Dbs surgery -- if you have had dbs surgery please tell me about your experience after the electrode implant.

I have had the stage 1 surgery and it is a month before the second stage controller implant. In the meantime , my Parkinson's symptoms have gotten so much worse. After the second stage, it will be 3 more weeks before the programming. I can barely function now. I am afraid that after the 2nd surgery I will not be able to move at all. before I am able to get programmed. Please tell me if you have had this experience and what the outcome of your surgery was on your symptoms.

[etterus]

I am scheduled for the 1st stage 12-8 & the second on 12-12 . This is the usual schedule from what I know. Typically the programming is 2-4 weeks later too insure that the inflammatory process is done.

[Pete-1]

Doesn't sound much fun. Have you had to stop or reduce some of your normal medication during the whole or part of the various stages of surgery?

[Kadie57]

I was lucky to have my surgeries all at once, even the battery was implanted the same day, while Yes it was allot I dd not have to back for a 2nd surgery. What you describe is exhausting way to live. Can your neuro help some how. I wonder why so long to be "Turned on" and programmed. I don't mean to upset you. However, The DBS implant is only designed to stop the shaking, it will not solve the other problems with Parkinson. It can help your gait and function some by stopping the shaking that will help with so much. I would get a hold of your Neuro team and asked them what they can do for you. They made good money on you now they owe you. Let us know what happens. Best Wishes, Better days ahead.

[movinngroovin]

I had one side and the implant done on 11/5/14-turned on 11/24/14-WOW how great is this device!! No tremor at all on the sidei implanted. Very little meds if any--maybe a 1/2 sinamet here and there which is replaced with D5Dopa 40% Mucuna from CHK Nutrition-tiny amount. As far as Ii am concerned the was well worth the wait--I can hardy wait to have the other side done!

JUST THINK THER IS SOEMTHIGN THEY CAN DO TO GET US TO THE CURE IN THE NEXT 10 YEARS--YEAH! (ALPHA SYNUCLEIN CLEAN UP)

BE HOPEFUL

BE GRATERFUL

COUNT THIS ONE AS A BLESSING MY FRIENDS,,,

[movinngroovin]

I had one side and the implant done on 11/5/14-turned on 11/24/14-WOW how great is this device!! No tremor at all on the sidei implanted. Very little meds if any--maybe a 1/2 sinamet here and there which is replaced with D5Dopa 40% Mucuna from CHK Nutrition-tiny amount. As far as Ii am concerned the was well worth the wait--I can hardy wait to have the other side done!

JUST THINK THER IS SOEMTHIGN THEY CAN DO TO GET US TO THE CURE IN THE NEXT 10 YEARS--YEAH! (ALPHA SYNUCLEIN CLEAN UP)

BE HOPEFUL

BE GRATERFUL

COUNT THIS ONE AS A BLESSING MY FRIENDS,,,

[susieque]

I had one side done last Feb and the other side in Oct. I didn't have tremors to start with but I had dyskinesia from the Sinemet. I am very sensitive to it. I am finally at peace with my body. It was well worth it. You haven't said at what voltage you are or how much Sinemet you are taking that might be a clue. By all means call your Dr. they are there to help you!!!!!

[sunshineonacloudyday]

I had the surgery in March , in Canada and the surgurery as done all in one day, regrettably I suffered a stroke during the surgery. A blood vessel was hit. The dbs surgery has completly changed my Parkinson's symptons, no more freezing episodes ani i have not had any dyskinesias or the herky gerkies as i called them at home. I did go into the surgery off of all my meds and that was scarry for me. But all in all I consider the proceuera a huge success.

[Cbauer in reply to sunshineonacloudyday]

I am curious about the improvement in you freezing episodes. I have a friend who is reluctant to have DBS because he has been told that it would probably not help with freezing.

[sunshineonacloudyday in reply to Cbauer]

my freezing episodes were directly related to the wearing off of meds

[lolcott in reply to Cbauer]

I just had the surgery in April 2015. I will be activated tomorrow morning 9 am May 14th 2015, Woo hoo! I was diagnosed with Parkinson's Disease way back June 1998. I was 36 years old and was diagnosed with Bradykinesia. Slow gate freezing, loss of balance. When I was temporary turned on / Activated. My speech became clear, My smile was no longer inop and working. But most of all my limbs became free. No cog wheeling. I can't till tomorrow

[Cbauer in reply to sunshineonacloudyday]

I am curious about the improvement in you freezing episodes. I have a friend who is reluctant to have DBS because he has been told that it would probably not help with freezing.

[Cbauer in reply to sunshineonacloudyday]

I am curious about the improvement in you freezing episodes. I have a friend who is reluctant to have DBS because he has been told that it would probably not help with freezing.

[Cbauer]

Did you discontinue your meds. You need them until you have the programming, and you will continue to need some meds even then.

I do not think you should suffer in silence. Contact your doctor and ask them to see you ASAP. This is not the usual outcome. They can and will help you in some way.

My initial surgery was 7/3/1914. The battery pack surgery was a week later, and the programming another two weeks later. The only times I have had any problems like yours were when I had to be off the meds.

[Hidden in reply to Cbauer]

thank you for your answers. Since I will not have any programmming until 2 months after the implant, I will not know for a while if it was successful. I will make sure that I let you know because I also had the same concerns before surgery. The answer my doc gave was that any problem that levo dopa helps make better, the dbs surgery will make better . BUt as I said, I will let you know the results when I finally get programmed.

[Hidden]

Where are you having this done? Are you still taking you medication? DBS does mean you can stop taking medication. In my case I suffer from dyskinesia and Freezing. Freezing means you need more medication. But that can increase the dyskinesia. There are at least two places they can insert the elecrodes. One is called if I rememer correctly the Substantia Negra and one other is the Globux Paladus. These are only a few mm apart in the brain. Different people need different areas stimulated.

Forpeople who have difficulty tolerating drugs the Substancia Negra is best. Medication can often be reduced but stimulating this area can cause dyskinesia. For people suffering badly from dyskinesia the Globus Pallidus is better. Stimulating this area can reduce the dyskinesia allowing medication to be increased to reduce FREEZING.

I have been told that after the operation I should feel as good as I do when the medication is working and I am not dyskinesia.

If you are not taking your medication your Parkinson's will definitely get very rapidly worse. So start your medication immediately. If you are taking your medication contact your neurologist or GP. Immediately.

[Sallee]

In response to the original post, my experience was different, yet similar. In my case, I had the Stage 1 electrode implant 3/14. I actually had immediate results from the implant surgery. I am told this is due to the swelling in the brain which helps the symptoms a few days until the swelling goes down. My recollection is the tremors reappeared within 3 days.

In my case the controller was inplanted roughly 3 weeks later. I remained on meds until roughly ten days before the controller was turned on to be able to observe pre and post stimulation. I was not a happy camper while off meds. In my case, I had the excitement of the immediate although temporary relief. Then the "long time" between surgeries. I wanted it now! Then to take me off the meds and deal with the symptoms AGAIN. Argh.

Once turned on however, all my complaints went out the window. For me DBS is a miracle. I am able to work, take walks, go places with my family and keep up, coach youth wrestling again, all sorts of positive results.

Obviously I am not a physician and clearly cannot give you a professional opinion, but I think you will be pleased in the end.

[Hidden in reply to Sallee]

THANKS for your reply. I have heard only good things from people who have had the surgery, so I don't know why im so skeptical. I just have to be off my meds for 12 hours before programming. I don't know how you made it through 10 days!!

[concernedspouse]

Hope you're hanging in there, Siak. My thoughts and prayers are with you.

[Hidden in reply to concernedspouse]

thank you for your kindness! I fluctuate between negative and positive thoughts, but over all I am trying to not get discouraged. I cry a lot which I hate because I don't want my children to get discouraged.

[Pdqyengr]

Had the surgery and the stimulator installed at the same time, bilateral probes, should be done in 4-5 hours by neurosurgeon who has done more than 150 times.

[LauraL]

Although it may seem that the day that your stimulator is turned on is a distant dream, I can assure you that your decision to have DBS was one of the best decisions you have ever made. I would probably have backed out but in Dec. 2008 and Jan. 2009

my daughters blessed me with two precious grandsons. At that time, I couldn't even hold a book or use the computer for tremors and I found out that feeding the babies was out of the question too. If I held the bottle with my trembling hand I risked breaking their lips and if I rested them on my trembling arm and feed them with my good hand, I risked causing them Shaken Baby Syndrome. After the surgery I have been tremor free. My stimulator is currently nearing battery replacement time and even though it doesn't thrill me, the alternative is far worse.

[lolcott]

I had my surgery April 7th 2015 1 day before my 53rd birthday April 8. My surgery came in 2 parts. April 7 2015 part 1. holes drilled into my head. ( That was a echoing vibrating experience. Being awake and knowing what he is doing. ). Took them from 8 am to 1:30 pm. Had to redo the 2nd prob a 2nd time and move it just a bit. Got better results in the 2nd spot. Then the team temporary activated the electrodes with a temporary battery. Mind you i was diagnosed diagnosed with Bradykinesia June 1998, not sure of exact date. I was just 36 years old. Then they just coiled the wires up and tucked them under my scalp and stitched me up for part 2 of my surgery. I was ready to get out of there. Spent one night in ICU. The nurses and Dr's and who ever was there all night was very loud kept waking me up. Part 2 of my 2 part surgery was on April 15th, 2015. I was out for this surgery. They implanted the generator / battery pack and skewered me on the right side of my face under skin just behind my right ear and they ran the wires from electrodes to the battery pack and reclosed me up, and closed up my right side chest where the battery pack is located. Every since part 2 I have been suffering anxiety, heavy breathing, and can't catch my breath. Dizzy, flushing hard like almost passing out. Been doing that now for 30 day From April 7th 2015 now May 15th 2015. It has been hell for me

[lolcott]

I had written you a quit lengthy note to you and I accidentally deleted it not once but not twice, now three lmao, but I have learned to use copy and paste finally. Yes I mentioned a few choice syllables. I need to get to bed as tomorrow morning comes early. I have to be in Iowa City, Iowa VA for my first ever activation of my DBS. Yes I have Bradykinesia. The bad mojo the freezing, slow gate, Broken smile, and etc etc... When the team temporarily turned on the battery, my smile was back and I was so relaxed and tired too. Also, I had no arm or leg cog wheeling and my arm was smooth as a baby's butt. And what's even more incredible... My speech was back and I was able to speak thoroughly with no slurring for the first time in 17 years. I cannot wait until tomorrow. I was diagnosed June of 1998 36 years old. My DBS implant was done in 2 parts. part 1- April 7th a day before my 53rd Birthday. Was the probs / electrodes and the drilling on my skull while I was awake. The echo and the vibration I still remember to this day. Took from 8 am till 1:30 pm. Had to move the 2nd probe

and got better results. Coiled up the wires just under my skin and stitched me up. Part 2 - April 17 was the installation of the battery pack and they skewered me under my skin behind my ear down to my battery pack to the right side of my chest. Then they had stitched me up. It has caused me to stay up late, be irritable and annoyed of the smallest things. I'm hoping that when this battery gets turned on tomorrow, that this anxiety will go away. Ok i got to go I hope yours went well. I will respond back in a few days to let y'all know how i am doing.