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Hi to all my old friends from '08, Chihuahua Mama needs revision surgery

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  • Chihuahua Mama
    replied
    Originally posted by Tableone View Post
    Hello and so sorry to hear that you have to have such a massive revision operation. I wasn't here in 2008, so I'm not quite clear on the details. You had surgery in 2008 and now all the instrumentation has to be taken out and your old fusion broken up? What exactly did the first surgeon do wrong? Was it just the levels of fusion that were wrong or the way he corrected it? Or something else? BTW, thanks for sharing his name so we can avoid him. Again, I am so sorry that you are going through this.
    Thanks Tableone.

    First, the bad disc has be removed, that space filled in (I suppose a cage of some sort) then the illiac screws placed for fusion to the pelvis. Then the old instrumentation would be removed, osteotomies performed where dr. determines necessary (not sure how many, frankly I hope enough so I gain an inch or two in height) then new rods and pedicle screws to T3. I was told it would be a 10+ hour surgery, 2 days in ICU, a week in a bed, then up to the 'rehab' floor for two weeks so I can learn how to do things again - like the logroll into bed - or as Ed put it, a one and a half twist with a swan dive I suspect I'll be in the hospital 3.5 weeks at least.

    I don't know what went 'wrong' except my choice of surgeon. One did tell me to fuse to the sacrum but I was afraid of those illiac screws. (He was so right, Robt. Pashman at Cedars is a great surgeon). I will say the surgeon I chose SHOULD HAVE KNOWN that last disc couldn't last long - it was bearing to much wear and tear. Then the scoli decided to creep up from T10 to almost my neck. That couldn't have been forseen, but to answer your question, I should not have been left with only one disc to support all that hardware and work of moving my body.

    I'm not looking forward to the first month of doing so many things differently; that's the worst part. I have no fear of the surgery simply because of my surgeon. It's all my work I'm afraid of!!

    Leave a comment:


  • Chihuahua Mama
    replied
    Originally posted by loves to skate View Post
    Hi Susan,
    I have been away from the forum for several months because I found it was taking up too much of my time. I remember you well and I am so sorry that you have to have a revision. My heart goes out to you. I believe you will be in excellent hands with Dr. Gupta. I heard him speak in Massachusetts several years ago and I was extremely impressed with him. If I lived in the Chicago area, he would definitely be on my list.
    My comment on gait. Actually I think my gait improved after my surgery because I was finally balanced. Before my surgery, one hip was higher than the other and I was listing to the right. Everyone is different and I think you should cross that off your list of things to worry about.

    Sally! Hi, I'm so glad you chose to write, thank you. The comment about hearing Dr. Gupta speak was especially reassuring and I am slowly becoming more positive - mostly thanks to this forum (surprise - who did I lean on before?)

    Although I did write after my 08 surgery, other things became more important and I stopped visiting. I'm not going to do that this time. I've had too much support and know a little more than the average bear about scoliosis, so I'm going to try and help others too.

    Again, so great to hear from you and I have not heard one single iota of negative in regard to Dr. Gupta so I'm very happy about my choice. My gait will be my gait and there's not much I can do about it so I can't worry about things I have no control over. Was very glad Linda Racine was so honest with me - that helped a bunch.

    Blessings and Merry Christmas. Be well!!

    Susan

    Leave a comment:


  • Chihuahua Mama
    replied
    Babyboomer16

    Originally posted by babyboomer16 View Post
    I kept seeing Lawrence Lenke
    doing this surgery all from the the back, he did a technique where he could reach around and support you in in front from behind , and so no need for another abdominal surgery. He was 13 hrs. from where I lived. He was my hope. And that's who fixed me. My first surgery was a success , but I developed a sleeping disorder from medication, and ended up falling hard in the middle of the night flat on my tush several times and fractured a rod very low down. That's why I had to go back in and have another surgery to fix the rod as I was unstable again. He took everything out reinforced me even more. I am now one year and seven months out.(I changed medication) so no more falling. Although I still have issues with pain, I am standing and walking without any help from canes or walkers. I have osteoporosis, I have osteoarthritis and fibromyalgia. The osteoporosis comlicated things also. But Dr. Lenke used longer , bigger screws for that. I don't know where you're at with your surgery, but you have to have the best with this surgery. It is huge. And it is one you don't want to have over again. Lots involved in this surgery. I Didn't get taller through all this, I got shorter. (5"shorter) dr. Lenke thinks I was born with scoliosis, but it wasn't bad enough to be noticable. I had that first surgery and it threw my whole spine into "adult scoliosis"onset. My spine literally collapsed over the top of the first fussion.in 2006.
    All this may not be helpful, but I am here to tell you, "GET THE BEST DEFORMITY SURGEON YOU CAN FIND"!! You do not want to go through this more than once. And you don't want to live like you are now. I can't believe you don't have more pain than you do.
    We drove to St. Louis I am thinking eight times now. But where would I be without Dr. Lenke. Just hope things work out for you I wish you the best. And stay possitive. This is doable with the right surgeon. Hope you enjoy the Holidays. You have a great support system on here!! Linda. PS I need to update my signature. I tryed and it wouldn't do it. Oh well, will try again.
    You are so right about finding the best surgeon, so I started out small and got the best names in the area. My 'dream' doctor WAS Dr. Lenke, but I would have no family support and the flight home would be hellish.

    Turns out, My doctor and Dr. Lenke are buds! They do presentations together and I suspect he well knows Dr. Lenke's approach from the posterior. He (my surgeon) has a brother who also worked with Lenke and is in northern California.

    I am so glad you wrote because I can give this information to my daughter who is quite worried about the posterior approach in doing the removal of the disc at L-5/S-1. Thank you for that. I do believe I have the best right now. I don't think that 4 1/2 hour drive to St. Louis would give me a better surgeon after all, and I'm very comfortable with who I have chosen. Also, I am lucky that I have just barely the tiny-est suggestion of osteoporosis and my T score is pretty good. I'm hoping for an inch at least but I also want plastic surgery, a Louis Vuitton bag, a Pottery Barn home but we can't have it all, right? (I just want to be straight and walk).

    Thanks Linda for the information and well wishes. Best to you too

    Leave a comment:


  • loves to skate
    replied
    Hi Susan,
    I have been away from the forum for several months because I found it was taking up too much of my time. I remember you well and I am so sorry that you have to have a revision. My heart goes out to you. I believe you will be in excellent hands with Dr. Gupta. I heard him speak in Massachusetts several years ago and I was extremely impressed with him. If I lived in the Chicago area, he would definitely be on my list.
    My comment on gait. Actually I think my gait improved after my surgery because I was finally balanced. Before my surgery, one hip was higher than the other and I was listing to the right. Everyone is different and I think you should cross that off your list of things to worry about.
    Let the blessings of Christmas wash over you and enjoy the holidays.
    Sally

    PS: I am now seven years post - op and was discharged by Dr. Rand in June. Things are not perfect for me, but tolerable. I am so grateful not to have been in a wheel chair for the last seven years.

    Leave a comment:


  • babyboomer16
    replied
    I had a revision for flatback syndrome ~~ saggital imbalance my name is Linda

    Hi , I don't live in Chicogo. I'm from So. Dak. My name is Linda. If you read my signature you can see what I went through and who my surgeon is. I was bent forward and to the right. Unable to walk without a walker toward the end. I was headed for a wheelchair. Although, unlike you I had relentless pain. It was 24/7. At first I found a surgeon in So. Dak. He tried twice to pull my body into balance. But what he wasn't
    doing is putting stabilization from the front(anterior) of my body. And I would collapse again. He was afraid to open mr from the front because of too many abdominal surgeries already. I kept seeing Lawrence Lenke
    doing this surgery all from the the back, he did a technique where he could reach around and support you in in front from behind , and so no need for another abdominal surgery. He was 13 hrs. from where I lived. He was my hope. And that's who fixed me. My first surgery was a success , but I developed a sleeping disorder from medication, and ended up falling hard in the middle of the night flat on my tush several times and fractured a rod very low down. That's why I had to go back in and have another surgery to fix the rod as I was unstable again. He took everything out reinforced me even more. I am now one year and seven months out.(I changed medication) so no more falling. Although I still have issues with pain, I am standing and walking without any help from canes or walkers. I have osteoporosis, I have osteoarthritis and fibromyalgia. The osteoporosis comlicated things also. But Dr. Lenke used longer , bigger screws for that. I don't know where you're at with your surgery, but you have to have the best with this surgery. It is huge. And it is one you don't want to have over again. Lots involved in this surgery. I Didn't get taller through all this, I got shorter. (5"shorter) dr. Lenke thinks I was born with scoliosis, but it wasn't bad enough to be noticable. I had that first surgery and it threw my whole spine into "adult scoliosis"onset. My spine literally collapsed over the top of the first fussion.in 2006.
    All this may not be helpful, but I am here to tell you, "GET THE BEST DEFORMITY SURGEON YOU CAN FIND"!! You do not want to go through this more than once. And you don't want to live like you are now. I can't believe you don't have more pain than you do.
    We drove to St. Louis I am thinking eight times now. But where would I be without Dr. Lenke. Just hope things work out for you I wish you the best. And stay possitive. This is doable with the right surgeon. Hope you enjoy the Holidays. You have a great support system on here!! Linda. PS I need to update my signature. I tryed and it wouldn't do it. Oh well, will try again.
    Last edited by babyboomer16; 12-14-2014, 10:25 AM.

    Leave a comment:


  • Chihuahua Mama
    replied
    SusieBee and Ed and Diane and Linda Racine

    Originally posted by Susie*Bee View Post
    You heard from her -- Chris WBS. (smile) Very nice and helpful.
    You'll never believe this - I think I've talked to her on the phone (smiley face). She was very kind and told me to call her with any questions. I still have her number (another smiley face)



    Ed! You are just the most positive person! I think you are not the norm, I suspect you prepared early (the weight thing) you were younger, and you had the one surgery. You got a great result probably in part to your lifestyle (skiing) and attitude.

    I'll take your advice and breathe..... Even Dr. Gupta mentioned very kindly I needed some time to 'wrap my head around this' as he put it. There isn't a rush, it's just how long I can tolerate the pain I have. I just want to be well into recovery by the time my daughter has another baby, that's why I feel a need to get this done. But this is about me, my body, and getting that positive result. So I'll breathe......




    Diane,

    Another name was also mentioned to me, Dr. Steven Madjeski? Majerski...something like that. Unfortunately the name I wrote down is in my Xray files I gave to Dr. Gupta. Try some searches for spine revision surgery specialists, I found only 3 qualified to do mine and I was told I was in the top 5% of complicated surgeries (yay me). It's a matter of fit and comparing their approaches. Dr. DeWald had an entirely different idea about my surgery and it didn't suit me. Not to say he's not perfectly qualified, he certainly is busy he was booked through April, 2015.




    Linda,

    Thanks for being utterly honest about the gait. My daughter said something similar ("you will never be happy with the way you walk") That's why it's was sort of #1 on my list of questions and never answered. I used to have a nice walk (or so I was told) and I guess that's what makes me sad. I'm not 22 so I'll just live with the hope that I will be able to walk, because I'm not now. That will have to be enough. Also, I'm talking about L5/S1 that is the concern for the disc removal and cage placement.

    And the Chihuahua? I am going to have to hire some neighbors to walk him initially or he'll simply have to figure out Mom's in bed and the potty pad is where it always is.
    Last edited by Chihuahua Mama; 12-14-2014, 01:22 AM. Reason: correct information

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  • Chihuahua Mama
    replied
    Originally posted by danicaf View Post
    Susan,

    Hi..I'm sorry I'm so slow with a reply. First off, thanks for the three names. DeWald is on my list for a third surgical opinion. And hopefully, the last. But, you never know, I might just need a fourth!

    The honest truth about Chicago: Yes, we all drive like maniacs, me included and possibly at the top of the list. The hockey/football jerseys are obnoxious but all my boys wear them, husband included. The weather STINKS, so we really know how to enjoy the good days, no matter the season. Pretty much like back pain, we really know how to enjoy those pain free days!! Not one person who lives in Chicago doesn't come back from vacation and says "Why on earth do we live here???" The answer: jobs, family, friends, bad habit! I have a brother who lives in Key West and right about now I hate him!!

    Hope your meeting with Dr. DeWald goes well.

    Diane
    Diane,

    What a sweetie! Thanks for that - I made a decision to stop dissing Illinois and I just failed; miserably! All of the above is true but you know what? My son-in-law's family is SOLID GOLD and they have welcomed me as part of their family.

    I am so lucky to have relocated to a place where people love me unconditionally. It could have been so different - if my daughter had married a Chicago-an with a horrible family? I probably would have slit my throat by now, lol!!!

    But, true to midwest hospitality and love they are amazing - a huge, loving Italian family that just wants me to sit down, eat, chat, have a glass of wine, whatever. I'm blessed, and that's the truth.

    Thanks for reminding me, Diane.

    Merry Christmas!

    Leave a comment:


  • titaniumed
    replied
    Susan....There are a lot of unanswered questions with all of this but you have done it in the past.....you’re a pro at this! Don’t let negativity and worry take control. There are a lot of positives ahead, try to anticipate your successful outcome....

    On the medication question at the hospital, they really DO have the strong stuff, that I can vouch on....They up it a notch depending on procedure....(smiley face) My surgeon is a 6 week guy when it comes to precription’s after scoliosis surgery, and I’m sure many are like that. Simply discuss this with him, it shouldn’t be a problem if he directs you to someone else for extended pain management.

    Dr Gupta is going to balance you out and you will be nice and straight after this one...the osteotomies are for balancing front to back, adjusting your lordosis to perfection.....

    I don’t have a video of me walking but have one skiing. Does that count? He he My gait is just fine, yours will be too. We all have our slightly “difficult” gait days.....and its not like I’m walking the catwalk everyday...I don’t blame this on my surgeries, I’m an old skier that’s paying his dues.

    The dog question that Linda brings up is interesting. Perhaps some sort of doggie vest with handle on top. You could lift him up on a counter with a hook device or grabber. They also have the doggie ramps that lead up to bed....

    Years ago when I had my 32# cat, I rigged a catnip ball to a fishing rod and would sit in my recliner and “cast for kitty”. It was a great way to A) practice my cast B) keep the cat occupied. LOL It was like landing a tuna, let me tell you! All I had to do was strip a little line off the reel and he would come running.

    Deep breaths...

    Ed

    Leave a comment:


  • LindaRacine
    replied
    I can address at least some of your concerns.

    Originally posted by Chihuahua Mama View Post
    2. NO ONE will tell me how I will walk; what my gait will look like. Will I be robotic? Look female anymore?
    Unfortunately, no one can tell you, as there is no "standard" when it comes to this problem. I think that most people would be unable to tell that the average person people fused to the sacrum is abnormal in any way. My gait, however, definitely changed. I do not like to watch myself walk.

    Originally posted by Chihuahua Mama View Post
    3. My daughter is extremely concerned that the L5 disc won't be removed anterior, but posterior and the 10 hour plus surgery will all be done posterior. She doesn't see how the mathematics of spinal curves, spaces, etc. will allow for a good outcome for fusion to the sacrum and good spacing when that one disc isn't removed anterior. I'm going to let her and Dr. Gupta work this one out!
    Are you talking about L5-S1 or L4-L5? It's entirely possible that Dr. Gupta plans to do a TLIF, which removes the disc from the posterior approach.

    Originally posted by Chihuahua Mama View Post
    8. Now I read that it's hard to drive when you are fused to the sacrum. I have a really nice Accord with only 65,000 miles on it and it's paid for. Will I be able to get in and out?
    You probably won't be able to drive until you're no longer taking any narcotics. After that, you should be OK. I don't really have any trouble driving. I get in and out of my Mini relatively easily. I need a pillow behind my back. In a previous car, I needed a pillow on the seat.

    I think the one thing that you should be concerned about is your dog. Not being able to bend for the first 3-6 months will make it difficult to feed or pick up the dog. You'll also need to be very careful not to trip over the dog, and will need to use some sort of tool to scoop poop.

    After my revision surgery (which was similar to what you're having), I came home and stayed myself about 10 days after surgery. I had neighbors and friends who ran errands and took me where I needed to go. I also used my county disabled transit service. Having groceries delivered wasn't a big deal. I wasn't eating much for the first 2-3 months, so I just needed basics.

    Hope that helps.

    --Linda

    Leave a comment:


  • Susie*Bee
    replied
    You heard from her -- Chris WBS. (smile) Very nice and helpful.

    Leave a comment:


  • Chihuahua Mama
    replied
    Originally posted by Susie*Bee View Post
    Susan (and others) For some reason her name won't come to me at the moment, but the lady who was so reluctant to have surgery for quite awhile and then did-- and was then so glad, from Chicago, had hers from Dr. Gupta -- but it was at U of Chicago Hospital. Who can help me with her name.
    SusieBee, was her name Linda?

    Leave a comment:


  • Chihuahua Mama
    replied
    Hello CHRIS WBS

    I'm glad to hear your story and the success you've had with Dr. Gupta, it's very reassuring. He is a calming type of person and I think I will need that.

    Just yesterday, I had my second consult with Dr. Gupta with my daughter who used to be in spinal instrumentation sales. She has seen her fair share of spinal surgeries (all types and ages). She is extremely sharp, assesses people well, and told me almost immediately "he's the best surgeon for you".

    Now that the right surgeon's been chosen, I'm getting terrified. So much more to think about......

    1. I live alone with a chihuahua. I need to make my apartment "recovery proof" and be alone all day. I know Medicare will do a few things for you (like sending a CNA to help with walking) but I don't know how I'll manage at first.
    2. NO ONE will tell me how I will walk; what my gait will look like. Will I be robotic? Look female anymore?
    3. My daughter is extremely concerned that the L5 disc won't be removed anterior, but posterior and the 10 hour plus surgery will all be done posterior. She doesn't see how the mathematics of spinal curves, spaces, etc. will allow for a good outcome for fusion to the sacrum and good spacing when that one disc isn't removed anterior. I'm going to let her and Dr. Gupta work this one out!
    4. NO ONE will tell me what I can expect cosmetically, how straight or not I will be; or pain issues. I am cursed with an extremely high tolerance for pain medication. I don't know why, but I've always been this way. A dentist once said he had given me enough novacaine for a 300 lb man so why did I feel the drill? I hear Dr. Gupta is not a fan of pain medication after you leave the hospital and that calls for more discussion.
    5. I'm spending long hours trying to find a video of someone walking after an L3-sacrum fusion with illiac screws. Cannot find one.
    6. According to Dr. Gupta, I will have all old hardware removed, more than one osteotomy and be in ICU for probably 2 days, then to a bed, then after the first week up to the rehab floor for 2 more weeks. About 3 weeks or more in hospital. He says one year for recovery. The first surgery was 1 1/2 yrs before I recovered. I doubt this will take one year to recover.
    7. Oh, and the hospital? Northern Chicago. So hard to get to (Louis Weiss Memorial Hospital). My daughter won't be able to see me but maybe every other day or so. I'll be alone. Lovely. Not what you need for this surgery.
    8. Now I read that it's hard to drive when you are fused to the sacrum. I have a really nice Accord with only 65,000 miles on it and it's paid for. Will I be able to get in and out?
    9. Once I get home, my poor daughter! She has a 2 1/2 yr old, a husband and a demanding job. I don't want to be a burden to her. This backward state only has one home delivery service for groceries, unlike California. They have a horrible selection and outrageous prices. Another burden for my daughter. She and her husband do well and I know she won't leave me lacking anything, but I don't want to be - you guessed it - a burden.

    I'm just starting to hate this whole idea. Really hate it. I've stayed off the forum deliberately to enjoy the holidays before a late February surgery but I can't turn off my head or enjoy anything. I'm just scared and I thought I was a pro at this. I'm not at all. Instead of online shopping for gifts, I keep thinking of long handled shoe horns. Argh!

    At least the big decision has been made - the best surgeon for the job and I believe it is Dr. Gupta. He seems to have a good bedside manner and his staff is terrific and followed him to Weiss Hospital. That's very reassuring along with your experience with him.

    I write too much. Thanks to everyone for reading (or not) this rant/poor-pitiful-me post!

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  • jackieg412
    replied
    Hi Diane, I saw Dr Alexander Ghanayem. I guess he was alright but wasn't too interested . I will say more in a PM.

    Leave a comment:


  • danicaf
    replied
    Originally posted by jackieg412 View Post
    While I have not had Dr Gupta as a surgeon I have heard good things about him. In the Chicago area I was not pleased with the spine doctors at Loyola. As far as the area---- it leaves a whole lot to be desired,but the city of Chicago is beautiful and well maintained as far as big cities go. The weather keeps you on your toes. People are friendly but we do seem to have way too many murders. I live south of the city in a small suburb but the city is fascinating.
    Jackie, Who did you see at Loyola?

    Leave a comment:


  • jackieg412
    replied
    While I have not had Dr Gupta as a surgeon I have heard good things about him. In the Chicago area I was not pleased with the spine doctors at Loyola. As far as the area---- it leaves a whole lot to be desired,but the city of Chicago is beautiful and well maintained as far as big cities go. The weather keeps you on your toes. People are friendly but we do seem to have way too many murders. I live south of the city in a small suburb but the city is fascinating.

    Leave a comment:

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