[MikeTTF]

Submitted this to "ask the surgeon" Figured Id put it here...

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Hello Doctors,

I've started to write you many times ... hope I finish this try.

Hard to type, so I'll "shorthand" as much as possible.

PD symptoms for 10 years - diagnosed 7 years ago - bi-lateral DBS stn at Cleveland Clinic 7 months ago.

Went well - no complications - Doctors said they nailed the locations - particularly the left lead (rt most affected) said it was the best ever they did.

Programming now on 6th time (11 hour round trip in car) and am ready to give up. They're making many poor guesses and I'm at the end of my patience.

1st session had a test of 2.2V bilateral ("off" Sinemet for 12 hours) and walked normal for the first time in years, w/o drugs.

It's been all down hill from there. Side effects from stim = Jaw - neck - tongue dysk - speaking trouble - right hand dysk (can't write) Many near intolerable "off" periods from reduction of Sinemet. Down to 700 mg before surgery - (from a high of 1200) and down to 400 - 450 now.

MDS is VERY cautious of MNS Malignant Neuro Syn and is reluctant to cut Sinemet further. He's shoving Mirapex at me like he owns stock in the company.

Mirapex does 3 things for me - makes me poor - makes me very tired/sleepy - makes me hallucinate (see people)

Can't type anymore. I'm very disgusted I don't travel well and this is costing a bundle. I've got 100,000 $ of perfectly placed leads and no relief that lasts or is repeatable.

Thanks for reading

[made it up]

Hi Mike,
The fact that in the early stages after DBS you were able to improve your gait so significantly unmedicated makes me think the leads are well placed.
For myself having had one side misplaced by 2 mm I can honestly say right up until it was repositioned I had not one moment where my gait was improved then bingo it happened.
You're dyskinesic now because your medication needs are completely different to what they were pre DBS.
I think and remember it's just my opinion but you sound overmedicated, you possibly don't need as much Sinemet and the Mirapex sounds like it's got some side effects that are pretty awful.
Perhaps lower the amounts you take by having 1 less tablet a week if you're concerned about withdrawing these drugs suddenly.
Maybe with the programming you're over stimulated, remember it is for the programmer a guessing game too.
Perhaps ask to be put at the setting you had originally and see if there's an improvement? Also do you turn up to programming appts unmedicated for 12 hrs? That'd give a better picture too.
Good luck Mike, for me "been there done that" but hope I don't come across sounding too bossy!
Regards,
Lee

[vlhperry]

Dear Mike,

I also have had DBS surgery on both sides. I needed the surgery because I had experienced the MGS Malignant Syndrome twice in the summer of 2005. I was in Intensive Care for 3 days the first time. I was placed in a drug induced coma and could only be awakened on the third try.

MGS Malignant Sundrome is caused by overdosing of sinemet and/or other Parkinson drugs such as comtan, stalevo, mirapex, etc. From what your letter states that your doctor is afraid you will get MGS Malignant Syndrome, but if, as you say, you have been able to cut way back on the Sinemet dramatically, Then your DBS was a success. After my surgery, I also experienced difficulty with speech, my hands were like foreign objects, and I could no longer trust my judgement. These problems disappeared in a little less than a year with the help of a patient speech therapist.

It could be you need a second opinion as it sounds like your doctor is not listening to you. Mirapex should be cut back on gradually as patients have a limited tolerance to it which can result in sleepiness and hallucinations. His focus is on reducing your dose of Sinemet, but he is making the choice for you of increasing your pschological discomfort to prevent something that may not be likely to happen with the dramatic reduction in Sinemet you have found acceptable.

Sincerely,
Vicky Lynn

[paula_w]

Hi Mike,

Is there no one locally who can work on your programming? I haven't had DBS, but I have a friend who used to have the worst case of dyskinesia I've ever seen until her DBS. It took away all that, but she more or less lost her personality and was depressed.

Four years later, she came to visit me and was more like her old self. She said she finally got a programmer who understood.

two cents and sorry to hear about this,
paula

[chasmo]

many DBS'ers out there have a love/hate relationship with their programmers. Once you get to a "kinda" working setting, my best advice is small changes and change one parameter only.
Remind your Doc that the MEDIAN result for a DBS is a 50% REDUCTION in meds and an 80% increase in ON time

All that mirapex is doing is clouding your programming efforts and making you feel like crap.

Always get a copy of your programming settings, that way I can respond to your query's better.

I feel like I a m looking at an incomplete picture here. SOme important info is missing.

Cleveland Clinic has one of the best teams anywhere. Perhaps they are training new people on your dime??
Charlie

[gaykir]

Mike - I should just say "ditto" for Kevin. I thought you were listening in at our house. Just substitute Dallas for Cleveland.............