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Thread: Waiting is soon hard!

  1. #1
    Join Date
    May 2010
    Posts
    346

    Lightbulb Waiting is soon hard!

    Hi all, I am waiting for my third revision surgery with hopes of fixing a saggital imbalance and flatback syndrome . This will be done with Dr. Lenke as the surgeon. And I am very happy about that. However,it won't be done until Feb.13th 2013. And I am truly just grateful to have him because of the seriousness of this case, but it seems I'm slipping as far as my condition, which scares me a little bit. My ribs on my right side have slipped underneath my pelvic bones , making it very painful and unbearable at times. I feel like my stomach is being pushed up and my food doesn't want to stay down, and is all over my bed in the morning. I'm afraid I am going to swallow it into my lungs . I realize I need to try and be very careful and try to not irritate these things, but sometimes it just is impossible and so hard to live this way.It hurts so bad to be bent over at 50 degrees and I've been isolated for so long I can't believe it. I am socially stunted and this has gone on for several years. I guess I just need to talk to the people that know what I am talking about. I may call Dr Lenkes nurse next week just to make sure I am on the cancellation list. I am so letting myself dream of a better life. And I know I will get there . It's just going to be a while. I appreciate all that are on this site and understand where I'm at. Bye for now and God Bless you all----
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  2. #2
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Is there any chance of getting a cancelled appt? Your case must be up there with the most urgent, I would imagine. But the good news is, you have a great surgeon and yes, you have a better life coming, one that you can look forward to through these coming months, knowing that this difficult stage of your life is coming to an end and things are going to get much better, back to normal. As a scoli patient, you're familiar with waiting, and this time will go quickly, even if you don't get an earlier appt.

    Don't isolate yourself any more than you already have to, come here daily and read, chat and keep informed by the experiences of others. The internet (and this forum) are great for people isolated by their disability. I'm sure there are other forums you can join, that have nothing to do with scoliosis, where you can get to know others over time, and enjoy the chat. This time next year you'll be getting back into the real world. Wishing you the very best of luck!
    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

  3. #3
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    Hello there Linda! You really need to call his nurse and tell her about your vomiting and ask for suggestions! There are people in his office who have suggestions for you. I would suggest that you sleep with the head of your bed slightly elevated.

    Ask about the cancellations and what the chance is that they can bump you up sooner. I have read about many people on this board who were called on a cancellation by his office. Tell them that you can come on short notice...how far do you live?

    Hang in there! A third revision, you must be a really strong person. You need to eat well to stay strong for the surgery. Small frequent meals, maybe? Protein shakes? Who do you live with?

    I haven't had surgery, but I may someday....and this group is a very supportive group. Like you said, they have been through he experience. You need to keep us posted on how you are doing. Send me a private message if you would like. I will write back to you most days, I promise if you would like.

    I'm sending a HUG your way, ever so gently. Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  4. #4
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    I woke up this morning thinking about you, or maybe worrying about you is a better description. Just want you to know that there are people out there that care, like me.
    One thing that I didn't say, was how glad I was that you did go to see a surgeon that can help you! He can fix your back and then you can get out more and spend time enjoying life instead of stuck in your house most of the time.

    An end is in sight...prop up the pillows so that your head is elevated. Keep blogging [like the other person that responded suggested]. If you are not eating well, I really do suggest light frequent meals, protein shakes, and a multivit. Take your Calcium/Vit D at least 1200 mg [read the label, make sure that you are taking the elemental Calcium that is the milligrams that you need, since a bottle can be deceptive]. Us older ladies need to prevent osteoporosis.

    Don't eat solid food within 6 hours of going to bed....I think that your stomach empties about 4 hours, but maybe a protein shake that can be easily absorbed maybe 4 hours before going to bed.
    I'm on your team! Let us know how you are doing! Don't stay isolated. Feeling alone is such a scarey feeling.
    Another ever so gentle HUG, Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  5. #5
    Join Date
    May 2010
    Posts
    346
    First I tried to change the title on my post. It, as you probably figured out,is suppose to be "waiting is sooo hard." instead of "soon hard." And with that taken care of, I want to give you a big "THANKS" for your support and some very good tips. Protein drinks is a good idea susancook. And I need to stick my head outside , as it almost get to become an anxiety attack now when I think about going out. I do have a good husband that is and has been here through a lot. So I promise I will try harder to get out!!
    I am going to touch base with the nurses this coming week, as I am concerned about the eating. I also am having pain in my knee and that's completley new. I suppose it's because I am so unbalanced. I guess I need to let them know what's going on since I saw Dr. Lenke in May. I do have a lot to be thankful for. I know that Dr. Lenke is going to give me the best chance at a better life as he can. It is exciting! I would give you guys a BIG gentle Hug if you were here. Bless you both for caring! Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  6. #6
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527

    Just keep going....you've come this far and your new life is in sight!!!!!!

    I read it as "so" hard, never saw that it said soon, which shows that you are probably tired.

    Just sit in the backyard, or the front porch. Eat outside. Whenever your "good" time of the day is [I know what that is, since some times of the day are definitely NOT the time to do anything], have your husband drive you to your favorite park just to look around. Bring along whatever folding chair is comfy [bring lots of pillows for cushion], and maybe even get out, if you feel OK. Have a picnic. Go by a drive up restaurant and eat in the car.

    Every step outside of your bed is a step in the right way, mental health wise. The surgery is a biggie, and you need to have your body in good shape and your mind at rest. You can't fix your back, but you can adjust the way that you look at the world and how you feel about yourself. I know that you already started by getting the appointment with the surgeon and by getting on this forum. Pat yourself on the back [be gentle], you have got to be one tough chick to put up with all that you have for this long! I can't imagine.

    Let us know what the nurse says tomorrow. Tell her the graphic details of the vomiting and waking up with the mess. Tell her every detail that you can think about including all of your being basically bedridden. I don't think that your doctor knows that and that might bump up your place on the wait list. Make a list of what you will say before you call, maybe even the exact wording that best expresses how you feel. Sometimes when we call a doctor's office, we forget some things, so get your list going.

    Ask your husband to pick some flowers from your garden or ask a neighbor for some of their flowers or have him bring some home from Costco or Sam's Club [I usually buy there because the flowers are cheap, but the supermarkets have good sales sometimes]. Bring the outside in to you! Smell the flowers.

    Call some of your best girlfriends and have them over to your house. Best friends don't care what you look like, if your clothes aren't perfect, or if your house needs cleaning. Reconnect, I bet they miss you.

    Just my idle thoughts....hope that some of my rambling is helpful. I will send you a private message. Keep smiling, that increases endorphins.

    Susan [I reread this before posting and I sound like a miliary drill sargeant...maybe just think of me as a kind and gentle drill sargeant, actually, I did retire from the military, but that was my prior life]
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  7. #7
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Linda--
    All the above ideas from Jennifer and Susan are excellent! I think Susan is on a mission and it's a good one! She has got your back so to speak. These ideas will help mental health which is so important to your attitude prior to surgery. Are you able to get out and walk much at all? With a walker? I know from your description it sounds like that could be really tough.
    You've got the best with Dr. Lenke. I think they really would want to know the difficulties with keeping food down since they want you to be in the best shape possible going in. Definitely call and talk to Kelly and give her all the details. They need to know! If you don't get her tomorrow try an e-mail and keep calling. Praying for a cancellation for you! Keep writing!! 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.

  8. #8
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    Just chiming in here that I think it's likely you'll get moved up. Lenke's office offered it to me 2-3 times, but I couldn't because of scheduling issues. I think it's fairly common among other Lenke patients I've talked to.

    Also, I did not have food actually come up, but I had bad acid reflux before surgery. They allowed me to take pantoprazole for reflux all the way through--it doesn't interfere with surgery. Maybe ask your doctor if this would help your situation. Prilosec is the over-the-counter version. But you have to take two to get the prescription strength. The good news is that now that I'm straight I have been able to stop the reflux meds!!! I bet your gastronomic problems will clear up with surgery, too. However, I would tell them everything and get checked out just to make sure nothing else is wrong.

    One thing I am not clear on, if you are fused T4-down, how is your rib under your pelvis? Do you have a pseudarthrosis (failure to fuse)? Just trying to get a better picture.

    I am so optimistic for you!! I have met people in Lenke's office who were in even worse situations than yours who were set straight, so to speak. Hang in there. Your big day may be here faster than you think!!

    Best,
    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.

  9. #9
    Join Date
    May 2010
    Posts
    346
    Quote Originally Posted by Confusedmom View Post
    Just chiming in here that I think it's likely you'll get moved up. Lenke's office offered it to me 2-3 times, but I couldn't because of scheduling issues. I think it's fairly common among other Lenke patients I've talked to.

    Also, I did not have food actually come up, but I had bad acid reflux before surgery. They allowed me to take pantoprazole for reflux all the way through--it doesn't interfere with surgery. Maybe ask your doctor if this would help your situation. Prilosec is the over-the-counter version. But you have to take two to get the prescription strength. The good news is that now that I'm straight I have been able to stop the reflux meds!!! I bet your gastronomic problems will clear up with surgery, too. However, I would tell them everything and get checked out just to make sure nothing else is wrong.

    One thing I am not clear on, if you are fused T4-down, how is your rib under your pelvis? Do you have a pseudarthrosis (failure to fuse)? Just trying to get a better picture.

    I am so optimistic for you!! I have met people in Lenke's office who were in even worse situations than yours who were set straight, so to speak. Hang in there. Your big day may be here faster than you think!!

    Best,
    Evelyn
    Hi confusedmom, I wanted to say thanks for posting! It means so much~~~ And yes, you were right about the pseudarthritis. I am , from about L3/4 -L4/5 on down, not fused. And the first surgeons didn't do any reinforcing from the front . And that was a big mistake, according to Dr. Lenke. I believe he is going to do a 10 hr. surgery from the back , using his techneque to reach around the front to reinforce my spine in the L4/5 area.(with a few osteotomies, cages, etc.)I believe Dr.Lenke developed this techneque for doing the anterior reinforcment this way.(FROM THE BACK) And I have had numerous abdominal surgeries done in the past,(for various things) so this is a good thing for me, with all my tummy scar tissue. This is the plan for now anyway. I must wish you a great Holiday~~ (4th of July)doesn't seem possible it's here already! Warmest thoughts, Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  10. #10
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,691
    Linda,
    First of all, you are in the best hands possible with Dr. Lenke and I just KNOW he will give you a better life. I definitely think you need to be as persuasive as possible to let Kelly and Dr. Lenke know that you need to have surgery as soon as possible. I was not in any particular hurry and still received a couple of calls for cancellations that I didn't take because of family. Let us know what Dr. Lenke's office says. I hope you can get a cancellation soon!!!
    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/

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