DBS Scheduled: Ask me anything!
 

A lurker until now, I thought it might be helpful to the broader community for me to share information about my journey. Not entirely altruistic as I hope that I benefit as well.

Background- 56 yo male with diagnosis in 2010. Symptoms presented as a persistent tremor in 4th and 5th digit of right hand. Fast forward to today with bilateral tremors, both hands/arms. No other motor symptoms. No changes in cognition, ambulation, etc. Still drive and work full time.

Have in my stable a fellowship trained movement disorders neurologist (Gainesville, Fl) partnered with a neurosurgeon with substantial credentials in DBS. I trust their counsel and they listen to my input.

Currently taking Sinemet 25-100 2 1/2 tablets every four hours. 1 mg Mirapex twice daily. Generally good response to Sinemet but looking for greater tremor control.

Have had a full workup including speech, PT, OT, Neuropsychology, and psychiatry. MRI yesterday and surgery scheduled for Friday, January 3rd.

Will have bilateral insertion of electrodes with an anticipated surgery time of 4 to 5 hours. An overnight stay in the hospital and then discharge the next day.

Scheduled return one week later for outpatient placement of a Medtronics generator on the left chest wall (I hunt and the surgeon is happy to place it where it will not interfere with shooting a rifle- a frequent request, he says, here in Michigan).

I have great insurance, a strong social and family network. I am scared (to be expected), but like many here, it is the impact on my family that is of greatest concern.

Ask any questions that you my have. And share any persecutive that you wish.

Jeff:)

Better Shooting !!
 

Hi Sigster ,I've been lurking for the most part to !! Good luck for your op, the people I've seen who have had it done have had really good results .I am in early stages of PD, it is interesting to see how you get on with the shooting I find that I shake on holding the rifle but steady for the important moment of taking the shot when mind focuses on target .Perhaps you will be an even better shot !!!

hi
 

Hi Jeff,
Sounds like you are all set for DBS. I just had DBS a month ago and it was not as bad as I had imagined. The worst part was going off meds a day before surgery. My family was supportive and helped thru the process. I recovered from first surgery within three days, didnot feel much pain. Second surgery was more painful, but pain killers were there to make me sleep thru the night. Overall, it was not bad at all......

Hope this helps.
Good luck and hope DBS helps you get bACK to your life.

Girija

I had DBS on Dec 5. I too had bilateral stimulators put in. I had them turned on dec. 19. I had an adjustment on Dec. 31. I feel good, alot less tremor and dyskinesia. I freeze and fall alot more than before surgery. My neuro said that is still my body reacting to surgery. He said to give it time and it should get better, I hope. I feel last night and landed on my butt. My back is taking the beating.
All ion all was a good, but frightening surgery. Hope yours goes well.

Thanks folks. My wife and I are counting down the hours. I have to arrive at 0530 tomorrow. Its good to hear from others that have had the surgery. It really helps!:hug:

Hi Jeff, hope all goes well and you achieve the results your looking for. Im a 42 year old male, diagnosed in 2011. Currently taking 2 25/100 sinemet every 3 hours, 8m requip, 1m azilect. My mds has mentioned dbs to me but says its usually reserved for 5 to 6 years into diagnosis. Unlike your symptoms, I have some tremor, but mostly motor complications, bradykinesia, stiffness, lack of mobility. I wonder if anyone could shed light on whether dbs is or has been as effective for this set of symptoms. I have asked mds this but I would really like to hear the opinions of people who have actually had the procedure. Again Jeff good luck

Hi Jeff,

I had DBS only on the left side a year and a half ago. It's not nearly as bad as your mind makes it out to be. I got along fine and it has made a huge difference in my quality of life. I hope all goes well and you have as much success as I have had with it. I too am a hunter and couldn't be happier with the placement of the generator unit. No problems at all shooting.

Well, I survived. The halo was the most painful part. thanks all for helping me with the procedure.

:grouphug:

How are you doing? I agree, the halo was the most frightening part for me also.
I couldn't believe I was actually doing it. I think I went into auto control just to make it thru.
It took about 4 weeks before my balance got better. I must've fallen once a day. Now I am in the middle of the programming. I am on 1 volt and have cut out my carbo levadopa. My dyskinesia and tremors are almost gone.

I hope things are going well with you. It will get better.

balance?
 

Is your balance better than it was after the surgery, when you said you were falling more, or better than it was before the surgery? I've always been told DBS does not help with balance or gait or non-tremor issues, but if you had those before DBS and don't have them after DBS and cut out your sinemet, then it sounds like it can/does help with those issues?

General anaesthesia
 

Apparently you can now have the surgery while under general anaesthesia. Did you have that option?

http://www.digitaljournal.com/pr/1671327

balance
 

My balance is worse than before surgery. The doctor said it is probably just the body reacting to surgery and will get better on it's own. It has gotten better but I am off balance at night still. I hope it does eventually go away.
You are right, dbs is not supposed to help with balance.

On Thursday, approximately three weeks post operative, I developed at DVT in the left leg that spawned two PEs that migrated to my lungs. So, I have been inpatient for six days getting a therapeutic level of Heparin. It felt like I was breathing for five people. Another day, I'd be dead...

Being a recent brain surgery person, the docs did not want to dissolve the clots using TPA as they were afraid of hemorrhage.

Sooo, still sitting here getting adjusted to oral Heparin while still getting the IV stuff that saved my life.

Good news is that I have enjoyed a prolonged honeymoon period that keeps me optimistic!
:)

Sorry to read of your complication
 

Hope you heal soon. Keep flapping your feet back and forth while in bed. madelyn

DBS bilateral STN
 

Well I had bilateral STN three months ago. Now my balance is much better, bradykinesia is gone and tremors on both sides are also gone. Any medication containing dopamine belongs to the past. The most painful and frightening part of the procedure was when the headframe was placed. I would say it is worth going through the procedure. The quality of life has improved considerably. You have to give at least a month to the programming team to increase the voltage gradually and decrease the medication. Good luck.

Agree! The head frame was a bit scary but not so I would have chosen NOT to undergo the procedure.

First programming and I already feel better. Tremors are gone.