Hi - I am also heading towards the man with the black & decker drill and jump leads. My DBS will be done in Queen Square in London where as far as i know you stay awake. I'm assuming (hoping) they give you something to make you a bit happy! Does anyone know if they do or not? Any experiences of DBS here?
thanks
Hi Casie
I understand your concerns. I have been assessed for DBS and am now having my pre-op assessment next week followed by an MRI scan under general anaesthetic on Sep 11th. Then comes the Op which will be carried out while I am awake. I am very scared, but I phoned the PD org and they have put me in touch with a person who has gone through the same experience at the same hospital.I think it really helps to know what to expect.
Hi Shaken - Just saw your post after I posted reply to Casie. Like I said to her , phone the PD help desk and ask if you can be put in contact with someone who has experienced the same Op. I was hoping for the same thing as you, something to 'help me feel a bit happy' , but I don't think they do. Do you know when your Op might take place ?. Best wishes for the Op, maybe we can compare notes afterwards.
Hi angel,
Im hoping before the end of the year. What about you? Are you going to Queen Square? Will be happy to compare notes! Hope it goes well for you.
Hi shaken
Like you I think it will be pretty soon as I am having pre-op assessment next week and MRI In September.
I am having my Op at the John Radcliffe Hospital in Oxford. Will keep in touch.
i have had dbs for 2yrs 6months i was totally asleep for the whole operation at bristol frenchay hospital they have a robot that gets the wires within 0.5mm .i must say im really impressed with the change of lifeit has made for me,
I'm not going to worry about what they have to do during the op because the doctor I saw assured me that I would be asleep. It's just everything else!
hi casie did you go back to page 2.
hI, I don't know whether I'm writing to everyone but I wanted to thank Gus for his comments. Really helpful. I have an app soon at the National and we'll go from there.
thanks for the kind words casie ! need a talk i will be here keep up the fight & all the best ...
Hi Casie
I had bilateral thalamic DBS a couple of weeks ago at the John Radcliffe Hospital in Oxford. I’m having the stitches out tomorrow. I was conscious for the first part of the operation. The medical staff were absolutely fantastic – I was particularly impressed that the surgical team came up to the ward to see how I was when I regained consciousness. The first week following the op. was brilliant: a bad tremor almost completely gone, and I could hold a drink and write legibly for the first time in two years. My ‘off’ periods were much more like ‘on’ periods to the extent that I forgot to take my Sinemet on several occasions. However, I was warned that the system needs a few weeks to settle down and I’m looking forward to being ’tuned up’ next week. This is an absolute life-saver for us, as my wife has primary progressive m.s., and I am her sole carer.
From my experience so far – no regrets at all!
Trev
great news trev
Hi trev, I am pleased your surgery went well at the John Radcliffe. I am having DBS at the end of October at John Radcliffe. I hope the switching on goes well for you.
i am planning to have the 9 year rechargeable battery. I am concerned that if I put weight on after DBS, the charging of the battery might be less effective.
Hi Jem
I have the rechargeable battery, and it's fine - at the moment I am charging it for 10-15 minutes a day to allow the wounds to heal. But as with all aspects of the procedure your consultants will advise you what will be most suitable for you.
Good luck with your DBS. I'm sure it will go well. You're in very good hands at the JR.
Best wishes
Trev
Hi everyone , i had dbs a year ago at the queen elizabeth in birmingham , like gus i was asleep for the entire procedure . i went into hospital on the friday and was home by sunday afternoon,a wonderful parkinsons nurse based at the hospital helped me so much. for the first few days i was very sleepy , then i felt great for about 2 weeks , then i began to fall over , walk into walls and felt very confused.this was my brain settling down so i was told . the morning i was 'switched on' was amazing , this happens about 6 weeks after the op allowing swelling of the brain to settle down. you have to be completely off meds, so took last meds the night before. boy! did my husband have trouble getting me from the car into the hospital but once i was switched on ,it was amazing , no tremor or jerking and no walking stick . it hasnt been easy i have had some rough days but a year on i can say i am happy i had dbs my future looks brighter now , we are still trying to get the meds right butb i feel good . i have posted 3 poems about dbs and me , they explain how i felt .
Sorry to be writing on a Saturday evening.
A few years ago, I would be out with my husband, meeting friends or entertaining but now everything seems to depend on what is going to be said at my app. re DBS next week. The worry my husband is going through is equal to my own and his stress is showing by needing to go to sleep for the night at 8:30 to 9.00pm.and being grumpy during the day, constantly complaining about this and that.
It's very hard to consider other people at a time like this but it's got to be done. Many people must go through this but I'm really lucky to have him to be there for me.
Have a good night.
Carie
Hi Trev
How are you doing now ?. Hope everything is going to plan. I am having DBS soon at the JR and wonder if I could ask you a couple of questions.You said you were awake for the first part, did you not have a light sedative to help fell relaxed ?.Did you have the stimulator put in at the same time, or later as a separate op.How long did you stay in hospital ?. Sorry about all the questions, I did try and send you a private message , but I see you don't accept them.
Hi Angel 1533
Sorry about that. I have changed my forum preferences now. Please message me and I'll tell you what I can.
Best wishes
Trev
Hi everyone. I've taken so long to say anything because after my appointment with the Prof two weeks ago, I was in shock. He told me that the doctor I had seen last time had no right to say to me that I should have DBS.
This doctor's speciality was surgery but I think my Prof must have told him to keep away from me.
I couldn't believe that I'd gone through all that anguish over two months for nothing. He said he wasn't anywhere near recommending me for surgery but would do so if he thought it would help me
I did find out that some people I've never met before could be so kind to me and supportive so thanks to you.
With best wishes
Carie
very kind words so your not getting referred now for dbs how do you feel about this !
