Fixin to get DBS and very nervous

[Ou812]

Ive never done anything like sharing my issues with strangers but .pardon my punctuation ,it usually stinks ..ive had Parkinson's now for just over 4 years .im 44 ,I just got finished jumping through a ton of hoops and finally ,i go in for dbs surgery on the 22nd of Aug . Basically, im scared ,im not scared of death ,im scared of this procedure failing .any advice or comments from those of y'all that's already had it done thanks

[Hidden]

Six years earlier my movement disorder specialist told me DBS was not recommended.

I suggest you first try high dose thiamin hcl. Strongly suggest.

[Ou812 in reply to Hidden]

My movement people told me it would be a good idea to get

[Hidden in reply to Ou812]

healthunlocked.com/parkinso...

Kimbo1962

My hubby diagnosed in 2015. Rigidity, tremor in right arm, unable to swing arms when walking. Unable to turn in bed,get off chair, constipation, freezing in doorways. Horrendous muscle and joint pain which became the most debilitating. Tried levadopa came off due to side effects, tried rasagilline came off due to side effects . Just been taking mannitol and macuna pruriens, vitamin d and vitamin b. Then I saw on healthunlocked the Dr.Constantini high dose thiamine...was kindly given docs email...emailed him about Hubbys pain and got a response within two hours. Started on really high dose of 6 x 500mg in morning 6 x 500mg in the afternoon. The benefit was within 48 hours. Hallelujah the pain was gone. Not only that but the muscles relaxed and not so rigid, able to turnover in bed...get off chair. We reduced tabs to 3 in morning 3 midday after 1 week. Decided to come to Viterbo for a one to one and saw doc today. Started first 100mg injection. Response immediate, facial expression not so set.... overall feeling even better. Will continue for five weeks on injections then back on tabs 4 morning x 4 afternoon. Doc was so kind and thorough and Erika did all the translating. He did all the tests to see where hubby was on the scale. Very happy we came. Have the injections for next five weeks. saw all the patient videos of before and after,what miracles happen with the protocol was amazing to see. Can’t thank Doctor Constantini and the entire team enough. The support given from my first email has given us hope and light at what seemed a very dark tunnel. The support given here deserves a huge thank you as well, without you I would never have hea

[JohnPepper]

That is an extremely radical operation, which does NOTHING TO SLOW DOWN THE PROGRESSION OF PD. It is not 100% guaranteed to not have negative side effects with sight and voice. Have you not given any thought to doing some meaningful exercise? ave a look at my PROFILE and contact me on my website, reverseparkinsons.net and I will try to help you as much as I can. It costs absolutely NOTHING!

[Tfrk]

My experience is that it has been life changing. Age 57. Dx 2008 Was experiencing harsh leg cramps overnight, could not walk to bathroom at night and had to use a urinal, by morning full dystopia in ankles and really was not ambulatory until levodopa kicked in after about 50 minutes. This all went away in 2014 afterDBS

[ddmagee1]

Thanks for reaching out in this forum! I have found that all of us who suffer from PD and it’s many effects on our lives, have a great deal in common. Therefore, when somebody is in need of advice, or, perhaps, understanding, of an issue, concerning PD, and others who have experienced the same or similar problem, can be very valuable sources of help, in regards to decision making on how to handle a problem. So I have never looked at posting on this forum, and sharing with others, seeking advice from fellow PD sufferers, as communicating with strangers; however, I suppose you can say that is what we are doing. This bond of having PD affects us all in a special way, and everybody whom I’ve communicated with has always been very helpful and understanding. I have not had DBS, but I have had the muscle pain, rigidity, and the like. Sinemet helps a lot with tremors and some rigidity, for me. Stretching exercises, with range of motion, are helpful to me. I hope you will find the best solution for your problems. Fear of the unknown is always difficult to deal with. Perhaps enough people will share their experience with DBS in this forum, to help you with your concerns, going forward. We are all here to support each other, as we travel through the maelstrom of living with PD.

[Astra7]

I hope it goes well for you. I'm sure it wouldn't be recommended unless needed. Let us know how you get on.

[CplParkinson]

I've not heard of it ever being botched. I'm 45 had mine 2 years ago at 43. Before I had it I was miserable. Dystonia was kicking my a$$, shakes, not the kind you drink. Couldn't even walk very easily with out help of a Cain. Now I can play with my kids, walk without a Cain, bike, all kinds of things. It greatly helped.

[Sleeplessparki]

I’m 60 years old dx in 2010 and for the first 4 years I was able to control the tremors with a combination C/L ( now rytary ) ropinerole and amantadine. I came to the conclusion I needed to get some piece of my life back so on Jan 28, 2018 I began the process of becoming a candidate for DBS and on June 11th I had the first of two operations the second on June 19th. Both done asleep. I can only speak to the surgery at this point as they will not turn the device until July 25th so as of right now I’m not getting any benefit from DBS. Let me just say you have nothing to fear..... I was anxious as anyone would be and I have to say after watching all those videos on the internet I was truly scared. But as it turned out the surgery is nothing to worry about... you will have some discomfort but the pain medication does the trick. Remember they perform many of these operations yearly across the country with a slight percentage of complications. I wish you the best with your upcoming surgery. Don’t be afraid it will be worth it.

[Ou812 in reply to Sleeplessparki]

Thank u ,my first small thing is to have some small studs bolted on my head to help with some scaffolding or whatever on the 22nd of Aug then the 31st they r supposed to start rootin around in there then the 7th of September to install the thing in my chest so i guess im just panicking .thank u

[etterus]

First thing to consider is that no two of us are alike.... what works for someone maybe poison for someone else.

I had been 10 years into my process with the non tremor version of PD, PIGD. This is postural instability-gait disorder, which affects 25% of us. My symptoms where a very bizarre dyskinetic gait that had my right extremities flailing all over and left foot dystonia. Levodopa helped but over time things were getting worse and sleep was extremely difficult. I was up every hour kneeling at the side of the bed with a hand held urinal. ... couldn’t walk to the toilet.

I was evaluated at the Mohamed Ali research center in Phoenix for DBS and approved. However my son, a MD, wanted me to move to Oregon to be closer for support. I then proceeded to pursue DBS through OHSU in Portland and have been very pleased with the results. I’m currently 4 years in and though it’s not a cure I would rate it at least a 80% improvement in symptom reduction. Good luck

[Pittgirl]

I ha DBS surgery about 2 years ago and it was a good decision. No tremors, rigidity went away and I took, less medicine,. I think you should do it,.it is the one thing they have that almost always works. What else is there?

Barb Mullen