DBS here i come....

[SuKas]

Finally decided to go for it.....am petrified...I am going on August 13th for my orientation

[etterus]

I too am being processed for DBS. What are the prime symptoms that are expected to be controlled?

[SuKas in reply to etterus]

as far as i know, tremors, jitters etc

[debbie66 in reply to etterus]

The main symptoms that are controlled are tremors,sticky feet.and a reduction in the amount of meds you will take.

My husband had DBS done in 2004 and he had dyskinesias 24/7 ,they were gone as soon as he was switched on ,which was straight after the op.

There are some disadvantages but not for everyone,my husband suffered more falls and speech problems but there are a lot of things that can be done to make them better.

Good luck for when you have the DBS done.

[SuKas in reply to debbie66]

thanks u so much for ur reply

[moonswife in reply to debbie66]

My husbands response was nearly identical. I have an assumption he has more falls because he is more confident now and tries EVERYTHING. He would never have gone on a ladder before DBS, now argues with me since he is not shaking.........why not? Biggest change is his voice is more whispery. He was never misled to think dystonia was not coming some day, and it has, but until a cure that is the natural progression unfortunately.

[mazpar in reply to etterus]

hi depending on how bad your symotoms are depends on how much relief you'll get ifound it 80% effective but i was at my worst basicaly couldnt walk prop, uncontrolable tremor dysxcarnesia, all gone still after 4 years. youll be fine, i looked at it was my 2nd chance at life

[littleoldasianlady in reply to etterus]

the tremor and the rigidity and it might reduce the amount of PD medication you're taking. But it won't help the speech and memory problems.

[debbie66]

Good luck SuKas,you will be so happy with the results.

[SuKas in reply to debbie66]

ty for ur wishes

[wifeofparky]

Best of luck. I hope you get fantastic results!

[SuKas in reply to wifeofparky]

ty very much...i hope so too

[goose63058]

Good luck to you .I had it done in 2010 without thr results antisipated. You'll be surpsised athow well you'll feel after such an evacive procedure

[SuKas in reply to goose63058]

ty... i am scared but hopeful

[Jash]

Good luck; had mine on June 15. The surgery part is scary, but not as bad as I feared. I'm still in the adjustment phase with the stimulator. I expected the tremor to be gone, but that's not the case yet as I apparently have a low tolerance for electrical frequency. overall, I can do more now than before, but have an intermittent tremor. My neuro says that I shouldn't make any judgments for 6 months. Overall, it is an improvement.

[SuKas in reply to Jash]

yes that si going to be the interesting part...I do not do well wit med changes and this is on a whole new level...keeping my faith...

[Hidden]

I feel sure we shall all be praying for a successful outcome

I wish you all the very best.

[SuKas in reply to Hidden]

oh ty so so much

[Kadie57]

Don't be so afrraid that fear is bad for your PD and your over all expectations, I had the DBS implants both sides April10 and I was AWAKE for surgery. This was the hardest surgery I have every been thru BUT the results are most amazing and was imediate. Not to shake inside and outside which I had did for 9 years--- it was total gone just from having the affected areas touched.

It will still be a long road while the implants are adjusted and your meds, the hardest part was to regulate everything to work together, MY advice is don't excpetion to much to fast, this is brain surgery, while you will be better, you will still have bad days, but you must not be so afraid I feel God brought me this far he will bring me thru it all. So hang on you are going to amazed. I also opted for the rechargeable battery saving myself 2 surgeries to replacce batteries. KADIE

( I have been haing problems with this site it keeps teling me I need to sign up to uss the boards, but I have been a member for a few months so sometimes I can write and some times I can even get in the site)

[SuKas in reply to Kadie57]

ty so much for sharing...means a lot to me.....i will be strong...I will, I can cos I am

[BILLYRAY]

I GO TODAY TO SEE IF I QUIFIY......HOPE SO...

[SuKas in reply to BILLYRAY]

oh all the very best...will be thinking and praying for u

[BILLYRAY in reply to SuKas]

thanks

[Sadiesadie]

Good luck to you that are having DBS!!! As you know I had it and it has made all the difference on the world!! Just keep your expectations realistic and be patient! It may take a while to work out your meds after surgery. But it is worth it!! I had it done twice (long story) on the left side and I would do it again!!!

Love, SadieSadie

[BILLYRAY in reply to Sadiesadie]

>

thanks

[SuKas in reply to Sadiesadie]

thank u....will do

[Sadiesadie]

Good luck to you that are having DBS!!! As you know I had it and it has made all the difference on the world!! Just keep your expectations realistic and be patient! It may take a while to work out your meds after surgery. But it is worth it!! I had it done twice (long story) on the left side and I would do it again!!!

Love, SadieSadie

[PatV]

Do you go off meds before op? Titrate?

[LauraL]

I had DBS three and 1/2 years ago and plan to do it again if the need for the other side becomes an issue. The turning point for me was when I had my first grandchild and I could not feed them because my hand shook so bad and if I changed arms I could hold the bottle but I was afraid I was going to shake the baby so hard it would cause brain damage.

I went off meds the night before surgery, checked into the hospital at 5 am, and went home at 8am the next morning. Two weeks later my implant was inserted as an out patient. I haven't seen the surgeon since and see my neurologist every 6 months to touch my nose, flex my fingers, and walk for her. Don't worry- you will be happy. And yes you will be awake when they are placing the leads in but I didn't feel a thing!

[BILLYRAY in reply to LauraL]

great

[MichaelOM]

I'm gonna do the DBS is September. I know how you feel.

[SuKas in reply to MichaelOM]

all the very best to u

[FifteenyearsPD]

You will be so glad you did this..." believe me. Tough to go thru surgeries but well worth it in long run

[SuKas in reply to FifteenyearsPD]

thank u ...I am hoping that will be the case

[Jash]

Best to you; I know you'll do well too. They keep reminding me, it's a process. Trust your docs and visualize you best outcome

[SuKas in reply to Jash]

thank u will do

[BILLYRAY]

weii more test.....got to make sure it is pd..and not parkinism////what a pain....got to do it wil know gy oct 31

[SuKas in reply to BILLYRAY]

ohhh...that is a bummer....what kind of test is this? I had a FDopa scan at my expense as insurance did not pay, in 2007, which unfortunately confirmed PD for me

[Alley]

I wish you everything of the best, just think!! You could feel like your old self again, we will count the days off with you and think of you every step of the way!!

Best of luck!!

[SuKas in reply to Alley]

thank u so much

[chomps44]

I had the DBS done in 2008, would I do it again, in a heartbeat. Tho not all things are perfect, I still have some tremors but I can deal with that small price to pay from where I was. My worst days I was in a wheel chair, Lets just say I never want to go back there. The only dissappointing thing that hit me and it was no ones fault but my own is that I expected to be back to my old self. That was a major set back for me, but no matter what anybody told me that was what I expected. 100% nothing less. that doesn't happen at least with me and now I'm ok with that because I now know God has given me a 2nd chance at life. The night before surgery and the morning of the surgery I was very calm, I wasn't nervous at all I knew I was in God's hands. Dont be afraid of the surgery, look at it as a new beginning one that will take time to get adjusted to and you to get adjusted. Be patient and enjoy the improvements that you will notice right awyay. Will be thinking of you and sending my prayers t you. you will be fine.

[chomps44]

oh I forgot to add, being female I decided that I was not going to have a comb over with my hair, so I decided to have my all my hair cut off. the only downfall to that was i was having my surgery in november a little chilly, but let me tell you shampooing was a breeze. let alone you can wear really cool hats, and plus how many chances do you get to see what you head really looks like, and then the hair grows back. Just thought I would add this info for any women who are having the surgery.

[SuKas in reply to chomps44]

:)) Thanks so much for sharing I will be sporting a bald look too as my doc likes a clean shaven head..I go on September 11th for my DBS evals

[cowmom27]

Sukas, well its been 11 days since your surgery............hope all went well for you. Anxious to hear if DBS was effective for you. To all who posted having had the procedure---really admire your courage...........I'm sure if my symptoms were enough to indicate a need for DBS I would draw strength from your support just as Sukas Thanks for sharing.

[SuKas in reply to cowmom27]

Hi My surgery has yet to be scheduled...I attended the orientation and am going on September 10th for my DBS evals...Hope they go through well..i am still really scared...but psyching myself to be strong

[chomps44]

Hi Sukas, lease don't be scared put all your faith in God, that is what I did, I knew that once I did that I was not scared or nervous. IThat was an amazing feeling. The one nice advantage I had tho that apparently not many others have had the experience is that my surgeon had developed a new proedure. I did not have that halo , my surgeon with the help of a couple of others had devised a smaller version that was alot lighter plus I was not awake except for a couple of times where they woke me up.to make sure they put the leads in the right sot and then I was right back out. Will be thinking of you and sending prayers to you. You will be fine.

[SuKas in reply to chomps44]

Thank u bunches Mostly I have made peace with my decision so I shud be ok:)... Hmm as for the halo....wud be interesting...

[FifteenyearsPD]

be sure that you post after you have DBS - want to hear how it went and what results were and if they were similar to mine?

[SuKas in reply to FifteenyearsPD]

Sure I actually started a new post...my DBS evals are scheduled for Sept 10th

[goose63058]

Good luck to you, I'll be croossing my fingers for you and sending positive energy your way !. You'll b e surprised at how well youll feel afterward, so be careful you dont over dew it. Best wishes again.

[SuKas in reply to goose63058]

Thank u so much need all the positive vibes..am looking forward to the after:))