Dbs
 

I confident this has been asked before, but when I search for posts I found none, whivpch I thought odd.

Those who have DBS, it what point did you feel it necessary for you?

My tremor is sooooo problematic I rarely can put my debit/credit card in the reader at a store. The cashier has to do it for me.

Writing, forget it. I don’t even print anymore if I want it read.

I gave up my hobby, actually passion, after 48 years because of my tremor. Very frustrated.

Hi Carolyn,
I shudder to think what would've become of me without the benefit of DBS done almost 15 yrs ago.
I don't have a tremor so can't help you with your exact question but I truly believe you've answered it yourself and are ready to go down that road.
Best wishes.

Tremor was my main symptom and DBS dropped it about 95%! Yeah. I decided to have the surgery when my tremor got annoying. No I wasn't restored to the days of my youth but I highly recommend DBS. Suggest you find an experienced surgeon. I asked him how many DBS surgeries he had done, if any patients had died or gotten infections. My surgeon is one of the best!

The tremor was very problematic. When the neurologist indicated that the medication was approaching the point where the maximum amount that could be taken was being reached, it seemed DBS was the next step to be taken. After DBS, tremor has been reduced about 75%. The same decision to have DBS would taken again, without a doubt.

Dx in 2010, DBS in early 2014. I had two bouts of blood clots (PE) that nearly killed me and some speech challenges. Fast forward to today and wife and I talk about how wonderful DBS has been. Tremors reduced by 80 to 90% most days thanks to Rytary, exercise, and the VA in Ann Arbor Michigan...

Dbs
 

About 1.5 years ago i went for it and had DBS. I blogged the odeal. you can check it out at Scottsuf.Blogspot.com
Follow the DBS road

Hope you are feeling well Scott, it's been a while and your daughter as well.

Best,
Eric

I had an appointment with my Neuro/MDS yesterday. She recommended that I should have deep brain stimulation surgery. She is of the opinion that I am a good candidate. I am being referred to another neurologist for evaluation. I would be getting the Boston-Scientific veraci system, which I was able to look at in her office.
DBS wasn't even something that I was considering at the time. I'm somewhat nervous, as this DBS idea was sudfen and there is a lot to consider. Any thoughts, suggestions or advise would be appreciated. Thanks

Dbs
 

I'm feeling pretty good,considering I've been fighting this **** for 15 plus years. Can't complain or at least I shouldn't. LOL

i've given this opinion before. if a MDS is willing to stick their neck out and recommend you for a DBS, then do it if you can afford it and have the support group to help you thru the process, not everyone can qualify for DBS and there is a waiting list, you are in a select group of pd'ers. if you are someone who also might be a candidate for a disease reversing clinical trial then you have to consider that since a DBS might prevent you from participating. if you are surprised that your MDS is recommending a DBS when you don't think you need it, remember they have probably seen hundreds of PD'ers and they're estimating how you'll be in a few years and obviously think you'll have progressed enough to want a DBS and better to get it now when you can qualify for it rather than take a chance that your health might decline in the future and you won't qualify. imho it would be a lot easier for your MDS to just tell you to keep adding meds rather than get a DBS so when they recommend one to you they aren't doing it just for the economic gain imho, they sincerely believe you will be better off and the last thing they want is someone who isn't sure they want a DBS and/or is going to back out at the last minute, so imho if a MDS recommends a DBS, you need a DBS even though your current symptoms aren't that bad at the moment. i was diagnosed about 15 years ago by DOCTOR A (not using names), but decided to see DOCTOR B for the next 11 years. with obamacare i switched back to DR A and he suggested i add amantadine - hated it and then entacapone and finally i tried pramipaxol which i stopped but from the first meeting he said i should start considering DBS which would have a better result than increasing meds. he didn't really push me on getting a DBS, i think he walks a fine line in recommending it but not pushing too hard which might result in a patient that chickens out at the last minute.
anyway, i'd get the evaluation and find out if you qualify, i think the results are good for a year. just remember, your MDS gains nothing by recommending someone who isn't a good candidate for a DBS, there are waiting lists for DBS and just for operating rooms, it isn't like they're having to meet a quota.

fwiw, i qualified for the DBS but backed out when TRUMP won and i was afraid obamacare would be overturned so i hope i can requalify since obamacare is now secure, i still worry about not having enough support.

For clarification, my Neuro had mentioned the DBS subject to me about a year ago. At that time I really didn't give it much consideration. My progression has worsened in the last year and my level of discomfort has increased. DBS may be the only way I can regain some semblance of a normal life. If I wait much longer to have the DBS surgery, it may be harder on me physically. My Neuro says there is no waiting period other than the evaluation and that I could be scheduled for DBS IN January. Lots to think about. Thanks Soccertese

the boston product is fairly new but it must have a good track record and be better than medtronics, otherwise why would any neurosurgeon take the risk of using new tech? did you ask them about why boston and how it is superior to medtronics, how many they've done and can you contact anyone who's gotten a boston DBS? DOES it have the rechargeable battery option? fwiw, the testing wasn't that bad, and i must have had an adrenaline rush cuz when i tested the movement part off meds i had a very low UPRDS score so i was worried i might not qualify but my neuro had seen me often enough to know i normally don't score that low.

My Neuro said the Boston dbs system is more advanced than Medtronics with more sophisticated programming options in delivering current to the leads. Plus the Boston rechargeable battery life is up to 15 years and is round instead of square with a thinner profile. I believe the Boston dbs has been installed in over 200 patients. Her sales rep, who used to be with Medtronics, is now with Boston because of their superior dbs system. I have not talked with anyone who has this new system.

Dbs
 

I just turned 61 and have had parkinson for 25 years. Two years ago I was stuck in a chair most of the day and had 1 hour of movement for every three of off time. I had to go out in my wheelchair and had a night nurse who stayed with me as I tried to sleep. During the day I was able to stand using my recliner and **** into a bottle. I had always hoped that "they" would come up with a magic pill but I couldn't wait any longer. They did the whole operation in one day. Even before I was turned on I felt a difference due to swelling but when I finally was turned on with full voltage, I have been able to walk and haven't used my wheelchair. My battery only drops to 75% at the end of a week and it takes an hour and a half to recharge every Sunday morning.

I did it because I had no choice. My life didn't exist. It's not perfect since it does still rely on meds and food choices but now I wish that I had done it sooner because my body has lost it's tone.