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Oakman

Oakman's DBS Adventure

36 posts in this topic

Just got notice of DBS approval and want to start a thread following my journey. This forum has been very helpful to me in dealing with PD and so wish to make my contribution in return.

 

First noticed symptoms in 2004 at the age of 50, with initial dx in 2006. That neurologist (vascular speciality) said I would be bed-ridden in 10 years. After some two years of ineffective treatment I struggled on my own before seeking out a MDS in 2012, and then finally having an "on" period from medication. My Sinemet honeymoon lasted almost three years. 

 

 My MDS began suggesting DBS in 2013, but with the meds still working well, I rejected it. He would mention it every visit without really pushing and I now feel he was just warming me up for when the time was right. When the honeymoon started to fade early last year, I indeed was receptive to the procedure.

 

I should mention that DW and I sold our house in 2013 and began traveling the country full-time in a rv. This proved helpful in easily locating near a desirable DBS center 1,000 miles from our hometown. I consider myself very lucky to have this luxury.

 

The DBS evaluation period lasted longer than expected, with the initial exam in early October 2015 and having been approved in late Feb 2016. I should be notified of the actual surgery date on March 1st.

 

As has been said, the most stressful part of the actual evaluation process was the half-day psychological testing. Brutal. The second most stressful aspect was waiting for the final decision. I am not yet nervous, but expect that to change as the surgery date draws near. I will be getting a unilateral GPi to address rigidity, tremor and bradykinesia. I also am hopeful for an improvement in gait as Sinemet helps with that symptom.

 

Oh yeah, that first neurologist was wrong. He probably meant I would be bed-ridden in 10 years had I remained under his care.

 

To be continued... 

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Hi Oakman!

 

You have to love doctors that do not know what they are talking about!  Seven neurologists and not one correct dx for me!  I am grateful for each one as they have affirmed being your own advocate is paramount!  My current MDS is fantastic.  It was worth the seven years, all the unaware doctors and the frustration that the misdiagnosis's caused.   Not that I would wish this on anyone!

 

I just had my DBS surgery on January 28th and the regulator placement on February 11th.  I will "be turned on" this Tuesday, March 1st!  Both surgeries went very well.  I was "awake" for the lead placement.  The only pain I felt was from the head frame and the killer headache.  My surgery was about 6 hours after a 90 minute delay (my neuro was the on call doctor that day and a man, who was served a warrant by the DEA that morning, shot one of the DEA agents and the attempted suicide a few minutes later..... DEA agent will heal and the attempted suicide did not make it, not that any of this can be confirmed... :o) )   and was able to go home the next day.  Aside from looking like Franken"queenie" and having  the mange I am really hopeful for Tuesday.  The surgeon put in the PC regulator and I hope the have the other side completed this summer as I would really like hair for Christmas!

 

The path can be a very long and stressful one.  I am personally looking at the process taking me a year to fully heal,  (It also does not help that I have had 5 pretty intense surgeries in 3 years.) adjust my meds and hopefully have a fresh start at life.  I know that PD is now my lifelong "buddy," but I also remain hopeful that the dystonia will diminish, the rigidity will only visit on  the hardest of days, and the many other symptoms will ease, not vanish, and that I will have the ability of learning what my "new norm" will be.  I feel very lucky as I know PD is hard, even on the very best of days. (I just had a maternal uncle die from LB, another maternal uncle in a full time care facility with PD and my sister also had PD.)

 

Some side notes:  I just added up my bills from this last month and it appears that my surgeries will come to about $140K, in MN.  I wish I knew just how much the regulator would hurt when I try to cross my arm over my chest to put on deodorant.  And that I should have just shaved that half of my head! 

 

Oakman, I understand how you are feeling.  I still see the concern in my family and friend's faces as I continue to heal.  But there are great people here, on this site, that will walk with you along this path.  This forum is what helped me to decide that DBS is the correct choice for me.

 

Hang in there and good luck Tuesday!

 

Sincerely,

Don't Ya Know

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Surgery is scheduled for mid July with module to be implanted in August. I am surprised, and disappointed, that this process should take 9 months from the initial visit. It's going to be a long wait.

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For what it's worth...

 

I had DBS surgery 7 years ago and, from my experience, I can tell you DBS is a "process" more than a "procedure" and it often takes a Herculean amount of patience and trial and error to achieve optimal results.  Moreover, Parkinson's is a progressive disease, so it can be like playing, "pin the tail on the donkey" at times.  But, if you hang in there, manage your expectations, and listen, listen, listen to your own body--in time, it becomes second nature and, therefore, becomes easier and easier to cope with.

 

Good Luck to all,

Kim 

Edited by KimAgain
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Kim, your forum contributions on DBS have been very helpful in my decision to undergo the procedure process. I appreciate hearing both the pro's and con's of your DBS expreience.

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For what it's worth...

 

I had DBS surgery 7 years ago and, from my experience, I can tell you DBS is a "process" more than a "procedure" and it often takes a Herculean amount of patience and trial and error to achieve optimal results.  Moreover, Parkinson's is a progressive disease, so it can be like playing, "pin the tail on the donkey" at times.  But, if you hang in there, manage your expectations, and listen, listen, listen to your own body--in time, it becomes second nature and, therefore, becomes easier and easier to cope with.

 

Good Luck to all,

Kim 

All I can add to that?? is a big AMEN!!!!!!!!!!!

 

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Hi Oakman!

 

You have to love doctors that do not know what they are talking about!  Seven neurologists and not one correct dx for me!  I am grateful for each one as they have affirmed being your own advocate is paramount!  My current MDS is fantastic.  It was worth the seven years, all the unaware doctors and the frustration that the misdiagnosis's caused.   Not that I would wish this on anyone!

 

I just had my DBS surgery on January 28th and the regulator placement on February 11th.  I will "be turned on" this Tuesday, March 1st!  Both surgeries went very well.  I was "awake" for the lead placement.  The only pain I felt was from the head frame and the killer headache.  My surgery was about 6 hours after a 90 minute delay (my neuro was the on call doctor that day and a man, who was served a warrant by the DEA that morning, shot one of the DEA agents and the attempted suicide a few minutes later..... DEA agent will heal and the attempted suicide did not make it, not that any of this can be confirmed... :o) )   and was able to go home the next day.  Aside from looking like Franken"queenie" and having  the mange I am really hopeful for Tuesday.  The surgeon put in the PC regulator and I hope the have the other side completed this summer as I would really like hair for Christmas!

 

The path can be a very long and stressful one.  I am personally looking at the process taking me a year to fully heal,  (It also does not help that I have had 5 pretty intense surgeries in 3 years.) adjust my meds and hopefully have a fresh start at life.  I know that PD is now my lifelong "buddy," but I also remain hopeful that the dystonia will diminish, the rigidity will only visit on  the hardest of days, and the many other symptoms will ease, not vanish, and that I will have the ability of learning what my "new norm" will be.  I feel very lucky as I know PD is hard, even on the very best of days. (I just had a maternal uncle die from LB, another maternal uncle in a full time care facility with PD and my sister also had PD.)

 

Some side notes:  I just added up my bills from this last month and it appears that my surgeries will come to about $140K, in MN.  I wish I knew just how much the regulator would hurt when I try to cross my arm over my chest to put on deodorant.  And that I should have just shaved that half of my head! 

 

Oakman, I understand how you are feeling.  I still see the concern in my family and friend's faces as I continue to heal.  But there are great people here, on this site, that will walk with you along this path.  This forum is what helped me to decide that DBS is the correct choice for me.

 

Hang in there and good luck Tuesday!

 

Sincerely,

Don't Ya Know

Don't Ya Know-

Where did you have your surgery, and where does your MDS practice?  I'm in Minneapolis, but go to Mayo.  Love Mayo, but am Meh on my MDS.  Could be me, jury is still out.

Edited by Waywrd1

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Don't Ya Know-

Where did you have your surgery, and where does your MDS practice?  I'm in Minneapolis, but go to Mayo.  Love Mayo, but am Meh on my MDS.  Could be me, jury is still out.

Hi Waywrd1,

 

My MDS is Sotirios Parashos at the Minneapolis Clinic of Neurology, the office is in Edina off of France by the hospital.  It took me seven neuros to find this incredible doctor!  He listens, observes and forgets nothing!  He also is at the Struthers Parkinson's Center in Golden Valley. My opinion is Meh concerning Struthers, they constantly change appointments; but my DBS nurse is AWESOME which is a good thing since this is where I have to go for my DBS.  My neurosurgeon is Jon McIver at HealthPartners Specialty Center in St Paul, does surgery at Regions.  I LOVE both of these doctors.  They are not arrogant, listen, have patience and treat me like a human - not a test rat. I hope this helps you.

 

Don't Ya Know  

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It is very helpful, thank you!  My MDS at Mayo is an interesting situation.  He's very introverted, and well, I'm not.  I'm pretty sure that I intimidate him for some reason.  When I told him that my job was very similar to what a medical chief of staff does, he reared back and away from me in his chair by a good two feet.  Clearly, I struck a nerve. 

 

He does listen, but doesn't want to have the same discussions I do, nor do all of my concerns make it into my chart.  (Love, love love mayo's online chart, which allows you to see the visit notes as soon as they are posted to the system.)  I've mentioned a serious weight loss at the last 4 visits, of 15-18 pounds since starting sinemet at the end of January.  I find it strange that weight loss in excess of 10% of my body weight hasn't made it into my chart yet, and he said flat out that he's never seen that happen and it couldn't possibly be YOPD related.  Um, hello.  5 minutes on PubMed with Dr. Google says otherwise.  (In fact, the latest research says it's really bad!)  GGGGRrrrrr...

 

I'm going tomorrow at Struthers, so I will report back.

Thanks again!

Edited by Waywrd1

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Hi!

I'm sitting here in the middle of July thinking about Oakman's surgery. You can do this!

 

I had GPI DBS on March 10th of this year with the battery pack put in on 3/22. That puts me about 4 months out.

 

I am grateful for Kim's wisdom as I too have realized that DBS is a process rather than an "event." I made jokes about becoming a cyborg and had everybody focused on that first surgery...but it's so much more!

 

The second surgery was more invasive, thus more of...everything!

 

I had my 4th programming appointment yesterday and I think we're on to something good here. However, I'm still trying to manage my expectations and think 6-9 months until it's all finely tuned...which will last for 20 minutes and then  the dance goes on.

 

I've had a couple of moments where I asked myself if it was worth it. I say YES!

 

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Waywrd1... Stay away from Dr. Google. :)

 

I started off pushing 300#. At 6'3" it was way too heavy, but lots of things like slowly down and not feeling comfortable walking in the evening took it's toll.  With Sinemet first year I was down to 270# (January '16) when I had lung surgery due to cancer.    Six months later, down to 250#. I still think it is the tremor that is burning up energy, and taking meds though out the day has limited any snacks.

 

My MDS isn't concerned about weight loss. My other doc's all commented normally not good, but makes sense as I have been working out with Rock Steady Boxing.   I've done a two mile walk in the morning, after morning meds. Mornings are my best time, and with my Golden Retriever helping set a pace, decent walks (about 40 minutes, so 20 minute mile). Huge improvement as I had stopped walking due to falls.

 

Just hope post DBS  I don't gain everything back!

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Well, stage one is done. A single lead placed in my GPi. It took three tries to find the spot. The lesion effect is still working, as my symptoms have mostly disappeared. It is wonderful, but told it is temporary. I am taking 3 Sinemet a day compared to 8 per day before the surgery. Don't even need the three per day right now.

 

Placement of the head piece was the hardest. Took me a minute to recover after the injections. Almost fainted.

 

Procedure lasted 3 and 1/2 hours. Mostly drilling of the head hole open and closing. Good headache the first 24 hours after.

 

Now waiting for next month when the generator is placed and fired up. 

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Well, stage one is done. A single lead placed in my GPi. It took three tries to find the spot. The lesion effect is still working, as my symptoms have mostly disappeared. It is wonderful, but told it is temporary. I am taking 3 Sinemet a day compared to 8 per day before the surgery. Don't even need the three per day right now.

 

Placement of the head piece was the hardest. Took me a minute to recover after the injections. Almost fainted.

 

Procedure lasted 3 and 1/2 hours. Mostly drilling of the head hole open and closing. Good headache the first 24 hours after.

 

Now waiting for next month when the generator is placed and fired up. 

 

 

Congratulations, Oakman, You made it ! Keep being patient for the programming part.

 

Mireille

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Last Friday I underwent surgery to place the pulse generator and connecting wire for my DBS procedure. The surgery went well, taking about 3 hours, with another hour for recovery before being discharged. My first programming was yesterday.

 

I don't want to jinx anything, but my results so far are just about perfect. The earlier results from part I surgery were also promising, but as expected, faded over the following weeks. By the fifth week, dyskinesia was the only symptom that hadn't returned. Now, since Fridays part II surgery, I am again almost completely free of symptoms. My gait, balance, stiffness, slowness, and facial mask are gone. I can barely believe it. My wife still can't believe it. I notice I still have an occasional hand tremor, yet can easily stop it when noticing it.

 

 A Medtronics rep set up an initial setting for my device Friday, but insisted it would be only at a minimum setting. At the first programming session yesterday I was unmedicated, and never did take my meds for comparison. She focused on the pulse direction from the lead, giving me a few options to choose from. With a new setting I noticed only a slight difference in gait, a kind of stutter if you will. I did get her to leave the original setting in there since it worked so well. I went from 8 carb/levadopa tablets to 4 per day. I was told that this is needed for stability in emotions.

 

So, that's where I'm at. I really didn't expect things to be this good. I consider myself very lucky. I am prepared for things to worsen, for the simple reason that they can't get any better. And I kind of feel guilty relaying this, because I know that many of you haven't had the same good fortune. However, it is more proof that DBS can be highly effective in treating Parkinson's symptoms and offers real hope for selective candidates.

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Oakman,

 

Your experience is the same as my DW's. You are correct that things will progress, she lost her smile again after about 10-12 months. It is not as masked as before yet. Her dystonia has returned somewhat and the settings need to be changed again. In my estimation she gained seven years physically from the DBS as far as the symptoms addressed. Breaking her ankle late last fall has really set her back.

 

Glad to hear the good news,

 

Coach T

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Oakman,

    Just read your journey dialog and I am very happy for your results to-date. I read some very positive things that I had heard could happen with DBS. And so far they seems to be accurate for you.

 

Now after some anxiety, I am more looking forward to my journey to start. I know every patient is different, different symptoms, different result. But hopefully with some prayer, I will be better off too.

 

I am 63. Diagnosed Jan 2006.

I am more of a freeze patient than a tremor. I'm like a sloth went I am off.

Responded very well to Sinemet, and as usual it wore off over time.

2010 was accepted for the Duadopa clinical trial.

When I started using the pump, I felt like I had beaten PD. Always on and good quality.

By 2014 wearing the pump was becoming more annoying than helpful and my weight dropped from 155 to 120. I never weighed more than 175 in my life, so I've never been heavy.

So April 2014 made the decision to leave the pump and have been back on pills since.

I take 3 (25/100) Sinemet pills every 2 hours. Yes you read that correctly.

So I basically live now in 2 hour sections as long as the pills last.

It was working okay till earlier this year when I seemed to get ok results but for a shorter time. And as expected I have dyskinesia some evenings. I do shuffle when I'm off and in-between doses sometimes. BUT I TAKE TOO MANY PILLS

So looked into DBS. Read positive results are possible.

 

Had ON-OFF meeting April 27.

Neuro-Psycho exam May 28

Was informed I was a good candidate Mid June. And now we are waiting the day.

 

9/15 Pre-Op with PCP

9/19 MRI

9/26 Stage one Leads implanted on both sides. Medtronic devices

10/3 Wires and stimulator implants

10/14 Programming setup (we go live)

 

And I have heard that sometimes just the lead implants alone can have a positive effect. Yours seem too. Got my fingers crossed.

 

I really have  a few goals.

 

1- Less pills and not as often.

2- Dyskinesia goes away 

3- I can sleep through the night

4- Stay on and shuffle goes away.

 

I didn't realize how selfish this on looks after reading it over.

But it felt good to let other PD patients know.

 

Will keep you up-to-date if anyone wants.

Wish me luck

 

Mike

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Mikeincincy, you definitely have more on your plate than I did. Best of luck to you. 

 

My DBS results are remarkable and I still count my blessings, although doctors and nurses continue to temper my enthusiasm. I was told of a possible 2 week "homeymoon" after surgery, but even the programmer cautioned me not to get too excited during my first session, which was 6 weeks after surgery. Still doing great on the original setting by the Medtronic rep. I've tried two other settings: one a little less effective and another absolutely useless.

 

I understand the idea of down-playing outcomes when talking about DBS and debated whether to relay such good news myself. If someone decided to get surgery because of my experience and then didn't see results, or worse, a negative outcome, I'd feel terrible. But then again I've read where people don't want to post negative results on this forum in fear of scaring people from the surgery. I figure that brain surgery is about hope anyway. and we should just share our truths, whatever they may be. YMMV.

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As has been said, the most stressful part of the actual evaluation process was the half-day psychological testing. Brutal.

 

I just went through DBS evaluation this morning. I spent three hours there! 

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Well, tomorrow is my second programming appointment and it seems a good time to update my DBS adventure. To recap: DBS is unilateral GPi performed on July 13 with pulse generator installed Aug 19.

 

First, the bad news is that my lovely "honeymoon" period has finally diminished enough to affect my gait. For almost 8 weeks I did not notice any off time, but now my "foot flop", though minimal, has returned to indicate my off periods. The good news is that is the only symptom that has noticeably returned.  I have increased c/l to where I am now taking about 3/4 the amount prior to DBS.

 

Also, I am having occasional, minor headaches, perhaps once a week. Aspirin works. Headaches prior to DBS were almost nil. And the area behind my ear where the connecting wire runs is still a bit sensitive if I lay on it. Probably something I will have to live with.

 

Now the good news. While c/l dosage is less than it used to be, it still is an amount that used to cause dyskinesia, which I have yet to experience since DBS. PD stiffness/rigidity is not noticeable at all. I do still have some morning stiffness, however it is age related as it goes away with simple morning stretches. Bradykinesia is greatly improved, to the point were my Tai Chi routine is as smooth as it was 20 years ago. 

 

As far as programming, I am still using the original setting given by the Medtronic rep at surgery. I tried three other groups, one of which was only slightly less effective, one that seemed to do nothing, and one that created increased tremor and toe curl. I have played with voltage levels only slightly, but have yet to notice any differences.

 

I should mention that I am participating in a trial study where a computer program is used to interpret results and establish settings for the pulse generator. My human programmer competes with the computer and is strictly limited in the time she can devote to establish settings. I am curious to see what I get in tomorrow's session.

Edited by Oakman
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Well it's been a while, and since I'm right in the middle of my journey, I'd thought I would put a word out. Besides, it will probably feel good to express how I feel.

 

Today is Friday 10/7.

 

I had stage one on Monday 9/26. May have been the hardest thing I have ever done, because I takes Sinemet every 2  hours, and we were into our 4th hour. My off time was very uncomfortable and anxiety was everywhere. That evening (at the hospital) I did feel the need for less pills, which let met sleep more through the night. And the next day was better than normal.

I don't know if I had a short honeymoon period or the anesthesia wore off but I started feeling bad, off. I think I was taking less of a dose than I should.

 

Monday 10/3 go in for stage 2. I actually felt a little wheezing in my deep breathes the day before. But I had to be there at 5:30 AM Monday so just let it ride. Had a slight fear that they might listen to my lungs and not proceed, But they let things go on. After about a 2 hour surgery I woke up with more staples in my head from where he join the wires and fed them down my neck. And being thin 5'11' 135 there was a tightness around my stimulator on left chest.

It was a very uncomfortable night but only had 1 bad night.non

 

The next day still wheezing went and saw my PCP on Wednsday. He had me get a chest X-ray and blood draw, expecting Bronchitis. The next day he sent the report to me stating the blood showed an infection and pneumonia in right lung.

Geez, I had to go to a hospital to get pneumonia.

 

On Mucinex and antibiotic. Doesn't quite seem fair. I go in next Friday 10/14 for programming and I don't even know if the things works or not.

 

Wish me luck.

Oh yea and 10/10 is my birthday.

:-P

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Sorry to hear about the lung infection, Mike. Did they give you a plastic tube/contraption to blow into after the first surgery?

 

Best of luck healing and on the programming. 

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