all the best
Thanks Gus.
DBS - My Long Journey
Hi all
Afraid it's taken me this long to send you a post but I didn't feel like talking about my last appointment at the National until now.
The consultant who runs the Department was there as was the consultant who would be carrying out the operation, together with the Specialist Nurse and students - and my O/H with me. They asked me a few questions but ultimately they said because of my frequently forgetting words, not remembering what I was talking about and a few falls, there was a 2 % chance of the operation going wrong and leaving me in a permanent state of not being able to walk or remember anything so they couldn't risk offering DBS to me.
I'm going to see my Consultant on Monday to see if he can help me. The other Team said they would recommend that I have something straight into my stomach but I will have to read up on it.
Keep in touch
Best wishes
Casie x
Casie,
I am so sorry to hear this I really feel for you I hope your consultant is able to offer you some sort of alternative.
I am still waiting to see how they score me on my assessment but for now my thoughts are with you.
take care lots of love BB xx
have you asked gp if you could get referred to Bristol southmead hospital as they have robotic therter and may other some way of having dbs sometimes tho its not for everyone keep on fighting
Casie if you need to talk call me you know I will do what I can to support you even just on the phone.
BB xx
Hi Cassie - sorry to hear of your disappointment with the DBS, it could all be for the best in the end I'm sure of that. These doctors have such difficult decisions to make all in your own interest, so keep focused and hope something else comes to light that can help you in other ways
Take care, all the best - Sheila x
Hello all my Brothers and Sisters in arms.
I find out on Oct 12th if I can have the DBS and if so exactly which of my symptoms can be targeted.
BB xx
Hi BB, its good to hear you have a date now. You have been fighting for this and I truly hope that it will be the answer you wish for. More importantly that you will get treatment that enables you to reduce your medication and gives you the control of your body that you need.
Will be thinking of you,
JuJu
xx
Thank you JuJu,
I do appreciate your support cannot say i am not terrified at the thought of having it done but I am also terrified at the thought of being knocked back.
I am getting so fed up with this crap I am tired in pain and and losing weight left right and centre.
And its changing me as a person and I can't allow that to happen.
So heres hoping I have passed and been accepted.
Sending you Hugs BB xx
Hi BB, I'm also routing for you and hope so much that this goes your way.
Sending a big Norfolk hug.
sue xx
Thankyou Lexi255 i really appreciate your support xxx BB.
It's a yes yes yes yes got to wait untill March or April but I can deal with that.
This distonia c**p will be dealt with and I will get my life back to how I want to live. The distonia can go and rot in hell as far as i am concerned.
BB.
Great news. Time will fly !
S
So pleased for you BB. You've been through so much to reach this decision and I'm thrilled you will finally get some normality back in your life. March and April will be round before you know it! My very best wishes to you. Sue x
Hi BB,
Read your Post and really wanted to say how pleased I am to hear your wonderful news. Hoping everything good happens for you in the future.
With very best wishes
Casie x
Hi BB
Fantastic news, I have an aunt who has had the operation and she is off all her tablets, she looks great and it has given her a chance to feel normal again.
You can now finally turn a corner.
Take Care
Beatrice xx
Great news bb .any q just private message me.so glad for you.and remember when you have it , it gets better and better the more you work with it.gus
Thank you all I really do appreciate your good wishes i will admit to being very scared as to getting the op done and also not having it done but will ultimately make myself face my fears head on as I know of no other way.
Love to you all,
BB xx
Well my op is only a few days away now i am booked in for March 7th to undergo the first part of the DBS they asked if i would agree to do some research by leaving the wires expossed then 2 or 3 dsys later they will finish the op and it will all be imbedded.
Cant say i am looking forward to it but i am looking forward to hopefully regaining control over this Distonia c***.
Especially as now it is getting worse.
BB X