Reassurance desperately needed

[paula m brown]

I had my SAH 13 wks ago. Although I have recovered really well and quickly I am still off work as I have a permanent numbness down the whole of my right side. No one seems to be able to tell me if this will improve or is this as good as it gets. The wait for any kind of help is taking forever.

I feel in complete limbo as I cannot make any plans to return to work whilst I have this numbness (I would not be able to do my job)

I know how lucky I have been but I also feel so depressed and I must admit that there have been times when I wish that I hadn't survived (silly I know).

I had the coil treatment but I still have 2 small aneurysms that the docs think will be ok.

I feel so low and because of this I am finding it very difficult to give up the dreaded smoking!

Has anyone else been left with a similar problem with numbness, my left side is not brilliant either.

I feel so alone and desperate although I am not alone, I have a fantastic husband but it all seems to be taking its toll on him now.

I have decided to go and stay with my grown up son for a while, mainly to give my husband a break but I will miss him terribly.

Any advice would be greatly appreciated

Paula

[cathmat]

hi paula you've come to the right place for reassurance , im cath i had a sah nov 11 with coiling . ive recently gone back to work not doing ny original job but doing admin . Every day is a struggle in work but its something i need to do. There are lots of friendly people on here , as for the numbness have you discussed it with your consultant? Its early days for you i get a little better every day . I think everyone has a period of sadness i definatly have where i was sorry i survived but this will pass eventually if not speak to your gp or just talk on here it really does help

Take Care love Cath x

[Winb143]

I had SAH 2009....in 2010 I had a shunt fitted as I was away with the fairies until shunt was fitted .....I still have numb arm ie hot prickley

feeling from my thumb up to top of arm..as if a nerve has been trapped...sometimes it is worse than other days....

Keep your chin up...and never let it beat you...come on you are a fighter so go get em girl ..lol....go out with a friend or hubby have a coffee ..decaff !! ....smile if poss and never give in...you have been through it and so have family...You take care and look back on how much you have come on....and you will improve xx keep the faith ...I was told I wouldn't walk again ..apart from back pain I walk a

little but it is walking.....Keep onwards and upwards !!

Best Wishes

WinB143 xx

[goldfish.girl]

Hi Paula

I don't have any numbness but I do remember all my limbs were incredibly weak for a long time after the SAH. They still are not as strong as they were but they are fully functioning. I think the fatigue in the early stages may have a lot to do with this - so hopefully you will have improvements with it. Have you spoken to your surgeon or GP about this? Maybe they can help? The only time I've had numbness since was after a holiday with my children earlier this year. It was quite full on with a lot of travelling & not my usual rests while we were away. I was so tired after it that texting & typing were a huge challenge for 2-3 days. Even my face & lips went numb which was quite scary but it did all settle down over a week of rest or doesn't seem to have been anything serious in my case.

It's so hard on all your family members when SAH happens (as well as yourself) and perhaps it would help your husband to understand if he has a look on this site too?

I think all of leave hospital after the event with very little support & information and perhaps talking to your GP or if there is a nurse specialist at the hospital where you were treated about how you feel & how your family is coping will point you all in the direction of some help. I know some members have found Headway' really helpful, is there one near you?

Please remember that at 13 weeks you are still very early in your recovery and things will keep getting better for as time goes on.

Michelle xx

[jeanhelen]

Hi Paula,

I can relate to what you say about persistent numbness; my left leg and foot felt numb for months but it DID improve and I hardly notice it now. 13 weeks really isn't very long for your brain and body to recover properly, it feels like a very long and very slow process but as my GP has told me frequently, SAH and surgery is not trivial thing and it will take as long as it takes for me to feel "well" again. I have been off work for a year now and envy those who are able to go back to work as I still would not be capable of doing my job.

Depression is a tough one, maybe you could ask your consultant or GP to refer you for counselling or a Local Head Injury Service or support group. My own GP has been marvellous and I hope yours is too, he seems to have infinite patience with my seemingly endless complaints about feeling tired all the time and low-level misery about not being allowed to drive now as well as fears about what else might happen when I will feel "OK" again.

Enjoy your visit with your son, and don't expect too much of yourself. Everyone on BTG is friendly and has been or is in a similar situation to yours, including the need for reassurance

[paula m brown]

Thank you so very much for all your kind replies, I thought it was just me being really selfish by having such negative thoughts but obviously not.

I will suggest that my hubby joins this site, as you say, it may help him too.

I am waiting for an appointment with Headway, but like everything it takes time, I'm also awaiting appointments for neuro therapy and physio.

Thank you once again for the replies, a bad day has been made better by chatting on here.

I wish you all the very best of luck with your recoveries.

Paula x

[kpaggett]

Paula,

I didn't even have any coiling and I still had no movement on my left for a while. I still get tingly/numbness on my tongue every so often too. I had a terrible time with my legs as I tried to exercise the heck out of them thinking that this would make them get better faster...we it didn't at all. I'm one year on and still seeing improvements and I hear that others keep improving as they go on too.

I am also very morbid at first feeling like I wish I had just died. Now I feel indifferent...I could go either way. Every one else is 'Glad' that I'm alive and they all want me to feel the same, but I'm not quite there yet. As time progresses, I get more accustomed to not knowing what's going to be next in my recovery. This used to stress me out to no end! Breathe, let life teach you. We both survived even though we may or may not have been the 'Lucky ones'.

Keep on. I do.

~Kris

[DawnS]

Hiya Paula,

although I don't have any weakness in my limbs, my arms and legs used to go numb all the time when I first left hospital. It wasn't like pins and needles because when I moved my arms or legs, the circulation didn't come back. This all faded away after about 6 or 7 months. You will hear this a lot, but 13 weeks is very early days! If you are up to it, it might be worth keeping some notes about how you feel and any symptoms you have. That way you will be able to see any progress you make. Some improvements might go unnoticed because of how slight they seem, but there will be improvements on a very regular basis. I attend Headway and find it very helpful. The lack of aftercare does seem to be rather a theme with the NHS, they do an amazing job of patching us up but then they send us on our merry way! As for the depression, have you spoken to your GP about this? S/he should be able to offer extra support for you.

Dawn x

[cathmat]

Paula,

I didn't even have any coiling and I still had no movement on my left for a while. I still get tingly/numbness on my tongue every so often too. I had a terrible time with my legs as I tried to exercise the heck out of them thinking that this would make them get better faster...we it didn't at all. I'm one year on and still seeing improvements and I hear that others keep improving as they go on too.

I am also very morbid at first feeling like I wish I had just died. Now I feel indifferent...I could go either way. Every one else is 'Glad' that I'm alive and they all want me to feel the same, but I'm not quite there yet. As time progresses, I get more accustomed to not knowing what's going to be next in my recovery. This used to stress me out to no end! Breathe, let life teach you. We both survived even though we may or may not have been the 'Lucky ones'.

Keep on. I do.

~Kris

Hi Kris thanks for your honesty i feel guilty for feeling like this . my life feels so difficult and i envy everyone who s life is still the same , its good to know that is probably normal to feel like this x

[Louise]

Hi there not sure if I've said hello or not so hello & welcome glad you found us.

13wks is really no time at all, but everyone thinks that it takes forever in recover you know they say patience is a virtue well they're right...

I didnt have numbness but to have a weak side - tiredness - & a learning difficulty - short term memory all of that got me down but honestly it improves..Improvements happen sometimes so small you dont notice but they happen have faith.

Maybe a trip to your doc to speak about your fears, Oh what a shame but your husband should be supporting you hun thats what its all about yes our other halfs do find it hard but hey least they're not having to adjust to the new body so to speak, my hubby says he's lucky he's had two versions of the same wife A & B before & after...now that has to be cool...

Take care.