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Topic Time for a new family doc. Go to previous topic Go to next topic Go to higher level

By shakingpt On 2011.08.17 09:03
I have a neuro doc, he is not the problem.
I went for a physical with my family doc. I told him I was going for my first evaluation for DBS surgery. He says "What's that?" I explain and he responds "Do you shake?" Told him of my concern for the severe fatigue I have, at times can barely make it into the house at the end of the day. His response " Maybe you need to lose more weight? and perhaps we should lower your BP meds?"

Need I say more?

By karolinakitty On 2011.08.17 10:18
OH boy.... been there...done that....
our PCP is an idiot when it comes to PD, HOWEVER, his LPN knows her stuff and has been a blessing to us...maybe check and see about his PA or LPN....see if they know more...it worked for us.....

By LOHENGR1N On 2011.08.18 23:35
shaking? You're fairly newly diagnosed with PD if I remember correctly. DBS isn't a cure all, I hope you carefully research sites with those's who have had this procedure both pro's and con's. Many have success but also many have more problems from this, it is brain surgery after all. I'm not sure what benefits come for fatigue from this. Please remember that the sites from the manufacturer will promise everything to sell their unit and procedure. If you're only in to this for a year or a bit more remember also that much more is to come. I'm not trying to scare you but just letting you know that after the DBS there isn't much out there to help you down the road. I know drug management of PD is up and down trial and error trying to get a dosage and mix you can live with but sometimes We have to give that a chance to work and stabilize. My friend I know it is a hard road and there are things that look and sound promising but One has to weigh benefits now against what is to come. To rush to something drastic and last ditch in the beginning leaves nothing when progression really turns up the heat. Life changes with Parkinson's Disease, as they say the hard days now become good days later as the hard gets harder. DBS doesn't make one feel like pre-Parkinson's and I'd hate to see you rob yourself of any relief when the going gets worse. Even with DBS you'll have to learn to cut back and pace yourself or you'll tire just the same. It's early on for you my friend, many changes and adjustment in living lay ahead. Please consider long and hard before committing to what you may need later on. There are many drugs now that seem to help newer or newly diagnosed patients that weren't available years ago. Give them a chance if you can. And keep posting I haven't seen your posts often enough on here! Take care, best of luck and hang in there!

By packerman On 2011.08.19 10:11
Interestingly enough, doctors at Vanderbilt are doing a study of DBS in recently diagnosed patients to see how much it helps them at that stage of the disease.

my hubby (18 yrs w/PD) had his surgery in 2007. you are right, his tremors are way, way less, but it does not help as much for his fatigue. he still has days when he waches T.V. all day in his chair. he also has freezing episodes and still takes his PD meds, but at lower doses than before.

he's been asked to meet with a Researcher next week to assess the effects after 4 years post-surgery. it will be interesting to see what they ask/check.

Pat

By LOHENGR1N On 2011.08.19 19:24
packerman, Wow, That's interesting and scary, Vanderbilt doing a study of DBS in recently diagnosed patients to see how much it helps them at that stage of the disease? That amounts to human experimentation. I'm wondering if they skipped the lab trials in other animals and primates and went directly to Human? I'd like to see the background data and findings leading to this practice. I can't help but question what happens to these patients if or when G-d forbid this doesn't benefit them? What then how do they manage and cope with the results? This is scary stuff I hope ethic's still are held before money but this I question?

By parkinit On 2011.08.24 10:38
My spouse had DBS in 2009. The results were INSTANTANEOUS, but read on...

We were down to 1:45 between pills and taking massive doses of pills - I believe at the pinacle, we were taking 3,000 mg of Ldopa and had some serious dyskenesia. After the surgery, before the devices were even turned on, you have a "honeymoon effect" simply from them stirring around in your brain. We eventually were at 5 hours between pills even BEFORE THE DEVICES WERE TURNED ON! We kept the 5 hours for about 5-6 months, but then were down to 4... 4 1/2... 4... and now, 2 1/2 years later, we are at 2.5 - still better than 1:45.

You have to honestly evaluate what you hope to take away from the process and the doctor should ensure that he confirms your expectations can be met before you proceed. You WILL Be given more time during the day to do things. Make the most of this! The procedure bought us a little more time to have better quality life for just a few more years. We had more time between doses - our ultimate goal. Did or does it take away exhaustion? Not now. It may have initially.

We recently visited with a well-regarded specialist. Some things we learned from her:

1. STN Procedures. Procedures done in the STN have been deemed as counterproductive to dementia issues as well as with speech (and I believe, oral capabilities, in general). My spouse started drooling after an ''adjustment" and has never stopped since. Here is an article on the research: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2783787/

2. Do the procedure earlier on in the disease. She said that benefits should not be delayed, but do earlier in the PD disease process for maximum benefits. This was news to us and the first time we had heard it.

Other things we learned from the procedure that others may find interesting:

3. You will be released after less than 24 hours in the neuro ICU into the care of the spouse or other caregiver. This is scary.

4. Personal. It is an individual, personal decision. Given what I know now, would I want my spouse to have brain surgery? No. I've asked him the same thing, and he said he would do it all over again.

I hope this helps others.

I can send pics of my spouse after brain surgery if you are interested. We documented the process for others... Just respond to this post with YOUR e-mail and I'll send you the pics if you are interested.

By susger8 On 2011.08.24 16:28
Lohengr!n, they can't do a study without approval from their university Ethics Committee, which is charged with protecting the safety of the patients above all else. And they can't enroll a patient into the study without obtaining the proper consent from the patient, which involves understanding and agreeing to all the procedures, the risks and the potential benefits. They have done a pilot study in 30 patients with positive results, which enables them to now do a larger study. They hope to find that they can slow the progression of the disease.

The patients still receive the standard of care so it's not as if they are left with no treatment if the DBS doesn't help them.

I'm not at all sure I would want DBS at any stage if I had PD, but the possibility of slowing the disease would be a goal worth trying for.

Sue

By Elly On 2011.08.24 22:38
How much does DBS help a PD patient who does not shake and whose primary symptom is overrriding stiffness? Six months after my husband's diagnosis, his neurologist suggested we look into DBS. We went to two prominent neurosurgeons and they both agreed he was not a candidate because his symptoms were not bad enough. He much worse now but still does not shake. (I read somewhere that approx. 15% of Parkinson's people do not shake.)

By sannph On 2011.08.27 21:42
My husband had DBS in April 2009. His primary symptom was stiffness; he had no shaking. It did help the stiffness and he was able to decrease his Stalevo med from 200mg to 125mg (4 times/day). However surgery had a very negative affect on his speech. Most people can no longer understand him at all, and I have more problems understanding him now as well. Would he go through surgery if we knew this was going to happen? Probably not. But I don't know if he'd be able to be mobile w/o the surgery so who knows what's best? Move or speak---how do you decide?

By shakingpt On 2011.08.30 05:29
DBS is a personal choice. I have had PD now for almost 8 years. I am a physical therapist. I am used to helping others,but what patient is going to allow someone shaking like a jack hammer operator work on them? I got my first glimpse into what I was like without meds in testing for the DBS. It was not a pretty site. If approved after all the testing I will do it. I have an opportunity to continue seeing patients and doing the work I love for at least another 4=5 years. I also saw the look in my wife's eyes as I was without meds. She deserves nore of me if I can give it to her.

By packerman On 2011.08.31 10:30
have you been on the DBS Forum on Yahoo Groups?
my hubby has gotten a lot of good info from people who have already had the surgery (both pro & con).
he has had a lot of benefit, but we know others who have not.
yes, there is a lot to consider...
Pat


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