Jade - Hello, I am new & scared, especially of vasospasming

[Thebelleoftheball]

Hi, all. My name is Jade, & I am new to all this, so please bear with me if I'm not doing this correctly.

So, here is the background of the situation that brings me here:

Right now, my boyfriend & the love of my life (his name is Todd, & he is 45) is in the ICU at a hospital 2 1/2 hours away from me. He suffered an SAH on Sunday, April 10, in the evening, while he was in the shower. I did not know what had happened until the next day (Monday) evening, when I called him after work & he told me he felt very sick (had gotten awful headache, vomited, had neck pain, etc.), & had been sleeping on & off since it happened. I urged him to go to the urgent care center by him, & he said he was feeling better, but would call the doctor the next day (Tuesday).

 

He did, & scheduled an appointment for Wednesday. Late afternoon Wednesday, he texted me to tell me the doctor thought he had meningitis, or a brain aneurysm. I figured, surely, if it were an aneurysm, he'd have been sent to the emergency room. He told me a CT scan was planned for Thursday, but that he wasn't sure what time it would be. I received a phone call & voicemail from him Thursday morning (I was still asleep), telling me he was in quarantine in the ER for meningitis. I immediately called him, & was able to speak with him briefly.

 

Later that afternoon, a phone call from his mother informed me that he'd had an aneurysm, & was in surgery for a coiling procedure. I immediately broke down, of course. She called later Thursday evening to tell me his surgery had been successful, & that he'd woken up & was able to speak. I was overjoyed that he came through surgery successfully, & told her I would be headed to hospital to see him Friday after work.

When I arrived Friday, he seemed to be doing well, considering he was only a day removed from surgery. He was talking, smiling, able to open his eyes, move his arms & legs, & only seemed groggy/sleepy. They let me stay with him past midnight, & he seemed to be doing well when I left. Saturday was much more difficult- the occupational therapist asked him questions, & he struggled greatly with remembering the answers, & also, w/ his words in general.

 

They told us his blood pressure must be kept high, to avoid "vasospasming". When his lunch arrived, he ate every last bit of it, which delighted me to see he had an appetite. He then became very sleepy (to the point his mother & I could not wake him), although he did kiss me goodbye & say, "I love you", before I had to leave to head home.

Yesterday (Sunday, so one week after his SAH occurred), his mother told me he seemed to be doing better, but that they were still concerned about the risk of vasospasming, & were trying to adjust his fluids, salts, etc. accordingly.

I called the hospital this morning to learn from the nurses that he'd required a procedure for the vasospasms late last night, was on a ventilator, & would be having a second procedure this morning. When I asked his mother a few hours later how he seemed, she said he was very sleepy prior to the second procedure, & that they'd made him fully unconscious. She told me the doctor said they'd do the procedure (again, I'm still not exactly sure what it is they're doing) as many times as necessary to stop the vasospasms, but from what she gathered, the doctor was indicating that my boyfriend is still remaining very strong through all this.

As someone who is geographically removed from her loved one during a terrifying event, I am asking anyone to please give me any advice/information you may have about this situation, based on your experience during your/your loved one's SAH & recovery. Is it normal for me to feel more afraid than I ever have over these vasospasms?? I was so thankful & filled with joy that he survived the SAH, seemed to be cogent afterward, & seemed to be doing well after his coiling procedure, but this vasospasming has me in a panicked, sobbing frenzy.

 

I cannot stop scavenging the Internet trying to find evidence that vasospasming does not necessarily mean fatality or permanent impairment. Please, if you can, help me understand the impact of vasospasming, & share your positive outcomes with me- I'm really, really scared for my boyfriend.

Thank you all for reading this, I know it was a lot.

[kempse]

Hi Jade and a very warm welcome to behind the gray.

 

I'm so sorry to read about your situation. I can sense how worried you are about your boyfriend and it is understandable when a loved one is suddenly struck by a ruptured aneurysm which he probably didn't even know he had. 

 

Whilst vasospasms are a serious side effect of having a sah and can potentially do a lot of damage, it does not always result in a bad outcome.  I don't have any medical qualifications on the subject, but I have had a ruptured aneurysm followed by severe vasospasm. I was told at an appointment months later by the person who carried out my coiling that it was the worse case he'd ever seen and I scared him. I have also seen images of my vasospasm and even I could instantly see why he was concerned.

 

I was unaware of any of this at the time and I did not have any procedure done to deal with it, so am unable to suggest what is involved with the procedure your boyfriend has had done.  I was only given the drug nimodipine to help the narrowed blood vessels.

 

I was 46 at the time of my sah which was 7 1/2 years ago and despite the bad vasospasms I was not left with any deficits with regards to mobility, sight or speech and I don't suffer from headaches which are quite common following a sah. Despite that, recovery for me has still been a very tiring journey.  It can, and often does take a long time to recover from a sah as everyone is different and affected in different ways, but I hope my case has given you a bit of hope regarding the vasospasm which you are so concerned about.  

 

When I was in hospital, I was advised not to search the internet for any answers - I think the subject of aneurysms/sah/vasospasms/shunts etc etc is just too vast and will not necessarily relate to our particular case - perhaps you could avoid doing that and go by the guidance of those whose care your boyfriend is under.

 

Wishing you and Todd all the best,

Sarah

[Tina]

Hi Jade

 

A very warm welcome to BTG.
So very sorry to hear about Todd, a very worrying, scary time for you and his family.

 

Its great news Todd is remaining strong through all the procedures and having all the medical care he needs for his recovery.

 

I did not need the procedure either and like Sarah was given nimodipine. I was clipped.
Hope that Sarah's post above has given you hope regarding the vasospasm. I also agree with Sarah's comments regarding searching the internet....sometimes it can just cause more stress and worry for you, that you really don't need.

 

Sending lots of positive vibes your way and wishing Todd well with his on going recovery.
Keep in touch and let us know how you are doing.

Take care
Tina xx

[Winb143]

I cannot help you Jade as I was in cuckoo land when I had mine, but I wish your boyfriend all the best and keep us posted.

 

I had an SAH also.  I was given real doom and gloom outcome after getting Ventriculitis,  Sepsis etc.

I never had a vasospasm !!

 

But after finding this site and seeing how far I have come on since waking up, I thank my lucky stars xx

 

Take care and lets hope boyfriend  is well and will soon be home. xx

 

God bless and do not read too much as it scares you,  listen to people who have been there xx

 

Good luck to you both 

WinB143 xx

[Louise]

Hi Jade

 

Warm welcome to the site, so glad that you found us.

 

Only thing I can say is he's in the right place for help. 

 

Take care.

[Macca]

Hi Jade,

Welcome to BTG.

1st he's in the right place, as Louise says.

2nd Don't let your imagination run away with you - when you are on your own it's easy to let this happen - find someone to talk to and deal with reality - not what might happen, but what actually is happening.

3rd We're not doctors on here and can't give medical advice but I understand and was told when I was cold in hospital vasospasms produce symptoms similar to Reynaud's Disease in tingling fingers and toes and cold at the extremities but they are treating him for it aren't they? Ask the doctors why they are keeping up the blood pressure, and what effect is it having? I don't know for sure, and I may well be wrong but talk to the doctors. They are the ones with the know-how.

You'll drive yourself to distraction if you keep whipping yourself up into a frenzy with no-one there to keep you in check!

Good luck - the sooner you make the enquiries the sooner you'll put your mind at rest!

Macca

[Claudette]

Hi Jade

 

After I had my SAH 8 months ago, I scoured the net for any information I could find on my condition.  Rather than put my mind at rest, it frightened and confused me, and left me in that frenzy Macca talked about.  So, I abandoned the net and chose instead to speak to the neuro team attached to my hospital via their helpline or the helplines for Headway and the Brain and Spine Foundation - both found online.  That said, the best people to speak to are those at the hospital where your partner is, so speak to them.

 

I didn't have a vasospasm, so have no experience of that, but as everyone has already mentioned, Todd's in the right place for the help he needs.  It goes without saying that we're all thinking of you.  Think positive.  Stay strong.  And let us know how he's getting on.

 

xx

[Thebelleoftheball]

Thank you all so much for the warm welcome & well wishes for Todd & his recovery!!

Sarah- thank you for sharing your experience with vasospasms. Todd had his first procedure (still not sure exactly what it was) Sunday night, one Monday morning, & is having another one today (not sure what time). That's amazing that you have recovered so well, especially given the severity of the vasospasms for you, & that absolutely does give me so much hope!

Tina- yes, you & Sarah are right, I think the Internet (outside of finding this website) has been creating more scary thoughts than good ones for me.

Win- you have helped simply by sharing that even though you may not have had a great prognosis, you obviously have come away from the SAH very well, & yes- people who have experienced this are exactly who I want to listen to & hear from.

Louise- yes, I'm thankful he's in hospital care & getting proper treatment, most definitely!

Macca- I believe the reason for keeping his BP high was to try to help the blood flow through the vessels with greater intensity, in order to lessen the likelihood of constriction brought on by the swelling (which is what triggers the vasospasms). & yes, having the opportunity to ask questions has definitely helped ease my mind tremendously!

Claudette- very true, & I was able to speak to a nurse yesterday, but for some reason, I just didn't feel very reassured after speaking to her. I'm not sure if I'm able to speak to anyone directly with the neuro doctors at his hospital, but that's definitely a great suggestion about calling Headway or the Brain & Spine Foundation helplines. Are they US-based? I am based in the US, so just curious if I'd be able to call them without any sort of crazy phone bill charge, haha.

Again, thank you all very, very much for your kindness, encouragement, & the information you are all sharing with me- it is so very much appreciated!!

[Claudette]

Hi

 

No, they are based in the UK, but you should be able to access them via the internet: 

 

Headway The Brain Injury Association:

*  Web address: https://www.headway.org.uk/.  

*  Telephone: 0808 800 2244

*  Email: helpline @headway.org.uk

 

The Brain and Spine Foundation:

* Web address: http://www.brainandspine.org.uk/

* Telephone: 0808 808 1000 (where you can speak to a Nurse)

*  Email: helpline@brainandspine.org.uk

 

Both sites have lots of good information on SAH's, so even if you don't speak directly to anyone, there might be something there that will answer your questions. If your questions are more specific, email them.

 

Hope they are helpful for you.  The aftermath of a brain haemorrhage is such a mind blowing time.  Just keep being positive. 

 

xx

[Chris G]

Jade,

 

Welcome.  I cannot provide much advice as I did not have the coiling procedure with my SAH.  I do understand your worry and concern for Todd and I will send you both prayers for a full recovery.  Be patient and don't let the internet scare you too much.  The fact that the doctors are taking precautions and aware of the risks is a positive.

 

Chris