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Thread: Don't know what to do now?

  1. #31
    Join Date
    Apr 2005
    Posts
    913
    To Krystal...I'm so sorry about your pain, hang in there and hopefully it will go away soon I did some prayers last night and included my scoliosis friends

    To Irene...I broke my rod when I put my pants standing up in an abrupt way, last year I should have put them sitting down but I was feeling better that day, had slept more and was getting ready to celebrate my hubby's b-day It took a year for the doc to see the breakage in my rod through X rays, since they couldn't see it at first and sent me to physio, acupuncture, etc...thinking it was only inflammation but I KNEW something was not right, there was clicking in my back and a BIG pop when it broke...of course nobody understood what I tried to explain

    But anyway, I hope everyone is feeling all right today, I didn't have a good day yesterday, was at the grocery store and had one of those shooting pains in my sacrum region and dropped to my knees Legs were numb for hours. It was quite embarassing and I started sobbing uncontrollably, everybody was staring...thank God hubby was there It sure helps sharing our pain and experiences here, take it easy all

    My name is Nancy, btw

  2. #32
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    Hey Nancy,
    Thanks for the prayers. I will keep you in mine as well. I am up and down quiter a bit today. I think laying in that bed is making it worst. It feels like my head will pop off if I sit. I have to go for the blood patch tomorrow. What a thing to look forward too.

    I read that you had the problem with the legs going limp. I have done that often. I wonder sometimes if the nerves are so shot out that it just comes on suddenly. I had that problem and they blamed it on my knees. I knew better. I never had a pain in my knees ever. Then they found the disk was gone and that was they disk that controls the nerve that runs down your leg. So anyway it is back to bed. Talk soon. I have instant messaging if anyone wants to contact me when I am on do so. If it is me on I will chat.
    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

  3. #33
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,794
    Hi Nancy...

    I don't think there's anything you can do to break a rod... certainly not putting pants on. Rods break in an area of non-fusion because the rod weakens from being bent back and forth. It's usually described as being like a paperclip. If you bend it back and forth enough times, it will eventually break. Mind you, rods don't bend easily, but the weight of your torso will make them move in minute amounts if there's a non-fusion.

    Regards,
    Linda

  4. #34
    Join Date
    Apr 2005
    Posts
    913
    To Linda...My ortho told me that I was fused the whole region that was operated and so I don't know about an area not being fused, but I'm getting a second opinion. As for the rod breaking, I lifted my leg pretty high and that's when it popped really loudly and I was thrust to the floor, mind you they could barely see the breakage when it happened in the X rays I took a week later, but probably like you said it was the back and forth and that time that I put my pants that way, it did more damage...

    To Krystal, hope your day at the hospital went well I asked my physio about the shooting pain in my sacrum region, and she said that it could be from a slip there and it happens when I get up a certain way, I have to be careful. Don't have knee problems either as of now, except before I got orthesis for my shoes wich were SUCH a relief from all the pain I used to get in my heels/legs/knees, due to my flat feet. Doctors told me that it was my back that was the cause but I knew it couldn't be responsible for all my pains.

  5. #35
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,794
    Hi Nancy...

    David Bradford at UCSF told me that he believes that the only way a rod can break is if there's an area of non-fusion. Unfortunately, many non-fusions are not visible on x-ray. I think the reason that doctors often can't see a rod break on film is that the fusion (which often grows OVER the rods), holds the rod in place. As time goes by, the rod moves enough to finally be seen. Good luck with your second opinion.

    Regards,
    Linda

  6. #36
    Join Date
    Apr 2005
    Posts
    913
    I did have a tomogram done and I remember the ortho that performed surgery on me said that he wouldn't fuse all of the spine(to leave me with some flexibility), but now this ortho said that I am. This is a good question that I will be sure to ask this second opinion ortho.

  7. #37
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    Hi Nancy,
    I am almost better after the blood patch today. I got too much pain meds and it made me sick. But I feel a ton better. I met this guy one time that got into a minor car accident, and he broke his rod. He was stationary and the car that hit was only going 30ish mph. His was stainless. Then I met a lady that her rod broke and she had titanium. She did not fall or anything, and hers broke. So I guess it can happen in the strangest cases.

    Well I hope everyone feels better today. I am going to lay down so I don't pass out. LOL. 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

  8. #38
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    Hi All,
    I just want to check to see if everyone is donign well. I am almost well. The blood patch worked for the spinal fluid leak. But it was very painfull. I think the nerve was hit both times. I am allergic to the pain meds they gave me and it took several days to feel better. Just to let anyone know that is about to have a myelogram done. Don't have it done too close to the weekend in case you have complications. If the doctor would have taken me in on the Saturday and done the blood patch then I would not have had to spend that many days in bed. I was flat on my back from Friday til tuesday and then tuesday til thursday. I guess It gets me prepared for the up coming surgery. I lost 4 lbs. though. LOL.
    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. #39
    Join Date
    Apr 2005
    Posts
    913
    Glad to hear you are better, that is nice of you to also inform us about your experience with the myelogram. I'm waiting for my second opinion ortho to call me for an appointment. Sigh, it's very hot here and I did some shopping today(went over budget, but I deserve it ), am trying to take it easy.

  10. #40
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    Hey,
    It must be cabin fever. I went shopping today too. I still can't walk far so it was a short shopping experience. I have a funny tight pain in my tail bone. When I walk it pulls so it is truly uncomfortable. Well I hope you can get a quick appointment. Sometimes here in FL they will look over your records and if they cant do anything more than the other doctor recommends they won't give an appt. to you. I have really been mad about those let downs. Now I have better insurance for myself so I don't have to deal with that nonsense. Well take care and if you want to email me it is cntrykrystal@aol.com.

    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

  11. #41
    Join Date
    Apr 2005
    Posts
    913
    I live in Canada(Montreal), so insurance is not a problem for us but sometimes the system is infuriating, b/c of the wait and lack of "compassion from the staff The secretary of this new ortho told me that he will check out all my X rays and test results from my tomogram, and THEN see if he wants to see me sooner than later, you know if I'm considered "urgent" in their opinions. I did a bit too much walking yesterday and shopping usually drains my energy and is now considred a work out, LOL. Oh well, take it easy

  12. #42
    Join Date
    Jan 2005
    Posts
    96
    Irene - your pain sounds quite a lot like mine, which has just been clarified at my last hospital appointment (6 months post-spinal fusion, age 55). I too was convinced it was the instrumentation hurting, and this was what the consultant said in February. He also said it should settle down, which it didn't. It was stopping me leaving off my brace and generally making life a misery, a feeling of metal digging into flesh which receded when I lay down, so best in the morning and worse as the day goes on or as I do more (after swimming it was terrible!). The suggestion this time makes sense, that it is muscle spasm - which makes sense, since the pain goes when I lie down. Probably because I expect it to hurt, so when the pain begins I tense up (round the top connector) and the pain gets worse, so I tense up more. He suggested I try taking ibuprofen now that the initial period of fusion is over, but unfortunately it upsets my stomach. But just knowing it must be muscle tension rather than the hardward itself helps a lot. Hope to get some physio and later some yoga lessons which might help me learn to relax it.

    Best of luck,

    Lavinia

  13. #43
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    muscle spasms

    Lavinia:
    I had muscle spasms for a LONG time. What helped me was acetamenophen(paracetamol) 1GM-up to 4 GM a day. Does not bother my stomach.
    Are you in the UK.? In the US we have time release acetomenophen in Tylenol Arthritis so that one needs to take it less frequently.
    I also used naproxen; it did not bother my stomach like ibuprofen.
    My pain management doctor let me alternate or even take it as needed around the same time.

    Does your surgeon say you still need the brace? My surgeon said is was mainly for my mental state, protect my tender back against sudden movements in the beginning and jabs in public. Sooner or later we have to be weaned to allow our back muscles to strengthen.
    Karen
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  14. #44
    Join Date
    Jan 2005
    Posts
    96
    Hi Karen,

    Yes I'm in London. Sometimes it feels like the back of beyond in terms of scoliosis care compared with US.

    Thanks again for the info about paracetomol and naproxen. My consultant has always scared me by saying how dangerous it would be to take the brace off in the first 6 months, so I kept it on apart from brief attempts in the last month or so. However, I had an appointment (with his registrar this time) who said now th e6 months is up I could just leave it off. As it had been so painful in recent weeks I thought I would do just that, and it has not been too bad - certainly not worse than with it, and a great relief that I won't be sweltering in the fleece lining over the summer! The large muscle spasms (round the ribs adn back) don't bother me because they don't hurt, it is the upper back pain that is troublesome. However, I shall try increasing the paracetomol which I also find by far the easiest in terms of side effects. Unfortunately in the UK they don't do timed release, and also put dire warnings about taking more than 2g in 24 hours, so your info is truly helpful. I think they are worried here about the large number of overdoses with paracetomol, so play it over-safe. Will ask my GP about naproxen as well.

    You really have helped me through every step of the way. Am beginning to see light at the end of the tunnel, so hope I can be as helpful to others in the future,

    Lavinia

  15. #45
    Join Date
    May 2004
    Location
    Southern Illinois, USA
    Posts
    55
    Hi Everybody ~ I've been gone for 5 days. It was nice to read your posts and "catch up" a bit. Thanks for your input, Lavinia. Thank you Krystal, Karen, Linda, and Nancy (Sweetness)... for your posts also. The information you pass along certainly helps me. The comments include much food for thought. ~ What happened to you in the grocery store, Nancy, has happened to me here at home several times... Sometimes when I move a certain way I'll feel a sharp stabbing pain in my left lumbar area and my legs kind of "give out". (Last year it was my right side!) ~ I've screamed and dropped to the floor... and I explained this to my surgeon. He told me that the screw in my hip is probably touching a nerve when I move that "certain" way, and that he could take the two balancing screws out of both hips (because he said I'm totally fused). I said "That's OK"... !! ~ "I'm not ready for more surgery"! I sincerely don't know what to do. I think I'm going to wait another year and see how things are going. My best to you all... God Bless You and I'm asking Him to help all of us! Have a nice day and a good week!
    ~ Irene ~
    Lumbosacral Scoliosis: Corrective surgery (12 hours anterior and posterior) on June 19, 2002 at age 56; Surgeon: Lawrence G. Lenke; Hospital: Barnes in St. Louis, Missouri; Pre-Op 58/56 degrees "S" curve; Post-Op: 40/33 degrees; Fusion: T-11 to S1

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