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Thread: Another Update

  1. #1
    JamieAnn Guest

    Another Update

    Hi Everyone,

    I am finally able to write an update without the drugs getting in the way . I wanted to give you all an update on my progress - my surgery was last Tuesday the 28th, and I came home yesterday afternoon. I was in the hospital for 5 1/2 days.

    I don't really hear about others having to do this, but I had to use ointment in my nose twice daily for 5 days leading up to surgery to protect against MRSA. I also had to use antibacterial wipes the night before and morning of surgery - those were AWFUL. I ended up in tears from all of the stickiness, discomfort, stinging, burning. I really broke down the night before the surgery because I wasn't even able to be comfortable and relax.

    We arrived the morning of surgery 40 minutes early and sat next to a really sweet lady also having surgery with another doctor at the same exact time as me. This was her second scoli surgery, extending her fusion. She gave me words of wisdom and a hug when I was teary-eyed in the pre-op room. I was so thankful for her. Later on that day I found out she had a lot of bleeding and they had to stop her surgery - I was so saddened because I truly hoped for the best possible surgery. I hope she is doing ok somewhere out there!

    Surgery went well. They had intended to fuse T5-L2, and were able to only fuse down to T1, which of course is good. I remember waking up in the PACU with little to no pain and I instantly wiggled my toes. I have a vague memory of them pulling out the breathing tube, but it didn't hurt I suppose because of all of the drugs. The nurse was so sweet and all I kept asking for was ice chips - I was SO thirsty!

    One by one my husband, sister, mom and dad came in to see me. I was talking quietly but was really quite with it. I remember being wheeled into my room and remember most of the entire hospital stay from then on.

    Of course things like having to get out of bed and go to the bathroom on my own were not fun. The very worst part for me was nausea - not being able to eat and being on morphine, and having to get up and walk around to pee made me vomit a few times. That was obviously less than pleasant. I remember being in the bathroom, my mom holding a bin for me to vomit in, and I was like OMG this is just the worst. The next day my sister was helping me to go to the bathroom. I tell ya, it is really important to have close people you trust with you in the hospital because you really need to just bare it all! We ended up laughing (and of course it hurt to laugh) at certain times.

    I paid for my own room, $390 a night, which I felt was VERY worth it. I never had to worry about bothering anyone else. My husband had this semi-uncomfortable lounge chair to sleep in and he stayed the entire time. I did not get my own night nurse and funny enough it turned out my DAY nurses were not as good as the night nurses. I ended up having fabulous night care.

    They kept me an extra day just because I was still draining fluid and they finally pulled it out yesterday morning. I had a visiting nurse come by today and she changed the dressing as I am having drainage in one area. I am praying this is normal and she assured me not to freak out, but I am just so paranoid about getting an infection. So, fingers crossed there..

    Getting up and around is easier by the day. I don't use a walker or cane around the house - I just need someone to help me lift myself out of bed and off the couch. I use a cane just walking around outside and late at night just in case I lose my balance. I also had a PT person stop by today and he said I am doing great.

    My mother is staying with my husband and I for the week, which has been a huge help. The amount of little things you need is really ridiculous - can you reach for that, can you refill my water glass, can you help me up, etc..

    If it weren't for this forum I wouldn't be prepared for the INCREDIBLE bloating I have. I look 30 pounds heavier. I am also still not aligned muscles-wise but from what I have read this is all normal and will come in time. I am having real issues with the bloating though - this constipation is terrible.

    I will keep you all posted! I hope my story will help others prepare..

    Thank you all for your help, support and kind words.

    -Jamie

  2. #2
    Join Date
    Mar 2009
    Location
    Carmel/Indianapolis
    Posts
    246
    Thanks for the update JamieAnn. Sounds like You're doing great. These early weeks are the worst. I'm starting to feel fairly normal now at 5 weeks out. The bloating does go away!
    Age 56
    Wore a Milwaukee Brace for 3 years in hs
    Fused L4-S1 for high grade spondylolisthesis Jan '09 in Indy
    Thoracic 68
    Surgery Aug 31, 2010 T3 to L1
    Dr Bridwell St Louis
    http://www.scoliosis.org/forum/attac...1&d=1289881696

  3. #3
    Join Date
    Jul 2009
    Posts
    9
    Hi Jamie... Thanks for sharing your recovery thus far. I'm 9 weeks post-op but I still remember very clearly how hard the first couple of weeks were. Hang in there and best of luck to you!

  4. #4
    Join Date
    Oct 2009
    Location
    PA
    Posts
    798
    You're fabulous, Jamie Anne. We really should assemble some kind of collection of post surgical tales. "The Best of...NSF". So MUCH stands out in your account! There's so often some unexpected source of (major) discomfort that isn't directly spinal - one that ends up taking most of our energy (like you with the nose ointment; with others - bloating, boob ache or an arm out of whack from being at an odd angle). Whatever.

    Some nurse too that stands out for better or worse. Relatives whose care reminds us, how lucky we ARE. Something funny. Something sad. An unforgettable fellow patient.

    The unwritten details that are striking when we realize "how amazing it is that..."

    In your story, the back story is that it's nothing short of astonishing that you actually wrote all that by yourself (you did, didn't you?) within a mere week of being operated on!!!!!!!!

    And you refer to this as "another update". You mean to say there's ANOTHER, earlier report somewhere?? Something besides ".....unngghh....ice....chips...."?

    WOW! (loud applause for you and Dr. Errico)
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  5. #5
    Join Date
    Apr 2010
    Location
    Easton PA
    Posts
    182

    Hi Jamieann

    I am so happy to hear you are doing so well. Your recounting your hospital experience is really helpful to those us us who are still trying to decide. Thank you. I hope you continue to have an uneventful recovery!
    Lori in PA, 52 yrs. old
    T54/L72
    Surgery 6/7/11, T3-S1, all posterior, with pelvic anchors
    Gained 2 inches!
    Dr. Boachie, HSS, NYC
    12/10/13 Hardware Removal for infection
    Lost 2", gained PJK!

  6. #6
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    Jamie,
    Thanks so much for the detailed post. It certainly helps those of us who are planning for surgery to know what to expect, no matter how unpleasant. It sounds like you're doing really well! Please keep us posted on your progress.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  7. #7
    backissues Guest

    Thank You and More Questions

    Jamie,
    Thank you for your report. I wasn't aware of the drains or the bloating. Is the bloating in your face, or did that go away?

    I understand that, after the surgery, the face and eyes are very puffy.

    What did they do for pain control and did it work for you?

    I'm getting closer to making a decision about surgery T8-S1 in Boston with Dr. Rand.

    Does stopping surgery for too much loss of blood common?

    Wishing you a continued and "uneventful" recovery.

    Irene

  8. #8
    Join Date
    May 2009
    Posts
    3,745
    wishing you uneventful and smooth healing, JamieAnn!

    Irene, i sent you a private message...

    jess

  9. #9
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    Thanks Jamie. Before my surgery, I would pounce on posts such as yours. I wanted to know the nitty-gritty, the good, the bad and the ugly. I agree, we need a whole category for post-op posts/threads.

    Keep up the good work, you sound really great!
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  10. #10
    Join Date
    Dec 2009
    Location
    NC
    Posts
    791
    Glad to hear that you are doing so well and you are so right about bearing it all

    Melissa

  11. #11
    Join Date
    May 2005
    Location
    Wheeling, WV
    Posts
    1,105
    Wow Jamie,

    What a terrific thing to hear, and I am so shocked to see you on here so soon.

    Blessings for you and your family,
    Shari

  12. #12
    Join Date
    Jan 2010
    Location
    Phoenix, AZ
    Posts
    38
    Such wonderful news to know how well you're doing Jamieann!!! Hope you continue to improve as the weeks go by!!!!
    Sandie
    Fusion is scheduled for November 4, 2010
    T10 - S1

  13. #13
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    Thank you, thank you, JamieAnn! This is so helpful to those of us considering surgery.

    I'm glad things are going well for you! Hope the drainage turns out to be nothing. Wow--sounds like you're really mobile early on (and lucid, too!). Congrats! Keep us posted.

    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  14. #14
    JamieAnn Guest
    Hi everyone!

    Just wanted to provide another update on how I am doing, as today is 3 weeks post-op .

    I am able to do more and more every day - the muscles in both my stomach and back are "coming back" more and more. I can get in and out of bed and off the couch easier every day. I have to remind myself to take it slow because I can feel it when I move a little too quickly.

    I bought a pedometer and am tracking how much I walk. I do about 3 walks a day outside, and today got up to 2.2 miles total. My speed is increasing too, and I can also get up and down stairs easier. My heart still races by the time I'm done with my walks, but not nearly as much as a week ago.

    My back feels stiff and is numb along the incision, moreso in certain areas. I have sort of a half-numb feeling along my whole left side which has gotten slightly more feeling since the surgery. My back doesn't really "hurt" - more just a stiff feeling. I can tell when I overdo it - like sit up too much or try to do something I'm not really supposed to, like light cleaning , and then the muscles ache all over.

    I had hip pain that has gotten slightly better, although when I sleep it comes back from laying down for so long. I have to sleep on my side and flip sides a lot during the night. Otherwise I've been getting enough sleep, just a lot of waking up in between.

    I still take Dilaudid but mostly only at night, with a few here and there during the day. I was taking Tylenol occasionally but that does nothing for the pain/stiffness so I really don't bother anymore. Thankfully the Dilaudid and my stomach are getting along better now as I am taking much less than originally. I feel that I'm going through the typical post-op phases that others have described - the horrible stomach issues, the tiredness, and now the mild depression/emotions that I think is from a combination of the drugs, being home a lot and having pain.

    That's really it from me. I can tell I am a long way from having the endurance to go back to work, but at the same time I feel that there is a light at the end of the tunnel for the pain to ease and for me to get back to life.

    I am here to answer any questions for those considering or waiting for surgery. What they say is very true - leading up to the surgery is the worst part.

    -Jamie

  15. #15
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Jamie--
    You sound like you're doing very, very well for just 3 weeks. I hope the rest of your recovery continues as well. And yes, basically the strength comes back little by little. Good luck to you. Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

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