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Swishy

RCVS discussion

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Hi all,

Many of you know but I will give a brief history...SAH May 2017, small stopped bleeding on its own, left me with no problems...3 night in hospital a ton of tests....sent on my way with only meds looking at trying to minimize head pain..

 

RCVS 3 days after getting home, they said it was severe, I had an angiogrm that went into my groin up into the areas in my brain that were in spasm and bleeding and put verapamil into the vessels...total surprise to me, no one had mentioned this as a possibility...8 nights ICU, don't remember about 4 days, 2 weeks in rehab...left me with core weakness, couldn't sit up, balance issues and sensory issues.  I also have problems with being overwhelmed, such as with a lot of people moving around, or walking past me and terrible fatigue...

 

So I would like to know if others here whose story may be like me have had a SAH and RCVS ...did you know you were at risk?  I was just so blown away with it.  How did you recover from one or both?....I am in the US, so I am wondering if treatments differ..I was at a very prestigious hospital in Boston that has a first class neuro department..  

 

May seem odd for me to be wondering about this after 2 years but I still am...I guess I am still trying to understand it all..

Thanks

Jean

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Swishy, I had a nasah in 2012. I live in Arkansas and was sent to Little Rock for treatment. I was placed in NSICU for 12 days.

 

I had a phenomenal team caring for me. I had what they called vasospasm’s on something like the third day if I remember correctly.  However, they were expecting this.

 

I recall seeing the white board on the wall with instructions to not allow my bp to fall below 150. I was told this was to keep the vessels in my head from collapsing.

 

I remember my nurse telling me “ you may die, but it won’t be your heart that kills you!”. 

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Hi Casey,

 

Good to hear from you.  Sorry for what happened to you, must have been terrifying...

 

When all was said and done and I returned to Mass General for my first follow up with Neuro I was so blindsided. 

 

I mentioned to the doctor that I was especially fearful as I had now had 2 strokes...and he said not really (me???) he told me then about the vasospasm and that it was really all part of the same stroke...I had to go home and go on the computer and look it up...took me weeks to be able to do it.

 

If they were expecting vasospams for me no one mentioned it when they sent me home from the SAH.  My initial follow up appointment was set for a month...but as I said I was back in the ER way before that..

 

Such a complex event(s)....

 

Stay well..

Jean

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Well I am thinking that perhaps the number of people that have had vasospasm on this site are few.  I was hoping to read others experiences that were more like my own...

I don't think I will ever stop trying to learn more about what exactly happened...I wish I could just let it go...not think about it.  

Jean

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Hi Subs,

Thanks for reminding me to look back over that link... I think I am getting a bit wacky thinking too much about it haha...truth...

Jean

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Hi Jean,

 

my my story goes the other way round, I had 4 Thunderclap headaches, two A&E visits and one overnight stay.

As the CT scan & a lumbar puncture came back clear I was discharged with a diagnosis of thunderclap headaches probably caused by RCVS, but I was also given a MRI scan (with dye) a few weeks after the headaches where to everyone's surprise it showed I'd had a SAH.

 

i guess I'll never know actually which came first now... 

 

I did spend a lot of time looking into RVCS and in the few months before the incident I had ticked almost half of the possible causes, but there is also a history of SAH & high blood pressure in my family so who knows. 

 

I try to put it all down to the brain moving in mysterious ways but I really would like to know why...

 

Sarah

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The brain sure does move in mysterious ways...Great we are hear able to talk about it ....  still leaves us with why??  I am thinking I will never know...

Jean

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On 23/07/2019 at 23:59, Swishy said:

Well I am thinking that perhaps the number of people that have had vasospasm on this site are few.  I was hoping to read others experiences that were more like my own...

I don't think I will ever stop trying to learn more about what exactly happened...I wish I could just let it go...not think about it.  

Jean

 

Hi Jean- I just joined BTG- my surgery was 12/23 and I had a vasospasm during surgery and apparently multiple tiny strokes after. I'm located in Vermont and go to Dartmouth-Hitchcock in NH for treatment. I know how frustrating this all is....I've been researching left and right. I'm so sorry for the scare and the ICU stay; what a number that does on you! I'm a 40 year old mom of 4 with absolutely no risk factors and yet, it happened. The why is something that still swirls through my brain.

 

How are you coping now? Best, Liz

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Hi Liz,

Thank you for your thoughts on what I wrote....I had my vasospasm 3 days after my original SAH which was small....I had been sent home from the hospital (MASS General) after 3 nights with no mention of Vasospasm but told if I got a bad headache to return....

 

Headache was an understatement to what happened to me...I was in the shower and felt pain creeping up the back of my head (I was alone) then my hands and feet didn't feel right when I rubbed them together....I jumped out of the shower and was able to throw on a nightgown, call 911 and open my front door..

 

I don't remember anything for about 10 hours...they went into my groin (much like a cardiac cath and up into my head) they put verapamil 30 mg into 3 spots trying to stop the vasospasm which they rated as severe...

 

I don't remember much for several days but slowly I recovered...a week in ICU and 2 weeks in rehab...I have some mild cognitive problems and loss of core strength causing balance issues especially when I am tired............

 

They do not know what caused my SAH...they searched...they said cause unknown...I continue to get better or perhaps I am getting use to how I feel (swishy)....I am older than you Liz,I was 64 when this happened to me.. I am so sorry this happened to you at your age and raising children...it must be so very difficult....

 

I will tell you that even after 2 years 8 months I feel I continue to improve (so slowly, I only notice when I look back)...I have done some therapy working on breathing to try and keep moving when I really want to stop  what I am doing... I work on trying not to rush (I always did) I try to be patient with myself, and I remind myself if it doesn't get done today it will get done eventually haha I use to say tomorrow....

 

Please let us know how you are doing...so many of us here....xx Jean

 

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