DBS and me

[SuKas]

sukas-myworld.blogspot.com/...

[Karen3]

Thank you for this report. I just visited a neurosurgeon for

an evaluation I am concerned that I do not have family to help , among other things. Your account "tells it like it is".

[SuKas in reply to Karen3]

Yes it is like it is...I had not read something like this before I went in...Then again every one is different as they say. Please do have someone stay or look out for you. They send u home in 24 hours atleast here in the US. My symptoms were really bad that I appreciated my MIL's help. They don't switch it on until a month after...hope this helps and all the best u will be fine

[hanuman]

Hi, thanks for that. It's the first account I've either read or heard about which paints a realistic picture of what it's actually like to have the surgery. I saw the surgeon in April and finished the various assessments in August and am waiting for a date to go into hospital. I have had no information from anyone at the hospital about when that might be and have mixed feelings about finding out! It's such a daunting prospect having this surgery. I'd be interested to know from any people in the UK about how long they had to wait....I did email the nurse two weeks ago to see if she could find out for me, but haven't had a response....

So thanks for sharing your account. It hasn't made it any easier but it's good to be prepared and I wait with interest to hear how it goes when they switch you on....good luck!

[SuKas in reply to hanuman]

The key is to be prepared. Except for a few painful places it is not painful, just tiring. I am thin so got tired, but my surgery process took almost 8 hours...I have a video of my surgery on my youtube channel. Let me post it

[SuKas]

youtube.com/watch?v=1m2nJF5...(Not working as expected?)

[Hidden]

thank you for this. as i am contemplating doing this in 2014, i wondered if they shave your WHOLE head? also do they give you a sedative?

[SuKas in reply to Hidden]

;For me, yes they shaved the whole head as they are very careful about infections and no no sedatives for me....again diff doctors, diff rules all the very best

[Susie01]

Thank you for sharing. For anyone who is interested, there is a group on facebook for people who have had DBS. I have not had DBS myself but joined the site to help me decide if it is a treatment I would want to pursue.

[SuKas in reply to Susie01]

oh i shud check it out

[soup]

Here in the UK the different centres have different techniques. Not all carry out awake procedures and I would say it is essential to ask the team all the questions you need answering.

[SuKas in reply to soup]

absolutely would second that

[Jeanna]

Thank you for your report on your dbs surgery. I had mine in Jan., 2013. My experience was similar to yours in many ways, but I did not have my whole head shaved, just a tiny bit by the incisions. They put the halo ring on while I was sitting in a chair when I first reported to the clinic that morning. Then when I went to the OR they fastened the ring to the operating table. It was uncomfortable keeping my head still for so long. The anesthesiologist was able to give me a small amount of relaxing medication during the surgery. My surgery was to put both leads in the globus pallidus interna sites. The surgery took about 5 hours and I stayed in the hospital for one night and went home the next day less than 24 hour later. Then one week later they placed the neuro stimulator battery pack under general anesthesia and let me go home the same day. I was quite sore at the sites for quite a while. I appreciated having my husband around to help and support me at first. Now, 10 months later, I am still having adjustments to the settings about every 2-3 months. With my last appointment I was given the ability to increase or decrease the voltage by .2 points myself, and am still trying to figure out what works best. I find that the tremors I had are much diminished, almost gone, but I don't walk very well in the evenings when I am tired.

[SuKas in reply to Jeanna]

sounds very familiar...am still going thru adjustments...have not reached the optimum level yet

[Hidden]

There is also a great book "life with a battery operated brain" step by step account of a DBS surgery. Very informative. By Jackie hunt Christensen

[SuKas in reply to Hidden]

I shud check it out

[Sunnysky]

Fantastic reading Su you were very courageous and that twist of humour unreal much like the whole experience I'm considering DBS booked in for Sept but scared stiff don't know if I'll find the courage. How are you feeling now would you do it again Keep positive. Sunnysky

[SuKas in reply to Sunnysky]

Sorry for the delay in responding....hope you are doing fine after the surgery