DBS

[gigi9]

I want to know your experience with DBS

[jombi]

Why doesn't anyone reply?

[pdpatient in reply to jombi]

@jombi, because perhaps there's been enough discussed about DBS in this forum already 🤔? Just curious, did you do a search on this site?

RKM

[gigi9 in reply to pdpatient]

Yes I did but I wanted the comment of the people that actually had the surgery

[simonasays]

DBS was a LITERAL lifesaver for my dad. He was extremely rigid and stiff and freezing at its worst. He would be wheelchair bound at this point if it wasn't for DBS i am sure. It extended his mobility at least 8 years though he is having issues with freezing and is becoming unsteady., though still walks / runs independently.

[gigi9 in reply to simonasays]

Thank you for sharing He got the DBS how many years after his diagnoses?

[simonasays in reply to gigi9]

4 years after. 2009 dxed (but likely showing 1st symptoms 2007) 2012 got the DBS. Immediately it was like night and day... First time i saw a smile in at least 4 years. Im not pushing it but it bought us so much time with him and from what i understand his features of PD were the ones DBS had the most impact on.

[pdkid in reply to simonasays]

so great to hear! wondering, did it change his face mask?

[simonasays in reply to pdkid]

it was the first time in 4 years we saw him REALLY smile. This was 3 months after his surgery. He continues to smile more easily but he has never returned to the mask face he had before the surgery.

[gigi9 in reply to simonasays]

Thank you for sharing Beautiful picture

Where are you? Are you in Canada?

[simonasays in reply to gigi9]

no - we are in NYC and my parents eventually relocated to florida for a more relaxed lifestyle.

[gigi9 in reply to simonasays]

We are in Canada i am very disappointed with the care regarding Parkinson

[pdkid in reply to gigi9]

Where in Canada are you and which aspect are you disappointed with? We are in Toronto.

[simonasays in reply to gigi9]

Although I can't comment on the quality of care in Canada. The DBS surgery was about the only positive experience we have ever had. We have been consistently disappointed find neurologist after neurologist. I don't think that the current medical model takes into account the whole being. And I think just like everywhere else, a person has to pay out of pocket to get someone who thinks out of the box

[pdkid in reply to simonasays]

beautiful pic! and thanks for sharing! that is so hopeful to know

[Speedy24]

My experience with DBS

I was officially diagnosed on December 23, 2015, after several months of suspicions and several Neurologists.

During the first year my treatment started with RAGASA LINE ONCE A DAY.

At the beginning of the 2nd year sinemet 1, 3 times a day or every 8 hours (24 hours medicated)

The third year began with a change of neurologist, and an increase in medication, 2 sinemet every 6 hours (18 hours medicated). The fourth year I started with reinforcements for the sinemet. Comtam was added to my treatment without positive results, so my neurologist decided to add sinemet CR one night to test if it had any effect on regaining sleep, which I was losing, and with it, patience. After contam and CR, they added Rytary, which I only took for two days because of the side effects. As I entered the fifth year I started with a new regimen, this time sinemet every 4 hours with the addition of Imbrija, without results.

In the middle of the year, they approved NOURIANZ, which added to the treatment only caused more side effects, after which I started doing some serious research at DBS. At this point, it was not only the tremors that made my work difficult, but the DYSKINESIA, DISTONY IN BOTH FEET AND TORSO, LACK OF SLEEP, WEIGHT LOSS, AND CRAMPS, especially on sleepless nights. Apart from occasional constipation, for which I found a solution (LENTILS, QUINOA AND PUMPKIN).

After making the decision and communicating to my doctor, we began with the necessary procedures and tests. The appointment with the surgeon was short and the doctor explained how he was going to perform the operation. The procedure would be performed in 3 parts, a first starting with the left side of the brain, cut, incision and insertion of the cable, 7 days later the right side of the brain and 10 days later the implantation of the stimulator and connection of the cable. Thank God, the operations were carried out without any problem.

I can say without fear of being wrong that the results have exceeded my expectations. Those who suffer from this disease will understand me and know how difficult it is to face a new day with symptoms that not only repeat themselves, but that amplify with the passage of time and ineffectiveness and side effects of different medicines.

Today, although I have not reached 100% yet, I am 90% and dyskinesia, dystonia, tremors, cramps, insomnia and constipation have disappeared (there is still a small tremor in the right leg I think is a symptom of anxiety) The best of all is that, contrary to the recommendation of my Dr. Since the day of programming, almost more than 2 months, I have not taken any pills. I am ready to resume my work, always keeping in mind that this is not a cure and therefore we have to keep fighting to win the battle.

I promise to keep informing you of my evolution and trying to help as much as possible.

[jeeves19 in reply to Speedy24]

Messsed up my speech big time🫤