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Thread: Don't know what to do now?

  1. #46
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    Hey All,
    It is official. July the 12th is the surgery date. I went in yesterday day with high hopes that they would whisk me in to surgery, and much to my suprise they offered epidural injections first. I nearly passed out. I said that is a quick fix and I don't want a fix that leaves me feeling the same. So just before I started to cry he said o.k. let me get the other doctor that will do the surgery. I was confused. So I said what is going on that he came in first. He said it is my decision to have the surgery or the injections. He told me I will never be off disability. I have arthristis all throughout my back and the discs all are bulging.

    I am 33 and I will never retire at a ripe age of 65. It makes me feel awful. I will work again but it hit me harder today that things won't be the same. They will fuse the rest of the spine downward. And then they will cut off the "chicken wire" (LOL) and the part of the rod that is just doing nothing but scrape. They are going to use the cage system in the disc space. It seems final in some ways that I will not bend again but as it is now I won't bend anyway.

    Well I am hoping I won't have any complications prior to the surgery so everything goes through before school starts for the girls. Any suggestions on how to make it an easier time for kids to deal with a parents surgery would be helpful. Bare in mind I am a single parent and I my parents and I live together so the have some stability but it will be hard still. I am the primary caregiver to all in the house. So wish me luck.

    I hope everyone is doing well and take it easy on yourselves. Krystal
    Diagnosed 11 at school screening, surgery 16.
    Had Harrington rods w/fusions.
    Luque-thorasic.
    Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
    2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
    2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
    Both of my daughters have scoliosis. Both were diagnosed by 7.
    http://spinedoctors.md/ Dr, Jospeh Flynn Jr

  2. #47
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi Krystal...

    Who will be performing your surgery?

    --Linda

  3. #48
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    Hi Linda,
    The doctor that will be performing the surgery is Dr. Joseph Flynn Jr. His father is very well known in the Orlando FL area. He has even given his son some advice on how to make the surgery go better because the design of the rod and Luque. It is different than most. They did some experimental work in 88 with Luque and Harrington out of the University of Miami. My doctor then Dr. Richard Strain chose to do things alittle differently for the sake of trying something out of the box i guess. It worked for awhile but the wire at the bottom came loose and started to rub and pinch the nerve. So that will be gone. I hope it takes care of the pain at teh very least. I will never have a straight spine and that is a fact. So I will have to make do with what I have. Well let me know if you have heard any news good or bad. I like to know the bad stuff too.
    Diagnosed 11 at school screening, surgery 16.
    Had Harrington rods w/fusions.
    Luque-thorasic.
    Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
    2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
    2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
    Both of my daughters have scoliosis. Both were diagnosed by 7.
    http://spinedoctors.md/ Dr, Jospeh Flynn Jr

  4. #49
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi Krystal...

    I don't know anything about Dr. Flynn (other than that his father was a member of the Scoliosis Research Society). The thing you need to find out is how many revision surgeries he performs. You really want someone who has done a lot of these surgeries, or your potential for a bad outcome could be huge. I'd recommend that you get the names and phone numbers of at least 3 patients on whom Dr. Flynn has performed revision surgery in recent months. Call them!

    Regards,
    Linda

  5. #50
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    Hi Linda,
    That is a great idea. I have asked the people that come into the office what there opinions were of him. They all love him and respect his work. he works with so many people and even travels to the Bahamas and does surgeries there pro bono. He said he has done many surgeries like mine and he offered to give me a list but I didn't take it due to that would have been the cream of the crop and I would not have had a bad comment. LOL.

    One woman that day came in and her x-rays were so close to looking like mine that had to take a closer look. If it wasn't for the underwire in my bra I would have never been able to tell. I heard them talking about her surgery coming up and the other doctor that assists him said that hers and my surgeries were done the same year.

    My biggest source of info was from the first ortho I went to. Dr. Reginald Tall. He is highly recommended and I tried him and was very disappointed. He said that Flynn was the best for revision surgery. So I then made up my mind to get it done. My primary care doctor send him all of his patients, and alot of them are older people with scoliosis. He said he works miracles on them. I am very confident in his abilities. Although I am a little unsure that the way he is going to fuse is the best solution. If it means I won't have to go back again then I am ok with it.

    I initially talked about him using the artificial disc and he said that the bottom part of the back will take too much of a load and cause complications. I weigh too much is what he was saying. LOL. Well we will soon find out. I am going to check a few more things out before I go in. I did call the hospital and spoke to the nurses station on the ortho floor and asked who they would recommend as a great revision/ortho and they said Flynn. I haven't heard anything bad. Also when I went for the cat scan. I asked both doctors who they recommended and they said Flynn was unbeatable for scoliosis. They come from all over the state. Also Flynn Sr. came from Shands. They have an extensive research department for orthopaedics.

    Any other suggestions on where I could look? I don't want to look for lawsuits because this state is a state where everybody sues for everything. I have looked at his license status and nothing pending and it is clear. The office people have worked for him for along time. And even have ones from his fathers days there. The radiologist there said that he has all the attributes his dad has and more. Well sorry for being longwinded. I needed this post to really get my head straight too and think of the positive sides.

    I am still looking for suggestion on preparing the kids for my surgery if anyone has suggestions.
    Krystal
    Diagnosed 11 at school screening, surgery 16.
    Had Harrington rods w/fusions.
    Luque-thorasic.
    Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
    2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
    2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
    Both of my daughters have scoliosis. Both were diagnosed by 7.
    http://spinedoctors.md/ Dr, Jospeh Flynn Jr

  6. #51
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi Krystal...

    The only other way I know of to judge a surgeon is to consider whether and where s/he is fellowship trained (specifically in spinal deformities).

    Regards,
    Linda

  7. #52
    Join Date
    Apr 2005
    Posts
    913
    Krystal...

    Good luck with your surgery, it looks like it won't be easy but you seem to be in very good hands, that has to be reassuring

    I don't know what to answer about your kids, as I don't have any, but I'm glad you have your parents to be there. We're both the same age almsot, I'm 34

    Keep us posted, I will be thinking about you and will keep you in my prayers

  8. #53
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    Hi,
    This is a link that will take you to their site.

    http://www.spinedoctors.md/index.htm
    click on Our Surgeons
    It tells all about their education tell me what you think. It seems like he has a great education, but let me know.
    Diagnosed 11 at school screening, surgery 16.
    Had Harrington rods w/fusions.
    Luque-thorasic.
    Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
    2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
    2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
    Both of my daughters have scoliosis. Both were diagnosed by 7.
    http://spinedoctors.md/ Dr, Jospeh Flynn Jr

  9. #54
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    Hey Nancy,
    Thanks for the prayers I will need them. I feel alittle anxious. I know I should trust my family more than I do. I just hate leaving anyone in charge of my well being. I have been a single parent/caregiver for so long. My mother and father are doing suprisingly well since I took charge more of there healthcare and keep on top of things. So that is why I feel vulnerable also that they will slack off in there own also. I will have my sister coming to, and she is a take charge person. She will come the first few days after I get home. She is bringing a lift chair. LOL. I really need to take it easy and put my trust in my doctors. It is just hard to let anyone have that much power over important decisions. Take care.
    Diagnosed 11 at school screening, surgery 16.
    Had Harrington rods w/fusions.
    Luque-thorasic.
    Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
    2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
    2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
    Both of my daughters have scoliosis. Both were diagnosed by 7.
    http://spinedoctors.md/ Dr, Jospeh Flynn Jr

  10. #55
    Join Date
    Sep 2004
    Location
    Dallas, Texas
    Posts
    82

    Surgery

    Krystal:
    May I suggest that you find out now from your doctor what you will physically be able to do after surgery. This is extremely important because
    you sound like a take charge mom. If they are fusing you to the sacrum
    its probably a good thing as there is less chance for those unfused areas
    to go south later when they take too much stress. I was youn, 42 when I
    had had L4/L5 fused. You will heal pretty quickly, thats the problem. If you
    start bending, pulling acting as though you are well before the wires at
    the bottom of your back are fully fused, you can make real problems for yourself. Be frank with your questions for the surgeon, then sit down
    with your parents and discuss how the responsibilities must be shared between them, not you. If you don't do your part which is to take it easy, your back will suffer and your children will suffer as a result.I am sharing this with you because I have had a dreadful time giving up responsibility to others through this recouperation period and I am 63 (you would think it would be easy when you are my age to sit back and just get well-its not-its hell)As for your back not being straight, my back is not straight, but I look straight. I have a waist now, I can wear belts that don't look diagonal. Maybe your doctor can straighten you more then he has indicated. Take care of those things in your power such as losing weight. You mentioned that weight was a problem, it will continue to be a problem for your back after surgery. Focus on losing the extra pounds. Good luck Kathleen

  11. #56
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    Hello Kathleen,
    You know exactly what I am going through. The fusion in the upper lumbar region didn't hold as nicely as I would have like. That makes me alittle bit lop sided. But the lower back is absolutely horrible from the wear and tear on the discs. The stress wore the disc out and then it protruded into the nerve. After having the myelogram the pain was horrific. I have never been in this much pain. I cant even lay on my right side at night. What is funny they say they didn't hit the nerve.

    I sat down today and talked with my mother on some issues. The kids are the biggest worry for us both. They hate change and they have sibling rivalry. My youngest is a mommy's girl. The oldest is like my best friend in a sense. We chit chat about all kinds of things and she has a great understanding. But now that this has been set up with the date she has not said a word to me that isn't mean. I was so hurt at first but them I realized how scared she must feel. I just reassured her that I will be fine.

    With this surgery at 33 I hope it will be the last. I can't stand the thought of going through with it again. I have to ask this question if you don't mind answering.
    1. When you are fused at the sacrum is it uncomfortable to sit for along time? 2. Also when you bend do you bend with you hips if at all?
    I will be fused from the sacrum to just below T-1. The rod will no longer hold any part of my lower.
    The doctor said 6 months of recovery. No picking up or bending. A wasn't suprised with that. I remember the other doctor telling me that along time ago. I was wondering when they will do the brace? I remember them fitting me for one early on before the surgery. I wondered if they will wait til after maybe at the hospital? Hmmmmm. Can't remember that long ago. LOL. Well take care and take it easy. For once let someone do something nice for you. That is what I tell myself everyday it seems to help from feeling guilty.
    I spent alot of time helping everyone with everything. It needs to come back to me.
    Diagnosed 11 at school screening, surgery 16.
    Had Harrington rods w/fusions.
    Luque-thorasic.
    Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
    2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
    2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
    Both of my daughters have scoliosis. Both were diagnosed by 7.
    http://spinedoctors.md/ Dr, Jospeh Flynn Jr

  12. #57
    Join Date
    Apr 2005
    Posts
    913
    Good Lord Krystal, you're one strong woman! I know all the pain that I've been through especially in the last ten years but you have a lot of responsablities and like you said now it's your turn to relax

    You are lucky to have a family that will be tehre for you, especially your sister as that is rare and from the way you describe her, she's strong too, wich is good

    I hope everything goes as smoothly as it can(I know that's a big word ), and that your daughters don't stress too much from this, it must be hard I know.

  13. #58
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    Hi All,
    Thanks Nancy for that post. That made me smile, and after today i needed that. My sister is alot of help because I did enough for her when she had her surgery. LOL.

    We had a sleepover with the girls friends this weekend. The kids were super hyper. Then the power and cable went out. So no computer for awhile before the power went out. The girls went home and then the older one started asking questions that made me think she finally got it in her head her own way that I am truly having this surgery. YES!!! . All is great just with that alone.

    I have started making my list of hospital necessities. It takes me back to when I was 16 and getting ready for surgery seemed like a vacation until I got there. LOL. Take care Everyone.
    Diagnosed 11 at school screening, surgery 16.
    Had Harrington rods w/fusions.
    Luque-thorasic.
    Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
    2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
    2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
    Both of my daughters have scoliosis. Both were diagnosed by 7.
    http://spinedoctors.md/ Dr, Jospeh Flynn Jr

  14. #59
    Join Date
    Apr 2005
    Posts
    913
    I didn't know your sis had surgery too, or maybe I forgot. Everytime I see a doctor for anyting, and they see that I had scoliosis, they IMMEDIATELY ask who's the one in my family that had it, and from what I know, nobody. We found out recently that one of my second cousins has it, although not as severe. My sister's back and body is so strong, you'd think we were not from the same family, she horseback rides and has all her life. My mom is frail like me and has osteoporosis and cyphosis. My sister's daughter(my niece) will have to be checked, as I told my mom from what I read here, scoliosis is very much hereditary.

    LOL about getting ready for surgery Krystal...it reminds me also of how me and my mom went out shopping for cute slippers and new pyjamas, b/c I HAD to look cute and trendy when in the hospital, What a disappointment when I only wore that ugly green hospital gown, since I had a drain and was hooked to all kinds of stuff for days,

  15. #60
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    Hey Nancy,
    I should have clarified her surgery was for a torn rotator cuff. She had to have it repaired and she is the biggest baby. She has no scoliosis and neither does any of the other ones. 4 sisters in all. I have two cousins from each side of the family with scoliosis. They are 2 years older than I. My two girls have it also. So I worry that their kids may have it too. I fully expected that generation skipping thing. But NOOOOOOOo it has to my kids first. They have a small curve so far. And from what I can tell Erin the older one has straigtened out alot since her last growth spurt.

    I had all of my night gowns in the hospital closet and I couldn't wear any of them. I was debating at the store on pants and shirt. No button or buttons. I think I am going with the long T-Shirts and wear the brace on the out side? Or under shirt with pants. I don't know yet any suggestions? Remember it is hot as a oven here too. Undershirts will have to be worn.
    Diagnosed 11 at school screening, surgery 16.
    Had Harrington rods w/fusions.
    Luque-thorasic.
    Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
    2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
    2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
    Both of my daughters have scoliosis. Both were diagnosed by 7.
    http://spinedoctors.md/ Dr, Jospeh Flynn Jr

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