Dbs surgery


#1
Hello all my brothers and sisters in arms there are those of you out there that i have helped deal with their diagnoses or symptoms or just been there as a sounding board when needed. I need to tell you all i have been offered DBS this is because my B**** is proving to be quite aggressive, and on top of the PD i have Distonia which of course is behaving like a two faced b**** and has to be partically aggressive. Also my stage has changed from stage 2.5 to 3.5 , and even though i suspected as much it still was a massive smack in the mouth. I have asked if i can proceed with the op in London at queens sq. The only problem so far we may face is if the Lincolnshire health authority might refuse the funds to pay for it. I have decided to tell you all because i consider you all friends and thst is not a title i give away lightly. I will admit to being scared beyond belief the very thought of brain surgery is my most least likley chosen subject. We have all propped each other up At some stage or other. So i feel we have a distinct link and that is why i am going to ask a favor of you all. When i recieve the details in regards to the place that will do the DBS I ask one small favor think of me and just wish me well i request this because of my fear. And then i honestly believe that we are surounded by those we have loved and lost to death. For me it is mum 49 dad 62 (passed away in my arms) and pops (grandad) 85ish. I know PD cannot put me in my grave but i am scared now and even though i have agreed to it i feel with my progression now my choices are becoming fewer and fewer. Thankyou Gus for your insight and thankyou to those whom have shown me kindness through this forum .As soon as i have a date time and place i will post the details so if i disappear for a while please dont fret Karen will come back and also Karen will regaine control of her body sole and mind.because this B**** we have in commen must NEVER EVER be aloud to win. I will kick her back into touch xxxxxxxx

#2

Hi bb 

  Sorry to hear you've got so much worse so quickly , I'm sending you a big  hug to repay the one you sent me when I got my LBD  dx (((((bettyblue hug)))))  platonically of course. LOL.

I will keep a candle burning in the window of my soul for you so stay strong and good luck x

   Cc


#3
Thankyou cc i do really appreciate it i will always keep you in my heart no matter what happens to both of us xx

#4

 

All the best BB


But i don't believe choices are fewer & fewer, they might be slow comming along but not fewer,In the time since i was diagnosed lots of things have been announced in leads to new treatments with stem cells just yesterday, we are waiting patiently for the release of others. what we have today in technology and the way it is done might seem old hat and obsolete like VHS video tapes in 5 -10 yrs.


#5

your be fine ,your a tough cookie ,as for the stem cells when the time comes you can have the dbs removed i have looked into that already & hope for us all the sooner the better ! and i hope bb you will be letting me know how fantastic dbs goes for you just think off the results you will get from it ,it may take a while for them to take affect so dont feel it was a waste of while & your have my number if you need advice on working dbs & meds ! when i had mine done they had me up & about the next day ! i remember shuffling to the bathroom looking in mirror ! ET came to mind ,i was let out after 3 days also remember the motorway services & everybody staring at my head for some reason i felt proud of myself ! also i should mention you will feel great for a couple weeks something to do with the swelling on the brain! i got married two weeks after my opp & felt great ! so hope you get the funding sure you will ! all the best gus your friend x


#6

Dear BB, Cheshire Cat, Sea Angler and Gus and of course, every one else that is interested about DBS,

BB - you have really made me ashamed of myself because it's always about me when I'm feeling bad.  I really have all the symptoms you have and they are very bad but I never remember that others are suffering just as much as me.

It would be an honour to call myself your friend and that goes for everyone that has been so kind to me over the last couple of years.  I finally received  my letter offering me my first appointment with the neurosurgeons which is on 5th May. so watch this 'space'

Love

Casie

 

 

 


#7
casie that was not my intention i have always found you to be helpful to me and others on this forum that is why we are all here to help others and ultimately ourselves because if we dont help us then we are not qualifed to help others are we. At the end of the day no one including our medical team can know what this c*** feels like more than us can they. I wish you the vert best of luck with your pending DBS i will be thinking of you and i am proud to call you my friend lots of love BB otherwise know as fistey xxx

#8
Thankyou gus you are a great guy i know that even though we have not actually met. Your friend BB xc

#9

Hi Bettyblue,

Hope you have no fog this morning, glad to say it's lifted where i live. 

I'm so sorry but I wasn't trying to give you more grief.  I am trying to say that I admired what you said and shall try to keep my pecker up when feeling "off".

I go to a day centre twice weekly and that always makes me laugh. It's because I'm the youngest there as everyone else is at least 20 years older than me. I find that if you listen to these people, they have lived very interesting Iives.  Take  Sid for instance. He is 95 now but when he was young, he was a boxer and in later life, he  was a very well respected referee. He  refereed fights in this country and in the USA, , working with people like Mohammed Ali.  

Even some of the volunteers are older than me! They all have hearing aids but still can't hear me because I have a quiet voice due to the PD and as loud as I try to speak, they still can't  understand me!  I spend my time there doing my painting, although I could join with the discussion group, play cards or join the choir AND do keep fit!.  We buy lunch and they have a professional entertainer in the afternoon.  It also gives my husband a chance to go to play Bowls.which he has recently taken up.

Anyway keep as well as you can and look foreword to speaking to you again.

with best wishes

Casie

 

 


#10

Chin up, BB...you are a strong lady and will overcome this obstacle like all the others!

Your many friends will be thinking of you and wishing you well and I will be "praying" for you in my humanist fashion.

Love

GG


#11

hi bb, have they put in for funding for the first stage of you dbs assessment this normally happens quite quick  week or two.


#12
No not yet my specialist has been away this week parky nurse will see him next week to get ball rolling i will let you know xx Thankyou gg your support means a lot to me. Xx

#13

Mornin bettyblue,, just want to pass on my best wishes on hope that u stay strong, positive, an determined about not letting PD win. i think that i also have a strong and determined mind set but i have to say having PD and all that goes with it is my biggest challenge in life yet. my consultant says she has 2 yrs of adjusting with my meds before she can  apply for DBS so in the mean time symptoms are taking it in turns, no two days are the same mainly dystonia. just awaiting for APO-go pen. Anyway good luck hope all goes well.. keep strong..

Ollybex

 


#14

Thanx ollybex yes i agree PD can prove to be extremely challenging it has caused me more upset in my life of late that two ex husbands whom were both control freaks and i kicked both of them into touch so as far as i am concerned this is no different.

 

I thank you for your good wishes and I hope we all get to where we would wish to be in-spite of this condition.

BB XX


#15

Hi BB,

Just read your posts and replies from others. I nearly emailed you yesterday, as I thought you'd been rather quiet lately.....now I know why! Yes, it's a terrifying thought, having brain surgery, but knowing you, you'll ask all the right questions and find out everything there is to know about the procedure, before you let them touch you. Strangely enough I was reading all about DBS at 5am. this morning.......you must have telepathically contacted my brain! The results sound really amazing, once they have it all set to your personals needs. Will your sister or someone else in the family be able to go with you? If not, I will offer to come and hold your hand. I know you're just at the beginning of this and won't have any dates or anything, but please let me know if you need me. Keep fighting and keep positive. It could open up a whole new way of life for you and Colin.

Much love,  Twinks. x

 


#16

Best of luck BB.

S


#17

BB 

The refinements made over the years will minimise any operational risks.  Have you reviewed the impact on driving.  Any brain surgery triggers the DVLA to start their machinations.  There should be a typical length of time that the surgical team suggest you don't drive.  For me it was 30 days after my GDNF surgery,  For DBS it may be until the DBS team get the settings right.

Best wishes

K


#18
Thanks twinks i just might take you up on your offer. Xx Hi kendo as i dont drive only my hubby colin up the wall it is not an issue for me. But thankyou anyway. Sincerely BB.XX

#19

Hi Betty blue

Read your post this morning. Am now under care at Queens Square and think they are amazing and will really look after you. I didn't,t feel anyone else had believed a word I told them until after a strop with my neurologist at local hospital he sent me up there. They are amazing caring people. 

As are you. Since starting on this forum , I have read a lot of your posts and your determination not to let the bad times take over is asn inspiration and has helped me feel more positive. You deserve a good outcome. Will think of you.


#20

If you see Prof. Warner, he is really nice. I can't remember a word he said but he made me feel really safe. Hoping for the best for you