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Thread: Second fusion coming up...

  1. #16
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    They will insert BMP into spacers probably made from PEEK. Its a thermoplastic, and its a dull white in color.
    https://en.wikipedia.org/wiki/Polyether_ether_ketone
    https://www.researchgate.net/figure/...fig1_313128341

    The BMP (Infuse kits) are very expensive. They act as a catalyst to speed up the healing process. I had no bone used in my surgeries, they used all synthetics.

    The BMP is inserted into a collagen sponge which is inserted into the machined cavity inside the spacer and then inserted by an insertion tool. This prevents the BMP from dripping out which is important because BMP dripping will grow bone fast. This is the only FDA approved usage of BMP in scoliosis surgeries, so it is an on label procedure. Its the safe way to go. I have 13mm spacers from L1-Sacrum, they lift and separate and help create room for the nerves. Open ALIF is the full rebuild and has advantages over other methods, especially better removal of disc material that surrounds the spinal cord from the front. Sometimes, disc material can be left in there on PLIF and TLIF and create problems. I have over 2-1/2 inches of plastic in my back. Susan was also done this way in a revision by Dr Hart.

    They also grind out all the bone spurs from the front. This 360 degree access covers all the bases. All areas are addressed around the vertebrae.

    Partial corpectomy was performed where they remove the end plates. End plates get damaged from DDD, and die, and you need to bleed to fuse properly. Its total access and you will fuse with this method. Once again, its the full rebuild, and you will fuse. If you look at my x-rays you will see 3 dots on each level. These are radiopaque markers so they can see if the implant moves. They do machine gripping points on the spacers which hold the spacer in place.

    When I woke up and stood up in ICU after my surgeries, all that sciatica pain was GONE. I knew right away. It was a miracle. I never expected such sucess in my lumbar. I was prepared for more pain down there, as long as it was less pain. I have no lumbar pain whatsoever.

    I had an ileus and was NPO for 9 days. That is where the intestines stop working. They have meds for this and it was restored. I was huge, 9 months prego. That comes off in the walking after surgeries. I also had a lot of edema, huge ankles, that also comes off with walking.
    https://en.wikipedia.org/wiki/Nothing_by_mouth

    Establish e-mail access with your surgeons nurse or assistant. Ask them about COVID testing and when this will happen. You could ask about an antibody test to see if you have had COVID. The antibodies are helpful. You cant afford to get sick right now so I would stay low at home. Eat light and healthy and also ask about any meds if you are taking any right now. I went in clean as I didnt want the anesthesia team to have to deal with extra chemical substances in my system. I would address this with them.

    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. #17
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    May 2008
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    Quote Originally Posted by Pooka1 View Post
    That's true. But my one daughter's curve moved 5 degrees a month for several months. To the extent I have been able to calculate progression rate for other kids here, there is nobody whose curve progressed quicker at least in that small set. Not even close. I think it is likely she would be north of 90 degrees which is where you start seeing medical issues. And we can't ignore suicide when a person loses hope for any kind of life.
    Dingo's boy Scott also had an alarming progression rate right before he was tethered. I don't remember, you would have to look. It was a shocker.

    Dr Boachie has scoliosis scouts looking at kids (probably at elementary schools) in Ghana. If they miss one like Juma Genda, it's not going to be good.

    I have also seen adults with big curves running around. Once hiking in Oregon in the middle of nowhere of all places. This lady was pushing 90 and she was about 65 ish. I could see the pain in face.

    I would be a fantastic scout. I can spot a scoli 1/4 mile away. But can barely see my computer screen half the time. (Smiley face)

    I would have had a heart attack. NSAIDS are great, but hard on the system. I was on and off those for years.

    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

  3. #18
    Join Date
    Oct 2019
    Location
    Washington state
    Posts
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    Hi Ed, my name is Jessica, so sorry I didn't divulge that, no idea why I didnt.

    So would you say that sitting comfortably for only 5-15 minutes at a time is pretty normal for immediate post-op and recovery or do you think the need to not sit for very long after your surgery was more so because you couldn't sit for very long before surgery anyway?

    The hospital plans on covid testing me 3-4 days before my surgery to ensure I am negative but they havent said anything about antibody testing. The hospital policy currently (since we are in WA state) is that the last time my husband can see me before surgery is dropping me off at the front door of the hospital the morning of and afterwards he isn't allowed in the hospital at all, not even when I am discharged, he can only pick me up at the front door. My question would be, could they covid test him to ensure he is negative that way he could be with me? I don't want to go through hell all alone in the hospital for the 10-14 days they project I am going to be admitted. Plus, who would be there to advocate for me or support me? Lord knows the nurses are busy enough they wont want to hold my hand for 5 minutes if thats all I need.

    The only meds I am taking right now is sertraline 100mg 1x/day for anxiety (been on this for almost a decade) and gabapentin 300mg 3x/day for about the past 2 months. The gabapentin takes care of 50% of the nerve pain and I have breakthrough pain every day but I am also having a lot of side effects from the gaba (I must be a lightweight). That's the only reason they dont want to up my dosage of gaba even though I am still having breakthrough pain, don't want to make my side effects worse.
    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

  4. #19
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    May 2008
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    Thanks Jessica.....

    Many people or adults have trouble sitting after scoliosis surgery, the thing is that they don't report times so its hard to measure how painful it is to sit. It was bad for me, and bad before my surgeries, I don't know if there is any relationship, but figured I would point that out. Another thing that needs to be adjusted for is that I was 49 and you are 29 so 20 years younger. The values I report have got to be substantially better with you being 20 years younger. Maybe you could just cut `all the values I report in half, and assume that's the worst. Will you do a 6 month recovery? I don't know, but we will find out. You need to go in and be realistic and accept that things can happen. You have to accept "everything" that happens, and there is no blame. As far as I am concerned, remove the word blame from the English language. Most of the time, pointed fingers cause problems because the other person is innocent. Examples are not hard to find. There is no blame for scoliosis. I was mad about it in the hospital because it all came to a HUGE head, and you can be mad without blame, but that's still not worth it. I didn't know who to be mad at. My relatives from Europe 300 years ago? Controlling emotions is important...we all struggle with this, but in the hospital its especially important.

    You know with COVID, you can't assume anything. You can't assume the test is 100% valid, and then transfer COVID to everyone else in the hospital. There are too many factors and unknowns now. They really have to keep everyone out of there. I told everyone to please do not visit me, especially in ICU. I was in ICU for 4 days. I don't remember anyone, and lost about 4 or 5 days memory. That's was probably due to the Ketamine anesthesia. Ketamine in studies also reduces the need for opioids. Dr Joshi mentions this in his videos. You might ask about this. My surgeon told me they would keep me knocked out for a few days as I would not be able to withstand the pain. I didn't feel a thing or remember anything for the first 5 days. Incredible.

    When I think about the cow business, I think about what happened in England in 2001. They culled every hoofed animal in the British Isles, and also had the Marines in the woods destroying all the Deer and all the Elk. (smug face) They had to re-introduce new stocks of animals later. This was a major wake up call. For virus awareness, you have to look at history. HIV and AIDS is also an animal virus. They still do not have a vaccine and it's been about 50 years now.
    https://en.wikipedia.org/wiki/2001_U...mouth_outbreak

    When you get done at the hospital and released, you don't want to get COVID in your recovery. I guess at least your thoracic isn't being done, that might count as 1 bonus point, but still it's extremely dangerous. You don't want to get this from your husband or anyone else for that matter. I would discuss this with the doctors at the hospital and follow strict procedures with people at the house. You will have to be strong. There are a few of us who did solo recoveries here.

    I can't take Gabapentin.....it's too strong for me. Lots of member reports here on this medication years ago for post surgical nerve pain....I had it prescribed when my neck herniations surfaced, not my post scoliosis surgeries.

    I waited for 33 years. And the one thing I will say is that you really do have to hear from someone (a scoliosis patient) to "get it done", have surgery. If everyone had a bad report, and I never tried, that would be a shame. For the people that had bad outcomes is just horrible and I feel so sorry for them, but this is not a reason to pull the plug and give up. Other members here will tell you the same thing. My mentors for surgery are the hard core patient cases. Juma Genda,(Dr Boachie) John Sarcoma (Dr Lenke) Etc. It's the patients that made it through hardcore surgeries. We have a few of those here and I am proud to be part of a group of people fighting our disease. Linda Racine, Susan, Jackie, Melissa, Chet, Walid and all the others I am forgetting. Special thanks to Tonibunny of the British forum.

    Its Memorial Day where we give thanks for those that fought for our country, the best in the world....I once saw George Carlin here in Reno New Years 1990, and he came out and addressed the vets who fought for our country and for 60 minutes you could hear a PIN DROP and nobody went to the bathroom. Probably 5000 people. He was not doing jokes that night. There was no laughter. There was no noise. Let's dwell for a minute or two on this and give thanks.

    Since this is a scoliosis forum, I have to mention all the patients of the past that fought with their lives in our own scoliosis war....we are fighters also. Dr Cotrel pointed this out in one of his videos, and donated all profits from the CD system to scoliosis research. Prior patients with the CD system paid for this research through pain and agony.

    I can post links later if anyone wants them. It just takes too long to do posts searching for everything. Just ask

    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

  5. #20
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    Quote Originally Posted by titaniumed View Post
    Dingo's boy Scott also had an alarming progression rate right before he was tethered. I don't remember, you would have to look. It was a shocker.
    Scott has EOS. I was talking AIS. I do not have a sense of the range of progression speeds for EOS like I do for AIS.
    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."

  6. #21
    Join Date
    Sep 2019
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    159
    Quote Originally Posted by JScoli91 View Post
    I haven’t literally counted the number of responses on either side of it but I guess when I go to Facebook support groups and the like it is filled with more people saying how miserable their lives are now (even after they are fully healed) compared to before. I don’t know if that’s because all the people who are good and healed and happy are busy leading their lives or what but that’s the trend I seem to see at least.

    What were your results like Tina? Fused to your pelvis?

    We milk 800 cows and we have 25 employees. The vast majority of my job is behind my desk (even though I would LOVE to be out doing hands on chores with the cows more than I currently am). I am currently slated to not return to work until 3 months post-op but we will see.

    I know in the immediate recovery it’s going to suck major A$! and over the first year or so after there will still be hurdles to jump through, my concerns will be with what limitations I will be faced with for the rest of my life because of this surgery that won’t be able to be overcome and I will instead have to adapt to.
    My neck and my sacrum are not fused. The rest was done in two surgeries about 6 months apart. The second one unplanned.

    I am much older than you (60's) and my results may not apply to you. I'm having problems of an orthopedic nature which are mostly showing up since the surgery but may have started before and may have contributed to my scoliosis curve getting bad enough to cause problems later in life. I had developed problems walking. I considered myself strong before all this.

    Am I better off after surgery? I'm on the fence. I'm still waiting for the payoff. The pinched nerve in my leg is better, that was a serious issue. But I am left with imperfect balance and don't feel secure without a cane, which I never needed before. I feel strain in my pelvis now when I walk a mile. I feel neck strain sitting or in bed. But I'm far from being on disability.

    I'm straighter and not progressing, yay. Progressing curvature scares me, I saw a really deformed person once (elderly). It's beyond cosmetic when you look more like a crab or a frog than a human being.

    I'm unlucky in that I can feel the rods. I have stinging nerve pain and deep numbness on my back. The pain may be related to feeling the rods and may never go away unless the rods are removed. Right now it's still too early to tell. An orthopedic surgeon I see for other reasons tells me it just takes a lot of time at my age. A 60-something relative of his is doing great 2-1/2 years after scoliosis fusion surgery.

    I think you should pay more attention to what people your age are saying and you may have to go to other sites to get that input. I found facebook to be a lot of "God bless you" support. Reddit is busy but there's a lot of dubious medicine there, people recommending non-surgical cures to each other. But both places have information of value, too, some good contributors, some who had the surgery at your age and are older now.

    Your farm sounds great. I know it's hard physical work.
    Last edited by Tina_R; 05-26-2020 at 02:35 PM.

  7. #22
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    May 2008
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    reno,nevada
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    Quote Originally Posted by Pooka1 View Post
    Scott has EOS. I was talking AIS. I do not have a sense of the range of progression speeds for EOS like I do for AIS.
    Your right....

    Scott sure had low Cobb values for many years. Hard to say if the rotational therapy had anything to do with that, but the last 9 months were scary. I hope he is ok.

    The early onset and congenital groups are a different animal.

    I never had x-rays done before age 16 but sure would like to know my progression rates. I will never know. I do know that my lumbar hump came out of nowhere. All of a sudden, it was there. But all that rapid progression really slowed down by the time we discovered it at 50/50. After adulthood, I didn't move too much.... 5/8 degree per year or 20 degrees in 33 years.

    It takes really extreme curves to kill someone. How big I don't know, but remember the girl in the Pro Infirmis film? (It's been some years on this film)

    Pro Infirmis
    https://www.youtube.com/watch?v=E8umFV69fNg

    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. #23
    Join Date
    Sep 2019
    Posts
    159
    Quote Originally Posted by JScoli91 View Post
    I guess in terms of limitations, after healing of course, what should I expect to either be able to still do but in a different way, or not be able to do at all?

    Gardening
    Reclining on a couch or in a recliner
    Getting onto and off of the floor (playing with my kids)
    Getting laundry out of a top load washer
    Making the bed
    Running
    Riding a bike
    Swimming
    Jumping
    Putting my own socks and shoes on
    Vacuuming
    Sweeping/mopping
    Unloading the bottom half of the dishwasher
    Shaving my legs
    Sex
    These are great questions. I'd answer if I was fully healed, but I'm not. I can't tell if my limitations will last or not, are due to permanent limited mobility or temporary pain.

    I wish I had a top loading washer again. It's front loaders that are hard. When wet clothes stick to the top of the drum I can't see them and I can't turn the drum with a grabbing stick due to a sore back, it's too heavy right now. I need the grabbing stick to pull clothes out because they are low down but wet clothes are heavy.
    Last edited by Tina_R; 05-30-2020 at 07:50 PM.

  9. #24
    Join Date
    Aug 2019
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    111
    Quote Originally Posted by Tina_R View Post
    These are great questions. I'd answer if I was fully healed, but I'm not. I can't tell if my limitations will last or not, are due to permanent limited mobility or temporary pain.

    I wish I had a top loading washer again. It's front loaders that are hard. When wet clothes stick to the top of the drum I can't see them and I can't turn the drum with a grabbing stick due to a sore back, it's too heavy right now. I need the grabbing stick to pull clothes out because they are low down but wet clothes are heavy.
    Tina Sorry to interrupt the conversation but your inbox is full

  10. #25
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    Sep 2019
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    Quote Originally Posted by Scared View Post
    Tina Sorry to interrupt the conversation but your inbox is full
    Huh. The system didn't tell me this time. Other times it has told me when my inbox is full.
    Cleared a little bit.

  11. #26
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    May 2008
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    reno,nevada
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    Quote Originally Posted by Tina_R View Post
    The system didn't tell me this time.
    Same here, no e-mail notification on PM's

    If the forum is quiet, and you don't log in, you won't know if you have a PM.

    It's probably a software update.

    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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