Jackie - My Story

Hi Jackie, welcome to BTG and I'm sorry you are feeling so low and unwell at the moment. I am really hoping you will start to see some improvements in the coming months and that the site will help with some answers and some reassurance.

I had ICP monitoring post my SAH and via an EVD and it is horrid as despite wonderful teams you lose some CSF and that is a dreadful feeling. Also remember our body is used to absorbing the CSF and when it doesn't our electrolytes and minerals go haywire. For me the experience of low pressure and effects of that on a recovering brain leaves me feeling dreadful but it does pass, if it doesn't that is a sign to seek more help and don't ignore it with your shunt, 

I had to have numerous LPs to date ; following my discharge , then later on before having my VP shunt and since then a few times to check on few things and each time the effects of that have left me feeling low, and the stuffing completely  knocked out of me. I can only tell you that learning to live with the clunky effects of a shunt takes a bit of getting used to and you are doing ever so well so be proud of yourself for all you have acheieved so far. 

When i came here after my shunt and SAH I was terrified, nothing felt right, I was worried and the Louise, Super Mario and Win all let me know that having a shunt just required finding a new state of balance and also some occasional singing. And in my case occassional swearing .

I had a lot of one step forwards and two steps back but youre not alone and you will continue to move forward. Keep on keeping on and rest whenever you need to. 

Hi Jackie,

I did answer your mail yesterday but it is missing so if you get 2 just ignore one.

I did think my time was up and my Daughter told me about a site she found while I was in hospital, Yup this site !!

My N Surgeon  told me , do not stress as stress is bad for us.  Hard not to stress so I sing a song or 3 to keep the blues away and just knowing we are not alone helps.

It has put my mind at ease knowing that life goes on after SAH/Bleed.

I came on here full of doom and gloom and left laughing,    Also water helps so keep drinking it..

Then Daffs came on who also had a shunt and we could speak about our worries. 

You will get there just drink water, type a song and always have a smile at hand as it really helps (Well it does me, easily pleased lol)

Take care and when you feel up to it come in Green room where we chat about everything and nothing.  To just know we are not alone helps xxx

Been there done it lol got the medal xxx making your medal now.  xxx

Take care

Win xxxxxxxxxx

Hi Jackie,

In my case, when I was 'repaired,' my pituitary gland was damaged and it stopped producing growth hormone and I now have that by daily injection.  If you are feeling depressed, I would ask that they check your hormone levels as you may be deficient in them.  I know ladies of a certain age sometimes have that kind of deficiency naturally and it is rectified by HRT.  I don't know what stage of life you are at but age doesn't matter if there is a deficiency.  It needs to be identified and put right.

Well, that's what I have now, HRT - the song', "Man I feel like a woman" by Shania Twain comes to mind. 

It is only a possibility, it's just when you said the surgeons couldn't find anything wrong, my own case came to mind, as I too felt depressed until I was diagnosed with this deficiency.

I'm not saying that is what has happened in your case because I am not a doctor, but it is something you could ask about when you talk to the medical professionals.

I wish you luck,

Macca

HRT did sound like a good idea but they have to consider that I had breast cancer and it was hormone dependent! Thats why I think they're reluctant to do anything.

Anyway I saw GP who gave me an SSRI, to take at night , and I'm also going to see a neuro-radiologist, whose secretary called me this week to arrange!. Apparently need to discuss MDT meet! about my MRI/CT Scans. 

I feel confused, but feeling more able to cope with total change of life. I think that this has been the hardest part. 

I can't imagine working as a midwife again, as it all sounds so scary and as I'm slower and more hesitant, I don't think the style would be good for me or safe for women.

It's a big adjustment to make, and I'm struggling with those feelings. 

I do sound so negative, but I can assure you that when I feel "OK" , I am quite loud and boisterous.

thank you all for positive comments, very much appreciated

regards

Jackie

Don't be negative.  Look on it as an opportunity to discover new things and new ways of doing things.  You'll be surprised at what you can put your hand to when you try!

Good luck,

Macca