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Thread: Daughter having revision on Tuesday....feeling anxious!

  1. #16
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    Quote Originally Posted by Sami View Post
    I'm glad your daughter is doing well.

    Pooka1. What I got from your message is that not all revision surgeries improve the condition. That's why I'm too scared to consult another scoliosis specialist after my first surgery failed. I know he will make me believe that my pain will be gone and what a revision surgery is, is a shot in the dark.
    Well I think the point of my comments should be that while most revisions seem to improve things based on my understanding of the literature, surgeons can only take patients as them come. Even if 99.9% are helped, there are always going to be a few patients who have some other condition that will undermine the surgery. Cases like that other woman's and yours and a few other I could name are relatively rare at least in the testimonials. That does NOT mean that your pain is imaginary and frankly I am shocked that surgeons ever tell this or imply it to a patient UNLESS there really is some large percentage of psychosomatic cases that are helped by being told the pain will get better. I doubt it though.

    My best guess is that there is something else going on. Just because a person has had spinal fusion doesn't then make every single health issue the person encounters related to the surgery. In your case, I believe you said you had problems at least 2 years before your surgery. Now maybe a surgeon should know that whatever that is, it would likely worsens with spinal fusion given you were already too stiff, I don't know. On the other hand, did you really have a choice about spinal fusion? As an adult, maybe you did. If you make it to adulthood functioning then you probably weren't surgical as a child. Most kids in surgical range, on the other hand, do not seem to have a choice... surgery is clearly better than no surgery. It is no close call.

    For people like you, once you rule out the fusion as being the cause, it becomes a long, frustrating road to find the right specialist. That show, Mystery Diagnosis is real... it is sometimes very hard to make a diagnosis and people go years before they find the right specialist.

    Have you contacted the Mayo Clinic? They take unusual cases as far as I know. The husband of one of my riding instructors was accepted there for unusual migraine headaches for example.

    I wish you every luck. Life is so unfair.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  2. #17
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    Mar 2008
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    New Bern, NC
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    So good to hear that things appear to have improved in your daughter's case. That is news we all want to hear.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  3. #18
    Join Date
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    Michigan
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    3 weeks post op

    I can't remember from her first surgery, but how long does it take for the swelling to go away. She is having quite a bit of pain where the swelling is. It is around her incision and down her lower back. She says it feels numb, and it is swollen. She had her 2 week follow up last Monday and her surgeon saw it and mentioned the swelling and didn't seem concerned about it at all.
    We were so excited when she was already doing so much better this time compared to last, but she still gets tired really quickly and things like just taking a shower tires her out and riding in the car, going over bumps is painful. We went out to the store the other night and did too much I guess because she was in quite a bit of pain when we got home. Is this all normal at 3 weeks?

  4. #19
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    Hi. At three weeks, both my daughters were still obviously recovering. I don't remember any swelling but if the surgeon isn't concerned then it's probably okay.

    Your daughter has been through so much. It is time for her to catch a break.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #20
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    Oregon
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    Hi,

    I agree with Sharon that your daughter's recovery sounds pretty normal for just 3 weeks out. She should take it very easy at this point and be careful not to overdo anything--easier said than done I know! She should be walking several times each day, probably for 10-15 minutes each time unless your surgeon advised something different. She needs plenty of rest and fluids. She needs to eat very nutritious meals to help her heal and to build her blood back up. All this takes time.

    You can always call the surgeon's office to check any concerns with them, for instance if the swelling doesn't start to improve or gets worse. But right now it sounds pretty typical.

    Take care, and thanks for the update.
    Gayle, age 47
    Boston brace as a teen for AIS
    Oct 2010 fusion T8-sacrum w/ pelvic fixation, TLIF at L4/5.
    Feb 2012 major A/P revision for broken rods


    mom of Leah, 12 y/o, diagnosed Jan '08 with 26* thoracic JIS (age 6)
    4/08 26 degrees, brace 16 hrs/day
    9/08 17 deg. OOB - brace discontinued
    9/09 30 deg, resuming brace
    5/10 VBS Dr Luhmann Shriners St Louis
    5/14 stable 4 yrs post-op, 14* T

    also mom of Torrey, 9 y/o son, 12* T, decreasing spontaneously (from 19*)

  6. #21
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    Jan 2012
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    Yacolt, WA
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    When I read,"Is it normal?", I was going to respond that your daughter's activities are ABOVE normal! She is doing a lot and I am not surprised that she is tired or that she says that it hurts when you go over bumps. Encourage her to pace herself and nap in the daytime. It is so easy to overestimate what she can do. I remember going shopping shortly after my surgery, but being too tired to try on the clothes after I had chosen them.

    Some swelling on the incision line is normal as is a slight redness, but if it is bright red and spreading and you see any pus, I would worry.
    Susan
    Last edited by susancook; 11-07-2013 at 06:16 PM.
    2011: Degenerative Adult Onset Scoliosis @65
    25* T levoscoliosis/ 36* L dexroscoliosis w/ 11.2 cm coronal & 3.5 cm sagittal balance T kyphosis 90*
    Severe disc degen thoracic & lumbar stenosis
    Surgery: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    3/2013, Dr. Hu @ UCSF
    Postop hernia @ ALIF incision repaired 2014
    8/2014: Rev surgery OHSU Dr. Hiratzka hardware removal T3-T5; reinstrument & revision fusion T3-T6
    Proximal Junctional Failure w/ SCI
    Cauda Equina Syndrome

  7. #22
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    May 2006
    Location
    Michigan
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    Adrenal Insufficiency and hypothyroidism

    I know this is unrelated to scoliosis, but my daughters recovery went downhill from the last time I posted. She was having extreme fatigue, which we kind of blew off since she had just had surgery. Then she got to the point where her arms and legs felt like "lead" and all her joints ached including her fingers and she could barely get out of bed. Then she started lactating! At that point we went to see her GP and he did some bloodwork. He found her prolactin level was high and her thyroid low. He thought she could have a pituitary tumor so he sent her for an MRI. That showed no pituitary tumor and in the meantime she found 2 bald patches on her head and the rest of her hair was getting very thin. He referred her to an endocrinologist. Her appt. there was January 22. When she got to the appt. the endo quickly found out she had orthostatic hypotension and tachycardia and sent her to the Emergency Room right away saying she was having an adrenal crisis. She had the tachycardia in the hospital and they kept her on a heart monitor the entire time and just thought she was in pain so it was making her heart rate go up. Plus everytime she got up in the hospital she was dizzy and shaking. I told the doctor it was going on since surgery but she still insisted she go right to the ER. The next day they did an ACTH stimulation test and found out she has secondary adrenal insufficiency along with hypothyroidism. The endocrinologist says she could have had this for quite some time and perhaps it could have contributed to her never ending pain. The stress of the surgery on her body just accelerated the symptoms until she knew something was definitely wrong. She said she has many patients who complain of low back pain that have low thyroid and adrenal insufficiency. She just started on hydrocortisone and synthroid. I sure hope we have finally found the answer to her never ending health problems. She has not felt "good" in years. She has had insomnia, rapid heart rate, been vomiting at random times, felt depressed, tired and had the back pain. She had told several physicians but no one really put the symptoms together. I just thought I would share this with you all. She also has had several steroid injections between her first surgery 7 years ago and her recent revision.

  8. #23
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    Jul 2012
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    Wow! She has been through the ringer! The scoliosis alone can stress a body and person and to top it off with so many other things, my heart hurts for her. Praying that she is now in the true road of recovery from everything.
    Tamena
    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelley (St. Louis, Mo)

  9. #24
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    Wow I hope that now that she has a correct diagnosis she can start to feel better after SEVEN YEARS! Wow. I hope she isn't also depressed after all that. Other people on this or the other scoliosis forum have the POTS thing your daughter has. So that may go along with some syndromes that also have scoliosis associated with them.

    It's the obvious thing to try to connect the surgery with whatever happens downstream but unrelated things can happen. The surgery was a red herring as a trigger and delayed the diagnosis it seems.

    Hopefully your daughter is finally feeling better now that she is on the meds.

    Life is grossly unfair. All we can do is press ahead.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  10. #25
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    LAL,
    This is an incredible story! She truly belongs on "Mystery Diagnosis". I honestly think that show helps other people with similar symptoms actually find needed relief. I feel SO badly for your daughter. This is the first time I've seen this thread, so that's why I haven't piped in with support earlier.

    Do they think the adrenal malfunction is due to the many steroid shots that she had been receiving? It scares me because I get these shots fairly regularly. I've had a bunch this last year. There is another lady on here, jrnyc, that had her cortisol drop almost to nothing after receiving regular steroid injections and then getting a final "whopping dose". It devastated her. Fortunately, she was able to recover...slowly.

    As far as your daughter being chastised for "being in pain" with not apparent cause? How dare they! I'm NOT a sue happy person AT ALL, but she lost SEVEN years of her life because no one but you (and I'm sure her friends and other family) believed her. I was made to take a medical MMPI where they said that I had somatic pain. Then the jerk looked at my chart and pulled up some x-rays and said, "But, surprisingly you DO have pathology." Duh! Those tests are geared against women. I do have something wrong with the other body systems that it asks you about. I've recently been diagnosed with Cervical Dystonia (Torticollis) and now some sort of other muscle disease (MD) that I have yet to get the results of (hopefully this week). Muscle diseases are very painful and can affect every other body system. So, even with those tests there are outliers, like me. I finally have found the source of MY pain and it is NOT somatic but can be proven by the EMG's that I have done. It's taken me from the time I was 12 (I'm 45) to get some real answers. My scoliosis was a red herring, too.

    As in your daughter's case, endocrine disorders can truly be very difficult to diagnose. While the scoliosis and subsequent surgeries may have been a "red herring", this may have also proved to be what accelerated her underlying disorder to the point where she now has an accurate diagnosis and can get well. I hope her new medicines help. She is young and deserves to enjoy her youth. Hopefully, she will get well and feel great and enjoy her young adulthood. She may be able to look back and think that this is what it took to finally feel better rather than feeling like so many years were wasted. I'm just so surprised that they didn't do any of this kind of blood work before her surgeries. For some reason I thought it was standard to check at least the thyroid. I know, for me at least, they check my thyroid pretty often, even though it's never been off. But I have the tachycardia issues which I'm on medication for.

    I wish her well and am hoping that these new meds finally do the trick.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  11. #26
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    So sorry that your daughter has been through this, but hope that she is now on the mend. One time my daughter had a physical problem that could have easily been kissed off by her pediatrician as having an emotional etiology. After the doctor did her exam on my 4 year old daughter, she turned to me and asked, "Do you think that this is an emotional problem?". She respected that I knew my daughter the best. I told her "no", so she referred us to a specialist who did surgery, and that solved the problem! She could have easily just assumed that it was all emotional, and I appreciated her trusting that I as her mother knew her the best. I am sorry that nobody believed you and your daughter about her pain and did a better workup.
    Susan
    2011: Degenerative Adult Onset Scoliosis @65
    25* T levoscoliosis/ 36* L dexroscoliosis w/ 11.2 cm coronal & 3.5 cm sagittal balance T kyphosis 90*
    Severe disc degen thoracic & lumbar stenosis
    Surgery: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    3/2013, Dr. Hu @ UCSF
    Postop hernia @ ALIF incision repaired 2014
    8/2014: Rev surgery OHSU Dr. Hiratzka hardware removal T3-T5; reinstrument & revision fusion T3-T6
    Proximal Junctional Failure w/ SCI
    Cauda Equina Syndrome

  12. #27
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    May 2009
    Posts
    3,659
    just a note about steroid shots...
    i had a big crisis because i got too much steroid....
    my cortisol level crashed to .39....
    it should never be lower than 5.0 and my doctor tells
    me she is not happy if it is under 12.0
    i was so exhausted i could barely breathe, and am lucky
    my cortisol level came back after 6 months...

    i am not saying the steroid shots caused what is wrong with
    your daughter....just pointing out to be careful with them...

    i just had a half dose steroid shot in left hip, after struggling with pain for almost a year....it has helped eliminate the hip pain....and was half the "normal" dose....i got 20 mg instead of 40....
    hip pain is supposedly being caused by lopsided loading on hips
    due to scoli....

    hope your daughter feels better every day....
    and please never let a doctor ignore any symptom that you feel
    is important....

    jess...and Sparky, the wonder puppy

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