Finally decided to go for it.....am petrified...I am going on August 13th for my orientation
DBS here i come....: Finally decided to go... - Cure Parkinson's
DBS here i come....
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SuKas
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I too am being processed for DBS. What are the prime symptoms that are expected to be controlled?
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.
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.
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
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.
Good luck SuKas,you will be so happy with the results.
Best of luck. I hope you get fantastic results!
ty very much...i hope so too
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
ty... i am scared but hopeful
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.
I feel sure we shall all be praying for a successful outcome
I wish you all the very best.
SuKas in reply to
oh ty so so much
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)
I GO TODAY TO SEE IF I QUIFIY......HOPE SO...
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
thank u....will do
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
Do you go off meds before op? Titrate?
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!
I'm gonna do the DBS is September. I know how you feel.
You will be so glad you did this..." believe me. Tough to go thru surgeries but well worth it in long run
thank u ...I am hoping that will be the case
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
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
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!!
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.
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, 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.
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.
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?
Sure I actually started a new post...my DBS evals are scheduled for Sept 10th
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.
Thank u so much need all the positive vibes..am looking forward to the after:))
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