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MurrayPD2

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I am planning a DBS in January and I am scheduled with my surgeon, so Medtronic gave me a call to meet with me and my wife.  I wasn't sure what to expect, but me and my wife got a lot out of the casual meeting at Starbucks. The man was very thorough and was able to go all the technical parts of the surgery.  I am glad everything was upfront and very honest.  It seemed more simple when the neurosurgeon explained it, but he was more interested in what I needed, now I know why.  I didn't know that the surgeon had a choice of GPI or STN based on what works best for your symptoms, but GPI is preferred.  STN has a potential side effect that agonists have and that is concerning since I don't deal with agonists well. I am wondering if I can find out beforehand what he wants to do based on my history and symptoms.

 

They want to put a non-rechargeable battery in and I think that's good news since my SCS is already implanted with a rechargeable and taking rechargers on trips or remembering to charge every week can be a hassle after a while (but still worth it). I also heard that Medtronic is about to release a major update to their DBS controllers that give them more options/abilities for treatment. This is in the next 1-2 years.  So, when I get a battery replaced in 3-5 years, I will be getting upgraded; which is nice.  Has anyone followed this Medtronic upgrade or know much about it? 

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 I also heard that Medtronic is about to release a major update to their DBS controllers that give them more options/abilities for treatment. This is in the next 1-2 years.  So, when I get a battery replaced in 3-5 years, I will be getting upgraded; which is nice.  Has anyone followed this Medtronic upgrade or know much about it? 

 

Heard about new leads with directional pulse in the works by another company.

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Heard about new leads with directional pulse in the works by another company.

 

St Jude is in clinical trails with directed pulse.   A friend has signed up, and will have surgery done in two weeks.

 

Irony is any clinical trial I've applied for hasn't been approved, due to cancer.  When you hear "it may cause..... " and they list everything out, that is why. So for Clinical Trials they do not want anyone who already has exisiting conditions (heart, cancer, etc) to avoid "may cause" 

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  I didn't know that the surgeon had a choice of GPI or STN based on what works best for your symptoms, but GPI is preferred.  STN has a potential side effect that agonists have and that is concerning since I don't deal with agonists well. I am wondering if I can find out beforehand what he wants to do based on my history and symptoms.

 

They want to put a non-rechargeable battery in and I think that's good news since my SCS is already implanted with a rechargeable and taking rechargers on trips or remembering to charge every week can be a hassle after a while (but still worth it). I also heard that Medtronic is about to release a major update to their DBS controllers that give them more options/abilities for treatment. This is in the next 1-2 years.  So, when I get a battery replaced in 3-5 years, I will be getting upgraded; which is nice.  Has anyone followed this Medtronic upgrade or know much about it? 

 

Rechargeable is smaller and lighter.  I had a chest implant, but that hurts moving around. Still pretty soon after surgery, but I really need the exercise.  Last thing I ever thought I'd say "I hope my sports bra arrives soon!".  Seriously order one before surgery. At this point if I can be more comfortable while working out, why not. 

 

Another souce: http://www.underworks.com/

They sell post opp compression shirts. Coach thought it would be too binding for workouts.

 

STN vs GPi.    Your MDS will specify location, Surgeon does placement. 

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Thanks for all the great feedback. 

 

Texas,

 

I will ask my MDS.  I just know the Medtronic rep told me the surgeon decides.  He also told me two holes in the head and two days in the hospital; while the neurosurgeon doctor (not the surgeon himself) who talked to me told me 4 holes in the head and one overnight.  So, it is a little confusing on the details of the process. 

Good point on the battery. They didn't mention that, but I think I remember hearing that on my SCS.    

 

miracleseeker,

 

I told them significant symptoms started in 2009, so I think that is what they are going from.   Keep in mind, by the time I was actually diagnosed, I had progressed a lot.  I am taking 11 25/100 C/L in the day and 2 50/100 C/L ER at night with 5 200mg Entacopone, and 3 100mg Amantadine.  Sometimes that is not enough, but my stomach can't take much more.  I have off times every day, and I will often sharply decline in my off times. When I was using agonists, I was not having serious off times and mild dyskinesia, but I could not tolerate them mentally... I had too many behavioral and irrational thinking issues.  This was my timeline:

 

2009-2010

- increased back pain and stiffness..  The serious back pain and constipation 2003, but hard to say if it was PD because I was born with a malformity where L4-L5 are naturally fused.  I had a back surgery in 2005, but had a major CSF leak. 

 

2010-2011

- the mild foot drag I had for years turned into a limp

- left arm was not swinging

- dizziness and fatigue

 

2011-2012

- couldn't lift left foot and more noticeable limp

- Noticed I was holding my left arm up a lot

- mild stooping forward (which hurt back more)

- flat face.  flat emotiions

- shoulders got stiff and painful

- years of stiff neck got worse

- trouble with buttoning and tying shoes

- left are weak and shaky

- postural tremors (I just thought it was a weakness sign)

- left hand dexterity getting bad... couldn't get keys out of my left pocket

- trouble holding it in before getting to the bathroom to urinate

 

2013

- got neck surgery

- resigned Navy Officer position to retire (unofficially due to medical and inability to fulfill physical requirements)

- strength came back, but not dexterity

- foot cramping at certain distance

- by the end of the year, I could barely do 2 blocks

 

2014

- got an SCS due to intense sciatica.  It actually helped me walk also.  I unknowingly used this as a crutch.

- hand getting worse and hard to type

- took about an 1.5 hours to get ready for work

- hard to get up out of chair

- couldn't lift left leg from sitting position

- stooping much more

- walking slowly and carefully

 

2015

- couldn't get my SCS to help me anymore

- walking became very difficult

- BP went up to 175

- driving became difficult and painful from stiff shoulders and neck

- in April, the stress of a business trip felt like a sudden drop.  I could barely get my left leg to move.  I could barely get in/out of bed. My left side made it too difficult.  I barely made It back home and could not walk the next day.  My son had to dress me. 

- Went to the hospital and, with bedrest and care, my walking improved each day.  Couldn't understand why.  The hospital thought I was crazy and gave me Cymbalta.

- Tried to go back to work, but the anxiety and stress was overwhelming and I had trouble walking again.

- couldn't sleep in bed at all, so I lived in the recliner; which I used to rock to be able to get up.

- Finally got diagnosed.  Immediately responded well to Amantadine while waiting for a DatScan.

- responded well to Neupro and later added dopamine to get my typing back and full mobility

 

2016

- agonists took its toll, had to get off

- painful left foot curling in usually between doses

- increased C/L

- added ER C/L at night

- increased  C/L again and had to shorten dosage interval times (2x)

- got nausea problems

 

I am at a pretty good level now and things seem ok.  I just think about my youngest (9) and, if I can support my kids and wife better, I will do what I can.  I think, with the history, that it is a pretty good choice.

 

 

I know there are two different ways of thinking "early" or "later".  I am more convinced to do it earlier and think I will benefit most now rather than later.

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Sorry about your history but I can't help but wonder if something better will be available soon that won't involve surgery.  I keep reading that people who had the DBS will have cognitive and balance issues.  Those are worse problems to have I think.

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Sorry about your history but I can't help but wonder if something better will be available soon that won't involve surgery.  I keep reading that people who had the DBS will have cognitive and balance issues.  Those are worse problems to have I think.

you are right. I don't want to add more problems.  the risks are a little scary and that is where it gets difficult to make the choice. The pre-screening test is supposed to identify those at high risk of cognitive issues getting worse with a DBS.

 

The balance issue is a worry, but I am hoping good programming will help that, if it becomes an issue.  Of course, there is always the option of turning it off.

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Murray,

You know best about what risks are "worth it" for you and the life you plan to lead.  Remember, spinal fusion was also a "bit risky" and yet that was exactly what you needed, no?  I had my C4-C6 vertebrae fused (with a titanium plate screwed in - just for fun) in Feb. and everyone was cautioning me about how scary and risky it could be.  Well, I had it done "out patient" - I came home that evening and enjoyed a beloved college basketball game on my own TV that night.  I went back to work in two weeks and yoga practice in four weeks. Point being, you know your body better than anyone else.  You've consulted great resources and I'm sure you will make a great decision with excellent results.  Here's wishing you all the best this Thanksgiving season and always.  Keep "us" posted - best.

LHG

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Thanks Lonnise, and thanks miracleseeker for both your heartfelt posts.  I really do appreciate the different views and inputs.  I am staying on the path now, but I am also making sure I don't miss a better option.  I will think about it more over this holiday.

 

I have found some natural resource help so far:

 

Ashwaghanda (sp?)

Co-Q10

multivitamins that target the MTHFR gene issue 

 

I am looking into TMS also : http://www.parkinsonalliance.org/news.php?ID=184.  A Neurologist wants to try this on my daughter, who has epilepsy and is struggling with medicine.  I was in a trial that was something similar to this and I think it provided some boost.  Hard to tell in a short time and no analysis provided.  

 

Then there are other theories to look into.  But, that can go on for years.

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I found some notes in my VA file that stated "Will plan for MRI and subsequent stage 1 BL STN DBS..."  I am hoping that is best for me.  I see different thoughts and risks out there on the STN vs GPI.   Is anyone convinced either way is better?

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I found some notes in my VA file that stated "Will plan for MRI and subsequent stage 1 BL STN DBS..."  I am hoping that is best for me.  I see different thoughts and risks out there on the STN vs GPI.   Is anyone convinced either way is better?

 

Either one, depends on what your MDS has had best results with.  For me it was Parkinsons and Dystonia, my MDS had done her seen many folks during her residency and felt for me GPi was the best choice for me.

 

Seriously I need six months to say how effective it is. Post op "brain swelling" was amazing. Three weeks of the honeymoon, and felt fantastic.  I'm still on little meds (3 x 25/100 & one night time 50/200 ER), but still working on votage and tremor control.  Somethings like my neck stiffness are just gone with DBS.

 

My battery seems to be staying put. Scar tissue holding in place, but doesn't bother me moving around. I did find a good solution for compressing against it, a sports bra! At least in the gym pounding the heavy bag no one cracked a joke when I start pounding the bag as hard and long as I can.  I can still move rapidly, DBS has made a difference as I am not freezing mid movement like I had been. So feels good to work up a sweat and pound that bag!

Edited by TexasTom
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Thanks Tom.  I have a battery in "upper buttock" region for a spinal cord stimulator. It hasn't bothered me much.  It is not sensitive at all, but after a couple of years, it can still feel a little weird sometimes.  It doesn't hurt, there is just this bump there like an extra bone. 

 

I am hoping my neck stiffness improves.  I am getting a little nervous about it, but I think it  is only human to do so.  I have jumped out of an airplane, dove from a high platform with a bungee cord, been in a war zone; but this is different.  This is a battle within our own brains and struggle for QOL.

 

You are brave to go to the punching bag with that struggle.  Then again, I am starting to get that attitude, "who cares what they think?".  PD seems to bring that out when you start to become a peculiar person to everyone who doesn't understand and I can't go around hiding everything.

 

Keep me posted.  Glad to hear you are doing well.

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