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Thread: 5 Months Post Op!

  1. #1
    Join Date
    Feb 2009
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    Unhappy 5 Months Post Op!

    I'm now 5 months out from my revision surgery! It doesn't seem possible! I have been having some difficulties, so I wanted to see if anyone here had similiar issues/advice.
    I'm fused T2- L5 (I think- can't remeber the exact vertebrae- all I know is it is a long fusion!!) with osteotomies and a VCR. I'm 27- had my first fusion when I was 12. I have a severe lung restriction issue- my lung function is very low- because of the way my lungs grew with the brace I wore for 10 years as well as the compression of my spine on them. Does anyone else have breathing issues? Is there anything you can do to make it any better? I've seen multiple doctors for it- pulmonary specialists, ect., and nothing they do seems to make a difference. Inhalers don't work because it's obsrtructive not restrictive lung disease.
    My other question is about pain. I am still having a lot of pain control issues. I'm taking 15mg of Methadone (as a pain reliever) in the am & pm, and then Percocet 10mg 3X/day. This works well to control my pain as long as I dont *do* anything. But as soon as I go out shopping, the movies, a picnic, anything- the pain is terrible. They are hesitant to give me anything stronger long term because of my severe lung dysfunction. What do you guys do for pain relief? I can change my activity level some and not do as much, but I want to have a life as well. I'm still young and have a lot of life left in me! I feel like I shouldn't be in this much pain all the time.
    I'm currently not working and my doctors are recommending social security disability. That is a huge blow to me as well- I definitely wasn't expecting that at this point in my life.
    Anyways, any advice is appreciated! Thank you!

  2. #2
    Join Date
    May 2008
    Location
    reno,nevada
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    Hi Pink

    I found hot water helps with pain. I took 5 hot 107 degree baths every day for 3 months after my surgeries. Drink plenty of water if you do this.

    You poor thing. You did have a whopper of a surgery....

    Is it the walking that is causing the pain?
    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF 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

  3. #3
    Join Date
    Feb 2009
    Posts
    17
    Thank you for the quick response, Titaniumed! You probably hear this a lot, but it's different talking to a guy that has scoli! I usually encounter women with it!

    Thank you for the tip regarding hot water! I have a rice heating pad that I use, which helps some. I am not able to submerge my back in a bath/pool/hot tub because of open sores on my back. A reaction to a narcotic they had me on made me pick/scratch large patches of skin on my back. They are still healing as I can't seem to stop picking them now. It's pretty embarassing.

    I did have quite the surgery, and it looks like you did too! How are you doing with your recovery? Are you able to work? It seems that most in our situation are able to resume work... I'm having a hard time accepting that I may not be able to go back.

  4. #4
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
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    416

    Wink

    Hi Pink
    I had a revision 4 months ago and my pain level is okay like you as long as I am not doing anything. When I do out, I can be out about 3 hours doing errands and such and then I get to feeling pain in my back and intense fatigue. It is my endurance that is taking the longest to come back for me. I don't have breathing issues like yourself though. I am intending to return to work in a few weeks as my funds are getting low. I am truly sorry about your situation. Have you tried a pain specialist? You are still fairly early in your recovery. After my first surgery, I remember I had major pain for at least 9 months, and then was on pain medicine for the first year and a half. Everyone is different in the pace of their recovery. Good luck in finding a solution and best wishes to you.....
    May 2008 Fusion T4 - S1, Pre-op Curves T45, L70 (age 48). Unsuccessful surgery.

    March 18, 2010 (age 50). Revision with L3 Osteotomy, Replacement of hardware T11 - S1 , addition of bilateral pelvic fixation. Correction of sagittal imbalance and kyphosis.

    January 24, 2012 (age 52) Revision to repair pseudoarthrosis and 2 broken rods at L3/L4.

  5. #5
    Join Date
    May 2008
    Location
    reno,nevada
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    Pink

    I had an extremely BAD experience with a heating pad 20 years ago. I fell asleep on it, and couldnít walk after I woke up. Major spasms.....

    I never used one since. I have heated seats in my cars, which are mandatory for the scoli, but donít fall asleep on a heating pad!

    Sorry about your skin condition. Maybe Epsom salts would help in a bath. Ask you Doctor first!!!!

    I came out great. My recovery in the first 3 months was hell, I was in survival mode. I took about 18 months off work, then went back. I keep moving as much as possible.

    How many levels did they fuse on you on your first surgery? Do you know which levels, and your initial cobb angles? Just wondering. Why didnít they address the whole thing?

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF 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

  6. #6
    Join Date
    Oct 2009
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    PA
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    Quote Originally Posted by Pinkpineapple View Post
    A reaction to a narcotic they had me on made me pick/scratch large patches of skin on my back. They are still healing as I can't seem to stop picking them now. It's pretty embarassing.
    There is a long name for this condition, which can occur as a response to stress and stress in combination with other effects such as medications. I developed it on my scalp at a time of high stress after a lengthy hospitalization (which was unnecessary - the main stress). The EEG they did - one of many useless tests - left glue all over my scalp. I started to pick at it nervously to get it all off and it snowballed as scabs formed.

    On this account, I read up on it - discovered (good ol' Google) that it's not that uncommon. There are even quite a number of support groups (name Trichotillomania, includes pulling out hair). There are medications that help. Seems it's generally considered a form of OCD. Wearing light cotton gloves for a while (my idea) helped me the most. Whatever else it is, it's a habit - or becomes one, anyhow.

    Good luck! You have so much to contend with and at such a young age. Will be thinking of you. I love your whimsical name!
    Last edited by Back-out; 07-18-2010 at 08:21 PM.
    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

  7. #7
    Join Date
    Feb 2009
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    17
    Quote Originally Posted by Back-out View Post
    There is a long name for this condition, which can occur as a response to stress and stress in combination with other effects such as medications. I developed it on my scalp at a time of high stress after a lengthy hospitalization (which was unnecessary - part of the stress). The EEG they did - one of many useless tests - left glue all over my scalp and I started to pick at it to get it off and it snowballed.

    On this account, I read up on it - discovered (good ol' Google) that it's not that uncommon. There are even quite a number of support groups (name Trichotillomania, includes pulling out hair). There are medications that help. Seems it's generally considered a form of OCD. Wearing light cotton gloves for a while (my idea) helped me the most. Whatever else it is, it's a habit - or becomes one, anyhow.

    Good luck! You have so much to contend with and at such a young age. Will be thinking of you. I love your whimsical name!
    Thank you for replying and letting me know that I am not alone with this condition! It has become quite embarassing, and my family and friends do not understand at all. They keep telling me to just stop doing it, not realizing that it's just not that easy. I am trying though, and the wounds are slowly healing. The glove idea is a good one- thank you!

    It sounds like you have a lot going on too- I hope they are able to diagnose you soon- I can only imagine the frustrations you're going through as well.

    Do you happen to know of the names of medications that could maybe help with the picking problem? I would like to ask my doctor about it.

    Thank you again! Take care!

  8. #8
    Join Date
    Feb 2009
    Posts
    17
    Quote Originally Posted by titaniumed View Post
    Pink

    I had an extremely BAD experience with a heating pad 20 years ago. I fell asleep on it, and couldnít walk after I woke up. Major spasms.....

    I never used one since. I have heated seats in my cars, which are mandatory for the scoli, but donít fall asleep on a heating pad!

    Sorry about your skin condition. Maybe Epsom salts would help in a bath. Ask you Doctor first!!!!

    I came out great. My recovery in the first 3 months was hell, I was in survival mode. I took about 18 months off work, then went back. I keep moving as much as possible.

    How many levels did they fuse on you on your first surgery? Do you know which levels, and your initial cobb angles? Just wondering. Why didnít they address the whole thing?

    Ed
    Ouch, I can only imagine the painful burns that were caused from the heating pad!! The one I use is not electric- it's a rice one that I heat up in the microwave. So it cools down and I am able to fall asleep with it on. Maybe something like that would be useful to you, if you're hesitant to use an electrical on again (I don't blame you! )

    I can't remember the levels of my 1st fusion.. it was maybe T7- L4? It was lumbar area and it was definitely not as long as my fusion now.

    The reason for such a small level of fusion during the first surgery is because they were forced to do the operation before I was done growing. My curve was progressing so quickly that my organs were in danger. They fused only the worst part of the curve so that the rest of m spine would continue to grow. Otherwise, if they had fused the whole thing like I have now, my spine/torso would be extremely unproportional to the rest of my body (very short). The first fusion allowed the rest of my torso to grow.

    They were hopeful that the short fusion back when I was 12 would hold, and not require more surgery, but unfortunately my curve/pain/rotation/lung fuction/organ space continued to get worse over time. The second revision surgery was not optional either- my life was in danger.

    I also have a form of muscular dystrophy that causes the severe form of scoliosis that I have, along with many other problems. The MD is slow or non-progressive, so I am lucky in that respect, but have had many joint and bone issues because of it.

  9. #9
    Join Date
    Oct 2009
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    PA
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    Quote Originally Posted by Pinkpineapple View Post
    Do you happen to know of the names of medications that could maybe help with the picking problem? I would like to ask my doctor about it.

    Thank you again! Take care!
    I was afraid you'd ask when I wrote that meds can help, but decided to mention it even though I forgot WHAT meds. That's one of the reasons I noted the existence of support groups and the looong name for the condition. Just googled it again, and see just about any and all have been tried - eg., SSI antidepressants as well as anti-anxiety meds and those for mood disorders..

    It must be stressed that there's no medication alone that can solve this problem. Medications can just make it that much easier to tackle the compulsion. Usually a medication will be used with some form of CBT (Cognitive behavior therapy). Speaking as both a sufferer and trained psychologist, I find it's most helpful when reading about a condition and treatment (dx and rx), to see which patients you most identify with as you read the stories. Then you can get the best idea about what's most apt to help YOU.

    Also as you read about others to see what's going on, it's good to aim your reading at people who have managed the condition. Otherwise, you can get bogged down learning about yet one more ghastly condition with no solution! "Trich" (not the VD) CAN lead to extreme situations with scarring and whatnot. It can be described as a compulsion (OCD) or an "impulse control disorder " (there's a certain amount of controversy in the DSM IV - Diagnostic Manual).

    I prefer to view it as a "bad habit" and approach it that way. It's so easy to medicalize everything! That said, I DO have a bias in favor of psycho-therapy if only towards the "know thyself" goal.

    But simplicity, if possible.

    I wanted to heal first. I thought of nail-biting and bitter applications. Seemed similar. First thing is to take care of the current "crop" of scabs so itching is reduced and there simply aren't as many. Ideally, none. I figured controlling (in a practical way) my ability to pick - especially, in situations when I was most anxious - mattered most. Sample trigger: sitting at the computer reading about scoliosis surgery! . Also, at night ( for a while I was doing it in my sleep).

    Hence, antihistamines and the gloves helped me. Antihistamines are also sedative, so if you can handle the sleepiness, they can be a plus.

    If an anxious person finds a "good" (effective) way to relieve that unique tension, the habit is always going to be there - latent. Short of eliminating all anxiety! So we need to retrain our habits.

    Good luck, Pink! You have a lot to be anxious about (Hey, depressed too - who's counting? ) Allow yourself to know that, then work on managing this symptom of underlying issues. The first step is admitting how much it's a challenge! Fooey on trivializing from others (which just makes it that much harder. As if it weren't enough to feel embarrassed about the "evidence"!). When we take it seriously, it's much easier to devote as much energy as it takes. It takes a lot of focus to break habits . Again, online support can help, within limits, as can medication. Also CBT (with a therapist) can work wonders, especially for young adults.

    Seems to me you EXTRA deserve help dealing with your difficult health conditions. Some therapists are trained to work with young people in your boat. Then your health will take as little out of you as possible. That leaves you that much more life to live and in the best possible state for decision making.

    PS Thanks for your kind encouragement!
    Last edited by Back-out; 07-19-2010 at 12:19 AM.
    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

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