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Thread: Update

  1. #1
    Kayde Guest

    Update

    Next week I go back to see dr Moreno since being released from the hospital. Been a rough few weeks. The pain meds seemed to get the best of the bowels no matter how much magnesium I have been taking I am more upright this week than in the past week which has made my neck and left side very sore. I haven't really been able to sit up so unless I was walking I have been in bed. Decided I needed to get off the pain meds which of course I did completely wrong so the cold sweats have been challenging. Didn't realize your body could get that accustomed to the meds that fast. The last bowel issue was all I could take. I had done so well staying ahead of it but for some reason 2 pain pills every 4 hours just couldn't be kept ahead of. Finally feeling a little better just very sore. I am sure part of it is just laying in bed and part is moving or not moving enough. My right side was carrying most of my weight for the past 30 years for some reason it never occurred to me my left side that got moved back into place would feel like I had broken my ribs. Yesterday was the first day I was upright more than laying down so today I am a little more sore than normal. My low back, hips and buttocks aren't really numb but very sensitive like when your foot is starting to go to sleep. I assume the numbness takes a while to go away. Any suggestions on how to sit in a chair? When I lean back my back is so numb I feel more like I am sitting against hard plastic and is very uncomfortable. Normally I would be able to get a massage or take a nice dip in the hot tub or pool. Since those aren't options for me does anything releave the soreness and numbness any faster? I am walking 3 times a day to the equivalent to a mile. I have done a mile at a time but it seems a little much for me at one time. During the detox this week I have lost weight which I had hoped to escape. Maybe this thanksgiving will help me gain that back. Thanks to everyone for the support. It's been a very difficult emotional ordeal where one minute you are just having a hard time believing how you look now compared to how you feel and the duration of getting well. I am thankful it is over and the horrific right hip pain and right leg pain is gone and for that I am truly thankful. My general physician who I have been going to for 16 years actually came to see me and was amazed at how well my incision looked and the dramatic improvement of my spine. I am praying my son will have the courage to get his corrected. My daughter has less than 20 degrees but my son is 7 feet and has serious double curves that cause him lots of problems at 27. Breathing is very different, walking, noticing how short other people look just from the 2 inches I gained is all a very interesting perspective. Thanks again to everyones suggestions. I have found them all extremely helpful. Sometimes you just need to know that someone else understands and you are not alone.

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,187
    Hi...

    Sorry to hear that you're having a tough time. Hopefully, you can find some things that make it at least a little easier. Since you've had an incision check, you might be able to sit in a hot tub, if you don't have to put your legs in front of you.

    Has your son been assessed for Marfan syndrome? At 7' tall with scoliosis, it would certainly be a red flag.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  3. #3
    Kayde Guest

    Son

    No. He lives in another state and it is difficult for me to get him to go to the dr. He lives in Dallas. I have encouraged him now that he has a perm job and ins to get checked and to read the forum. At 27 you still feel bullet proof. He has a daughter -she is 2 now. He needs to be healthy for her. He has been battling kidney stones which hasn't run in our families. His father and family were all very tall but I was surprised when he developed scoliosis since usually it affects girls. One reason I had hoped to have boys. Life is funny. You just can't second guess it. Idk what I was thinking with me. For some reason I had prepared myself for right side pain so left side sort of tok me by surprise. Didn't expect my ribs to be so sore. Will be glad when the bandages and steri strips come off where I can take a bath and look forward to my energy level coming back. I wear out so quickly

  4. #4
    Join Date
    Apr 2011
    Location
    Northern Virginia
    Posts
    213
    Kayde,

    What drugs are you on? The Oxycudone was nasty on the output, but the hydrocodon-acetaminophen wasn't as bad. You should be taking one or two stool softner pills every day and drinking TONS of water.

    Don't go off pain meds cold turkey, lower the dosage...from 2 to 1.5, etc.

    I know there is a lot of pain, but don't get off the pain pills too fast.

    You're doing better with the walking distances than I am--and I am at 11 weeks post surgery.
    Discovered scoliosis when 15 years old.
    Wore Milwaulkee Brace for 1.5 years.
    Top curve 85 degrees, bottom curve 60 degrees

    Surgery completed August 23, 2011 (during an earthquake, can you believe that?)
    Dr. Charles Edwards, II
    The Spine Center at Mercy Hospital in Baltimore, MD
    Before and after xrays:
    http://www.valley-designs.com/myspine

  5. #5
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    Yes, you're doing great with your walking! Has your blood been checked? You might be a little anaemic after your surgery. Try to increase your red meat if possible.

    Sitting was hardest for me. It was several weeks (probably 6 weeks) before I could sit in any sort of comfort. Yet I could stand and walk quite easily.

    When you're a couple of weeks further on, look back, and see how far you've come. Things WILL improve. Everyone heals at a different rate so don't be hard on yourself.
    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

  6. #6
    Kayde Guest

    Lesson learned

    Yeah the oxycodone was a surprise to me. I have been taking 10 stool softeners and I bought the magnesium Ed suggested. The constipation was sort of the last straw for me on the pain meds. Took me 3 days to realize that was why I was sweating and having chills. I thought I was having hot flashes lol. Taking very small slivers of the meds now. Hope by the end of next week i can be off even that The muscle spasms after I walk seem to be the most pesky outside of just really being sore. Like you went to the gym overworked till you past out and then someone threw you out by your ribs- but just on one side. It's been hard to sit up. I am taking Tylenol now with a small half of a valium. The incision doesn't hurt so far. But man my hips and left side ribs in the front are so sore it makes it hard to be upright for long. I know I am able to climb my stairs now which wasn't possible when I first came home and I fell the first step. I guess I just thought after a week of being sore it would start to get better. Sometimes it's hard to remember I haven't moved or breathed this way in 30 years. Every walk requires an immediate lay down for at least an hour. I could be pushing myself a little to hard but I guess I am afraid my nerves won't heal as quickly and the numbness leave if I don't move around.

  7. #7
    Join Date
    Apr 2011
    Location
    Northern Virginia
    Posts
    213
    I agree with Jennifer...sitting is the hardest. I was lucky in that we needed to buy a new bed at the time of the surgery anyway, so we went whole hog and got a sleep number bed with the platform where you can raise and lower the back and the leg part. To be honest, that is the way I am most comfortable sitting--so far.

    One thing that has helped riding in the car and in some chairs is a memory foam pillow. I have bought two of these pillows at Kohls:

    http://www.kohls.com/kohlsStore/bedr...per+Pillow.jsp

    It seems to be just soft enough not to irritate my back, and yet stiff enough to support you. I have to move it up a bit--so the bottom is actually a couple inches up from where I sit. I hope that makes sense. Kind of like at the small of my back. You just have to play with where it fits best.

    I still can't do a recliner...but don't have an automatic one either.

    In short sitting will be the hardest thing. Have lots of pillows (memory foam and others) around the house to make sitting as soft as possible.
    Discovered scoliosis when 15 years old.
    Wore Milwaulkee Brace for 1.5 years.
    Top curve 85 degrees, bottom curve 60 degrees

    Surgery completed August 23, 2011 (during an earthquake, can you believe that?)
    Dr. Charles Edwards, II
    The Spine Center at Mercy Hospital in Baltimore, MD
    Before and after xrays:
    http://www.valley-designs.com/myspine

  8. #8
    Kayde Guest
    I have wondered about pillows but I haven't found one I own that has suited me. I haven't though about being anemic and I haven't had much red meat since the surgery. It was very hard to eat in the hospital and since I have been home I haven't had much appetite which was one reason I wanted off the pain pills. I have lost 11 pounds so far and I am hoping to gain those back. I don't usually gain very quickly. I will check out the pillows @ Khios. .

    I expected the pain but the sore wasn't really on the radar. Of course sore is better than the pain I was in the first two weeks. Trying to count my blessings. Sore can't last forever

  9. #9
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,262
    [QUOTE=djkinkead;129181]I agree with Jennifer...sitting is the hardest. I was lucky in that we needed to buy a new bed at the time of the surgery anyway, so we went whole hog and got a sleep number bed with the platform where you can raise and lower the back and the leg part. To be honest, that is the way I am most comfortable sitting--so far.



    Can I ask what the cost of your new bed was? I am ,also. looking for a new bed and we were wondering that that kind of mattress cost?
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  10. #10
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,187
    I bought an adjustable bed before my first surgeries 20 years ago. That's when they were REALLY expensive. As it turned out, I was never comfortable unless I was completely flat. Having the head of the bed raised really gave me shoulder blade pain. Another fine example of how different we all are!

    After my surgeries this time, I couldn't sleep in a bed for several months. And, the only chair I could sit in was my recliner. It's a Lazy Boy:

    http://www.la-z-boy.com/Product/5204...Back-Recliner/

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  11. #11
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Hi,

    it sounds like you are coming along normally. The numbness of my lower back, hips and buttocks did almost completely go away, but it's taken years. At first I remember the numbness went about halfway down my thighs, but as I recovered, that line moved up. My thighs, hips and butt are not numb any more at all, I only have a tiny bit in the lower back (where the lower back dimples are, LOL) and it's not completely numb.

    Yes, those cold sweats are the worst. I can't believe you're totally off meds! But if you can manage, good for you. Your appetite will come back over time. Remember, your stomach shrunk and it will take time getting back to normal.

    You're absolutely right that your body was in one configuration for 30 years and it has to get used to the new you. It will happen over time.

    Take care of yourself,
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  12. #12
    Join Date
    Apr 2011
    Location
    Northern Virginia
    Posts
    213
    We bought a king size bed that is, what is best described as two conjoined extra long singles. We choose the middle version of their line of products, with 1.5 inches of memory foam (I added two more inches of foam later on myself). It cost $4500....which is great. Each side of the bed has it's own controller for raising and lowering top and bottom...as well as the softness of the bed.

    If you get into the high end of the bed (which offers like five inches of memory foam, its like $6K.). The 1.5 inches of foam was fine for my husband, and I am happy when I went out and bought a topper of an additional 2 inches).
    Discovered scoliosis when 15 years old.
    Wore Milwaulkee Brace for 1.5 years.
    Top curve 85 degrees, bottom curve 60 degrees

    Surgery completed August 23, 2011 (during an earthquake, can you believe that?)
    Dr. Charles Edwards, II
    The Spine Center at Mercy Hospital in Baltimore, MD
    Before and after xrays:
    http://www.valley-designs.com/myspine

  13. #13
    Join Date
    Apr 2011
    Location
    Northern Virginia
    Posts
    213
    Kayde,

    Also, I found with the Oxycudone, I had NO appetite. I was drinking ice cold Ensures to get the calories.

    I found I had a better appetite with the Hydrocodon-Aceaminophen.

    My surgeon emphasized eating LOTS of protein during this time.

    In relation to being anemic, did they give you enough blood? My surgeon recycled 1/2 my blood and thought I'd do okay with it, but I didn't. In the end, I needed two more units. If you are small or thin like me, it could be that. I'm not a doctor or nurse, but I do know that until I got the blood I was very weak and didn't have much get up and go (I was given one unit one day, which gave me the strength to stand a walk a tiny bit). I was given a second unit two days later and I was able to walk and do stairs.
    Discovered scoliosis when 15 years old.
    Wore Milwaulkee Brace for 1.5 years.
    Top curve 85 degrees, bottom curve 60 degrees

    Surgery completed August 23, 2011 (during an earthquake, can you believe that?)
    Dr. Charles Edwards, II
    The Spine Center at Mercy Hospital in Baltimore, MD
    Before and after xrays:
    http://www.valley-designs.com/myspine

  14. #14
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,394
    Kayde,
    I like Debbe’s post, and I will say that your post sounds about right for 25 days out.

    Constipation seems to really hit hard around the 3rd or 4th week. We have seen many posts here about this and its predictable with adults. That’s why I say keep the Mag Citrate around just in case. You “know” when you are in trouble, you just do.

    You son is passing kidney stones? How often is this happening? I had a laser lithotripsy once and I have to say if you think scoliosis surgery is painful, passing an 8mm stone is the definition of extreme pain. I gave scoli surgery a 10, and the kidney stone event a 15.

    Stoners should drink plenty of water to dilute uric acid. Soda is on the banned list, and probably the worst thing that anyone can do to their bodies....

    You are almost past the hardest part....things will get better, they will.

    Sit with soft down pillows. One day at a time.
    Eat good foods, protein is important.
    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  15. #15
    Kayde Guest
    Yeah my son said the pain was almost unbearable. Told him then the scoliosis surgery should be np. Lol. Oh yeah I have cleared out walgreens and cvs with ensure lol. Figure that will be my new best friend. I did get someone to take me to Khios and I bought the pillow suggested. It has helped a lot. I also cleared out the magnesium from walgreens. This was the first time they have seen me - the woman cashier commented she wondered why the couldn't keep it on their shelves. Showed her my xray pics and told her about the meds she said she completely understood. I guess her neighbor had a daughter who had scoliosis surgery years ago. The ribs on my left side are still more compressed than the right side even though I am told my rib hump is gone. Idk that the ribs on that side will ever expand to match the other side. Will be interesting to see how long it will take to get back to doing routine things. The tingling numbness gets a little better after I walk but the back has just today seemed to start coming to life. I have noticed some tingels and a little more itching. Gotta love the itching where u r numb. That's so bizare to me that u van itch on the inside of a place that is numb on the outside.
    Ed you have been so active in your life and your photos are great. Have you been able to get back to ,ost of your activities you loved? I worry that my dancing,surfing, skiing, and golf could be over. I guess something everyone worries about.

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