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graflexmaster

DBS Update

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Well folks, after my appointment with my MDS, it looks like my DBS surgery will either be just before Christmas, or just after New Years, depending on surgical schedules. Between now and then, I just have to get through three more appointments. One with my surgeon, one with the Neuro-psyc., and one with my PT. My MDS doesn't seem to think there will be any problems, and that I'm still an excellent candidate.

 

Todays Neuro appointment was an "OFF/ON" type. It was the first one we've done in a while, and the difference between OFF and ON was like WOW!. Although even with the L-Dopa, the tremors never really ever go away.

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Michael,

 

I want to wish you all the best and hope you have great results. But don't expect perfection. It's best to understand DBS's limitations.

 

For others reading this, you can see the before and after results of DBS at Mt. Sinai's web site:

http://www.mountsinai.org/patient-care/service-areas/neurosurgery/areas-of-care/center-for-neuromodulation/video

One of these (http://www.mountsinai.org/patient-care/service-areas/neurosurgery/areas-of-care/center-for-neuromodulation/video/deep-brain-stimulation-for-parkinsons-disease) is my next door neighbor. He had his procedure done last year. Perfect? No. But he can now function & live his life. Unfortunately, it's benefits don't last forever.

 

As for me, so far I've kept my PD in check and I pray that it stays that way. I get depressed when I think what will be if and when the Ursodiol I take ever stops working for me.

 

Fred

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Whoa, Michael, that spins my head...which doesn't do much for my balance issues!

 

Wow....I have processing problems, right? It is gonna take me a bit to absorb this....the date is set....!!! You will be Ho Ho'ing during the Christmas season....recouping on egg nog...that's not a bad thing!

 

Thinking always like a capitalist, I really wonder if you cd do a reality show and record the weeks before....and the weeks after...wow, it wd be great...I mean if Baby Boo Boo or whatever her name is can make big bucks, I would think you drilling two holes in your head would be interesting stuff...marketable...say, if you need an agent, I have a resume...yep...with Gaitum, we cd get a global premiere and everything!!! Look what happened to yay-hooooos who made a great duck call??? This could be your moment in time!

 

We should nail down contracts now...ya know...marketing to med schools, etc....I'll work straight commission...Tacoma has great independent producers...think about it.......

 

Seriously, buddy...my heart is with you.....and....ya know...I may be next in line....but I'm waiting to see "if Mikey likes it!" :) hugs to you and your DW.

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Well my PT assessment is tomorrow morning, that'll leave just two more appt.'s to go before surgery........ Personally, I'm hoping for a late Dec. date for surgery...........

 

Singing.................. All I want for Christmas, is my two brain leads.......................... 

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I'm just so freaking scared for you. I wanna be that friend I should be, but it is all happening so fast. Who will stay home with you 24/7?

I just wanna know details I guess.

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Other than maybe right after getting home from the hosp., I don't think I'll need someone home with me 24/7. Liz and Suzanne will both be there for surgery, and when I'm in the hosp., and will make sure I'm well taken care of after...... As to this happening "so quickly"? This is a path that started back in August, that is now coming down to the finish line.............

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Well today is my appointment with the Neurosurgeon. i'm exited, yet nervous, yet a bit scared.......lol So many emotions all wrapped up inside...... So yes, it's making my tremors go crazy.........

 

The end of the week I go in for a pre-op MRI, and on Dec. 8th is my Neuro-Psych appointment........ After that? Surgery......... I'll ask the Dr. today about the scheduling................ Things are all dropping into place........  and the big day comes ever closer.......... Hopefully before Christmas....................

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Well here's the report from the Neurosurgeon...........

 

We're good to go......... Seems I'm still an excellent candidate...... If we can get the Neuro-Psych appointment moved up, he'd like to schedule surgery for the morning of Dec. 4th....... (two days before my birthday), otherwise, surgery will be on Jan. 8th...............I'm voting for Dec 4th.

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Dear AB Normal,

You are an inspiration to all of us. My prayers are for your well being. Good luck and may each of us give you a bit of strength.

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Yay....we got ur back, buddy....you are going to SAIL thru this....woe on us when u r done....u will be championing the cause to us all....my experience in Phoenix...well....taking DBS more seriously....

 

Anxious to know which date....when will u know for sure?

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Micheal, First thing I just have to say is I really like your Fly Baby, it's pretty cool !  It sounds like things for you are moving smoothly forward. You know we will want to know all about it.

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Michael, 

 

This IS exciting news for you!  I have a friend who had her DBS within the past 6 months.  Everything went well and she is very happy!  I have another friend who had hers a couple of years ago and she is also doing fantastic.  They are both very happy they took the big step,

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Well I just got a call from the Neuro-Psych's office, seems they had a cancellation today. So my Neuro-Psych appointment is today at noon instead of Dec. 8th.  That was the last piece of the puzzle to drop into place in order to schedule surgery on the 4th of Dec.. I let my MDS know as well as my surgeon's scheduler...... so if all goes well, my DBS surgery will be on Dec. 4th, with the stimulator/battery surgery one week later....... interesting, my birthday is Dec. 6th...

Edited by AB-Normal

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Yup, just what I want for my 55th....... To get wired for sound...... Stereo even.....lol

 

The Neuro-Psych appointment went much better than I expected, I scored normal to above normal on everything except one. On the one, the Dr. said no problem, because I'd scored so well elsewhere........ <WHEW!>

 

I got home from the Neuro-Psych appt. and got a call from the surgeon's surgery scheduler. She called to tell me that she'd cancelled my MRI appt. tomorrow because the place where it was scheduled didn't have the correct coil, so it would have to be re-scheduled next week at the hosp., and that it shouldn't interfere with surgery on the 4th.

 

Less than 2 weeks folks.............. I'm getting a bit nervous............ 

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Getting a bit nervous is certainly understandable!!  I am assuming you have plenty of support there and, are you in touch with others in your area that have had the surgery that can reassure you when you have those questions that you don't want to 'bother' your Dr. with.  Basically learning about their experiences?

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AB Normal.....you are not nervous, you are excited!!!! Remember to tell me that when I am a week out from D-day!!:)

 

It is so cool you have met with Roger...and have seen the results of several years...like a decade...of success....of course, you have to overlook the fact that Roger lost his sense of humor somewhere along the way...but, hey, that pry was a result of living in DC .....and had NOTHING to do with holes in his head! (Ok, Roger, man up and smile, ok??? ) :):):)

 

So, post away, Michael...let us hear you chatter til the wee hrs in the morning...cuz we love,you and your stories...it will take your mind off it....and the day will be here...

 

(Oops, I just remembered, today, I was not going to tease my favorite cousin....hmmmm.just getting back atcha.......:) )

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Hey there Michael......

WOW... This all happened so fast. Wishing you the best outcome possible. What a Christmas gift this could be.

 

Will be thinking of you on the 4th and will toast to you!!

 

Can't wait to hear the details.....

 

Karen

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NN:

I know you've been wearing yourself out running around the DBS question for yourself. you've even said that you wanted to wait to see if "Mikey like it".........  Well last spring we had another poster, who was about to have DBS surgery, and another forum member posted a wonderful response about some friends that had had DBS, and how they had such a wonderful response............. When I read it, I thought of you, and that you just might find that post helpful in your own decisions about DBS.............. Here's that wonderful post:

 

 " I have a friend who had DBS in December, and she is very happy with the results. "Would do it again in a heart beat." Are her words. She can use a computer again, take walks, and generally her quality of life has improved 100%.

Yesterday, a massage therapist told me one of her clients had DBS four yrs ago. Was not able to travel then. Now, only has a slight tremor in one hand when tired."

 

I hope that you can see "yourself" in that post.........

 

Mikey............................
 

Edited by AB-Normal
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Ya caught me...those r my words....gotta put out some fires first...can't handle more than 1 crisis at a time these days.

 

But tremors are increasing, breaking thru, with tremors in my face .....yesterday before I went to church, I took my l dopa 2 hrs early plus 900 mg of Valerian root....tremors still broke thru AND I kept falling asleep! Haha..not so good when u r on front row....:)

 

Just like everything with PD you eventually no longer "choose" to try new course of action....the decisions are made for you ...DBS has a better record than agonists...altho, it bothered me that Dr Okun didn't know how many patients in his controlled study were alive after ten years...study didn't seem very controlled if you can't count how many people are still around...haha

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