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Thread: A month out, an account thus far

  1. #1
    Join Date
    Aug 2007
    Posts
    27

    A month out, an account thus far--now with pictures!

    Hello all. This is my first post in a long time since my fusion with instrumentation on October 3. I'm afraid it will be a rambling mess, but I write it anyway for present or future past-mes who will search this board for answers to their questions as I did.

    So to begin at the beginning, I am 33 and had a thorocolumular (?) curve somewhere between 60 and 70 degrees--apparently hard to measure because of its great twist. I had been diagnosed at 19--too late for bracing. After seeing a few orthopedists thereafter who told me there was nothing to be done, I put it out of my mind. I began to have pain related to it at 23, but it didn't become severe until I was around 30. At that point I began getting massages and pursuing yoga and pilates for relief. It was only by chance that I learned of a spine surgeon here in town and that corrective surgery was possible. Until then I didn't know that there were surgical options. I had just accepted long ago that I had to live with the scoliosis and hadn't done any research (really dumb in retrospect). Once I met with this surgeon, Kurt Von Rueden, I scheduled surgery as soon as possible. One month out, I have no regrets and could not be happier with the result.

    As I was preparing for the surgery, I read as much as I could about other people's experiences, so I want to share some of mine--some of my surprises and what advice and tools I found most valuable up to this point.

    First, I was expecting the range of motion in my arms to decrease post-surgery as some others described. For me that was not the case. I think location of the fusion has everything to do with what condition you will find yourself in after the surgery, so my advice to future former-mes is to always factor that in to accounts that you read to know if they are predictive for you. Because my fusion did not begin until T9, I lost very little range of motion in my arms post-op. That meant I could wash my hair immediately, among other things.

    Perhaps for the same reason, I never had difficulty using the bathroom on my own. Even in the hospital, I only need help getting there--I could handle the rest on my own.

    A note in that department, as you may have read already, it is common for women in their 20s and 30s to begin to menstruate after surgery. I did. I mention it only to tell you that if you chose to use a tampon, you must have you catheter removed. You can leave it in if you use a pad. I have rarely ever used a pad in my life, so I chose to have the catheter removed. If I had it to do over again, I probably would have chosen the pad. No reason to make yourself have to get up any more than absolutely necessary at that point.

    To continue in that ouvre. I strongly advise people preparing for surgery to get regular, unless you are one of the lucky ones who are regular without even trying. Particularly if your regularity relies upon coffee, I'd find a new system (your post-surgical stomach may not be too keen on coffee for a while). I had, as do many, an ileus in the hospital. Let me object here to the term existing--all it means is that our bowels aren't moving--does that need its own name so that we can say, "I have an ileus" rather than saying, "my bowels aren't working." I'd rather say the later.

    In the hospital they gave me an unbelievable amount of stool softeners and stimulants, but all to no avail. NOTHING THEY GAVE ME WORKED. That's pretty incredible. Anyway, I know they are not supposed to let you out until you have a movement, but they did with me. Insurance. Hurray.

    What followed was 3 or 4 extremely uncomfortable days. Just before I was to be scheduled for some procedure to clean me out, I managed a movement. Since then, I've been satisfactorily regular on the regime I've developed that works for me. Before you have surgery, FIND YOURS! It will save you a week of avoidable post-op pain.

    What works for me is a combination of 2 concoctions. One is called Chloro-oxy. You can get it at health food stores or in the less mainstream grocery stores. It is chlorophyll, intended to help you better oxegenate your blood. But taking twice a day kept me mightily regular under normal life circumstances. Now, I also need another additive I got for another reason before the surgery. Magnesium was recommened to me as a natural muscle relaxant that I could take for pain and spasms that I was prone to. I got a wonderful product that is designed to balance magnesium and calcium levels in your body for optimum vitality. But mostly it is magnesium. The muscle it is perhaps most famous for relaxing is the colon--giving us products such as Milk of Magnesia, etc. Magnesium will get things moving. The powered form of the product I take allows me to determine how much I need--anywhere from 300 to 600 mg to get my desired effect. It's called "Peter Gillham's Natural Vitality" series. Mine is "Natural Calm: a relaxing magnesium supplement and anti-stress drink." I use the sweet lemon flavor.

    Bottom line: once you get your intestines working again, you will need help because narcotics back you up, so better to know how to deal with that before your surgery than have to figure it out after.

    Now onto products. My bathroom is designed such that the toilet is right next to the bathtub. That being the case, an essential tool for me was a vertical bathtub bar that clamps onto the side of the tub. It made the up and down of using the toilet much easier, giving something to hold onto. I had also purchased a raised toilet seat, but that was uncomfortable and unnecessary for me. I got rid of it almost immediately.

    Grabbers are necessary, ofcourse. I have two types, one vastly superior to the other. The inferior one has a hook like moving part meant to grab things against a stationary part. It's flimsy and almost useless. The other one is awesome. It has two moving pinchers, each with a rubber cap on the end. It's sturdy enough to pick up heavy things, and has a secure enough grip to pick up even small pieces of paper and ice.

    The shower stool and a hand held shower head were both essential. Standing that long would have been impossible for a few weeks, and I can't imagine showering without being able to move the shower head in lieu of moving myself.

    I also highly recommend a cold cream-like facial cleanser so you don't have to bend over the sink to was your face. You won't be able to. I splurged on Stella McCartney's cleanser. I wish I had thought of this years ago, as bending over the sink to was my face always hurt.

    I was fortunate enough to have my sister here for a while. She made a casserole and lasagna that she froze in individual portions. That was wonderful. No worries about what to eat for weeks. I'm not one who demands variety.

    So one month out, I'm still not sleeping through the night. I'm not sure if it's pain or just a messed up sleep cycle after those first couple weeks of surgery where sleeping was almost all I did. I'm highly mobile, but tire pretty easily, and if I am late on my meds--forget it. Frankly, I'm getting a little down with all of this. But then....

    I look in the mirror and holy moly I love what I see. A long torso with an even waist. I look amazing. I can't get over how glorious it is. Seriously.

    That may be it. My de-briefing. Feel free to write me with any questions you think I could answer for you.

    Best,
    Holly
    Last edited by shegiles; 11-10-2007 at 07:50 PM. Reason: continuation
    Age 33
    40 degree diagnosed 1993; 70ish degree 2007
    Fusion to T9 to L5 October 3, 2007 with Dr. Kurt Von Rueden
    Corrected to 8 degrees

  2. #2
    Join Date
    Aug 2007
    Location
    Auckland, New Zealand
    Posts
    185
    Thanks for the update... and the information sharing (!)
    Glad to hear stuff is going well for you, keep it up!
    It gets better everyday, especially in the early days!
    1994 curve at age 13, 70 degrees, untreated
    2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
    2007 26 degrees junctional scoliosis
    Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
    msandham.blogspot.com

  3. #3
    Join Date
    Mar 2007
    Location
    Texas
    Posts
    283

    Hey Holly-

    Good to hear from you!!! Post when you can, it is so encouraging to hear the good points of our surgeries.... Lisa
    Lisa age 47
    T curve 69 degrees
    L curve 40 degrees more or less - compensatory
    fused to from T-3 to sacrum
    anterior and posterior surgeries completed June 1, 2007
    pushing hard in recovery !!

  4. #4
    Join Date
    Jan 2006
    Location
    near Philadelphia
    Posts
    1,260
    Congratulations on a successful surgery and glad to hear you're -- ahem -- "moving" again!! That is a tremendous problem for everyone. It's always good to hear the various methods people use to get regular again....
    Chris
    A/P fusion on June 19, 2007 at age 52; T10-L5
    Pre-op thoracolumbar curve: 70 degrees
    Post-op curve: 12 degrees
    Dr. Boachie-adjei, HSS, New York

  5. #5
    Join Date
    Feb 2007
    Posts
    135

    Hey Holly!

    I had been wondering how you were doing since your last post. It sounds like you were very well prepared for all of this, as far as equipment and all.

    The patience, however, did not come easily to me either. It can start to feel like you will never be pain-free or close to it, and a full night of sleep will probably be an elusive thing for awhile. Anya (ahbarry) told me that it would happen sometime, to keep the faith, and I will pass the same message on to you. Because it may seem never-ending right now, but it does get better!

    Your post will be (and probably already has been) of immense help to someone getting ready for all of this, just like you were a few months ago. All the details you provide will help smooth the way for others, and it's really great that you have taken the time to share.

    Can't wait to hear about more progress, and keep on keepin' on!
    31 year old female
    55* (day of surgery) thoracic curve w/compensatory lumbar
    T4-T12 on Aug 15, 2007

    MRI, pre-surgery
    Xray, 3 mos. post-op
    Machu Picchu, 8 mos. post-op

  6. #6
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,293
    You are only a few months(Aug) post surgery. This is normal.

    I bemoan the fact that many scoliosis surgery patients-meaning adults-since teens snap back so fast--do not get adequate pain relief.
    There is absolutely no excuse for this!!!

    Poor pain control is detrimental on all fronts with this surgery. It prevents healing, affects the immune system and prevents rapid return to meaningful activity.

    My pain doc stressed pain relief of "5" on a scale of "10" was realistic early post op. This level was easily ignored and allowed function without being doped up.
    He used many non-narcotic modalities while easing me off opiods at 3 months after surgery.

    Being a martyr is not a good idea.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  7. #7
    Join Date
    Nov 2007
    Location
    Big Bear, CA
    Posts
    290
    Thank you for posting this! What wonderful information for those of us getting ready for surgery. It helped to answer a few of the million or so questions I still have. I am slowly compiling a list of everything I need to have waiting for after surgery. By the way, your back looks wonderful.

    Geish
    46 years old female, diagnosed at 13
    +30* curve to right
    +60* curve to left
    +30* curve to right
    Surgery scheduled for Dec 13, 2007

  8. #8
    Join Date
    Aug 2007
    Location
    From seattle WA
    Posts
    55
    Thank you for all the info, it definitely helps me prepare for all the possible situations that lie ahead for me.

    Keep up a positive attitude, it sounds like you are doing really well!
    Roseann
    2001 T-sp 58* L-sp 55*
    2007 T-sp 64* L-sp 67*
    Surgery Dec. 21 2007
    Posterior fusion T3 to L3

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