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Thread: Must Haves For Post Op

  1. #31
    Join Date
    Jan 2016
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    Sioux City, Iowa
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    100
    OMG! That literally made me laugh out loud!

    Kathy
    Decompression surgery L4/L5
    April 3, 2015
    Twin Cities Spine Center - Dr. Joseph Perra
    Fused from T11 - Sacrum anterior/posterior
    June 24, 2016 - 55 years old at surgery
    Twin Cities Spine Center - Dr. Joseph Perra
    Before Surgery: 42 degrees lumbar, 28 degrees thoracic
    After Surgery: 10 degrees lumbar, ?? Thoracic
    2 inches taller

  2. #32
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    May 2008
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    Kathy, I was choking when I wrote that one. LOL

    Laughter therapy works.....

    Ed
    49 yr old male, now 60, the new 55...
    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. #33
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    Jan 2008
    Location
    NC
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    Quote Originally Posted by rjmacready View Post
    Linda, Title says it all. I will need all distractions possible I fear... No, seriously I did not know that. I simply assumed it involved changing diapers, i.e. "wet" work. Of course that term is also slang for killing people in certain circles. I stand humiliated and corrected. Chet
    Chet I am sorry you feel humiliated. Exactly nobody here was trying to do that to you.

    This thread has been amusing and we like amusing around here. So I thank you for being here. :-)
    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."

  4. #34
    Join Date
    Apr 2012
    Location
    San Jose, CA
    Posts
    571
    LOL!!! I learned yet another English phrase from the forum. I remember a "fusion to scrotum" discussion a few years ago :-)
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  5. #35
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    May 2008
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    reno,nevada
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    Irina

    I believe ďfusion to the scrotumĒ made post of the year! One for the ladies, of course!

    With all we have to go through, there is no humiliation in any way, or at least for the elders that get used to it that can handle anything. I use self depreciating humor as a form of comedy when I can, and its worth it because we need all the laughter we can get dealing with scoliosis.

    With terms and definitions, English offers a supply that doesnít seem to end and its impossible to know the whole language.

    Ed
    49 yr old male, now 60, the new 55...
    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. #36
    Join Date
    May 2016
    Posts
    49

    English, Prolia and height

    Yes, English ( reminds me of underinformed people who say things like "why don't you talk American?" 😆 can be challenging. So many words have different connotations, I have 6 years of Latin on board and that helps immensely in deciphering words I am not familiar with; so many of our words are derived from Latin.

    I saw my rheumatologist yesterday. In May of 2016, roughly 70% through my 2 years of Forteo, I had an almost 3% increase in BMD. I will be done with Forteo in 2 weeks, and have already been approved for the transition to Prolia. I will consult with Lenke to see if he wants me to wait a bit after Forteo cessation.

    During my OV intake my height was measured as 5'5". In 1997, I was 6'2". With a full head of still blonde hair and blue eyes, maybe I'll join "OurTime" after my surgery. Best to wait until I'm totally fused though, don't you think? 😉 Chet
    Last edited by rjmacready; 02-24-2017 at 04:52 PM.

  7. #37
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    Quote Originally Posted by rjmacready View Post
    With a full head of still blonde hair and blue eyes, maybe I'll join "OurTime" after my surgery. Best to wait until I'm totally fused though, don't you think? 😉 Chet
    Ok, were on a roll....gotta come up with some new material.....going for post of the year.

    Chet, we are all nimrods, but donít get too gung ho too soon, the mating call being an exact science, happens when it happens. Here is some instructional video from a pro.
    https://www.youtube.com/watch?v=uED55XuT1kw

    Wasnít that entertaining and educational! (smiley face) Donít worry, I will have you laughing in rehab. It clears the lungs. If you turkey cut in ICU, they will give you stronger meds. Ha ha

    It takes a long time to heal. Remember that it takes patience, and time. Realistic expectations are important things to keep in mind. You have osteoporotic bone, you will have to be taking things real easy while you heal. In other words, no forces, and for many months.....I took things real easy myself since I didnít want to disturb or agitate my construct. No bending, no lifting, no twisting. Its our creed.

    After you heal, you could advertise, ďTall, dark, and fusedĒ You will have the tall and fused part covered, all you would have to do is color your hair. (smiley face)

    When do you see Dr Lenke again?

    Ed
    49 yr old male, now 60, the new 55...
    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

  8. #38
    Join Date
    May 2016
    Posts
    49

    Prolia and Lenke

    The goal closest to my heart is to be able to clear out of this 100+ year old, 6 bedroom Victorian home in PA into a new, small single level unit somewhere in SW AZ by July 10, 2019. That would be 2 years post op. Unrealistic expectation? Flat horizons and pitch black skies with "good seeing" to indulge my hobby of astronomy. A yellow lab and intermittent/full time cohabitation are goal numbers 2 and 3. I don't think that is too much to ask. The only person I had an instant rapport with @ Hopkins was the nurse manager who was going to be the head of my post op pain management team. She ran down the procedure, and said my opiate intake was actually below average for advanced cases, and it would be no problem to keep me "comfortable". She said they can determine how much pain people have post op by counting respirations. The faster people are breathing, the more pain they are in. Who the Hell knows how they stumbled upon it, but the new post op PM craze is high does of methadone & acetaminophen. They coat your insides with a paste of this combo and infuse you with it. Apparently this combo doesn't cause the opiate blocking action the oral methadone does over a certain dose, (60 mg?) so they can add morphine, dilaudid etc... as nec. After 2-3 days you are totally awake and on fentanyl with a PCA pump loaded with dilaudid/morphine. I have yet to talk to Lenke's PM team, but I'm sure they do something similar. I've really tried to cover all the bases, something I did not do before my first back surgery.

    I see Lenke again on May 15. That will be a 12 hour day in NYC- 6AM to 6PM: 3 CTs, 3 MRIs, plain films, PM consult, Lenke consult, ... Lenke insists the imaging be done @ The Spine Hospital. Even though that will be a 16+ hour day total and lay me up for a while, I'm not about to cause any waves. I'm giving him exactly what he wants. I actually feel very fortunate I found him before using Kebaish, and that he was not hesitant in the least to take my case. I think my luck started to change the day I found out Lenke had moved to NYC. I would never have wasted 6 months schlepping down and back from Hopkins, which is actually a longer trip as the crow flies. It takes the same or slightly more time to get to Lenke's just because of that stinking NYC traffic. (An example of my luck changing is how seamlessly the Prolia switch was done. It took 24 hours, I fought for months to finally get the Forteo.) Chet

  9. #39
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    May 2008
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    reno,nevada
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    Chet, we have goals and expectations. Our realistic goals and expectations on serious spine surgery should be ďset as we goĒ......I want to say, yes, Arizona can happen in 2 years, but better to decide ďafterĒ you do your recovery.

    I never intended on going skiing again after my surgeries. I was ok with that. It wasnít expected, it was a bonus.....there is a difference in this. You donít want to conquer the world if you donít know. (I hope that didnít sound too Trumpy)

    The ultimate goal of surgery itself is complete pain relief....If this goal is met, you wont need to take meds. Itís the max goal set. Itís the best it gets. Not all of us get there, but we try really hard. All of the posties that are med free will testify that it wasnít easy, and nothing good ever comes without effort. Reduction of meds will involve pain. Its part of the process.

    If you end up having lingering pain, set your med goals through Dr Lenke, ďafter you recoverĒ. Dr Lenke will pick a medication doctor for you.

    Please realize that I am med free. Its what I choose regardless of any pains and bear traps and scar tissue gripping. Upon reading about a cancer patient that had back pain that was self diagnosed as a pull or sprain, she found out that she has this serious cancer spine problem. It makes for good reasoning since it would be harder to feel this sort of thing happening while on heavy medications. It affects judgment in pain which is needed as we age. (smug face)

    Mauna Kea on the Big Island of Hawaii has an observatory and is good because there is little light pollution. I never went up there, (wanted to) because technically I would lose 3 dive days. Divers have a no fly rule we follow due to nitrogen expansion from the gain in altitude. I can imagine the Arizona desert being a great place for star gazing along with my home state of Nevada.

    Nobody liked the turkey call vid? I thought it was hilarious.

    Ed
    49 yr old male, now 60, the new 55...
    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

  10. #40
    Join Date
    Jan 2016
    Location
    Sioux City, Iowa
    Posts
    100
    [QUOTE=rjmacready;168724]The goal closest to my heart is to be able to clear out of this 100+ year old, 6 bedroom Victorian home in PA into a new, small single level unit somewhere in SW AZ by July 10, 2019. That would be 2 years post op. Unrealistic expectation? /QUOTE

    Hi, Chet. I know where you are coming from. We lived in a 100+ year old beautiful Georgian Colonial home, 5,000+ square feet. When our youngest got out of college we sold it. 6 months later I had my decompression surgery, and 2 weddings later I had my fusion surgery. It was the best thing we ever did was get out of that big house. I loved raising our 4 kids there, but I have not missed cleaning & maintaining that big house. I have thanked God every day for making the timing just right for me, with my pain level as high as it was, I was getting to the point where it was killing me to keep up that house. Now, we live in a small 2 bedroom/1 bathroom house. It was much easier for me in my recovery being in this smaller home with no stairs. Sometimes I miss having more space, but we really have all we need. I suspect that you will love being in a smaller home.

    Ed - we also sold our business in the midst of all this. Fortunately, the big decisions were made well into my recovery - unlike you who made big decisions on narcotics.

    We have really simplified our lives in the last 2 years. It has made things much easier for me (us) - less things to physically take care of and less mental stress. I have been able to focus on my body and recovery and not worry about a whole host of other things. It's been really nice.

    Kathy
    Decompression surgery L4/L5
    April 3, 2015
    Twin Cities Spine Center - Dr. Joseph Perra
    Fused from T11 - Sacrum anterior/posterior
    June 24, 2016 - 55 years old at surgery
    Twin Cities Spine Center - Dr. Joseph Perra
    Before Surgery: 42 degrees lumbar, 28 degrees thoracic
    After Surgery: 10 degrees lumbar, ?? Thoracic
    2 inches taller

  11. #41
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    May 2008
    Location
    reno,nevada
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    3,974
    [QUOTE=KathyInIowa;168729]
    Quote Originally Posted by rjmacready View Post
    We have really simplified our lives in the last 2 years. It has made things much easier for me (us) - less things to physically take care of and less mental stress. I have been able to focus on my body and recovery and not worry about a whole host of other things. It's been really nice.

    Kathy
    Kathy, this is key, you have done things right. Reducing mental stress is so important since we go through so much of this as adult scolis.

    Iím now posting turkey call videos because of stress, pretty soon I will be gobbling. LOL I think its pre retirement stress. I have given notice that I intend to fully retire this year.

    I want to snowbird in my RV. Arizona sounds great, I will have to meet up with Chet someday down there.

    I hope your recovery is coming along....is everything ok?

    Ed
    49 yr old male, now 60, the new 55...
    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

  12. #42
    Join Date
    Jan 2016
    Location
    Sioux City, Iowa
    Posts
    100

    My Recovery

    Ed - my recovery is going great! I've had my moments but all in all it's going well.

    Just this past Thursday, I was in Minneapolis for my 8-month post op check up. Dr. Perra said my x-rays look great, I look great, and that I'm moving well. He said my fusion looks like it is "there" and my hardware shows no movement. My pain level is very low unless I over do things, then it might jump to a 2 or 3. I am still following the no bending, no twisting and I have been very cautious with my lifting, still nothing over 10#. He said it's OK to lift more than 10#, that I don't have to be that cautious any more. Not to go crazy or anything, but if I needed to lift something that is 20 or 25# that is OK.

    I have travelled to Colorado Springs (5-months post op and went by myself) and I went to Dallas, TX. I'm going to Spokane, WA to visit my daughter at the end of April. I have tolerated the trips well, although I do get tired. I don't always sleep well - not related to my back, more related to my age, I think.

    I spent 3 years in so much pain that it was hard for me to travel and really attend anything and have any fun. I limited myself to my own kids' college events or their special occasions. We don't live near any of our large family, so we have to travel to everything. I decided now that I'm feeling better and healthy, I'm going for it!

    I've attached some pictures. Garden of the Gods (Rock #1 and #2) is 5-months post op, Stone Park is 6-months post op and Samuelson is 8-months post op. I showed these to Dr Perra and he said I should share them so people can see the light at the end of the tunnel.

    Kathy
    Attached Images Attached Images
    Last edited by KathyInIowa; 02-26-2017 at 08:53 AM.
    Decompression surgery L4/L5
    April 3, 2015
    Twin Cities Spine Center - Dr. Joseph Perra
    Fused from T11 - Sacrum anterior/posterior
    June 24, 2016 - 55 years old at surgery
    Twin Cities Spine Center - Dr. Joseph Perra
    Before Surgery: 42 degrees lumbar, 28 degrees thoracic
    After Surgery: 10 degrees lumbar, ?? Thoracic
    2 inches taller

  13. #43
    Join Date
    May 2008
    Location
    reno,nevada
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    3,974
    Kathy

    Nice photos....

    I have an old thread of me hiking in the Redwoods back in Nov 2008 when I was 10 months. I donít know if the photos still work, probably not, but you can see that I was in pain because I was just starting to push after my shoulder rebuild surgery. I would walk with ski poles slowly for a bit and have to lay down for 2 hours from exhaustion, then repeat. I was having gall issues also so not everything was perfect, but I was improving. It was a slow process....I was 16 months before the gall was pulled so thatís why I stated earlier in this thread to set expectations and goals ďas we goĒ. Sometimes there are surgical complications that are not necessarily tied to the spine, so you donít know. Gall bladder issues are a rare scoliosis surgical complication stated in the Moe handbook.

    Twin Cities is where SRS was founded. In our community, thatís holy ground.....a very special place. My surgeon trained there, along with many scoliosis surgeons. (The South African connection)

    A little history..... When I was a kid, I remember the first heart transplant done in South Africa. It was something I remembered and wondered about, South Africa of all places doing leading pioneering operations. When I met my surgeon, I asked about his accent, its not every day you hear a South African accent. I ended up choosing him due to his genius, and training, and its interesting how my memories of this 1st heart transplant had an effect on my decision. There are a few South African surgeons at TCSC. Dr Lonstein and Dr Transfeldt. Dr Barnard also studied in Minneapolis back in the 50ís.
    https://en.wikipedia.org/wiki/Christiaan_Barnard

    I knew you were going to be fine....

    Dr Lenke is also a very special surgeon....

    Ed
    49 yr old male, now 60, the new 55...
    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

  14. #44
    Join Date
    May 2016
    Posts
    49

    No worries

    [QUOTE=Pooka1;168701]Chet I am sorry you feel humiliated. Exactly nobody here was trying to do that to you.
    P1, The "stand humiliated" is snarky. My ego is large enough that I don't appreciate being proven inaccurate, but then who does? I didn't give it a second thought. Anyone who goes onto a public forum these days has to be ready for the cyber equivalent of a night out with sailors after being at sea for 6 months. You develop a tough exterior or leave. This forum, more accurately a certain group of people, have been an invaluable resource for me. You folks have answered questions people like Dr. Lenke or his staff simply can't be bothered with. I will be as prepared as humanly possible for the post op period. That would not be the case without folks I've gotten to know on this forum. Chet

  15. #45
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    May 2016
    Posts
    49

    I suspect that you will love being in a smaller home.

    Hi Kathy, Yes, it is not exactly quantum physics to realize having a home this big for one and sometimes two people is a waste. I had considered selling first, but I am so compromised physically doing things like packing my very expensive electronic gear would be impossible. I would not trust a moving company to do it. True, this home is about the worst place you could do a complete spinal fusion rehab in. If it weren't for steps and windows (#22) I would not have a home. With the surgery scheduled for July 10, I'd say my option to move first has expired. Chet

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