I qualify for the DBS surgery (which scares me to death) & wonder if the Neupro patch could delay the surgery. Am on 4mg. so far.

[wynn7]

[etterus]

I am awaiting the dbs workup. Tried Nuepro on 1mg/day for 1 week. took 2 days at 2mg and quit feeling very lethargic an sleeping poorly. I did not find any improvement, just felt worse. Do you feel any improvement with Nuepro?

[wynn7]

Yes, I had 3 great days last week - fully functioning and able to drive. If insurance will cover it I will stick with it for awhile. Have not days that good in years I have not slept without a concoction of pills for years so sleep is not an issue. It does take adjusting the sinemet up & down for best results.

[etterus in reply to wynn7]

What dose did you start with?

[wynn7 in reply to etterus]

1 mg. & upped it every week.

[grammieof3]

I have had dbs is 2006 then again 2008 for other side want to talk about whats scarey? Ill try to help glad the new med is working i take requip xl just let me know if i can help

[Pete-1 in reply to grammieof3]

I, for one, would be interested to hear your DBS story, if you felt up to bothering.

[grammieof3]

Sure i have lots of time after i was dx with pd none of medicine was working so they told me to consider dbs i did research watched video at doctors and decided if i had a chance of not looking like ozzy osbourn anymore it was worth it. You have to be awake so that was scarey and i remember everything they had a problem with my mri so they had to take the halo off they had put on my head that hurt then the nurse got under a plastic they had put on me when it was time to drill she said i wouldn't feel any pain after they had numbed the skin but it would be loud and my teeth would chatter sounds bad but it wasn't nothing else really rememborable until they told me to hold a cup AND I DIDN'T SHAKE! The most trama was having to shave my head they had told me i wouldn't have to but the way they had shaved my hair there wasn't much choice. I wore scarfs and a wig the second time and am happy to say my hair grew back very thick. I then went back to have my battery put in. I swore to tell the truth i would never have it done again but 2008 i found my right side doing the same thing, dragging my leg, the pain was bad. So went back to surgeon told him i thought i remembered to much just in those two years things had really changed they put five screws in my head seems like it was three days before surgery looked like frankenstien but that was the worse thing. Its been four years from last surgery so im sure its even better. I don't remember anything from second surgery. I shouldn't have said things i remember about first one but i believe this is a place we can go to talk about our fears and share from someone who has been there. I haven't had to have one of my batteries replaced yet. I only have small tremor in my right hand. With stelevo and requip xl i can walk. I am very happy with my surgery ill shut up before i write a book. Thanks for reading

Dena

[jernor in reply to grammieof3]

Thank you for sharing!

[Pete-1 in reply to grammieof3]

Thank you for that. I am wondering if hey gave you any "happy pills" to keep you relaxed during the op.

[Pelley]

I went through a gruelling year with DBS. A one day simple "brain surgery" ended up in five surgeries two post op infections and pic lines with antibiotics for months...... BUT........ It has now been two years and I would do it all over again! Even with the infections (not)! It has given me more time to be somewhat normal. Funny, before the surgery the only thing left to me that was normal was the setting on our dryer! The drugs had stopped working except when they wanted to after ten years of every recipe available in varying doses. I went from 32 pills a day down to 9 sinemet 25/100's. My only fear now is battery replacement. I can't be that unlucky to have more infection problems.....

Just do it! It's not bad after the halo is on. Good luck and keep us informed.

[wynn7]

Thank you for all the info. Am still living in hopes Michael J. Fox will share his pill concoction that is working as he would not have DBS.

[Precious44]

There is a short film done by a producer, showing him having the DBS. It is very interesting and would you a look at exactly what they do. Also just because the concoction that Micheal J. Fox takes, might work for you..and he had the DBS years ago.

[Hikoi]

Just to note that I don't believe it was DBS that MJF had but another type of neuro surgery and because of this I'm not sure if he would now be eligible for DBS.

[wynn7]

After meeting with the UCLA surgeons last wk we learned Michael Fox did not have DBS but a procedure they do not do anymore. So frustrating as this Neupro is helping so much & insurance will not cover it.... At least there was good news about the new drug going into testing.

[Hikoi]

What's the new drug wynn? Haven't heard this before.

[wynn7]

The new drug is Viartis & am just learning more about it/

[wynn7 in reply to wynn7]

Sorry - wrong answer. Viartis is the name of a PD research site. The drug is coming out of a Canadian Co/ that Michael Fox has contributed to. something like CYNASPS)

[SteveR]

MJF had a Pallidotomy done on one side. From what I have read the results of having DBS after a Pallidoromy are at the best mixed. If I am having brain surgery I rather not get the feeling that I am playing with my brain in Los Vegas.

[Larryp]

I had DBS done MAY 10 2012 with very good results . I can move again very little shuffle ,tremor , rigidity or movement problems can be seen or felt BUT i need to look at the DBS as another type of medication . i have lowerd my pd meds by 65% yet i have been told to continue on some meds and dbs together . I was led to believe that adjustments would last approx 60 days from surgery .Today i realize it will take longer for me How long a lifetime hopefully . the only thing i can do is learn as much as i can about dbs programming as it is my new normal ,my responsibility ,my lifeline . I have never felt this kind of relief with a med including the patch from pd as i do with DBS surgery . dx 7 years ago i could no longer floss lol and the body pain was pretty bad . i was told i would be a good candidate at 57 years old and did not want to risk being a bad one so i said lets do it

no regrets at this point

[Jash in reply to Larryp]

That's great news, Larry. Where did you have it done? May the improvements last a lifetime--and until the cure--

[Jash]

There is an alternative to awake DBS-- it's offered at a variety of hospitals. It's conducted under general anesthesia in an MRI tube. I had it in June at the University of Pittsburgh Medical Center. At three months out, I'm still adjusting with programming and Neupro, but I can do so much more now. At 77, I was running low on options. I'm back to going to restaurants and public events and running/jogging. -- not to mention buttoning my shirt and zipping my jacket.

[wynn7]

Jash, With all my reading and research had never heard of this. This would definitely allay some of my fears although can't handle an MRI either! Hopefully you are under before "the tube". I am in a big city area. How do you find out who does it? The UCLA surgeons I met with never mentioned that option. Thank you for your help!

[Larryp]

Thanks Jash

i had it done in tucson arizona 5 miles from my door step.

wynn 7 when they say awake its a twlight awake so dont worry about the process

[jernor]

After reading all these comments, I have been given new hope for possibilities of future treatments for my husband. Thank you ALL for posting your latest "adventures" with PD Meds and procedures.

[sandeelee]

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[LauraL]

It is scary but, honestly, very little pain. The most painful part of the entire procedure was the stimulator implant. It never occurred to me that my body was not hollow and stuff inside would be shifted around. I went home the morning after the surgery and two weeks later had the stimulator implanted in out-patient surgery.