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ScottSuff

Follow the DBS Road

33 posts in this topic

Decided to blog my journey with DBS, if anyone wants to follow along.

 

Scottsuf.blogspot.com

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Scott: 

 

Great posts!  Another aviator on our forum is Dancing Bear who was in the Air Force as a pilot and then flew commercially.  Just FYI, in case you would enjoy chatting with a "brother."  :-)

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I'm 12 days post Stage III surgery (Vanderbilt ) with a couple questions. I was warned about stiffness in the neck but this feels worse than I thought might hit me. So, has anyone else experienced a stiff and tight neck after neurotransmitter insertion, from the extension lead having scar tissue build around it? I move my neck around frequently. When I get up I can turn my neck a full 90 degrees to the right, but to the left I might be able to get 60. What did you do? What was your outcome (positive I hope)? Sent surgeon pics, he thought it would resolve itself basically but repeat pictures next week.

Thoughts? Comments?

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blog update

scottsuf.blogspot.com

 

 

Great job of explaining it all, Scott.  I would think this would be extremely helpful for those who are facing DBS and have lots of questions. I hope any issues (like your stiff neck) resolve/get resolved and that you get the very best result over all.  Very interesting to journal us through your surgery!

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Scott, that sounds awful to be going through.  I hope they can pinpoint the specific pathogen and knock it out quickly for you.  in the meantime, rest lots and drink lots of fluids, as I'm sure they are encouraging you to do.

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Scott, you have really been through a lot with this.  Hang in there.  It sounds like they are taking good care of you,

and your wife sounds like she's been such a tremendous support.  That's so important, and a real blessing.

Will pray for you right now, and please keep us updated.

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Sorry to hear of the infection.  i am recovering from DBS surgery and this week andI I certainly do not want to repeat any of it.  Like you said... it is good they caught when they did.

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Murray, please keep us updated on how you are doing, too.  You've had a very challenging and difficult road, for sure.

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Thanks.  I don't want to take away from his thread, and I have been updating things on my DBS Screening thread.   I am due for a follow-up on Tuesday.  I have an appointment to get programmed in about a month.  It is certainly a challenge to go through the surgery, but I keep hearing the benefits are well worth it..

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Scott,

Why don't you just copy your post here for people like me that are usually too lazy to go to a link? Good stuff.

 

Coach T

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I suppose I could do that

That's correct, I'm back in this fight, and somehow I'm more fired up than ever. Maybe the good lord

 

has heard all your prayers and has given me an extra shot of confidence and courage. I must admit I

 

had been dreading going through the procedure again till just the last few days. I've been encouraged

 

by some improvements in the gym and, just an overall improvement in the way I feel. Swallowing

 

had been a problem but it's cut me a little slack the last few days. I messed my

 

lower back up and got something in my eye from weed eating. (Yes,I had glasses on) I get a break

 

 from the PD and, create other ills. Lol Nothing a trip to the chiropractor and massage envy can't take

 

care of. The grass is all flushed from the eyeballs as well! Getting old sucks!

 

 

 

I looked way back to Nov 2016, when I started this quest and thought about where I've been, and

 

where I'm  going? It brought me down to think of all that time wasted so I've stopped reflecting! 

 

 "It is what it is!" as they say! I'm trying to look forward to the future and the good things ahead.

 

I know it's going to get worse again before it gets better. Surgery just seems to take it out of you.

 

What I hate more than anything, is my support team having to take up the slack at home, and keep me

 

 out of trouble. I feel this time they're going to put me in a sterile bubble boy suit and not let me out

 

till I'm all healed!

 

I'll try not to duplicate previous posts and bore you even more. My focus will be on noting any

 

differences in the way I feel mentally and physically.

 

 

 

 

I've had other stuff on my mind for a while that supersedes all my own woes that I'm going to share

 

with the world wide web in hopes that there is an answer out there. I've been given permission from

 

my daughter Amanda (we call her Mandy) to share her story. To my friends who ask how my girls are

 

doing, I must apologize for not telling the whole truth. I would usually just say "they're doing good,

 

Mandy is married living in Denver, and Morgan is in grad school at UT" and leave it at that.

 

The truth is Mandy has been sick for about 1.5 years, and no one has made a good diagnosis.

 

IMG_2533.jpg

 

 

She's a beautiful young 24 year old that used to have boundless amounts of energy and strength.

 

She could do more chin ups in middle school than any boy inn her class. She trained for hours after 

 

school for competitive gymnastics.

 

IMG_4526.jpg

 

She and her sister pulled and pushed me to the summit of Mt. Elbert, the highest point in Colorado at

 

14400 feet less than two years ago.

 

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That was then. Now on some days she doesn't feel like getting off her couch. She's has a low grade

 

fever almost every day. Fatigue,body aches and pain are present as well. I don't think I can cover 

 

 her symptoms adequately, I'll let her do that. There has been a lot of tests run looking for the obvious

 

but it's apparent now that this illness isn't plain and simple. Put yourself in my shoes...you have a

 

chronically ill daughter that's 1400 miles away, and you can't help her get better. You can support her ,

and love her, but you can't kiss her boo-boos and make everything alright like fathers do.

 

 

What can you do to help? Well, one of her doctors told her the more people that sees her problem

 

the better the chances of figuring out what's wrong. I'm trying to increase those odds by

 

 spreading her story. I'm going to get back to a condition that I want to do another fourteener , and I

 

need both my hiking partners. 

DSC_0317.jpgDSC_0114.jpg

I have this blog on a couple different forums that some intelligent  people belong to, (I'm lucky there 

 

wasn't a test to belong) so I'm asking you to take a look at Mandy's  blog and get to know her and her

 

 

symptoms and just maybe someone can help a young woman with a bright fulfilling life ahead to 

 

image1.jpegIMG_9712.JPG

reach her goal of normal health.

 

 

 

 

Don't worry, she is a very good writer, much better than her father, so her blog is the real deal. I

 

must admit I cried aloud for 10 minutes after I read it. Give it a look, you might shed a tear as well.

 

 

 

You can find her at thechroniccaterpillar.com the name alone should entice you.

 

 

 

 

 
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Did you have to have the hardware removed? Have you had second procedure?

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Murray, sorry to hear that!

Scott - You daughter is a wonderful writer.  She need to post a time line of when first symptoms noted. Where she traveled, what she did when there.

I have a cousin that is active in genome projects.  Fascinating reading of some of the projects, but sometimes it is the most mundane things like the desert valley fever that is common in a small region of the USA, but anyone outside that region doesn't recognize the symptoms.  coccidioidomycosis, the source of valley fever is a ground spore. It affects both humans and dogs, but much easier to see the genetic sequencing in dogs. 

While most Doctors will recognize Lyme Disease, something like Leishmaniasis is rare in USA (some parts of Texas and New Mexico have seen it, but most Doctor's wouldn't have ever seen a case).

If she had a rash, "bulls eye" mark, or a festering skin ulcer it would all provide a clue. Results of her blood work.  No detail too small.

 

 

 

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21 hours ago, ScottSuff said:

Did you have to have the hardware removed? Have you had second procedure?

Yes, they removed the hardware after I had 3 consecutive seizures... it was too emergent at that point.  They sent me to ICU and put me in OR in a day, maybe two.  Since I don't remember some things, time is a little fuzzy.  They say I can't even try until about 6 months from now.   Probably a good thing to give me time to really think about it.  

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Scott and Murray, I hate that you guys both ended up with infections. It almost seemed that DBS was getting to be a routine surgery and then two people on this forum have major complications within a couple of months. Hope both of you recover quickly and the next DBS goes great.

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18 hours ago, swva said:

Scott and Murray, I hate that you guys both ended up with infections. It almost seemed that DBS was getting to be a routine surgery and then two people on this forum have major complications within a couple of months. Hope both of you recover quickly and the next DBS goes great.

Thanks.  The one thing that went well was the programming.  I got programmed the day before I went to the hospital and it worked great!   So, at least I got a taste of how well it can work for me before I decide to risk it again

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