DBS Coping with the op


#1

Hello.

I am reaching the stage where DBS is the next option.  My biggest fear is coping with the op.  I am told that I would be awake throughout and would have to come off meds.

My legs cramp dreadfully, toes curling and extensive restlessness to the extent that I cannot imagine being able to sit still long enough or to stand the pain for the duration of the op. 

My local hospital operates without a general anaesthetic, but I know that other sites dont.  Does anyone have experience of either and is there any benefit in not having a GA?

 

Any help or advice would be appreciated as I am very worried about this procedure.

 


#2

I'm fairly confident in saying that Southmead in Bristol UK only uses GA.  That was the case for my op, both for the targeting and the placing, which were completely without any pain.  Usual warnings of risk for GA.


#3

Thanks.

My concern is trying to manage my symptoms whilst off medication for the duration.

Has the operation helped you at all?   

 


#4

Bristol frenchay which is now southmead Bristol do deep brain stimulation operation when your totally asleep had mine done there 2012 woke up all done !. i think there is  another two hospitals that do the same.but Bristol is the leading Nero hospital for pd.you can choose which hospital you want,have you been assessed yet whether your suitable you can phone Bristol and have a chat with them they will advise you how to go about them doing the opp.hope this helps. look up dr alan whone he is also doing gdnf trails


#5

it has changed my life no more tremors or shaking ,took a while to get right settings but great!


#6

Thanks for your input.  I think I will take a leap and contact Bristol to see what they say.

 

Hope you continue to improve.


#7

yeh you wont regret it ! keep me posted ..good luck for the future


#8

Hi. Coming off meds isn't a problem, the staff know you will be useless. Have you tried less sugar in your diet to stop cramps? In any case, you will have those odd looking stockings on, and they will give you something.

At Salford they do the op using a gen anaesthetic, so I had a 3 hour hi res mri scan, also under an anaesthetic, and a paralysing drug,  it was great, just slept through it.

I liked having a GA for the main op, just dreamed and dreamed away. Had no problem waking up, although I still thought I was dreaming during my first and second family visits. (dreamt I died, it felt wonderful!)

The system using a GA is because of the bruising caused during the op, so the DBS is not turned on for a few weeks. The massive mri scan makes sure that they don't hit anything vital when they insert the electrodes.

For this method you are catheterised, which is done while you are asleep, so no problem there.

It was a revelation when they turned the unit on, the shaking just stopped,  magic!

Don't worry about a thing, it's pretty routine now, although it was new enough to do a video for Greys Anatomy, so the top of me head is famous!

The DBS gives about 70% improvement, and the control in my chest is no problem. I was very impressed that the could get the cable in without any cutting,

It was a very easy and pain free op. Now all we need is a stem cell cure, and we will live happily ever after. Den...

 


#9

hi mover & shaker, do they give you a dbs controller so you can adjust settings a little bit & also check battery life.ive heard some hospital do not let you have this , bristol does how long have you had dbs fitted did it take you a while to get right settings & meds right.i have now had mine for 3 yrs 5 months it was the best thhing i had done in bristol they have a hi-tec robot which postions wires and gets within 0.5m right place.


#10

Hi Gus. Yes, After a few weeks they set the DBS so I could adjust it, check batts, on & off etc. My DBS was switched on in Feb 2014. I'm not sure if I have the right settings yet, sometimes I think that there is no such thing as the right settings, & that goes for the DBS, meds, or lifestyle choices. It all seems to get harder. I'm glad you are having success with your DBS, were you awake during the op? can you set it yourself?  I like the idea of the hi-tec robot.

 


#11

yes i was totally asleep for the opp ,even asleep whe n they fitted head frame,you might find you right settings when they take you in for your first yr assesesment ,they take your all of  your meds about 6 o clock & then turn your dbs then the next morning you do all them test again,same ones when you first went in to qualify ,then start to put new settings in your dbs & give you small amount of meds bang! its like your all fixed ..but what a day.i think i messed about with my meds a bit more after that but i feel great now. my hands head & tremors all gone have a slight problem with my balance & walking but this is a trade off for having my hands arms tremor & no dsykinesa ,i can handle that,go out now & eat hold a drink,sleep with out fighting it.its a american robot im not to sure how much they said it cost 5 million made by reinshaw.also my nurse gives me a full amp on each side to mess around with,which is good as i kept on going back for re-settings,had to finish my job tho plumbing & heating as i was getting so tired & shaking come & gos. stayed in work with pd 6yrs so not a bad fight,started swimming steam room ,sauna a couple of months now & feel great.hope your ok your know when the settings & meds are right trust me !!!!!


#12

Thanks for the info Gus! Makes me feel a lot better, I think you are a bit of an inspiration. I find the fatigue is a real problem, and the pain, which is sort of all over. (I have my first session at the pain clinic tomorrow). I have had to give up my hobby (shooting), as my aim was getting embarrassing, the police were unexpectedley helpful and let me keep my firearms certificate for as long as I felt I could manage it, but in the end I didn't think I could protect my guns, pity, I had a nice ww2 collection. What do you do with your time? I tend to watch too much TV.

 


#13

yeh about the same too much tv,but the last two months me and the wife half joined a spa which is just across the road & i go my own sometimes found it really helps for the pain, ie sauna steam rm & swim ,i take 8 + tramadol ,9 + gabapentin 8 + paracetomol 3 + diclofenic and 3 + amitripyline which all help the nerve pain.1 + zopiclone to help  me sleep also the amitripyline help you sleep as well.these all help for nerve pain.also have reg bilet lumber injections for my back ,but must say since i been to the spa my back as ease off ! i take 4 - 125mg sinemet plus & 3 - 62.5mg sinemet also take 250mg sinemet cr slow release at bedtime to help me move & bed lever fitted by ot as i pulled my tendons in my shoulder was using my elbows to move around ,bit like my 15yr old Labrador stiff in morning but get some speed up after 10s. i used to be a beater when i was a lad & they used to let us have a shoot end season nearly shot a silver or white peasant they said it would have cost 200 ,300 pound if i got it ! also had car licence taking away 3 weeks ago due to the amount meds on.swapped from co-codomol to tramadol as gp reckons got immune to them as been on them for 8 yrs.safe tho ! got disabled bus pass now also save 250 a month as they took back disability car .wife still works so put that money away for nice holiday gives her something to look forward too now ! first year not had holiday but sun was good this year down at sunny weymouth.you must make sure you excise even walk to the shop to get a paper.its true it really helps !


#14

Hi Gus. Just got back from the Salford Royal Pain clinic. I thought it would be routine, but it lasted all day. It seems they don't know much about Parkinson's pain, so they hooked my up to a lot of machines and gave me electric shocks. I am now one of the chosen few to be enrolled into a new research program, It turns out that something is abnormal in the data, so I am due for another load of sessions. Hope they can stop the pain.

I take your point about excercise, I've bought a nice mountain bike, and put a big trampoline in the garden. I'm sorry to hear they took your licence, so I asked the doc about the meds, he says there is nothing in the new prescriptions that will put me at risk. (although it is a great saving!). What is Sinemet for?


#15

well thats a good thing they were interested in you,thats good the mountain bike not so keen on trampoline eek,! sinemet is a parkinsons drug.hows things going with the dbs,don't be scared to phone up & get them to alter your settings thing i went back about 6 times in the first year  ,i found sometimes they'd re tune me and i would feel great then i get home ,next day not so good again ,so i ask if i could stay overnight & they were fine about it. hope things are all right your end!


#16

I think you're right. I'm staggering along with all sorts of problems, and been just too poorly to tell anyone. I'll make a list and see if I can get a tune up.


#17

hope it goes well it does take time ! keep your chin up.


#18

Thanks for the advice.

Sounds like a general is the way forward. 

I am still working after 10 years - incredibly tired all the time, but still working.  Wish I could retire but I am only 54 and wont get any pensions till 60 (and thats only a small one) and my state pensiion at 67.  Looks like I will have to keep going for some time yet.

Will try the tip about less sugar - dont eat an awful lot at the moment unless this includes natural sugars like in fruit (which I eat tons of).

Glad to hear you are both so much better after the op and long may it continue


#19

The doctor informed me at my last appointment at the National that I was on so much medication, that there were no more options to help me feel better other than changing it around but I could be a good candidate for DBS.   I was horrified at first but the doctor went through everything I was frightened about and allayed my fears.  We are meeting next month to decide what to do.  My greatest fear is how they are going to get me into the hospital to do the operation in the first place.   Is there anyone on this site who could tell me about their experience of DBS good or bad please?  thanks

 


#20

best thing i had done ! my fears were a bit like yours but when i was told they do the whole opp with me asleep all my fears went this was at bristol frenchay hospital you can phone them to discuss dbs,you have the option where to go, & bristol are one of the leading hospitals they have invested in dbs alot.if and when your successful to be approved for the opp,do not get to disappointed if it is not as good as you were excepting as it takes a while to get settings & meds right .it took me about 18months .no more tremors shaking dyskinsia! just my walking a bit unsteady but feel 100% better.