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Thread: New To Forum - Revision needed?

  1. #76
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    May 2008
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    I had severe rotation in my curves.....I also have a CT that shows the rotational correction after my surgeries, let me know and I will post it.

    What do you think now? Keep it local and do the full ALIF?

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  2. #77
    Join Date
    Oct 2019
    Location
    Washington state
    Posts
    51
    Itís hard to explain but both my husband and I feel more comfortable with the surgeon in Seattle. We made the phone call earlier today to commit to the surgery with the surgeon in Seattle. 1 he is a spine only surgeon 2 he does way more fusion and scoliosis cases than the more locally located surgeon. I am still terrified about surgery but when I subtract all the fear and anxiety out of the decision making process, all roads seem to me to lead to doing it now instead of later is the more logical decision.

    I would rather be limited in flexibility and range of motion by this surgery and after recovery be limited and pain free as opposed to not doing the surgery and being limited BY the pain, especially with a 2 year old terror and a 7 month old who will be toddling around before we know it.

    What do you think? Itís looking like it would be either end of February or early March which means the meat of the painful recovery by the time the kids birthdays roll around (middle of May and middle of June).

    Long term after a fusion down to the pelvis can most people wipe themselves still? I think that is one of the limitations I am most concerned about potentially having long term.
    Feb 2003 - Diagnosed C (35) T (45) L (25)
    Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
    Oct 2019 - Lumbar curve progressed to 40
    Nov 2019 - Thoracic curve progressed to 31
    ??? 2020 - T10-S1 Fusion with SI fixation

  3. #78
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    I see....The surgeon in Seattle will probably TLIF the T10-L4 Levels. And ALIF the bottom 2 levels....This spares the large anterior incision. Did you ask about BMP and or auto graft? What will he use?

    Establish communication with your surgeons nurse or PA. Do this by e-mail for questions. When asking questions do only 2 or 3 questions at a time, since some answers are hard. You will get simple short answers since these people are extremely busy. Let us know when you get a date.

    All of us go through the fears....we walk in like zombies and get it done. After the experience, it seems that revision patients have all the bravery in the world. Learn to breathe!

    The first 6 weeks can be tough. (For adults age 50) You will probably do much better since you are 28....I wouldn't plan on doing too much at all for the first 3 months. Unless you are calling the cows with an accordion. Remember, no BLT's No Bending, lifting or twisting for a LONG TIME. Most books will average out and say fusion takes 12 months. babies heal in 2 minutes and seniors take forever to heal. You are younger so you should heal up in a few months. Age plays a part in the healing process.
    https://www.youtube.com/watch?v=CMCIEtC-tJk

    The immediate recovery includes the weaning process. Weaning off Oxy or Percoset. This is probably the hardest part. You will get constipated and opioid constipation hurts like heck. It overrides the spine pain. I would ask about controlling pain in general. Try not to plan on a long term opioid process....The faster you get off, the happier you and your surgeon will be. You will have pain, and push past pain in your recovery.

    Wiping takes the "long" reach. I was also warned, but it wasnt a concern since my pain was mind blowing. You will adapt. If you cant reach, they have wiping aids. They have devices for everything these days. I dont use any devices at all anymore except pillows when I fly on airplanes. I put 2 soft down pillows in a carry on bag.

    My comical answer on wiping included going down to the car wash and hanging on the hood. You know that large brush that does the top of the car? It doesnt miss. (smiley face) (Full fusion humor)
    Learn to laugh more. Comedy helps alot. When you laugh hard for some reason there is no pain. Amazing how that works.

    Your surgery is about you...I know its hard to have kids and do these things, but you cant be worrying about anything else doing a recovery. No cleaning, no shopping, no farm, no nothing. Concentrate on healing yourself 100% since we only have one chance to do these things.

    This time is for you.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  4. #79
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    Oct 2019
    Location
    Washington state
    Posts
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    Thank you Ed for your thoughtful reply. I appreciate it so very much. I guess the big hurdle right now is making sure insurance approves the procedure through this surgeon in Seattle even though we have another surgeon closer to home that is willing to do the procedure. Does insurance usually get picky like that?
    Feb 2003 - Diagnosed C (35) T (45) L (25)
    Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
    Oct 2019 - Lumbar curve progressed to 40
    Nov 2019 - Thoracic curve progressed to 31
    ??? 2020 - T10-S1 Fusion with SI fixation

  5. #80
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    Oct 2019
    Location
    Washington state
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    As a follow up Ed, he hasnít mentioned specifically yet whether it which bone sources it will be. I was so overwhelmed and nervous in the office that I had a hard time remembering all the questions I had. However, he is really good about calling and emailing back whenever you have questions. All in all, a top notch surgeon it seems so far. I know that once the ball gets rolling he also wants me to have a CT Myelogram, apparently I have hyperreflexia on top of all the scoli issues, any thoughts there?
    Feb 2003 - Diagnosed C (35) T (45) L (25)
    Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
    Oct 2019 - Lumbar curve progressed to 40
    Nov 2019 - Thoracic curve progressed to 31
    ??? 2020 - T10-S1 Fusion with SI fixation

  6. #81
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    reno,nevada
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    Quote Originally Posted by JScoli91 View Post
    Thank you Ed for your thoughtful reply. I appreciate it so very much. I guess the big hurdle right now is making sure insurance approves the procedure through this surgeon in Seattle even though we have another surgeon closer to home that is willing to do the procedure. Does insurance usually get picky like that?
    Surgeons usually have pretty good insurance people working for them as they want to know about getting paid.... This really comes first. Direct your questions through them. I dont know what kind of policy you have but they will know.

    I changed my primary care physician to my scoliosis surgeon. That way I had him directing all my medical moves and skipped all the visits through my GP. Seems kind of crazy to go visit your scoliosis surgeon only to have them tell you you dont have permission from your GP.

    You will want to be sure about all your co-pays. My last MRI co-pay was a shocker. That will NEVER happen to me ever again. Always be clear about this before hopping on any diagnostic tables.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  7. #82
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    Quote Originally Posted by JScoli91 View Post
    I have hyperreflexia on top of all the scoli issues, any thoughts there?
    Who diagnosed you with this?
    https://en.wikipedia.org/wiki/Hyperreflexia

    Did you have a spinal cord injury at some point?

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  8. #83
    Join Date
    Oct 2019
    Location
    Washington state
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    For as long as I can remember I have always gotten the comment that my leg reflexes are really abnormally strong but it wasnít until I saw this surgeon in Seattle that I saw it specifically stated in his report. I got a message from his office that before he develops a formal surgical plan to submit to insurance he wants me to have a CT myelogram. Pretty standard before a fusion procedure or is that because of my reflexes?
    Feb 2003 - Diagnosed C (35) T (45) L (25)
    Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
    Oct 2019 - Lumbar curve progressed to 40
    Nov 2019 - Thoracic curve progressed to 31
    ??? 2020 - T10-S1 Fusion with SI fixation

  9. #84
    Join Date
    Oct 2019
    Location
    Washington state
    Posts
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    No spinal cord injury in my past from what I my husband or my parents can remember.
    Feb 2003 - Diagnosed C (35) T (45) L (25)
    Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
    Oct 2019 - Lumbar curve progressed to 40
    Nov 2019 - Thoracic curve progressed to 31
    ??? 2020 - T10-S1 Fusion with SI fixation

  10. #85
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    Oct 2019
    Location
    Washington state
    Posts
    51
    Besides my leg reflexes the only other response that I have been told is odd is my response to cold. When I feel cold I donít just shiver like normal, my whole body jerks and has a spasm pretty much. This started about a year or so after my first fusion. I have had plenty of imaging done of my whole spine over the years in all kinds of modalities so I would assume that if it is something with my spinal cord someone would have seen something by now right?
    Feb 2003 - Diagnosed C (35) T (45) L (25)
    Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
    Oct 2019 - Lumbar curve progressed to 40
    Nov 2019 - Thoracic curve progressed to 31
    ??? 2020 - T10-S1 Fusion with SI fixation

  11. #86
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    Quote Originally Posted by JScoli91 View Post
    he wants me to have a CT myelogram. Pretty standard before a fusion procedure or is that because of my reflexes?
    He is suspicious of something and wants to take a look....he might look up high into the neck.

    I didnt have a CT done for my scoliosis surgeries, but I had one done 7 months before looking for stones which was at the radiology dept at the same hospital. I cant answer your question but Linda would know. I have had 2 CT's looking for stones, kidney and gall. I lost my gall bladder after my scoliosis surgeries. Its a rare complication of scoliosis surgery.

    I have had Iohexol and Invisiplaque used as contrast agents in the past.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  12. #87
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    Oct 2019
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    Washington state
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    If he found something on the CT possibly related to my spinal cord would that necessarily delay fusion or change the game plan do you think? Itís not like scoliosis can cause hyperreflexia right?
    Feb 2003 - Diagnosed C (35) T (45) L (25)
    Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
    Oct 2019 - Lumbar curve progressed to 40
    Nov 2019 - Thoracic curve progressed to 31
    ??? 2020 - T10-S1 Fusion with SI fixation

  13. #88
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    Quote Originally Posted by JScoli91 View Post
    Besides my leg reflexes the only other response that I have been told is odd is my response to cold. When I feel cold I donít just shiver like normal, my whole body jerks and has a spasm pretty much. This started about a year or so after my first fusion. I have had plenty of imaging done of my whole spine over the years in all kinds of modalities so I would assume that if it is something with my spinal cord someone would have seen something by now right?
    I also have the occasional jerks, stings, and pain yelps. Not like tourettes, but I guess I could have some fun with that....Ha ha

    CNS patients can be sensitive to hot and cold. I cant handle the cold anymore and proving this out by hanging out in Colombia as the weather here is perfect. Its better than Hawaii. Its so ironic that a lifelong skier ends up this way. Its ok, I have had enough powder skiing. I also do not like hot weather anymore, I melt instantly.

    I cant say if anyone has seen anything wrong with your spinal cord or not. If its not conclusive, a doc might not say anything afraid of scaring you....

    Its all about our brain and our spinal cords. Our CNS system....Encased in our skulls and in our crooked spines, it runs things. Mess with it and you have problems.

    Let us know what they see. If you request your CT's burned to disc, please be aware that radiologists report EVERYTHING THEY SEE. So dont be alarmed if they see things that dont matter. I have all sorts of things in my reports and its nice to know. Who is perfect? Not many of us.

    We do the best we can with what we have....

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  14. #89
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    Quote Originally Posted by titaniumed View Post
    He is suspicious of something and wants to take a look....he might look up high into the neck.

    I didnt have a CT done for my scoliosis surgeries, but I had one done 7 months before looking for stones which was at the radiology dept at the same hospital. I cant answer your question but Linda would know. I have had 2 CT's looking for stones, kidney and gall. I lost my gall bladder after my scoliosis surgeries. Its a rare complication of scoliosis surgery.

    I have had Iohexol and Invisiplaque used as contrast agents in the past.

    Ed
    I'm sure it varies by surgeon. At UCSF, I think it's protocol to get a CT scan if the patient has any radiculopathy (arm or leg pain).
    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

  15. #90
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    Quote Originally Posted by JScoli91 View Post
    If he found something on the CT possibly related to my spinal cord would that necessarily delay fusion or change the game plan do you think? Itís not like scoliosis can cause hyperreflexia right?
    Its up to your surgeon....

    Tough question.... Some of us can have our game plans changed in different ways.....maybe not so much scoliosis patients but anyone that has any sort of neurological or CNS issues. There are so many different things that can happen that its hard to answer a general question like this. If I were a doctor, I would probably go into overload thinking about the multitude of things that can happen to the human body. Ask Dr Beven or any specialist and you can watch the smoke come out of his or her ears....Questions are easy, and answers can be difficult or impossible to answer. My Goddaughter is a doctor and will be a ped trauma "lead" surgeon some day if she ever stops going to school. (never happen) (Its been 16 years now) Anyway, she hates questions (from untrained laymen) (meaning myself) and I can see how it throws her mind into overload. She will be a 4 minute doctor, 4 minutes to save a childs life. Intense focus. Some day, I will get to see her work in an ER room.....and I will stay out of the way.

    For example, if you get a virus, it can change things overnight. Which virus? Hopefully its one they know about, and if they have identified it, they dont have an answer....

    They thought I had cancer, they did exploration, and guess what? No cancer. Im still here. (BTW, FYI, they have cancer detection pens now) Did you get all the cancer? Yup. Good answer.

    Our bodies are complicated. Really complicated. We go in and do these surgeries with no guarantees. Most of us come out good otherwise they wouldnt be fusing us. Remember the Hippocratic oath, Do no harm. (and no cutting for stones unless you are trained) Trained in 400BC? Wow! Stones have been killing people since the beginning of time. Drink your water, it dilutes. Thats been proven.

    I made my decision only after my surgeon told me "It will help"

    I had to take that chance. Many of us have to take that chance. Its what we all have in common.

    And we are trusting brave souls......

    If you trust your surgeon, tell him you trust him. It helps.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

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