One step closer

Had part two of the dbs surgery yesterday. In considerabley more pain than the first go around Thanking God for Percocet. Haven't slept this much since I was an infant

[shakingaj]

That was my experience as well. It eased off after 24 hours and a boatload of morphine. Best of luck for your recovery

[sharong]

You can do this x Sharon

[bigmama53]

Wishing you a speedy recovery.

[Jocee]

My very best wishes for a speedy recovery. I didn't know there was pain involved in this procedure.

[Kadie57]

The long term goal is giving you back your life, MY DBS surgery was 3 yrs ago this April 12th , Yes it was painful and yes it took time to get stuff just right, but I have never looked back, take one day at a time!! You can do this!! Best wishes the amazing life you will have.

[Sunnysky in reply to Kadie57]

Hi Kadie57 I wanted to ask you a little about your DBS surgery how long did you have PD before DBS and three years on has it slowed down you progression of this hideous disease sorry if you've already shared that info in the past if so maybe you could give me the link to it thanks Sunnysky

[Kadie57 in reply to Sunnysky]

I was so ill and the shaking started inside I never thought it was pd. Then I found out I had a severe lymes disease, it took 3 yrs to figure out the Parkinson disease due to bad nerve damage. I had infussions (IV) anitbotics for 1 -1/2 yrs 2 hours a day 4 days a week. Then I started shaking on the outside doing double time both ways, I had the DBS

stopped the shaking as it is designed to do, but the movement of the disease is still on the move. I take 480 sinement a month and 280 cr (time release) sinement a month plus use a 8 mg 24 hr Neupro Patch. which sounds bad but I was up to 1000 pills a month per each script, plus Mirapex which the Neupro patch replaced. Then enter a 9 hr awake surgery, almost 2 months med free and NO SHAKING !!! I still do not shake!! I have had Parkinson 12 yrs, been married 26 years April 23 rd. It is been an amazing ride.

[Sunnysky in reply to Kadie57]

Hi Kadie many thanks for sharing your experience that certainly was quite a ride so happy for you that you've had such a good outcome I was diagnosed 10 years ago and my main problem is Dyskenesia and braedyskesia (dont know how to spell that) which I believe will be helped by DBS it's a little scary to contemplate but your positive comments and those of our other fellow sufferers are encouraging my fullstory is on my site if your interested thanks again keep positive. Sunnysky

[Jwolfman614 in reply to Sunnysky]

Hi Kadie57,

Happy Anniversary last Sunday, April 23rd!

You have really been through hell with your PD, but it sounds like after your DBS, it appears things are going so much better for you.

My Neuro is wanting me to think about DBS as a future way to control my tremors, but I'm not there yet.

Unless my PT extends my therapy for my neck and scrambled brain, I'm coming to the end of all of my therapy sessions after 7 months from the time I fell and broke my neck.

I won't ever be able to drive again because I can't turn my neck far enough to drive safely. However, just as I've come to accept my PD, I'm accepting that. My wife drives my anywhere I need to go, without ever complaining.

After my PT, I'm planning to look into David Zid's "Ziddy's" Program for pwp, "Delay the Disease."

--John

[viva in reply to Kadie57]

Kadie57, I also would like to ask you the same questions as Sunnysky if you dont mind. thsnk you . viva

[jebbers]

Hope things get better soon. I was surprised to hear about the pain, was not aware of that aspect. I'm scheduled for the pre DBS evaluation next month and anticipate to have the surgery shortly thereafter. I've been looking at it as a breese.................am I incorrect?

[Gridless]

I'm going through the evaluation process too. I have heard from others that there was some pain involved, mostly from the frame used when attached to the skull for the procedure or the swelling that can occur after surgery. Was this your case too? However, everybody but one person said that they were glad they did it and would do it again if they had to go through it again.

[Kadie57 in reply to Gridless]

The halo used was super heavy and some pain, but the team of people had most pain under control, I was awake for the 9 hr surgery, which if I had a choice would not ever do again. I had some pain but it seems along ago thing, which would serve no purpose in scary anyone. As with any procedure there are good & bad, and progress from Patient in put which helps to evaluate and find better ways of doing DBS surgery. It was a small price to pay for the sheer excitement of being normal again, I haven't shook for 2 yrs now. !!

[Jwolfman614 in reply to Gridless]

Hi Gridless,

The decision for DBS is not one to be taken lightly, is it?

Did you come to prioritize what you wanted: stop tremors, improve speech, your gait, etc. I think that's what my wife and I will have to do should that time arrive.

I read on one of the postings about the head piece used to control any movement of your head during surgery and how you need to be awake during the procedure. Then I thought I read that the surgery normally takes three to four hours, but can take as much as nine hours that Kadie57 talks about. That sounds pretty serious to me!

How do people get through that, being awake for that length of time?

But, for now, I'm finishing my SP, OT, and PT and then I want to see if the "Delay the Disease" of David Zid's is right for me.

I don't know of anyone who has been through his DTD program, but I sure would like to talk to someone who has.

--John

[Gridless in reply to Jwolfman614]

Hi John,

You had replied to a posting of mine that was at least 3 years old.

I have already had my DBS surgery back in May of 2014. A lot of things have changed and improved with this this procedure since then. For one thing, they don't have to have you awake during the surgery. Also, my surgery procedure was almost completely pain free. I had my surgery done at UCSF in San Francisco.

The surgery helped most with the controlling my movements. It helped least with my freezing. Freezing is still a problem, but not as bad as it was before the surgery.

Yes, it is still a major surgery that should not be taken likely. That is hy it is important to talk your doctor ans discuss al your concerns before making this decision.

I'm sure like most people, brain surgery is a bit scary and the results can vary. However, I can tell you now that I am glad that I had the DBS procedure done. Even though the procedure is not a cure, it has improved my quality of life.

[rockemi1]

My DBS was in August of 08, and except for the first month or so have never regretted it. I had both sides done, 2 weeks later they put the signal generators in. I was so concerned about pain during the first surgery that I was caught off guard by the pain in the second! I travelled home the same day, which was a three hour drive, vomiting all the way home. The halo was heavy and painful but they managed the pain well.

FYI, I was diagnosed in 1992. At the time of surgery, I was taking 4 different meds 5 times a day (the usual, Sinemet, mirapex...). Now I take 2 meds once a day. No regrets.

[Pheonixalight]

For everyone who has PD & posts about their personal journeys - good & bad & inspirational - thank you all for honesty & help. It's truly wonderfull to have such a loving supportive group to turn too. And especial love to anyone doing the DBS journey - really wishing you a wonderfull outcome. Onwards & Upwards - Helen

[jonroberts]

I had DBS surgery almost 2 years ago. It was very successful. I did not have any pain that required pain Meds. It took about 4 months before I felt 100% energy. I was 59 at the time of DBS surgery.