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graflexmaster

DBS Just Got REAL

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graflexmaster    1,182

Ok here goes........

 

A few weeks ago I made the following posts..................

 

Posted 31 July 2014 - 04:22 PM

Thank you Kim,

It's good to hear the other side of the coin. DBS is something that's been on my mind for awhile, and most info/stories one hears, are all about the up-side of the procedure. It's good to also hear the down-side. Not that it would affect any decision, but I'm one of those people that needs to know EVERYTHING, both good/bad, up-side/down-side before going in. My primary symptoms include Tremor, Bradykinesia, Balance, Dystonia, and speech problems. I know that DBS probably won't help the balance/stability or speech issues, but my understanding is that it would help with the tremors/bradykinesia/dystonia, and if it could do that? The rest would be gravy...........

 

and

 

Posted 08 August 2014 - 04:37 AM

Like NN I appreciate the details. The way things are going for myself, I'm sure DBS is in my future. How long? I don't know, but am thinking probably sooner than later...... So in the mean time? I shall sit back, listen, read, and learn....... Learn from those that go before me....... Learn from their experience.......

 

Let me begin by saying a HUGE thank you to Kim, Roger, CoachT , and others, for your frank, and raw honesty about DBS. I made those statements knowing that DBS was something that was in my future, but was somewhere down the road. In my mind I was picturing it somewhere maybe 5+ years in the future.

 

Little did I know how fast that future would arrive........

 

Fast forward to today. I was attending the "Partners in Parkinson" event here, and happened to see my MDS who was also attending.

Well we took some time to really discuss my Parkinson's outside of the "office". She was concerned about my experience earlier this week with the Mirapex, and wanted to discuss where to go from here. She told me she wanted my to call her office Monday and cancel my scheduled appt. in September, and have them reschedule it for her first available appt.. She told me she was not planning to be in the office this next week, but if the office had any issues or problems getting me in ASAP, that they were to call her.

 

Then she dropped the bomb. She asked me if I had ever given any thought to DBS. I told her that yes, I had, and that I figured it was something that was somewhere out in the future....... that I'd have to consider. That's when she asked me, "what about now?" That my friends is when DBS got REAL, really fast. I can still tonight see myself looking at her and telling her, "Let's do it".

 

So now the process has begun...... I started the day at the event with DBS way out at the edge of my thoughts, and ended it with the process toward DBS begun. It looks like DBS is not just somewhere out in my future, but rather in my NEAR future, as soon as we can get the preliminaries out of the way.......................

 

To say the least? I'm scared spitless......... I can't believe the time for it has come, I can't quite believe I said "Let's do it", but I am determined to go through with it...............

 

Anyone want to hold my hand??? Help walk me through this?????

 

Again, my heart felt thanks to  Kim, Roger, CoachT , and others, for your frank, and raw honesty about DBS. You have given me the strength to make this decision. I now humbly ask for your support in following through with this path I've chosen.......

 

humbly

 

Edited by graflexmaster

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Cindy L    89

Since I have not been diagnosed for very long, I have read about this but that is about all I know.  However, I will help and support you any way I can. I know we all will.   And of course, I will supply you with an endless supply of cookies.  Just let me know what kind and where to send them.

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New normal    1,275

Michael,

 

You analyze, research, and use good judgement. You have made the right choice for you at this time.

 

You go, buddy, with all the gusto that has been granted especially to you. Keep good notes...there may be a book deal in this... :) "DBS With a Belly Laugh...."

 

I will be there....and I will be here....we've got your back.

 

"We're OFF to see the wizard, the wonderful wizard of OZ!" Arm in arm...forum friends!

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It's a treatment--and, a good one--but, not a cure.  Go into it with this in mind and I have every confidence you'll do famously.  It's a process, by the time you get to the surgery, you'll be ready.

 

I remember, during my surgery, my neurosurgeon asked if I wanted to hear my brain--and, it sounded like snow! Quite lovely.

 

K

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christie    1,049

Good luck Michael !! We will be here, all the way...

 

DBS...yes or no, now or later? this is a big decision, and definitely one to make with your neuro.

 

From your description, your agreement seemed like an "impulse decision". just make sure this is what you really want at this time. 

 

Ask about the anticipated benefits. It's important to know exactly what to expect. About the experience of the surgical team. Post-operative details, including follow up programming of the device. Recovery time.

 

If-at any point- you start having second thoughts don't hesitate to discuss this with your neuro and possibly request some more time to reconsider.

Edited by christie
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TeresaJ    148

Like I said before, you don't do anything halfway, do you? Go, baby go! I'll have to come up with a better cheer. Like NN said, arm in arm, off to see the wiszard, all the way!

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TeresaJ    148

 

I remember, during my surgery, my neurosurgeon asked if I wanted to hear my brain--and, it sounded like snow! Quite lovely.

 K

Wow, Kim, that just blew my mind. I'll never forget that. Than You.

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graflexmaster    1,182

Thanks Kim, I'll take the treatment, and continue to wait patiently for the cure.......... (But I want it right NOW... lmao")

 

Christie,

No, it was not an impulse response, as I had been considering the possibility already, and started the research........

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Rocki    35

Michael

 

I'm so new to this but just to say "thank you" for all you've (unknowingly) done for so many of us and to tell you we will be with you in prayers and spirit.

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Drummergirl    97

Wow Michael!

 

Kick butt!..... your brave. You have a positive attitude going into this.

 

I'll be waiting to hear the details and thinking positive thoughts for you!

 

All of you that have had DBS. I admire your courage...me, I'm waiting for the pump....

 

Kim, It's a treatment not a cure.. True thoughts~

 

What about you Christie? Is the pump available in Greece? and if so, will you partake?

 

Karen

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christie    1,049

What about you Christie? Is the pump available in Greece? and if so, will you partake?

 

Karen

 

Hi Karen ! yes, the pump is available in my country. My neurologist has mentioned both duodopa and DBS as future options.  If I had to choose between DBS and duodopa I might go for the latter, mainly because it's  less invasive and with fewer side effects. That said, a major drawback of the pump is that it's inconvenient. Also, since there is no proof that neither duodopa nor DBS have any disease modifying effect, I would consider these options only when my symptoms are poorly controlled by oral meds.

 

PS: this is an interesting article on the duodopa debate (whether it should be used prior to DBS or not). http://www.acnr.co.uk/JA08/ACNRJA08_duodopa.pdf

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graflexmaster    1,182

The way I see it, is although the  Duodopa pump has been available in Europe for several years, here in the U.S., it seems to be the proverbial "Carrot" on the stick, always just around the corner.

 

Where DBS is available locally (hospital here in town), My own MDS will be part of the surgical team, and will handle the programing. It is relatively safe, with minimal complications.

 

There are a lot of other reasons for my choice, mostly dealing with quality of life issues, but basically, the tremors and other symptoms are becoming intolerable in many ways.

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Drummergirl    97

Hi Karen ! yes, the pump is available in my country. My neurologist has mentioned both duodopa and DBS as future options. If I had to choose between DBS and duodopa I might go for the latter, mainly because it's less invasive and with fewer side effects. That said, a major drawback of the pump is that it's inconvenient. Also, since there is no proof that neither duodopa nor DBS have any disease modifying effect, I would consider these options only when my symptoms are poorly controlled by oral meds.

 

PS: this is an interesting article on the duodopa debate (whether it should be used prior to DBS or not). http://www.acnr.co.u...A08_duodopa.pdf

 

 

Thanks Christie for the article. It certainly will not be an easy decision when the time comes.

 

Thanks Karen

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graflexmaster    1,182

UPDATE:

      I have an appointment with a MDS up at the University of Washington Hosp. for a second opinion to make sure I'm a good candidate for DBS (my Dr. said it's just a formality). They called and told me that the appointment. is Dec. 16th. I asked if there was an appointment any earlier, and the receptionist giggled. She said the only reason my appointment was that soon, was because my MDS did the request directly (MDS to MDS), and that they were booking everyone else out in late March/early April........... I was like WOW!! I'll take Dec. 16th and be HAPPY! thankyouverymuch................. I'd love it to be able to get through the process and have all my ducks in a row (not taped), and surgery scheduled by late winter............... of course, I'm not holding my breath.........lol

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graflexmaster    1,182

Well things are really moving forward. I have a PT assessment tomorrow morning prior to DBS, then just two more appointments to go, one with the surgeon, and one with the neuro-psych. Then it's all about scheduling the actual surgeries....... My Dr. was talking late December, or early Jan. Personally? I want the December time...........

 

All I want for Christmas? is my two brain leads.............and a stimulator box as well...... lol

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graflexmaster    1,182

Well gee, nobody told me I had to pick a designated poster............

I kinda figured, that I'd take my tablet with me, and post from the hospital, both pre and post surgery.......... Now if I could only talk them into letting me set my tablet up in the OR, positioned so the camera can capture a live feed of the operation............... Anyone want to watch????

 

<LIVE on the DBS channel>

We present for your viewing enjoyment.... Michael's brain.....  

Here we have Michael's brain <video> Here we have Michael's brain on DBS <video> and finally, here we have Michael's brain with chips and beer <video>.............. Any questions?  heeheehee

 

Remember kids, Friends, help Friends get DBS...........................

Edited by AB-Normal
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coacht    95

Michael,

I don't think you will be down from posting for very long, based on my wife's experience. It would be cool to have a video. The

second surgery for the leads and stimulator was more painful than putting the leads in. Have fun!

 

Coach T

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graflexmaster    1,182

I'm assuming the second surgery is more painful due to all the tunneling needed to install the wiring from the head to the chest????

Edited by AB-Normal

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graflexmaster    1,182

you know? when I was a kid, my dad would tell me that I needed something like another hole in my head............. I do believe that it's now time to collect on all that "stuff".........lol

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graflexmaster    1,182

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................

 

Wish me well.............

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