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Oakman

Evaluation tips?

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Greetings all. I am in Florida for my initial appointment to be evaluated for DBS. The DW and I live in a RV in which we have been touring the country the past two years.

 

I was wondering if anyone might suggest some questions and/or tips I might consider during the evaluation process. 

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Keep us posted Oakman, we're here to help if needed............

 

This group has already been a big help. I foresee much more.

Edited by Oakman

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Hmm... Ten quick questions, off the top of my DBS head...

 

1.   What criteria do you personally use to determine a good candidate for surgery? 

2.   Based on your criteria, am I a good candidate?

3.   My greatest Parkinson's related issue is _______________, will DBS help this?

4.   Do you plan on bi-lateral DBS and, if so, why--and, If not--why not?

5.   Do you plan on one battery (neurotransmitter), or two?  Please give me the reason(s) for your choice.

6.   Have you decided on STN or GPi placement--can you please explain the difference and why you have chosen the one you    have?

7.   Will you be giving me a remote control?  If not, why not?

8.   How many times have you performed this specific surgery and, what has been your success rate? (E.g., have any failed to be sufficiently beneficial as to have been determined ineffective or had to be reversed?  What is your stroke/major problem rate? May I speak to one or two of your previous DBS patients?) 

9.   Do you have a preference between so-called, "awake" surgery and, "asleep" surgery?  Please explain your choice.

10. After surgery, who will be doing the programming and (if not you) who shall it be and how much experience do they have?  

 

GOOD LUCK!

Kim

Edited by KimAgain

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I am having my neuropsychologist appt and my surgeon appt Tuesday,any thoughts or ideas that I should be aware of?

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Noah;

You'll come out of the neuropsych appt. feeling like you've just failed the test, and feeling rather stupid. Don't worry though, we all felt the same exact way.......... only to find out later, that we passed with flying colours..... As to the neuro-surgeon, I refer you to Kim's excellent questions above.

Edited by FlyBaby

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Kim have you had trouble finding tops that will hide the battery

 

Well, let me see... My battery isn't very prominent and, the scar is not all that obvious either, so I guess the answer to that question would be a qualified, no.  And, I would qualify it by saying that, currently I am wearing PJ's and a sweat shirt and, if you were to look very carefully, or I were to point it out to you, you'd detect the very slightest bump where the battery is.  I don't usually wear plunging necklines or low cut clothing, either, so I suppose that's why, in the years since I had my DBS surgery, only one person has ever asked me about the battery--and, that person was a nurse, who assumed it was a heart pacemaker!  

 

For the gals (and, men with breasts :oops: ):

 

On the subject of clothing, I would also add that a good, supportive bra (especially in the initial days post-op) is a must!  I'm not particularly busty myself (B cup), but I can tell you that, an unsupported boob pulling on your wires can, in the early days, feel like dead weight!!    

 

Regarding the trip home:

 

After surgery, I would highly recommend having a neck pillow in your car for the drive home--and, for post-op comfort sitting up or laying down.

 

Another suggestion:

It's a good idea to get one of those sit-up pillows (the kid with arm rests--they are available everywhere from Wal-Mart to Department stores), too, for post-op recovery.  In fact, for some time after surgery, I slept sitting up and the pillow was an invaluable tool for such a purpose.  

 

How did your neuropsyche appointment go, noah?

 

Kim

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Actually it went really well. She told me I passed. The biggest challenge is getting the MRI. My best time is the am so I had it scheduled. At 7:30. I am closterphobic so they gave me a little Valium. I took it as prescribed and when I got there was told the machine wasn't working so I had to wait. So I waited for 45 minutes and the tech finally came to get me.i was nervous to begin with so between that and having to sit around in that lovely gown I was too wiggles for the test pictures weren't coming out. I live 1.5 hrs away so the doc suggested trying it in the afternoon. Afternoons aren't good for me so again I was to wiggly to have the test done. I am going to try again Friday am with something a little stronger.

When I get nervous I wiggle I sure hope it works

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Noah, your MRI story sounds way too familiar!  Mine was scheduled in pm and ended up waiting over 1 1/2 hrs. at which time I was starving and nervous and had significant tremors.  This was after taking Ativan.  The next time I was scheduled for an MRI my neuro wrote the order MRI with anesthesia .  This time it was ok.  How they expect someone with PD who has tremor to lie still is beyond me. Micki

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Glad to hear I am not the only one. The tech made me feel like it was my fault. Well I wil try it one more time then i am going to ask them to knock me out!

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Before DBS, I had the same MRI debacle myself!  My tremor was so bad, my husband ended up sitting on my leg to hold me still...  Looking back, if I had it to do over again, I'd ask to be knocked out--even if you don't think you are nervous or feel nervous, your body knows the truth!  

 

 

Glad to hear I am not the only one. The tech made me feel like it was my fault. Well I wil try it one more time then i am going to ask them to knock me out!

 

Some health care professionals do tend to leave one feeling as though one is extremely high maintenance, or else a complete neurotic.  When and where it is appropriate, I try to take the time to explain my issue(s) but, sometimes, my words either fall on deaf ears or else, a disinterested mind.  However, generally speaking, I have noted that, if a person is compassionate and interested, they articulate this by not only being willing to listen, but also by engaging in a proper dialogue with me--in short, they ask questions and show interest in the answers.  For the most part, I find the latter to be the rule rather than the exception.  

 

So, if you, at any time noah, have dealings with anyone in the healthcare profession who treats you with anything less than dignified respect, ask--where possible--to be treated by someone else.  Nobody should have to suffer the indignities of this disease and a less than caring healthcare provider.    

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Kim, I wish I had had that list of questions when I began this process a year ago. Might have helped me decide DBS was not for me.  Tremors don't seem to be a problem for me. Gait/walking is my issue and DBS just isn't helping. I have spent the past 10 months trying various settings combined with and without meds. I'm close to deciding on having the battery removed. It isn't helpful for my symptoms and it is very uncomfortable at night. When I sleep on my side or turn over the battery changes position, sometimes gets stuck sticking out and is just not a pleasant situation.  I have so many questions.....

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Kim, I wish I had had that list of questions when I began this process a year ago. Might have helped me decide DBS was not for me.  Tremors don't seem to be a problem for me. Gait/walking is my issue and DBS just isn't helping. I have spent the past 10 months trying various settings combined with and without meds. I'm close to deciding on having the battery removed. It isn't helpful for my symptoms and it is very uncomfortable at night. When I sleep on my side or turn over the battery changes position, sometimes gets stuck sticking out and is just not a pleasant situation.  I have so many questions.....

I'll be frank...

 

The first three years for me, the results were so-so.  Long story, but then I started seeing a different neurologist and he changed my settings completely.  Things were rough still for a while, but then... I finally, consistently, found my "sweet spot."  

 

Perhaps, maybe, you should give it a little longer?  If you'd like to call me, email me (address below) and, I'll give you my number.

 

Kim

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Oh, and, regarding the battery migration thing...

 

My surgeon told me that, until scar tissue builds up and "locks" it in place, it will feel like it is migrating (and, in some cases, does actually migrate--requiring surgery), but that takes a long time.  For me, it took about eighteen months to really feel like it was stable.  

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That is interesting Kim, because my battery has felt stable, and hasn't moved since day one. It just sits there just under the skin.

 

It's funny, Michael, because the nurses kept telling me, when I went in for the battery surgery, that the "hard part" (the brain surgery part) was over and the battery part was the "easy" bit--because, I presume, it would be done with me under general anesthesia.  Well, I can tell you, for me, the battery surgery was far and away a tougher surgery than the brain surgery!!  Why?  Because the battery (in me--maybe not in everyone--I honestly don't know) was placed under muscle so, post operatively, it was immediately very painful and stayed that way for a long,  long time!

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I wish I had had that list of questions when I began this process a year ago. Might have helped me decide DBS was not for me.  Tremors don't seem to be a problem for me. Gait/walking is my issue and DBS just isn't helping. I have spent the past 10 months trying various settings combined with and without meds. I'm close to deciding on having the battery removed. It isn't helpful for my symptoms and it is very uncomfortable at night. When I sleep on my side or turn over the battery changes position, sometimes gets stuck sticking out and is just not a pleasant situation.  I have so many questions.....

 

sbealor, My most troubling symptom is also gait/walking. Did your gait/walking issue respond favorably to levadopa prior to DBS? 

Edited by Oakman

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Mickirose

could you give me an idea what getting the MRI under general is like. B/C guess what it wasnt clear enough so I need to go back.

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