Sue - Hello from beautiful BC!


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I was swatted with the cosmic 2X4 on the morning of January 5th, 2012. Just finishing up a cup of tea in bed and went to take my cup out to the kitchen when I felt a pain in my neck like I'd slept funny. This quickly carried on to become a headache, but not a terrible one. The tingling strange sensation that "flushed" up my neck and head, affecting my hearing, was a bit was of a concern. I asked my husband to get me to the hospital; then when I felt disoriented and started violently sweating plus vomiting, asked him to call the ambulance. The 35 minute ride to the hospital resulted in another violent vomiting session. Upon arrival at the ER, I was taken in for a CT scan which confirmed a large bleed and the suspect was a vein, as they couldn't detect any artery involvement. The event that may have triggered this bleed was a ski accident two weeks prior, but the doctors won't say that was the cause.

Our hospital does not have a neurology section, so I awaited transportation to Victoria (1.5 hours away) by ambulance for two days until a bed could be found. In that time, I was put on immodipine (antispasmodic for brain), morphine, anti nausea meds and was continuously monitored for any neurological involvement plus the never ending BP checks. I had another CT scan 24 hours after the first, which showed stabilization - no changes. Luckily no neurological impairment.

In Victoria, I had a low stimulation room for one week and endured a four vessel angiogram to rule out any hidden aneurysm. This caused terrible visual hallucinations for two days and I had to remain flat and quiet following the test. No treatment other than to continue on the meds and I was released back up to my local hospital. So a total of three weeks in the hospital. One final CT scan prior to discharge. This showed the blood has dissipated. I was examined by the local neurologist and released to go home. I am 5 weeks past the SAH and am recovering at home quite nicely.

The area of my brain affected was the right parietal lobe, so I have sensory issues to resolve, but have had a significant improvement since coming home. My eyesight is a bit weak and my perception is a bit off. I have a slight numbness and tingling in my hands, some hot and cold sensitivies, some fatigue and the occasional horrid headache (three in 16 days), which Tylenol doesn't seem to help at all. My shoulders, neck and upper back areas are tender. I have a bit of a white noise in my right ear and some tiny clicking noises. That's about it. I am up to walking unassisted for 35 minutes a day, but mostly I go at night because of my sensitivity to visual stimulation.

I am at zero risk as far as I was active in sports, no blood pressure issues, no heart or circulatory problems, no diabetes, not overweight, so the episode is random and just happen to occur within two weeks of my breast cancer surgery (I was at very low risk of breast cancer too, but got it anyways). So, my challenge is getting my strength back in order to endure my next cancer treatment. My appointment for the consultation at the cancer clinic is on February 29th. I have asked that my neurologist be on board for consult as to type of treatment to make sure it's safe for a recovering stroke patient.

It's funny why some people must endure more than their fair share of life's challenges. Nearly dying from a stroke certainly puts the cancer in prospective. I realize I have one good shot at recovering from the brain assault, but may have several kicks at cancer's butt! I'm pretty resilient, and was reluctant to come on board to this website, but I figure it can't hurt and perhaps I will be inspiration to others that have more than one challenge to get through.

Anyhow, that's my story and I welcome any comments or support, questions, etc. Thanks for reading.

Edited by Guest
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Hello neighbor and welcome to BTG! : )

I'm in Shawnigan Lake and spent my days in hospital on the neuro ward at VGH too. I wasn't there as long though, only 3 or 4 days. My non-aneurysmal bleed was on Nov 10, 2010.

This site has been a lifeline for me. My GP had never seen a case like mine and the after-care from the neuro types was non existent. As soon as they figured out I didn't need surgery they were done with me.

The members here are warm and caring. Don't be afraid to ask anything. Someone here has been there before!

I also had no risk for a brain bleed. It was like being struck by lightening.

Sandi K. Xoxoxoxoxoox

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Welcome to BTG. I am from BC too. No aneurism for me just a Blood eeee Headache. well thats what my doc called it. This group has been a god send. I reall feel like I fell through the cracks between the medical system and work. I am so glad I found the site and that I can validate what I am going through. Some great friends here, I am sure you will feel at home.

PS I didnt remember that the word discribing blood was foul language. It isnt really used too much in North America

Edited by Carl
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I found that the specialist at Victoria GH just tossed me out when I didn't have anything needing serious treatment. Not much explanation as to what to expect. It was a scary time for my family and me. I likely stayed longer in both hospitals due to such little information about the condition and very little support that would help me transition to recover at home. I found this website by chance when I was looking up something. Glad I found it and some new friends!!

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Hi Again! I don't know where your original post went but I can't see it now. I hope it comes back.

Yes, I felt the same after coming home. I very much thought I would be going to work on Monday after being discharged on Saturday. That's how little info they gave me. They did tell me not to drive for a month and no baths. I thought I could just get a ride to work. The first 2 days I hospital I kept my suit pants on... Thinking I'd be getting up and going back to work. Yup.

I saw my GP the tuesday after discharge and she was given no warning or information. She was taken by surprise when I explained what little I knew. I was in tears, couldn't believe how alone my husband and I felt. I assumed because no one made a big deal out of it then I must be fine. I planned to go back to work on the next Monday. My GP asked me to wait a week or 2.

I had weird sensory stuff going on with my hearing. It was acutely sensitive. Lots of pain in my lower back with the reabsorption of blood. I called the neurosurgeon but he wouldn't take my call or questions over the phone.

I had a follow up CT scan 4 weeks after the bleed and the intial CT and angiogram. 10 days later the neurosurgeon saw me and told I was fine and could return to work in a couple of weeks. Why didn't he tell me what to expect when I first discharged?

I did return to work about 2 weeks later and lasted a few weeks before being sent home with lots of symptoms. My brain needed time to heal. 4 months after my bleed I saw a neurologist after insisting on it with my GP. The neurologist said everything I was experiencing was normal. Some people heal quickly, some are left with devastating side effects, and I'm healing but it's very slow and I look and sound fine to everyone. All of it is normal. Why didn't they prepare me?

I pushed for neuro cognitive testing and I have some minor deficits but I'm still healing and I'm learning coping strategies from an OT. No one in neurology said any of this might happen.

It's very frustrating, extremely aggravating, and beyond belief but unfortunately it seems to be common aftercare practise. There just isn't a lot of support. Thankfully some of us find BTG. I've had so much support here.

Sandi K.

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My goodness, it's very nice to see you here (she chuckles) in order that you keep SandiK and Carl in line! Sorry that you had to find us though but you're in good hands.

Sorry to hear that you're facing a bit of a journey with cancer treatment...we need to ensure your energies are kept as good by eating the right foods, resting lots, lots of friends supporting, and nice gentle walks around outside.

I'm sure you have plenty of good caring friends who'll be on standby to help out with everything. I think friendships are so important at this particular time so make sure you keep them all on board.

I work with patients in cancer care (and I also had an extensive NASAH) so I will pm you my thoughts. It's lovely you stumbled on this site. I had the greatest fortune to visit your part of the world (last year) to visit SandiK so I'm a big fan of Vancouver!!

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Wow, I sure was down last night! Anya is right, you need to drink lots of water. I was forgetting that only yesterday and my head was very 'tight' by late afternoon. I guzzled back a half litre of water and minutes later felt my brain relax. Eating lots of good healthy food is necessary to keep your strength up too. My sister told me to have 5 colors on my plate. I'm not sure that I always do but we eat lots of veg now so we have lots of colors. These are early days so rest a lot. Your brain just wants rest now.

I'm 15 months along and feeling a lot better. Some days I feel 'normal'! I hope you feel well today.

Sandi K. Xoxox

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Hi Sue and a warm welcome to BTG. You have certainly got more than your fair share to deal with at the moment.

I'm glad you decided to post your story - as you will have already discovered, there is so much caring support around on this site.

I found it pretty hard this time last year when my Mum had breast cancer. I thought is so unfair as she'd not only lost her dad to a sah and could have lost her daughter (me) to one too - and then this, but you are having to cope with both of these, so I wish you strength to deal with all this and wish you all the best for the months ahead. It's very recent that you had your bleed, but your residual symptoms should hopefully, with all the good advice already given here, improve over time.

By the way, my Mum beat the breast cancer and celebrated her 82nd birthday last month:-D.

Take care,

Sarah

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I'm so happy the original post came back. I did actually write my introductory story a couple of weeks ago (on the ipad). It took me about 45 minutes to get the post the way I wanted, then went to submit and it disappeared. I could not get it back and thought to myself - it's not meant to be that I should participate in this forum. I'm glad I tried again. The post this time is shorter and won't likely put any members in danger of napping while reading it!!

Anyhow.... today is a good day. If I awake with no nasty headache, then I can say I feel almost normal. If it weren't for the eyesight problem, I would be at 90% - the 10% deficiency would be due to fatigue. Here's the deal on the eyesight. I have "lasered" vision - one eye is for distance and one for reading, so I've worked with monovision for the past 12 years. My brain has always adjusted for how my eyes work. The difference now is that the brain is not making the adjustment and both eyes are trying to see up close and far off, so it's like I've lost my glasses and I have eye strain. The opthomologist that I've seen reports that my eyes are healthy and believes the brain will eventually make the adjustment again. He thinks it's still early in my recovery. Worst case scenario, I can get a contact lens for the struggling eye (and a pair of reading glasses:shock:).

I can certainly live with the small defects I have today, after all, I have my life given back to me, but I think from what I've read, there is still much healing that will take place in the next few months. I look forward to that.

So to everyone - make it a "good day".

Sue

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Hi Sue

Welcome to the site and hope that you find as much help and friendship as I always have. Recovering from a SAH is very individual we all progress at different rates but with your next lot of cancer treatment soon as well you will need as much rest and support as possible. Wishing you well with the treatment and please let us know how you are getting on.

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Welcome Sue, You sure have a plate full. Sometimes you just wonder why? Or why so much at the same time? I have a friend who nevers catchers a break and I told God to give me some of her bad luck & I think he did.

I had a lot of vision issues and ended seeing a neuro opth and have some vison loss. Worse in right eye but it has been 5 months yesterday for me and I have adjusted well to that annoying shadow I would see. Lights are better now as well. I hate noise. I must rest and drink my water and relax, not feel guilty for it and know it is what will heal me. I found this site when I googled "SAH recovery headaches how long do they last???" I found out I have a brain tumor during my 3 month follow up. If it is the kind my neurosugeon thinks it is it grows from radiaition! What a hoot! My head has been scan at least 10 times in 5 months! Tuesday I am schedule for another MRI with and with & without contrast and to see if the tumor has changed. Sometimes it is all a big Catch 22. But you just got to roll with the punches.

Good luck, stay in touch with your recovery.

MaryB

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Maybe I am just lucky, but I seem to feel almost back to my normal self and it's only been six weeks since my hemorrhage For the large bleed I had, it seems that I have very few sensory issues to resolve. Reading some of the stories in this forum makes me feel that maybe I'm the exception, not the rule. Perhaps it's my extremely positive frame of mind having dealt with the cancer so far. The physiotherapist is working on all of my issues as I am recovering from three incidents; two breast cancer surgeries, one ski accident and the brain hemorrhage. I was told right from the start when going through cancer diagnosis that keeping an extremely positive frame of mind goes a long way to recovery. I believe this to be true.

Anyhow,I hope everyone is having a very positive day. I thank you all for your kind welcome greetings and I'm happy to meet new friends.

Take care.

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Hi Sue

Welcome to BTG!

It sounds like you are here to offer lots of positive vibes for everyone! You have certainly been dealt some rough deals but appear to be sailing through them with a positive outlook and hopefully that will radiate out to all those who need a lift in their recovery too :)

Take care

Kel x

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A gal on the breast cancer forum once told me a saying and it goes something like this: when the wind unexpectedly changes direction, we adjust our sails...

I'm adjusting those sails and moving along. There may be some rough waters ahead but I believe I will sail through safely and with confidence.

That's my little contribution for the day. Trust you're all sailing smoothly along today!

Sue

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Good to hear that you've set sail on an even keel.

Today, I have needed to change direction to "goosewing" where the wind is behind and gently pushing me forward. I have monster fatigue issues today, after overdoing the exercise yesterday running to keep up with a horse! Haha Seriously though, I do love your analogy/visualisation and it's one that will stick in my mind, so many thanks for that!

Hope you're in for a spell of calm gentle waters this week.

Edited by bogbrush
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  • 1 month later...

Hi y'all.... No I didn't drop off the face of the planet, just busy with my various doctors appointments and getting the yard and house in order prior to leaving on Tuesday for my cancer treatment. I have made an excellent recovery and am fortunate not to have after affects of the SAH to deal with along with the cancer treatment. That just wouldn't be right.

The only telltale sign I have is slight stamina loss, but likely that would be the case even without the SAH as I had been undergoing multiple diagnostics and surgeries for two primary cancers in the past nine months.

This week I have been back to a little more challenging mountain bike riding. I'll try to post some of the lovely photos I took while out on the river trails. Today I went out for two hours and did feel a little winded coming up the last long grind of about a half km uphill. Muscles and muscle memory all fine, balance and vision back on track, just that darned panting noise coming out of my mouth. It's embarrassing, if you knew me before. I'm not in teachers category of fitness, but still, nothing to be ashamed of.

So, my friends, wish me luck staring Tuesday. 36 rad sessions coming up and I hope my gas tank will still allow me to keep some sort of fitness regime. I will take my trusty iPad with me and keep you posted.

Hope everyone is having a nice enjoyable Easter weekend. I'm volunteering at timekeeping/score keeping at my husband's hockey tournament. That was another test for me - to see if I could multitask with scorekeeping and playing music for the games. I did, but I was at it for five hours. Now a little pooped out.

Just passed the three month mark yesterday. The time has been sucked into black hole. I can't even really believe it happened.

Happy hunting and may all your eggs be Cadburys - my favorite!

Sue

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So happy to see you, neighbor! Thoughts and prayers and everything crossed for you on Tuesday with your first rad treatment! :)

I'm hoping to have nice weather coupled with no headache this weekend and try going on a hike. I got Nordic Walking poles (still have some slight imbalance) and realized that this means I can get back into my beloved trails!

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