Jump to content


  • Content Count

  • Joined

  • Last visited

  • Days Won


ScottSuff last won the day on November 22 2016

ScottSuff had the most liked content!

Community Reputation

17 Good

About ScottSuff

  • Rank
  • Birthday 09/23/1959

Profile Information

  • Gender
  • Location
    Hills of East Tennessee
  • Interests

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. ScottSuff

    Follow the DBS Road

    Sorry for not updating sooner. Scottsuf.blogspot.com Another Surgery! The title is correct, I'm 10 days post op right shoulder replacement redo. I probably didn't post much or anything about my failed shoulder replacement 23 month ago. The original plan was to have my bad shoulder replaced and working properly before DBS. That would have been great, but I'm not calling the shots.The shoulder was from an injury 37 years ago in the weight room. It probably was a small tear in the rotater cuff that healed on its own. Arthritis built up in the joint over the years and it would flare up at times, and it finally got in the way trying to battle the PD. Remember exercise is vital in the fight with PD. Getting back into the game required a successful DBS and shoulder replacement. I don't really like having to go under the knife multiple times for success, but if I'm going to have any quality of life my remaining days, I had to do it! On 8-10-17 I had my 10th surgery in 2 years. So far, so good, with the shoulder. I'll know more this week after the first post op doctor visit. The DBS is going good. I've reduced the amount of meds I have to take significantly,most symptoms are gone or reduced. My biggest struggle has been with my voice and swallowing. It's been over 3 months of fine tuning the neurotransmitter to get my voice back over a whisper. I was aware of this side effect and accepted the possibility, praying we could program a better outcome if needed. That's where I'm at currently. Arm in a sling, doing therpy at home, healing once again!
  2. ScottSuff

    Follow the DBS Road

    Update scottsuf.blogspot.com
  3. Scott and others, if you have not already read this, it's well worth taking the time:

    IDSA : Complex Neurological Infections Require Team Care   http://www.idsociety.org/Press_Release_02_15_2017.aspx

    I posted a replay in your daughter's site, Scott.  What a beautiful post she shared.  I'm so sorry she is going through what she is.  She is beautiful, with a beautiful heart.


    1. Linda Garren

      Linda Garren

      "replay" should, of course, be "reply."  :-)

  4. ScottSuff

    Follow the DBS Road

    i'll let you know, right nowas I sit here i've not been off since stage 2 on 4--10. i go to bed witthout symptoms and get up a few times in the nightstill able to walk and on. I get up in the morning about 9 stilll on . My wife reminds me to take meds. i was told to take my meds like normal andwe'd work on reducin when im turned on.
  5. ScottSuff

    Follow the DBS Road

    Glad to hea rthis.i had stage 3 this past Mon and my next event is 5/11. the turn on UpdateStage III scottsuf@blogspot.com STAGE III REDO I am happy to say this past Monday I had another successful Stage III surgery. I say this with extreme caution because of what happened last time with an infection looming just under my skin, waiting to come out. Stage II and III went just like last time, but I seemed to take more of it in. I didn’t remember so much of my surroundings the first time, and I acted like I was still under the happy juice for a good while the second time around. When I came around in recovery after my phase 2 surgery wanting a pizza, I did everything I could think of to get one. The poor girl transporting me didn’t know what to think. I tried to get her to stop on the second floor at the cafeteria. I even offered to buy lunch for everyone! They were happy to get me to a room I’m sure. I continued to have fun though. My room nurse came in at a shift change to ask the usual questions, you know, "What’s your pain level? Where does it hurt?" Well, I answered about a 2 or so and then busted out laughing as I pointed to the baseball stitches across my head, as if to say "Where do you THINK it hurts?!". It just struck me as funny, and I cried I was laughing so hard. The nurse finally got it and cracked a smile. My current status has me at home taking it easy, waiting for the turn on day. To refresh your memory, that was the day they found the infection and removed all the hardware last time. That’s not going to happen this time. I feel better overall. One concerning side-effect has been some confusion. Docs say that it’s not uncommon to experience some confusion during fist couple weeks after surgery. We’re keeping an eye on that for certain. With that, I’ll fade back into cyber space while I heal up until I have any more news.
  6. ScottSuff

    Follow the DBS Road

    im 2 days post stage 3 and feeling good, Honeymoon feeels goood. My body isn telling me when its med time ans so I forget to take my meds for a few hrs.almost feel normal . Murray sorry to hear how complcated it got foryou, glad they got you turned on and got a taste of the magic box. i've had 6 surgeries since nov and I think when all is said and done its been worth it.still not time for fisst bumps and high 5s. brain sweeling and infection is still a threat. SWVA, thanks for the comment for my daughter i'll passs it on if she doesn't stop bythe forumand see it. she did spend 6 months in s america about 3 years ago.
  7. ScottSuff

    Follow the DBS Road

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

    Follow the DBS Road

    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. 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. 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. 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. 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 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.
  9. ScottSuff

    Share Your Story with NPF

    Here's my story. scottsuf@blogspot.com Round 2 *Ding!Ding!Ding!*
  10. ScottSuff

    Follow the DBS Road

    Update Scottsuf.blogspot.com Round 2 *Ding!Ding!Ding!*
  11. ScottSuff

    Follow the DBS Road

    Small update Scheduled Scottsuf.blogspot.com
  12. ScottSuff

    Follow the DBS Road

    Small update Fighting infection Scottsuf.blogspot.com
  13. ScottSuff

    What's the odds?

    I completed DBS last month,and when I went back for programming they found out I have an infection. I went to surgery same day and all hardware was removed. Culturals were grown to create a antibiotic plan for me. I'm currently home with a Picc line executing that 6 week plan. When I'm healed up the plan is to do it again. My question, is my chances of developing another infection higher than anyone else's. Are there any higher risks of anything the 2nd time round? I had CT scan before hardware was removed, and I was told that lead placement can be precisely placed to achieve the same results I had during the first procedure. Is that accurate? My skull can't take another cutting open. Thanks
  14. ScottSuff

    Follow the DBS Road

    Blog Update Attitude Adjustment scottsuf.blogspot.com
  15. ScottSuff

    Follow the DBS Road

    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?