Anyone have dbs implants to treat par... - Parkinson's Movement

Parkinson's Movement
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Anyone have dbs implants to treat parkison? ,

Kadie57
Kadie57

How do you regulate your meds and do you have freezing problems wirh your legs. I had surgry 4 10 2012 and have been told to hang in there the gift will be worth the confussion. I m so discourged.

33 Replies
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I had surgery 10/11/2011 and 10/18/2011 and I am the gift of living is worth the confusion, but the whole dbs was not what I was told it would be... how did yours go? Great I hope!

BBPILOT
BBPILOT in reply to Crbee3

K 57,

Sorry i'm New PD since 2010 and not familuar with BDS implantds.

Can you explane and i will go the web?

Best to you and must stay positive,

Cheers, BB

my meds are not regulated yet.. I went from 100 pills a day to 9 pills and I am happy , but they tried me on a few others they do not want me on sinemet anymore they said too young at 48 lol young I love that!!!!

lydko
lydko in reply to Crbee3

Oh hello Crbee3, am 48 too! we will have to exchange (if you're ok with that:) but another time, am falling asleep.

The surgery was so hard, and no the dbs was not all I was told. I had no idea it would not help all Pd symptoms, it JUST takes care of the shaking which I had no idea how bad I was and I am thankful for that, I am 54 and have had Pd for 9 yrs, I believe it start with acute lymes disease. Wow on the meds !! As for surgery when they drilled and broke thru the cranium I bit down so hard I crack the filings in my back top and bottom molars. This surgery is not for the weak or confussed mind, I am a strong person but it was almost to much. Was it worth it? Yes, just not to be shaking is a gift.

My legs seem to not play well yet, they constanly freeze up and the meds don't seem to work hardly at all. this is upsetting to me I have things to do LOL and I don't have time for Parkinson to lay me low. Yes the surgery was only 4 10 2012 but it feels like a lifetime ago. Thanks for the answer I am new here and was hoping it was a friendly board.

moonswife
moonswife in reply to Kadie57

Kadie,

My husband had the surgery in Jan 2010, Feb 2011 after he lost 100 lbs shaking 24-7. He was still working and it totally changed him. He was able to work again. Yes, your legs are still some times, but you do not know that with out the surgery this could be true anyway. This is sometimes how PD progresses. Also, your stimulator has not be programed yet. It will be done over and over for the 1st year. Finally they get it right. Then maybe you hit your head so hard the probe moves. So they reprogram. And all in all, he says, the way it has allowed him to still be himself, and not defined by PD, HE WOULD DO IT AGAIN.

Hi Kadie: where was your surgery done? I'm on the calendar for June 15. I'm doing the newer "asleep" option using real- time MRI. My worst problem is tremor followed by weight loss. Tell me more about what you mean by "confusion"

Jash
Jash in reply to Jash

Also, Kadie, what other symptoms were you hoping for relief that didn't happen? Or, was it that you got a symptom that you didnt have before?

Kadie57
Kadie57 in reply to Jash

I was hoping to help the freezing up of my legs, and it doesn't and it seems that the probem is much worse.

Kadie57
Kadie57 in reply to Jash

My surgery was at the UW HOSPITAL in Madison WI , not even 1 month ago=. What I mean about confusion was the elderly and frail. I would never NOT have had the surgey becasue I shook so bad I was not functioning well . So silly me I just lived with it with out really knowing how it appeared to others. This DBS gave me back my life . I don't shake, at all which I did constantly for 9 yrs

etterus
etterus in reply to Jash

Jash... where is this to be done?

Jash
Jash in reply to etterus

University of Pittsburgh Medical Center.

I had my surgery in 2004 and 2005 and it took about 6 months to get my medications regulated. And I am much better since the surgery!!!! I still have balance issues and freezing but I shook so badly before the surgery that I couldn't write or walk without a cane. And I dropped my pills from 6 pills every 2 hours to just Sinemet, one pill every 4-6 hours.

Kadie: keep the faith, they will get you regulated and life as you know it should improve. If it doesn't keep after the doctors!!!

Kadie57
Kadie57 in reply to Sadiesadie

Thank you It is just so frustrating to come this far, but I m much better and believe God did not bring this far to stop know. I must think back to how bad I was and what I m now it is amazing.

My experience w/DBS was excellent. It has given me back a life... not the PD-free life I would like, but at least a tolerable life. I guess a lot depends on the surgeon... I was lucky in that regard... he was gifted and did not use a frame.

I have tremors so severe that I couldn't even eat a sandwich w./o he contents flying out all over the table, floor, and me. Ditto for pizza... it would flap around and the toppings were all over the place. My lowest point was when I went to dinner w/a good friend and wouldn't keep the food on the utensils. It wound up that she had to feed me forkful by forkful.

I had the DBS in 9/10 and it stopped the tremors almost completely. In addition, the neuro told me it wouldn't help w/my freezing in place or swallowing problems, but they are nevertheless gone!! The one side effect for me was a significant slurring in my speech. But I have been thru several series w/speech therapists (I strongly recommend an LSVT certified one) and now most people do not have to ask me to repeat anything.

I have occasional tremors on my right side, but a visit to the DBS "tune-up" doc usually takes care of that pretty well.

Kadie57
Kadie57 in reply to Thumbpick

How wonderful for you, I thinking I m expecting to much to fast, but what has happened is I don't shaking, it is like I just swalowed a breath of air and it all stopped, also my eyes are clearer making it easier to read.BUT THE odd thing now I don;t shake so hard so I don;t burn calories like I did, gaining weigh is a new learning curve I never had to deal with. Should be a button for that also LOL

Ooops! Sorry. That should have read, "I HAD tremors so severe...". Yes, typing is still a challenge in my PD world.

Hidden
Hidden

I had DBS at University of Chicago Hospital in Oct. 2006. I would do it again to get the other side done when needed, according to my Neurologist. I only had one side done because I started bleeding when they went to do the left side and they had to stop! Thank God I had a great surgeon! I would be happy to talk with you, but I don't know how to share private information on here! I just joined today! If there is a way to do so, could you let me know! And I believe you need to give yourself and your Doctor time to figure out your meds etc..every person is different! Hope this helps you in some way! Don't get discouraged and be open with your Doctor about how you are feeling! Blessing's to you!

Kadie57
Kadie57 in reply to Hidden

Thank youI had both sides done in the same day having to bee awake thru the drilling was the worst,I just signed on here yesterday. I usaually don't do boards because when I first discovered I had PD the boards mad me feel worse so I opted to just live my life and trust God to take of it all. I decided I wouldn't let PD grab me because I had much to do I m a quilter and make comfort quilts for people in need, MY focus to help others which in turn helped myslef.

My goodness, but i sometimes find myself feeling almost guilty for being at the end of the spectrum with my DBS surgery and results that my quality of life has skyrocketed off of the top of the chart, most of my results happened almost immediately, numerous sypmtoms, yes like others have mentioned here before, even with those that the procedure was not supposed to help.

Yes, i still have pd, yes i still take meds(from 10 down to 4 pills per day), yes there are a number of symptoms which it did nothing to minimize, and yes, there are still indicators that my PD is "progressing" - such an perverse discriptor!!!

I wouldn't trade my life for the results and relief and joy from my experience with it!

Kadie57
Kadie57 in reply to srarndt

Your joy is great .Not much to say because I just decided to go with what I have in stead of what I haven't got....... my pd will not hold me prisioner because I have already been so bad, I have been given a second chance and I will be fine. Thanks

Jash
Jash in reply to Kadie57

Great to hear...you make me smile Kadie....your positivity will now inspire me...

moonswife
moonswife in reply to Jash

Jash,

If you could sit across the table from my husband he would look you straight in the eye and say if you trust your doctor and follow all his instructions all will be good.

He would also say, don't expect an overnight change, and we still have the programer "tweak" him if his voice gets whispery. Also, be careful. Home Depot and Lowes security system have turned of the DBS twice since the holidays. Maybe they set our security higher in crime ridden Los Angeles.

Jash
Jash in reply to moonswife

Thank you sooo much...and your husband too...

Jash
Jash in reply to moonswife

How much weight has moon regained?

moonswife
moonswife in reply to Jash

waaaay too much. He has a newly created craving for ice cream. We can hardly keep it in the house. As addictions go, I'm sure there are worse.

Kadie57
Kadie57 in reply to moonswife

Thanks for the heads up about Home Depot and Lowes. I wonder about the device being shut off and where. I have so much I just am blessed with the DBS and will continue to work with my People in Madison(See my people sounds important LOL) I have PD but PD doesn't own me.

Kadie, I have had the surgery twice, the firsrt time I developed an infection and they had to pull the entire hing out. (bilateral) The first time I dropped from 2400 mg of carb/leva to 675 mg everything was working perfect. Forward ahead one year, I had lost almost 50 lbs from the dyskinesia and I was ready. Well I now have slurred speech and I now fall. Didn't have that before the surgery. However, my meds were up to 3000mg and now down to 1125 to 1250mg and they are telling me it could be close to the end of the year until they get it adjusted correctly. Medtronics recommends waiting almost 2 years to reimplant. I only waited 10 months. Make sure those insicions stay closed and clean!

Thanks for writing it just seems something so important could be regulated better, Sorry for the problems you are having Lighten94 to have this surgy twice is hard to think of.

I thank all of you for writing now lets ask a really important question Did your hair come back a differant color than when you went in for DBS ? Mine was blonde and is now dark something and grey in spots. This is my Mothers color. I can fix in 3months but like the short cut.

My husband had the surgery on both sides about 3 1/2 years ago. It had freezing in his neck on the left side so bad we usually wound up at the hospital. It took care of that, but that was it. He was 47 when surgery took place. He has gone down hill from there. I am quite sure the surgery had nothing to do with his downhill spiral. Taking care of the neck was well worth the trouble of the surgery. But we really thought that some changes would happen. He can't walk without a walker. He really needs one of those automatic chairs. Looking into a step- in bath, because getting into the tub is getting dangerous. He only goes out to see the doctor, or doctors. Finally got him to go to visit family in Mobile, but his son tells me he lays on the floor 90% of the time. Just like at home. He says it feels better for his body. Hoping the patch will have some effect for him. I feel so helpless.

Hello fellow Madisonian! I'd love to talk to you about your DBS experience at UW. How can we meet? Karen

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