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Oakman

Oakman's DBS Adventure

36 posts in this topic

Well went to my first programming 10/14.

My fault but I did not eat all day because I didn't want to cramped up which is what I do.

So since I was so off the programmer did the best she could.

I am starting out at 1.0 on both sides.

I was told to keep my same Sinemet which is 3 tablets, every 2 hours, and that I will probably have dyskinesia and give her a call on the weekend.

 

Well Friday, Saturday, and Sunday I had bad panic attacks. I don't know what caused that, but Sunday felt too tingly so called her and she has me taking 2 1/2 tablets every 2 hours. But Sunday evening I was so exhausted and don't know why.

 

She said if I am too off, she will raise the stim.

 

So now I sit here worrying about another panic attack. And I can't really tell you what the DBS is doing for me.

 

I know it's only day 3 and my worrying isn't helping but let's see where this leads.

 

Mike

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Thanks for the update!  I may be soon behind you with a DBS, so this is very helpful.  I hope you can relax and get the right adjustments. 

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Not to happy to report this, but I'm at 1.4 and see no improvement. Meds went from 3 to 2.5 pills every 2 hrs.

My balance and walking have become terrible and this is getting scary.

 

Mike

yea it's still early but I am scared.

 

 

Does anyone know if turning off the stim would bring my legs back?

 

:cry:

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Mike, the only thing I can suggest is to be patient. Your body is still healing. 

 

Does your programmer have Group settings? I've had three program sessions, and one or two Group settings each month had negative effects for me. I was told to try a Group for 1-2 weeks, but if it was really uncomfortable I should change Groups immediately. Also, if I was unsure about the program causing a certain effect, to turn off the stimulator and see if it stops. I have one now that gives me body aches and tiredness, which disappears within seconds after turning off the stimulator.

 

BTW, I'm at 2.3V, but don't think that means anything in your case. My first setting was at 2V. Also, all of the Group settings I started with have been changed in my case. 

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Oakman,

 

I really appreciate your concern. I left the first session with 1.0 and later the following week she told us to set both sides to 1.4.  As soon as we did, I got a little panicky and asked if we could go to 1.2 first then up to 1.4 later. No other numbers have been mentioned. I go back 11/8 unless she gives me a call.

 

I believe she is trying to get me dyskenetic so I can reduce my pills.

I am still healing, I cannot feel the top of my head yet when  I scratch so I am still not healed.

I had 2 good honeymoon days, and then I caught pneumonia.

So I probably have some more increases to get things going, but she is probably going slow.

 

I probably am not showing a lot of improvement because I didn't have tremors which seems to improve the most. I freeze up and my stomach cramps up and I shuffle my feet.

 

Maybe I read too many success stories and thought this was plug and play.

 

Dr Okun says it is a process possibly 4-6 months.

Let see, I'm in to 2 weeks of programming.

 

I think I'll try and relax, exercise/stretch more, start my new yoga class, and listen to the man with the MD degree and experience.

 

I have so many people wishing me well and praying for me, I can't lose.

 

Thanks man

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Well, I had my second programming session Tuesday 11/8.

I went in with a more positive attitude knowing this takes time.

She put in my first group and kept the setting at 1.5.

The next day I worked out a little in the morning just letting this go as they go.

About 12:30 I had just taken my L/C dose and it didn't kick in very quickly and then my stomach cramped  up to the point I

could not pick up my feet and could shuffle only. After about 1/2 hour I called and she had me raise the stim from 1.5 to 1.9

That seemed to help but my meds kicked in also.

 

At  4:30 after another dose the cramping started again, and it felt like I could not hold my head up. Plus I had some pain below my

stim around the heart,  but was not thinking about a heart attack or anything like. This lasted till 6:30

 

it all started again around 8:00 cramping, feet frozen, arms very slow, and stomach I have never been this 'off' and it was confusing

how this new group could do all of this with no benefits. So I went to bed. I did notice that a lot of this happened following a small meal.

Mornings are usually my best time, but I woke up with some stomach cramping.

 

Hoping for better things, not panicking.

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Recap: Unilateral GPi DBS Aug'16

 

Just finished my fourth programming session with two more to go. This has become quite tedious and I will be glad to get it behind me. I had been comparing between four Group settings each month, one being the best of the previous months offerings, and the other three a broad range of alternative settings. I was to try each one for about a week and note my reactions. I was lucky, as the last three sessions I found the same Group to be best every time. Other Groups were causing symptoms ranging from fairly benign to headaches and toothaches that would drive me to bed with pain. Needless to say I didn't spend much time with some of them.

 

This month's session changed and began to focus on slight variants of my favorite setting. Each one is in the same location on the lead but differs in combinations of pulse width and frequency. I am also able to adjust voltage within a limited range in each Group. This is proving to be more of a challenge to evaluate since they are so similar that I am having to perform tests in each setting such as reciting the months backwards while watching for tremor. Not to mention that a setting could take a week or two to settle in.

 

All in all, I am very pleased. I have had no instances of dyskinesia or dystonia since DBS. My gait is much improved off meds and normal to me in the "on" state. Other noticable improvements are balance, fatigue, stiffness and drooling/swallowing. Some stiffness and an occasional tremor remains. I am much more active, lifting weights and even taking up pickleball. I have also gained 10 lbs.!?, with the holidays right around the corner.  :|

 

Best of luck to everyone post DBS. 

 

 

 

 

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Still on a very low dose of C/L at the moment.  2 - 25/100 & 1 50/200 ER at night. Just seems surreal to be on that low of a dose.

Tremors are returning as time goes on. Brain swelling, phase of the moon, and who knows what else.

 

I gained 8 pounds in the last month. I was down to 234#, but climbed back up to 241# after a month. Crud, that really sucks. Finally returned to my Rock Steady Boxing on Saturday. Coach was concerned with me pushing it, so took it easy.   DBS installed by collar bone, and I really need a support bra for jumping jacks. There are post op medical compression shirts, but might be too restrictive.   I'll let everyone know what I end up getting, but battery moving around hurts! Still tender as just two weeks out.

 

On of the other boxers had DBS two weeks before I did, and had gone to do pull ups. Disconnected his DBS leads! It is a push in connector and managed to pull it out at the battery! From one of my medical/electronic journals I learned what the connector looks like so I can see how that can happen. Medtronics states no stretching, but once scar tissue forms the leads are held in place. Still OUCH!

 

My service dog has also gained weight! Time for us to get back into our two miles, 40 minute, daily walk.

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Well, finished my sixth programming session after surgery and am good to go until the next appointment in November.

 

I now have only three group settings to choose from, as opposed to the four that had been available. And actually, I am only using two of those three based on my activity at the time. Surprisingly, the setting I use most is the one initially programmed by the Medtronic rep upon placement of the pulse generator, with only a slight increase in voltage.

 

The primary symptoms I wanted DBS to address were dyskinesia and gait. This was done admirably, although I do notice my gait is ever slowly deteriorating, likely from disease progression. My balance also improved along with dystonia. Tremor showed no improvement, but stiffness and dexterity is better. Cognitive results remain to be seen with tests scheduled in Nov. Sleep is suffering and of course still have problems with urinary urgency, constipation, and some fatigue.

 

Overall, my DBS experience went very well, with no complications from surgery. It should be noted that I had a unilateral GPi procedure and my disease was not highly advanced. These conditions seem to be more favorable to successful  outcomes. I had more than one team member tell me to avoid a bilateral procedure as long as possible due to increased difficulties in rehabilitation. It took me five years after my MDS first suggested it. He said not to wait too long. I was told only 30% of DBS applicants are accepted for surgery after testing.

 

So, would I recommend DBS? Depends. For me, dyskinesia was the deciding factor. I would lay in bed for hours every evening with my leg spasming uncontrollably. Under-medicating to minimize the dyskinesia was a no-win situation. I was moving from walking with a cane to a walker. My life was fast becoming grim. The latter was the deciding factor for me.

 

 

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