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Hello dear fellow SAH members,

 

I am a new member in this forum and very happy that i came across this site. I have read and re-read many forums and articles in this site for re-assurance.

It has been an eventful (and still counting!) since October 2016, when my husband (39) had his ruptured SAH. I wanted to share my story and seek reassurance all in this thread and hopefully, someday like many of you here, be able to look back how it has reshaped our lives for good.

 

It was a regular day when my husband did the taxi duty for my children boy(7) & girl(5) from their classes. I was at my work when i got a call from him telling that he had non-stop vomiting. He attributed it to the food that he had at that time.  I went to pick him up whilst both of my children took care of their father (yes!)  After we came home, his vomiting stopped, however the splitting headache continued on saturday, but he was able to rest(restlessly) throughout. Since the nausea or the headache did not reside, we decided to go to A&E that morning and it was the Sunday morning that the collapse happened and that was something I will never forget!

 

He collapsed on Sunday morning, Called the A&E, as that collapse did not look right to me, it surely did not look like a faint due to no-eating for 1.5 days. The A&E crew came pretty soon and they started off their assessment - they did the FAST test, which my husband was fine with. The factor that was worrying them was the BP that was quite high - a whopping 240/180

 

We were taken to Northwick Park A&E where was taken into a scan pretty much straight away into HDU and they came out to tell me that my husband had a subarachnoid haemorhage because of a ruptured aneurysm and his BP is still unable to be controlled. A couple of minutes later another machine went in to his room and they came back to tell his kidneys were failing too. I was trying to come in terms with what i have been just told and went completely numb. The kids were sent off to friends house and the way friends rallied up to help makes me go on knees with gratitude.

 

We were told that we need to be moved to Charing Cross Hospital as they have the speciatlity neursurgery unit. THe wait for the bed was quite long but the A&E doctors were chasing them actively. The move happened in few hours! In the charing cross hospital, we were sent to the CCU and 2 options of coiling and clipping, my husband was slipping in and out consciousness till Monday afternoon until he was taken to angio where it was decided they will clip it. However, due to the nature and the location of the aneurysm, the clipping option was aborted and he was wheeled out with the coiling procedure pencilled in for Tuesday. Another torturous day passes.

 

On tuesday he was taken in for another angio and coiling procedure was successful - yay!  I returned home to se my children after 3 days of total absence, who were housed by our exceptionally kind friends for those days and not to mention my guardian angel, my mum who flew in from India on tuesday to support us. When i returned the wednesday morning, i was greeted with a rather sad news that my husband has had an ischeamic stroke during the coiling procedure. He was taken into the CT scan area for many times to establish if that was going to be permanent.

 

I was dreamily expecting my husband to wake up cheerfully and that is it, nightmare over. But I was naive (or fooled by many movie scenes) It was seemingly distressing 3 days and the distress was increasing in leaps and bounds in terms of chest infection, less oxygen in take, decreased renal function and the sense of hopelessness in the chief of that ward's face despite everyone's best attempts.

 

On wednesday, i had another news to take in - which was that the other there is another part of the aneurysm that is still not coiled and it needs continual monitoring. I will never forget that day when the doctor told me about that! On Friday/Saturday he opened his eyes and until tuesday Sandeep was in between conscious and unconscious and much of his talking was not understandable. Slowly on wednesday there was a sudden clarity in his eyes and it was like a light switched on! he was becoming restless because he was unable to move his left side at all.

 

On wednesday we were moved to the Acute Stroke ward. Those 2 weeks were not very pleasant either with him discovering how weak his left side has become. Nimodipine was still on every 4 hours for 21 days. On top of all the existing issues, we got to know that he had an EColi infection when he was in the CCU) The renal function did not resume and it was still hovering over eGFR 35% and the BP was over 150/100. We were moved to Northwick park hospital for further recovery and also renal function and BP management  Another 3 weeks in Northwick park hospital with various tests and follow-up and scary news and finally we got home on the 14 of November. AT this stage, we did not know anything about the follow-up about the other aneurysm at all!

 

We were/are still attached to the renal clinic where his BP is managed, at the early days of discharge we had to go in alternate days to see this Godsent doctor who took many of the outstanding tasks in his hands and sent us for tests and mixed and matched the medicines to get his BP under control!! It was/is such a relief to be under his care.

 

There was good resting at home, however the sleep was tremendously disturbed. Early in Jan, we were going to get a biopsy done on the kidneys, unfortunately we were told that he has CKD stage 3-4. There have numerous test and visits to various clinic between the time of discharge and now. They manifest a change in him each time, seen as a deterioration or a new normal as we beginning to accept it.

 

He has started to work part-time, but that has taken a set-back because of the fatigue and also another DSA in April 2017 to find how the posterior aneurysm. I hope we get an all-clear. As of today, fatigue and sleepless ness are the top most factor affecting our day-to-day activities. There is lots of medidation, walking, massage, teas in various orders thrown in, but still seems to have less or no effect. Daily sleep quota is not more than 2 or 3 hrs (max!) GP prescribed very mild sleeping pills, but it makes him even more hazy the following day and somewhat elevated BP. With the reduced kidney function (30%) the diet is even more restricted than it would be regularly.

 

I remember a well said statement 'It is not a sprint, it is marathon' We are into the marathon, one day is not the same another. We are taking the day as it comes, but yes, there are days where I want to throw everything that I have in my hand and howl.

 

Thank you for reading such a long post!

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Hello and a warm welcome to BTG.

 

So glad that you have already found the site a support as you have read through some of the earlier threads. You will get so much help and information from the experiences of those who have shared their journeys.

 

While we do not give medical advice, you will find the support invaluable as you and your family cope with the readjustments you have to make to your lives as you help Sandeep in his recovery.

 

Those long weeks in hospital with the uncertainty of what is happening, and with so many issues, and the added complication of the stroke to try and understand;  is indeed a time of great trauma for you all. The mental and physical demands of coping with hospital and family life while caring for your young children leave you exhausted. I am glad you had the help of your family during those early weeks. How are you all six months on ?

 

You are right, you have started not a sprint, but a long journey with Sandeep.  Six months is early days for him given what he has been through. He has done well to try and return to work so soon. It is understandable that he wants to be back trying to support you all financially, however you will read time and time again on this site that a slow phased return to work is so important.

 

Always reassessing based on how his brain and body are coping. Fatigue and tiredness can be a longstanding post SAH issue for most survivors. Everyone`s recovery is different. Please ask Sandeep to be patient. Ensure that he keeps well hydrated.

 

How are his kidneys now.  Did he have any kidney problems prior to his bleed? Kidneys can be very resilient.

 

Please keep in touch with us often and ask any questions. Our members will make every effort to share their experiences with you and support you in the days ahead.

 

Subs

 

 

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hi Shobs and Sandeep. Welcome to BTG. We understand what an ordeal this  has been for you and your family to go through and what may continue to be a challenge post the bleed so as Subs says members will just try to be offer support, encouragement and shared experience that may help. 

 

I was also 39 when I had my bleed, spent a lengthy time in hospital , and have a neck in my coiled anni and although I didn't suffer a complication of kidney issues I did have hydrocephalus so a little understanding of your trying to juggle the news of this 'new' condition on top of the bleed. Each day will bring extra confidence but also will also bring some fears as well and it's good to keep talking about those and don't let that build up and become unmanaged.

 

im going to share some of my tips for helping with the sleep which is incredibly disrupted post SAH and maybe a couple might help. Forgive me if you have tried all this already .

  • ban all screens and technology from the bedroom and make sure you use none at all for at least half an hour before trying to sleep.
  • try and set a regular time for sleeping and have a wind down before hand, so shower, bath, whatever works for him
  • Soft lights, cool bedding, darkened room and some gentle music can all help tell the brain now is the time to relax...I like to us a pillow mist spray .he may not! 
  • learn how to do a body relaxation, slow breathing, you could do this together, work at relaxing from toe to head and just rest, you may not sleep but you may also drop off but just learning to switch things off is a very useful tool 
  • a very gentle massage of his feet and hands can be nice, again, he should shut the eyes and just have the massage and when thoughts creep in send them away. Use a nice oil blend that is relaxing and he likes the smell of but isn't to' uplifting' I can suggest scents if you like 
  • write down any worries , wins and daily thoughts  in a little book as the last act of the day before sleeping, always end it with his 'thankful' thought

But if he does wakes up don't beat either of yourselves up up, if he really can't get to sleep at that point then decide to just rest or do something quiet but still give the brain down time.

it sounds like he is doing a lot and asking a lot of his body and brain and the inability to switch off could be that it's just reacting to coping with all that so if he can slow it down and is open to that then I can promise it will pay divedends. 

 

I am a a big fan of the marathon approach to this recovery, my husband is a marathon runner so luckily he could coach me a little But it took me a while to understand it's not a fast process to regaining stamina and adjusting to a new operating state. 

 

And as for you lovely lady, scream, yell, cry when you need to and just talk to people, talk to us, you're not alone in this and it's very hard to keep things on an even keel. Yes  he changed that day,  it was a shock that's still reverberating and it probably still feels very scary and shaky but together you and he and you family will hold each other and find the way to the better days. 

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Hi Shobs and Sandeep,

 

As others have said we cannot give medical advice, but to know your husband and others have been through the same is a help in itself.

 

We are here and when we feel like a rant I come on here, as a trouble shared is a trouble halved.

 

I remember nothing until I had a shunt put in to get rid of my Hydrocephalus in 2010.

 

I was told I would not walk but I came on leaps and bounds, I can walk 220 yards before resting my back. 

 

Keep Hubby away from unhappy people I find I cannot listen to others troubles too much since my SAH.

 

I need happiness and I have come on here and left laughing at computer screen !!

 

My Neuro Surgeon told me Stress is bad so passing it on to you.  So if you have Family or Friends who like to tell you their tales of Woe keep them away for a while.

 

Wishing you both Well and let us know how you and hubby are coping.

 

Good  Luck

WinB143 xx

 

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@Subs - thanks so much for reading the post and your kind words!

The kidneys are still at 30%, the nephrologist has let us know (following the biopsy early jan) that both the kidneys have suffered an irreversible damage, so he will not be able offer any treatment. Maintaining the BP and being cautious about what we eat is the key to keep the kidneys going for the next 10 years. Then on, there will dialysis and kidney transplant.

 

There were no known kidney problems in the past Subs - it all came at once.

Yes, patience is the key!
Love, Shobs

 

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@Daffodil - thank you for the lovely tips. I have not tried the oil yet, I should give it a go, at least for the feet.

Yes, 'to get back to normal' vs 'accepting the new normal' is a mega challenge as of now.  That plus the setback he experienced (experiences) with the CKD, whose damage is not reversible is spiking the stress levels.

Thank you again

Love

Shobs xxx

 

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@WinB143

Thank you for your kind words. Especially about keep away from stress.

We have had a rocky relationship with his father and sibling and this has pushed it over the edge. I'd have thought this incident will help shake the ugly thing off. If anything, this incident has made me realise the real side of people!

So, a big like for your 'keep the sob stories away!'

Love

Shobs xxx

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Hi Shobs & Sandeep

Welcome to BTG, 

I'm so sorry that Sandeep suffered SAH, stroke and CKD it has been a very traumatic time for you all.

 

All I can really add to the advice that has already been given is to make sure he stays well hydrated and listens to his body and his brain, when he is tired plenty of rest.

 

Shobs, try and make sure you look after yourself also, it's a long road ahead for you both.

 

You have definitely come to the right place for help and support you will find a lot of helpful information here, you will also make a lot of friends who can relate to what you are going through.

The recovery road can be a bumpy one at times, we are here for you and Sandeep.

 

Best Wishes to you both.

Love

Michelle xx

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Hi Shobs & Sandeep :)

 

A very warm welcome to BTG ! So glad you found us.

 

Some really great replies from the others above.  Good days and bad days we are here for you.

Keep in touch, we are a friendly bunch :) and we look forward to hearing how you are both doing. 

 

Take care

Love Tina xx

 

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A warm welcome to the Forum and I am sure it will provide some support to you both.  Sounds like a really difficult period for you both, but really impressed with the strength you have both shown.  I know this will be an emotional period adjusting to the complications left from the SAH but already what may seem like small steps are great strides after such a bleed.

 

I could not sleep well for months after my SAH, I found I had to just accept short naps - not always possible I appreciate.  It is good that you are taking each day as it comes, that is the best approach and the brain is a fantastic thing which finds so many ways to repair or find different pathways. 

As others have said you need to also look after yourself as I was pretty hard work for my family post SAH, happy one minute, tearful or angry the next.  They definitely needed an outlet;  you had to go through this too, watching and waiting so please seek all the support you need.

 

I hope things do improve but  sometimes just accepting the changes or new life created by the SAH is part of this  improvement.

Take Care

 

Sharon x

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  • 2 weeks later...

Hello Michelle,

 

Thanks for your lovely words. He has now slowed down a bit at the work front and properly listening to his body . 

It is visibly helping him a lot. We both went for a 1.5 day yoga session and it has significantly improved our state of minds.

Thanks

Love

Shobs xxx

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Hello Sharlau - yes, sleep is still eluding - it is quite scary that he is able to go on about day-to-day (albeit grumpy and very tired)

The yoga session that we have signed up recently, i am hoping will continue to help us! 

Love

Shobs xx

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I really sympathise with the sleeplessness.

I'm 7 1/2 months post SAH, and after about 2 weeks could not sleep at night, tossing and turning fighting it. I eventually gave in and would get up have a cuppa and watch the telly, well it was on ,but not concentrating on the actual program.

 

I reduced my afternoon sleep to a nap on the sofa, for a about 30 minutes, power nap, or nana nap as I call it.My therapist said it was good that I did that, also advised not to use iPad etc at night when in bed, as they are too stimulating for the brain.

I hope things settle as it did eventually for me, took some persevering.

 

Take care of yourself also 

Michelle 

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Thanks missy - appears it is about the same time my husband has his SAH.

He has been trying Yoga for the past 2 weeks and he is able to doze off at least for 2-3 hrs in the night, which i think is a good start!

They are mostly breathing exercises and slowing down where possible. 

I hope you find your solution quickly too.

Love

Shobs xx

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UPDATE

Sandeep had the follow-up angio(the dye assisted DSA) on Apr12th and the procedure itself was smooth. 
However, the results are a tad bit disappointing - apparently the other lobule of the ruptured aneurysm has not occluded.

This leaves us with the coiling/clipping/leave it alone options.

 

The radiologist mentioned that the consultants will send out the letter for further discussion, however, he told that he was able to see the aneurysm unchanged - which I suppose is a good new in itself, that it has not grown bigger in size or so. He was unable to see any other new aneurysms in that area either.

I was extremely hopeful that they will come out and say all-clear and go-away and it will be confetti time. 

 

It is waiting time now - wait for the consultants to tell us what needs doing and then decide based on the options we are given.

Oh and we celebrated completion of 6 month-anni-versary on Aprl 9th! 

I will keep you all posted.

Love

Shobs xxx

 

 

 

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Hello and thank you for your update on Sandeep.

 

We look forward to hearing of the consultant`s advice following Sandeep`s recent angiogram. Waiting for a reply is always such a tense time given the possible options.

 

Well done to Sandeep on reaching the six month milestone.  So much has happened in that time, but also so much still happening.

I remember well when with Mrs Subs, each day was another step in the recovery, and before you knew it...it was 6 months...then a year.............and now here we are coming to 6 years on 8th May this year !

 

Hope you are all adjusting well as you help in his recovery.

 

Please keep in touch

 

 

Subs

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Best they have spotted it, as they are doing their job, a few on here have had the aneurysm either re coiled or clipped.

 

Some have a regular check up on it to make sure it hasn't changed.

 

I know you both must be worried but it shows they are alert  to this.

 

Good Luck to you both

Love

Win xxxx  Head/Chin up  xxxx

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Thanks Subs & Win,

 

The doctors told that they will get back to us within 6-8 weeks, so I guess it is waiting time. Apparently the residual aneurysm is 4mm in size.

 

I agree Subs, time is the true healer. Although it sends a chill down my spine to think about that day, I am incredibly grateful today for all the good things.

 

I am reading the book 'Dented Image' by Alison and there is a line that so defines the state of mind

They are not well - They are not ill either.

To describe the on and off days!
It feels fantastic to chat to you guys

 

Love & hugs

Shobs xx

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Shobs, if it's any help I also have a small anneurism which we do nothing with other than monitor and a neck on my coiled on and in the five years since neither has changed I am pleased to say. They will keep an eye on it. 

 

glad the angiogram went ok, it's an odd procedure to say the least with all the machinery in the room and lots of medical folk all peering at your brain up on tv screens all the whilst you have a fully exposed groin area ?

 

Hope the sleep pattern is beginning to settle and the yoga is helping. I do think learning to calm and settle our ' over stimulated' brain can really help, finding ways to relax and be still is a good thing.

 

take care. 

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I agree Daffodil, I found it rather interesting (I dont know if that is the right word here) when almost all the nurses and doctors peeped into the groin area and said - Ah, that looks alright!

 

Thanks for letting me know about your aneurysm, I will pm you to find out a little more about it.

 

The main concern here is it is not a new aneurysm, it has already ruptured but has been coiled and partially sealed. the doctor compared it with a dormant volcane, but that erupted 10 years back, so the chances are 50-50.

 

I will keep you posted,

 

Love

Shobana

 

 

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  • 1 month later...

Hello lovely people,

I have an update to post here(but a good one!)

Sandeep had to have a flexible sigmodoiscopy done last week and they found a polyp - non malignant(yay!) they removed and clipped it strightaway :o)

It has been such a relief for us, as the doctors found it last year when Sandeep had the first heamorhagic stroke.

We were nervous - but very thankful that it was not as bad as I had hoped.

On the post-angio note, I am still chasing the neurosurgery team for a follow-up appmt. I will keep posted here too.

Hugs

Shobs xxx

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