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WindsongMoonChild

4-Year DBS Follow-up

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coacht    95

Kim,

Thanks so much for your post. My DW is having surgery next week and it is good to know all of this going in. She doesn't tolerate pain well so your description of a year to feel normal is good to know. My DW thinks everything will be roses and told the pharmacy she will not need meds after the surgery. Some confusion from the artane. I hope they give the steering wheel to me since I do not trust her. :) Her sister and mother were probably going to come down following surgery and I think it would be a good thing

from what you have posted. She will need someone with her and I need to work since I am self employed.

Coach T

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Kim,

Thanks so much for your post. My DW is having surgery next week and it is good to know all of this going in. She doesn't tolerate pain well so your description of a year to feel normal is good to know. My DW thinks everything will be roses and told the pharmacy she will not need meds after the surgery. Some confusion from the artane. I hope they give the steering wheel to me since I do not trust her. :) Her sister and mother were probably going to come down following surgery and I think it would be a good thing

from what you have posted. She will need someone with her and I need to work since I am self employed.

Coach T

 

 

I've often wondered if low pain tolerance is a PD issue, because I've heard of many Parkies who have very low pain thresholds.  (You  watch, now ten people will post that they have Herculean pain thresholds!!) 

 

I have to say, I think it would be a very good thing to have someone with her--most especially on the day the DBS is switched on.  Pain, at that time, was not so much the issue in my experience, but--and, again, I speak only for myself--sometimes, when I have an adjustment, I get suddenly and unexpectedly emotional.  In fact, even when I make an adjustment myself, sometimes I suddenly burst into tears for no reason.  I find it so embarrassing that, eventually, I mentioned it to my MDS.  His response, "very common, very normal, nothing to worry about, we pay it no mind."  Well!  And, there I was, feeling like an overly emotional girlie girl!  These little bursts of emotion (sometimes tears, sometimes a sort of euphoria) last only a wee while, but they can be quite disconcerting.

 

The one thing I cannot stress enough is that, for me, often, I cannot really know just exactly what the long-term ramifications of an adjustment are, until several days after it has been made.  I have walked out of an appointment positively glowing with joy at the improvement an adjustment has made... only to limp back into the doctor's office four days later, all but crippled from over tweaked muscles.  One time, an adjustment caused pain to run from my back, all the way down my leg, and my big toe pulled under the adjacent toe until the pain was intolerable.  I struggled with it for weeks, but finally went to my MDS who, right away, assigned my symptoms to sciatica.  Well, I knew the problem had started within two days of my adjustment and I knew that the problem was over-adjusted muscles, not a sciatic nerve problem, but it took two more visits to my MDS to convince him that it was a back/leg/foot problem brought on by my DBS, not a back problem I'd developed either from exercising incorrectly or else being too sedentary.  When I finally got him to stop giving me flyers on how to exercise to avoid back injuries and, instead, tweak my DBS again, within two days, my back stopped hurting, my toes stopped pulling, and the limp I had developed went away.  

 

Another time, the day after an adjustment, I developed pronounced dyskinesia in my right arm and head.  It was really quite worrying.  Then, on a hunch, I searched the internet for "DBS induced dyskinesia" and, sure enough, I found it.  I immediately went back to my MDS and the problem was tweaked away that day.

 

So, here's the thing, DBS is not an exact science and we should not expect it to be.  But, so long as we remember to keep that in mind, are prepared to be patient and deal with each little bump in the road as we encounter it, we can I believe, generally do well.

 

I'll be looking for an update on your DW!

Kim

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New normal    1,275

Kimagain,

 

Wow, what a great read....I appreciate the details, and the raw honesty....DBS may be ahead for me....thanks, girl, for posting, but even more so for having the courage of a pioneer! You are my hero.

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graflexmaster    1,182

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.......

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coacht    95

Kim,

Thanks so much. I know that from now on I "have" to go to all of her appointments. I doubt if the doctor will give her the steering wheel, but is more likely to give it to me with my background. I had someone else talk about the crying with the adjustments, I

guess PMS has prepared me somewhat for that :) Dystonia is her main problem and it will be interesting to see how that plays out

and hopefully improves.

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Kim,

Thanks so much. I know that from now on I "have" to go to all of her appointments. I doubt if the doctor will give her the steering wheel, but is more likely to give it to me with my background. I had someone else talk about the crying with the adjustments, I

guess PMS has prepared me somewhat for that :) Dystonia is her main problem and it will be interesting to see how that plays out

and hopefully improves.

OUCH!!!  Coach!  PMS?!!  Well, in my case, it's more likely to be menopause than PMS, but still...  I can see you must have some BIG TV remote control wars in your household!

 

Joking aside, I have noticed that different doctors have different attitudes toward the remote control thing...  My Vandi specialist encourages me to "tinker" until I find the sweet spot.  My local MDS, however, is always cautioning me not to be "adjusting it up and down too much," to wait, essentially, to give the new adjustment chance to settle in - although, in recent years, I have noticed he's learning to trust my judgement more on that front, which is very helpful.  

 

The thing with the remote is, they give you safe perimeters, so you can't fry your brain by adjusting too high or too low--you get the little T-looking symbol that tells you when you've reached the max you can go in either direction.  But, common sense tells me that it can't be good to keep changing settings willy nilly!  Also, there is the DBS's capacity for at least one alternate setting (in my case, I have an A & B), but if the two settings are completely different (here we get into things that are the purview of smarty pants such as my husband--an engineer--voltage, amperage, and so on), changing from the A setting to the B, can cause a bit of an emotional and/or physical meltdown.

 

To give you an example...

 

A couple of years ago, my local MDS had programmed the A setting and my Vandi doc the B.  Well, I was, at that time, having no end of troubles my DBS adjustments, with twisting feet and the resulting numb toes and pronounced limp that went along with them (always seems to be the same issues with me)--so much so, that I called a friend and asked her to come and sit with me because I was going to try to switch over to see if the B setting would be better.  I had never done this before and the B setting was, (because they'd been pretty much just refining the A setting for months), essentially a "dormant" program.  But, my husband was out of town, I was taking pain pills and muscle relaxers like it was going out of style trying to get relief, so I was willing to try anything.  It was a Sunday and I thought I was being pretty cautious... I switched the DBS off completely and, together, my friend and I waited for an hour chatting happily and quite calmly.   Then, I switched on the B setting...

 

Hooo Boy!  Did I ever have a meltdown!!  I suddenly felt emotional and panicky and I started sobbing uncontrollably and my friend didn't know what to do except keep telling me I would be OK!  At the same time, I was tremoring and tingling all over my body and I had a sensation like i was floating.  Well, not wanting to switch it off or adjust it right away as a knee-jerk reaction (in case the symptoms were temporary), I toughed it out for over an hour, until my friend was all but begging me to cry "Uncle"and DO something!  I finally switched it off, let my body settle back down for an hour or so and, then, went back to the A setting.  

 

I called my doctor the next day and told him what I'd done and how things had fared for me and his first question was, "you turned it back on, right?"  Well, yes, I had, but why, I asked, was that so important?  He told me that, in his  opinion, it is generally best not to switch off completely, but rather to keep adjusting from where you are, because turning off and switching back on, he said, sort of "resets" the brain and then you have an adjustment period to get back to where you were.  This is the reason I generally tough problems out until I can get to my doc for help--I have learned first hand, that it is best to keep the power turned on!

 

My doc didn't tell me off for the attempt.  And, I would've given him an earful if he had!!  Doctors are human, too, as mine would readily admit.  Twice now, he's adjusted me "over the top" and had me writhing where I sat, my body suddenly contorted and my speech like that of the village drunk.  As soon as he realized what he'd done, he was apologizing profusely, but I was all twisted out of shape and the only words I managed to slur out of my mouth were, "That's alright, just fix it!!"  He did, of course, and I did not hold it against him--he simply forgot that there was a patient at the end of the computer he was tinkering with.  

 

So, in the past five, going on six years since I had my DBS surgery, I have had some trials and more than a few uncomfortable days. But, those days are less than the days when I am in my sweet spot and functioning reasonably well for a person almost eleven years into her diagnosis.  In fact, a current update:  Yesterday, I adjusted my right body (left brain) up one increment to 1:3.  I made the adjustment at 10:30 yesterday morning and, as of right now, the breakthrough tremor I had been experiencing has gone.  Better yet, so far, no dystonic twisting of my toes. SO, it may just be that I waited the right amount of time this go round to keep me in my sweet spot.  I would cross my fingers, but crossed digits have a negative connotation to me these days!

 

Well, there you have it, a little more of my  personal DBS diary!

Read as much or as little as you want and, take my info with this big, big ol' disclaimer:

For information purposes only!  These are strictly my experiences--your results will almost certainly vary!

 

Have a great weekend,

Kim

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PLEASE do not think me overly self absorbed, I just want to share an update:  My DBS adjustment of August 8th has removed the recurrent tremor without causing new dystonia--I'm still in the sweet spot. 

 

K

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TeresaJ    148

PLEASE do not think me overly self absorbed, I just want to share an update:  My DBS adjustment of August 8th has removed the recurrent tremor without causing new dystonia--I'm still in the sweet spot. 

 K

Kim,

Without your posts I would know nearly nothing about DBS. I am so thankful for you and others who take the time to share your story and try to try to educate the rest of us who can only read what the medical professionals want us to know. It is an honor and a privilege to be a part of your journey as you shzre it with us. Thank you a million thanks!

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She-Ra    63

Kim you are an educator for us.  Sharing your experience with everyone is awesome and takes an edge off of the scary unknown.  We love you for it.

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I'm so glad... I have worried myself sick over this, fearing that I will deter someone from doing something that could have the potential to improve their lives.  Good luck for tomorrow, Coach, I am confident--with your support--you DW will do just famously.  My thoughts will be with you all day.

Edited by KimAgain

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If I were a five year-old boy, I'd be running around in circles holding my pee pee right about now!!  But, since I am a grown woman, I'm sitting here serenely, thinking good, good thoughts for Coach and his DW.

 

Hang tough guys!

Kim

Edited by KimAgain

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Drummergirl    97

Hi Kim,

Thank you for your posts, they are so informative. You are brave to have had this, I'm not sure I could or will....

I'm glad your in the

" SWEET SPOT" and hope you stay right there! Don't be grabbing for any Azilect just yet!! It might push you beyond the SWEET SPOT"!

Karen

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coacht    95

KIm,

You can relax now. Sorry I was away from the computer and too cheap for a smart phone and all their data plans.

 

Surgery went well. Bilateral leads. We came home today and she is very tired since she did not sleep well the night before the

surgery and was up so many times the night following. She said the most painful thing was when they took the halo off of her.

I told her the lidocaine had worn off by then.

 

Next week they will implant the stimulator.

 

Thanks for everything,

 

Coach T

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graflexmaster    1,182

I'm so glad to hear that everything went well. Am I to assume she'll get a single stimulator to control both leads? I just hope this will help bring back a semblance of her "old self" for the both of you. When next week is she scheduled for the stimulator implant?

 

I know this is quite the process, but I also understand it'll be well worth it. I'll continue to keep you both in my thoughts, and keep sending good energy and hope your way.

 

and thanks for the update, and keep us posted

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coacht    95

Surgery for the stimulator is next week. Still doing well, moving slowly though. the honeymoon period following implantation is working so far.

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coacht    95

Follow up. She is doing well and improving daily. There is still confusion, but she is back on her meds. So far her dystonia has not reared its ugly head. that could be because she is not walking much, or she is actually waiting for her meds to kick in before she does things. Still very tired and sleeps a lot. We will find out today when the surgery will start tomorrow.

 

Michael, some of the research shows earlier rather than later for DBS. I wish we had gone through it four years ago when it was first looked at so we wouldn't have gone through all of the problems of the side effects of meds. that would have been delayed at the very least.

 

Coach T

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I'm still here, Coach, sending goodwill your way... for your DW, but for you also.  The people doing all the waiting and worrying are going through their own unique experience, too... it's not all about the patient, it's about you, too.  

 

Sprinkling fairy dust for you,

Kim

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MusicMan    771

Kim, d'ya think in the 5 years since your DBS they have made significant improvements in the procedure and it's results, or not so much? I would have to think that every one they do, they learn a little bit more, ya know?

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