NASAH June 2022

[DSE]

It has taken me a few months to write about my experience on NASAH on this forum as I am a very reluctant member of this club, but I would like to share my experience. I am living in France so my experience with health care may be different from others.

 

On June 9th I had my second Pfizer covid booster jab before heading to Madrid on June 10th to meet our business partners for a delightful mix of business and pleasure. A wonderful few days during which I contracted covid, along with one other member of the party.

 

Arrived home on June 14th with a headache, a fever, lethargy though no other symptoms. Covid was confirmed by PCR test on June 15th and by the morning of June 16th I was in Intensive Care at Grenoble. I had not managed to sleep and was pacing my room with a headache which would not shift when I experienced the sensation of being sandbagged in the back of the neck coupled with nausea.

 

My daughter and husband were at home though in other rooms due to my being covid+. According to my daughter I staggered out of my room repeating the word "aneurysm" over and over again - my mother had a ruptured aneurysm at the age of 58 but thankfully made a full recovery - and they called the pompiers who arrived within about 15 minutes, my family having guided me to the entrance hall of our apartment building to wait. I could no longer stand or move my legs and was almost continuously bringing up thin streams of vomit. I was helped into the ambulance, my family had to follow on due to covid restrictions.

 

Thankfully, I fell into unconsciousness very quickly and have no memory of the emergency angiogram at the local hospital which nicked another vein in my head causing yet more bleeding, or of the helicopter flight to the specialist unit at Grenoble where I woke up three days after being admitted. I continued to test + for covid for the duration of my stay though

 

I did not feel that I had any symptoms at all with the possible exception of a raised temperature which might have been common to all patients recovering from SAH. My discharge notes state I was admitted with  SAH Fisher scale 4, Glasgow Scale 10. On day 7 in Intensive Care I developed vasospasms which were successfully treated. In all, I was in IC ( or "Re-animation" as they call it here!) for 14 days, with a further 5 days in the neurological department after which I was discharged to a rehabilitation centre close to my home where I spent 5 weeks under surveillance, doing 30 mins daily physio, supervised 30 mins gym sessions x2 per week, daily 30 mins occupational therapy with weekends off.

 

I was visited by a social worker to help me navigate my way around any benefit or insurance claims and am currently in receipt of a forfait journalier until I go back to work. I was also seen by a neuropsychologist once per week to help me manage my feelings. I had to surrender my driving license, of course, but a pathway to getting it back was established: I had to go before a multi-disciplinary jury who put me through a series of physical tests,

 

I had to re-sit the "driving" component of my driving test, a one hour session of driving round the town with a driving instructor and an occupational therapist who engaged me in conversation throughout to see if I could manage and finally I had an appointment with a state appointed doctor who reviewed all the notes and, again, put me through some physical tests before signing me off as "apte".

 

The license is re-issued for one year, a follow up appointment with the same doctor is required in order to have a permanent license. I had follow up MRIs and CT scans in October 2022, again January 2023 and I have my second follow up with a neurosurgeon on 15/02/2023. Thankfully, to date no physical anomalies have been found, no swelling and the nicked vein has healed perfectly.

 

I am under quarterly observations for my thyroid levels which took a beating due to the heavy doses of iodine during the quite frequent scans while I was in IC. To look at me you would never know I had been through such a traumatic experience, apart from my hair having to grow back having been shaved off entirely on arrival in IC.

 

I am ferociously grateful that having had the bad luck to suffer NASAH in the first place, I have had tremendous luck in my recovery: I was not alone when it happened, the ambulance came very quickly, because of where I live in France I received excellent treatment promptly and continuously, I have had immense moral support from friends and family and I have been able to work very hard to be the best I can be at this point.

 

Physically I am able to do most of what I could do before though I am subject to unpredictable bouts of fatigue and many weird neurological sensations/headaches/neck aches which cause me a nanosecond of grief and worry with every flare up. I find I become more emotional than previously, particularly when I have to discuss what happened to me. My eyes become very sore and heavy and I find it difficult to get the words out. It is a form of PTSD, I am told. The brain fog has begun to lift from time to time, though the first time it happened I did wonder what was wrong with me until I realised it was actually something that was right with me, which made me laugh. Mentally my recovery is ongoing.

 

I feel anxious about almost everything I do for the first time - taking a train to visit my daughter in Lyon recently was a huge hurdle to overcome as I associate crowds with the possibility of catching covid, and catching covid with the possibility of having a second SAH.

 

The fact that I have survived with my faculties intact and therefore not looking as though I have been through anything burdened me initially with imposter syndrome. The not knowing why my event happened is proving incredibly hard to accept, not knowing if the booster jab had anything to do with it, not knowing if having covid triggered something, not knowing what the hell I could have done to prevent it happening in the first place, the fact that terrible things can happen to anyone with no warning.

 

No doctor I have spoken with has been able to give me a conclusive answer. Tricky. I see a psychologist once a week at the moment to help me navigate these uncharted and unlooked for waters. It helps tremendously, a real hour of decompression in the week which I believe is vital not only for me but for my relationship with my family. It is a thing which happened to me, but also happened to us all, a huge sense of life before and after SAH. I am, though, hugely optimistic that once I pass the one year anniversary I will feel differently. 

 

If you got this far, thank you for taking time to read what has been my experience.

 

 

 

 

[Swishy]

Hello,

I am happy to have you with us here on BTG, I do understand your reluctance to join us.   I too had a non aneurysm SAH 5 years ago.  The doctors taking care of me searched to find the cause and I was left with the fact they did not know why I had it.  It was difficult to not know why it happened, it made me feel like "how can I prevent it from happening again"...I too had vasospasm...they had discharged me and it was a difficult experience for me to recover from and I still have some issues from the event.  

 

I am impressed and happy for you that you so quickly had the help of a psychologist , it took me a long time to search out a therapist and when I did I found it to be very helpful.  It took me a very long time to wrap my head around what had happened to me, too long I think.  I am sure starting with a therapist sooner would have been more helpful.  

It is a process, not just the healing, but learning to trust my body again without fear.

 

I think as I read through posts here from some wonderful people I realized that this terrible thing can and does just happen, often without warning to anyone.  We are fortunate survivors of a life changing event.  

Your progress sounds quite good.  Be patient with yourself it is a huge undertaking to recover from this.  My thoughts and best wishes as you continue your recovery.

xx

Jean

 

 

[DSE]

Hello Jean,

 

Thank you for such a kind response. My main takeaway is that you are able to say that you had an NASAH 5 years ago, most encouraging for me. I am sorry to hear that you went through some tough times, it must have been so frightening suffering vasospasm outside of a hospital context - it was unnerving enough within hospital!

 

I have found my "talking therapy" incredibly helpful, I took the decision before I left the centre de rehabilitation that I would have to find a therapist to help me plot a course through the swamp of anxieties I was faced with. I am now unpicking them all one by one, but going to a therapist means that if I find I need to talk about the same thing for three weeks running I can do so. 

 

As you say, recovery is a process and we are the fortunate survivors who get to join in that process. 

 

Best wishes,

Debbie

[ClareM]

I am 8 years post NASAH bleed. I’ve asked the question many times what caused it. Mine was a large bleed causing hydrocephalus and the necessity for a temporary drain. The best explanation I had was that it was an aneurysm that blew itself out and then sealed up, doing the job the neurosurgeons would have done. 

I started with a neuropsychologist a year after the bleed and still see her. My main reasons for such long therapy is that I have had to change my job several times due to stress and fatigue. She has helped me immeasurably, I would have never coped without her. 

Talking about what has happened is so important and especially to someone who recognises that although we all look well, there are hidden issues. Not many people understand that. 

 

And yes it’s still fine to talk about the same thing for several years, going over and over in a safe space! 😊

 

Best wishes for a continued good recovery. 
 

Clare xx