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  • New here - comtemplating surgery - made appt with Dr. Boachie

    Hi everybody-

    I've been reading all of your posts for such a long time (probably for over a year) and now I am finally posting! I am so thankful to read all of your posts and know that there are other people out there who have scoliosis and deal with the same things that I have to.

    Here's a brief background on me: I was first diagnosed with scoliosis when I was around 13 years old. Back then, both my thoracic and lumbar curve measured around 35 degrees. My parents didn't take the situation too seriously and I was never fitted for a brace. They took me to a chiropractor which did absolutely nothing in my opinion back then. I am currently 30 years old and the pain is getting absolutely unbearable. The last x-rays I had were from 2006 which measured 50 degrees for both my thoracic curve and my lumbar curve. Since 2006 I have had 2 children. Ever since I had my kids the pain has gotten extremely bad. I have had shooting, burning pain on the outside of my right foot almost to the point where it feels like someone is stabbing me. That's been going on for 3 years. Then I have had tingling, burning sensations in my pinky finger, middle finger, forearm, elbow, tricep, and now neck, and shoulder. I've been to so many doctors and none of them said anything about the scoliosis so I decided to see a chiropractor a few months back. Well he ordered an MRI and then I found out I have 3 out of 5 bulging discs in my lumbar spine, 1 of which is herniated. That's why I believe I have this sharp, shooting pain in my foot. Then I had an MRI of cervical spine. I had a herniated disc and one protruding disc, which is why I am having all the pain in my arm and hand. So basically I think the scoliosis is causing these problems. Earlier in August I ended up in the ER. My lower back went into a complete spasm and I couldn't even put one foot in front of the other. My lower back completely gave out. Anyway, I was wondering if any of you had any of these problems in your upper or lower extremities, and if so, were they alleviated by surgery?

    I would like some definate, concrete answers as to if the pain would be reduced if I decided to get surgery so I have made an appointment with Dr. Boachie in December. I always hear great reviews about him and so I am excited to see him. I see that many people on this forum have been to him and have nothing but great things to say about him. The only thing is that I am SCARED to death about surgery!!!!! I know deep down inside that it's what I really need to do but I am terrified of it. I used to be 5 foot 6 inches, and I am now 5 foot 4 1/2 inches. I am in so much pain and I need my quality of life back. I used to be a happy person and this pain is really getting to me and I am becoming really depressed. I feel like I need the surgery but I just don't know how to be brave and do it! Everytime I think about it, I feel like I could have a panic attack! Last week I read a post back from 2007 by a lady on this forum who later died during scoliosis surgery and I felt terrible for her and then decided there's no way I could ever do it. I have a 4 year old and a 2 year old and I don't want to ever leave them. So my question to you all is, how did you all make the decision to have surgery? I guess I may feel better when I discuss it with Dr. Boachie for the first time.
    Also, has anyone out there ever gotten a posterior only operation with Dr. Boachie? It seems like everyone on this forum has gotten both anterior and posterior. I have an "S" curve so to me it would make sense to do a posterior operation but I guess I'll have to wait and hear what he says.

    Thanks for listening.
    Surgery date: June 8, 2010 with Dr. Boachie
    Thoracic curve: 55 degrees, corrected to 25 degrees
    Lumbar curve: 58 degrees, corrected to 27 degrees
    Posterior-only surgery, Levels T3-L3
    31 year old mother of 2 young kids

  • #2
    Hi Jen...

    Pain in the legs and arms is relatively common with larger scoliosis curves. It's one of the reasons that good surgeons will recommend surgery. This type of pain is from pinched nerves, and can become permanent.

    Dr. Boachie does posterior only surgery for some cases. It really depends on the patient. I wouldn't get too married to some artificial idea of what your surgery should be. Instead, find a surgeon you can trust, and trust that they'll choose the surgery that's best in your case. There's no one way that's ever perfect, so if you push for a certain type of surgery, you may convince the surgeon to go for that to make you happy. But, if the surgeon thinks you have a better chance of a good outcome from another type of surgery, I wouldn't personally want to influence that.

    Good luck with your journey. Scoliosis surgery is no fun, but then neither is your current pain.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

    Comment


    • #3
      Hi Jen
      welcome..read your post w/interest..i, too am scared of surgery...terrified...but am coming around to probably going thru w/it next year..like maybe april...i am way older than you...but my scoli wasnt found til i was 30 years old, & didnt get bad til about 5 years ago, when i herniated discs! then all heck broke loose!!

      i went to dr boachie for a consult...found him very knowledgeable & compassionate, but he doesnt take my insurance (not sure if he takes anyone's?)..so i am choosing between 2 other wonderful doctors in nyc for the surgery...i like them both very much! and they take my insurance, too! all the surgeons i talked to want me to be fused lumbar to sacrum, except boachie wanted a side incision, the others want front & back incisions for me...aside from incision placement, they all said the same thing...i didnt really want side incision at my age with the possible effect on lungs, tho i know front & back incisions are no picnic!!

      the surgeons told me numb, tingling, burning stuff is usually caused by nerve problems, just as linda said...i am amazed you had 2 children with scoli...you must be very
      i would suggest you find good surgeons, & also consider pain doctors in the interim..they all tell me they can help alot w/nerve pain, as do the surgeons i speakl to...i am not saying to ignore the cause, just to consider getting temporary help w/the pain..i am doing so in order to clear my head enuf to decide on surgery! enuf pain & i cant think straight at all!! i got sacroiliac injections yesterday, & am getting alot of relief, at least for now

      best of luck in your search for relief
      jess

      Comment


      • #4
        Originally posted by JenM View Post
        Hi everybody-

        I've been reading all of your posts for such a long time (probably for over a year) and now I am finally posting! I am so thankful to read all of your posts and know that there are other people out there who have scoliosis and deal with the same things that I have to.

        Here's a brief background on me: I was first diagnosed with scoliosis when I was around 13 years old. Back then, both my thoracic and lumbar curve measured around 35 degrees. My parents didn't take the situation too seriously and I was never fitted for a brace. They took me to a chiropractor which did absolutely nothing in my opinion back then. I am currently 30 years old and the pain is getting absolutely unbearable. The last x-rays I had were from 2006 which measured 50 degrees for both my thoracic curve and my lumbar curve. Since 2006 I have had 2 children. Ever since I had my kids the pain has gotten extremely bad. I have had shooting, burning pain on the outside of my right foot almost to the point where it feels like someone is stabbing me. That's been going on for 3 years. Then I have had tingling, burning sensations in my pinky finger, middle finger, forearm, elbow, tricep, and now neck, and shoulder. I've been to so many doctors and none of them said anything about the scoliosis so I decided to see a chiropractor a few months back. Well he ordered an MRI and then I found out I have 3 out of 5 bulging discs in my lumbar spine, 1 of which is herniated. That's why I believe I have this sharp, shooting pain in my foot. Then I had an MRI of cervical spine. I had a herniated disc and one protruding disc, which is why I am having all the pain in my arm and hand. So basically I think the scoliosis is causing these problems. Earlier in August I ended up in the ER. My lower back went into a complete spasm and I couldn't even put one foot in front of the other. My lower back completely gave out. Anyway, I was wondering if any of you had any of these problems in your upper or lower extremities, and if so, were they alleviated by surgery?

        I would like some definate, concrete answers as to if the pain would be reduced if I decided to get surgery so I have made an appointment with Dr. Boachie in December. I always hear great reviews about him and so I am excited to see him. I see that many people on this forum have been to him and have nothing but great things to say about him. The only thing is that I am SCARED to death about surgery!!!!! I know deep down inside that it's what I really need to do but I am terrified of it. I used to be 5 foot 6 inches, and I am now 5 foot 4 1/2 inches. I am in so much pain and I need my quality of life back. I used to be a happy person and this pain is really getting to me and I am becoming really depressed. I feel like I need the surgery but I just don't know how to be brave and do it! Everytime I think about it, I feel like I could have a panic attack! Last week I read a post back from 2007 by a lady on this forum who later died during scoliosis surgery and I felt terrible for her and then decided there's no way I could ever do it. I have a 4 year old and a 2 year old and I don't want to ever leave them. So my question to you all is, how did you all make the decision to have surgery? I guess I may feel better when I discuss it with Dr. Boachie for the first time.
        Also, has anyone out there ever gotten a posterior only operation with Dr. Boachie? It seems like everyone on this forum has gotten both anterior and posterior. I have an "S" curve so to me it would make sense to do a posterior operation but I guess I'll have to wait and hear what he says.

        Thanks for listening.
        Hi & Welcome,

        I saw Dr. Boachie and he recommended posterior only surgery, exactly as the other surgeon I saw recommended. It all depends on the individual and your specific problems. I didn't have any disk damage, and I think that's why posterior surgery is sometimes required.

        Good luck. Believe me, no one was more scared than me. It takes time to wrap your head around this surgery. Feel comforted that you're seeing one of the best doctors for this.

        Let us know what happens.
        __________________________________________
        Debbe - 50 yrs old

        Milwalkee Brace 1976 - 79
        Told by Dr. my curve would never progress

        Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
        Pre-Surgury Thorasic: 66 degrees
        Pre-Surgery Lumbar: 66 degrees

        Post-Surgery Thorasic: 34 degrees
        Post-Surgery Lumbar: 22 degrees

        Comment


        • #5
          Hi Jen,

          Dr. Boachie is certainly one of the best surgeons around. As Linda said, the surgery is not fun, and recovery requires time and patience, but I'm doing great now. I also agree that you need to choose the surgeon you trust and leave the details to him. You're pretty young and that should hasten your recovery.

          No one could have been more terrified of this surgery than I was. It took me about 2 years to screw up my nerve to do it. But I can tell you that as frightened as I was, I got strangely calm about two or three weeks before the surgery date. This happens to other people too....it seems as though you have the courage you need WHEN you need it. One of the first things I felt when I first came out of the anesthesia was relief that it was all over.

          All surgical procedures carry a risk of death, but it's extremely rare. Trudy's death was due to a freak mistake made by the anesthesiologist. Really, really rare.

          Good luck with your appointment!
          Chris
          A/P fusion on June 19, 2007 at age 52; T10-L5
          Pre-op thoracolumbar curve: 70 degrees
          Post-op curve: 12 degrees
          Dr. Boachie-adjei, HSS, New York

          Comment


          • #6
            Hi Jen, I am so there with you in a lot of what you're saying. If someone would have told me a year ago I would be pursuing this surgery, I would have told them they were crazy. But I never dreamed I would have this much pain and discomfort. Like everything else, this got much worse after menopause. (Kind of off the subject, but do others find that their pain gets worse later in the day? If I have a meeting or rehearsal in the evening, I am hurting and reaching for the vicodin!) When I talked with the friend of mine who went through the disastrous surgery first time around (broken rods, failed to fuse, incapacitating pain etc.) and she said Dr. Kebaish fixed it, I made the app't. She is 64, fused cervical to sacrum and is virtually pain free. I've read the Wolpert book and I know it's a long haul. But at least you know post-op pain is eventually going to get better, even if it takes months. But what we're dealing with now is permanent (and will probably get worse) unless it's addressed surgically. Thank God we're past the point of months in a body cast (which was the case when I was first diagnosed.) I know I was in denial about the severity of mine for years but not anymore. The worst thing right now is waiting for that first app't., finding out how bad it actually is and how long it's going to take to schedule surgery. I'm a healthy, active 52 year old and it's hard to get your mind around turning yourself into sort of an invalid for a while to fix this. But my mentality right now is get 'er done--just can't live like this anymore. This forum is wonderful and really can prop you up when things get scary. I really appreciate the encouraging stories from the post-op folks--that's great for us frightened rookies to hear. Hang in and know that lots of us are feeling the same way you are!
            Anne


            Anne in PA
            Age 58
            Diagnosed at age 14, untreated, no problem until age 50
            T4 to sacrum fusion
            63 thoracic now 35, 92 lumbar now 53
            Dr. Baron Lonner, 2/2/10
            Am pain-free, balanced, happy & an inch taller !

            Comment


            • #7
              Hi Jen
              wrote to you before...meant to say if you had 2 kids with this back thing going on you must be very brave & very determined!

              ADmoul....i am older, & cant see continuing on constant pain meds...today, for the first time in a YEAR, i got down to a number 3 for pain (out of the usual 10)...apparently the sacroiliac injections i had tuesday are working their way through my back or joints...BUT..as i dont want to always need very strong pain meds (oxycontin, vicodin, they even gave me morphine, but it made me sick & i dont like it, & their latest...nucynta), i also dont want to be having steroid injections forever...i just wanted pain relief to be able to think straight & try to get my mind around the surgery...also to get a break from that chronic, crushing pain that does not allow one to even walk a block!!!

              so, i wish all the best to those struggling with this most difficult of decisions...even tho part of me knows i need the surgery, the rest of me can find reasons not to do it...

              i congratulate all those brave folks who live with all kinds of back pain, & applaud those courageous ones who find the strength to have the surgery....i do believe that if i keep reading the stories shared on this forum, especially the post op ones, i will find the strength too....

              most of all i wish everyone a life free from relentless pain!

              best regards
              jess

              Comment


              • #8
                Thanks everyone for the encouraging words! I'm so glad I have met so many nice people on this forum!

                JRNYC...looks like we may be getting surgery around the same time...I am aiming for July 2010 and I see that you said April 2010 so we can encourage each other on it since I know we are both really scared of doing it! I haven't seen Dr. Boachie yet, my appt. is in December, but with my curvature and all the pain I'm in I am sure he'll recommend surgery. I already spoke to the insurance lady there, and I know he doesn't take insurance. But they take the out of network benefits through my insurance plan, and I have a pretty good plan and I was quoted a range of what I probably will end up paying, so I think I may end up going with him. JRNYC...what other NYC doctors did you end up seeing? I may even try to look for a 2nd opinion.
                Surgery date: June 8, 2010 with Dr. Boachie
                Thoracic curve: 55 degrees, corrected to 25 degrees
                Lumbar curve: 58 degrees, corrected to 27 degrees
                Posterior-only surgery, Levels T3-L3
                31 year old mother of 2 young kids

                Comment


                • #9
                  Hi Jen
                  sent you a private message..

                  take care of you
                  jess

                  Comment


                  • #10
                    Hi Jen,
                    your lumbar mri sounds like mine. I had three bulging discs and two herniated discs at L4/5-L5/S1. The pain down the legs can be excruciating. I also had pain in the pelvic area, for some reason they were extremely bad on the first two days of menses (spelling?). Upon waking from the surgery, I was relieved that this pain was gone. I even went without painkillers for four hours to make sure that the drugs were not masking it! For me the surgery was a godsend.
                    Vali
                    44 years young! now 45
                    Surgery - June 1st, 2009
                    Dr David Hall - Adelaide Spine Clinic
                    St. Andrews Hospital, Adelaide, South Australia
                    Pre-op curve - 58 degree lumbar
                    Post -op - 5 degrees
                    T11 - S1 Posterior
                    L4/5 - L5/S1 Anterior Fusion

                    Comment


                    • #11
                      That's fantastic, Vali! Great to read of your excellent result.
                      Surgery March 3, 2009 at almost 58, now 63.
                      Dr. Askin, Brisbane, Australia
                      T4-Pelvis, Posterior only
                      Osteotomies and Laminectomies
                      Was 68 degrees, now 22 and pain free

                      Comment


                      • #12
                        Hi Jen!
                        I too made an appt with Dr. Boachie. I came on this forum 2yrs ago but not on the surgical thread. I used to be able to manage my back pain with other methods but now nothing helps! I had x-rays done and saw that my lumbar curve progressed significantly in the last several years. I saw Dr. Boachie two weeks ago and feel extremely confident that he is the best one to do this surgery on me. Since my appt. with him I started to come back to the forum and see what others have said about their surgeries. In the last two days I have read many things that make me want to reconsider going through with the surgery, but I keep telling myself that everyone is different and each persons experience isn't going to be mine. I hope and pray that everything goes well for me and for anyone else going through this. I was told that my curve will only get worse and I would rather do this while I am healthy, fit, and young (36yrs old) instead of letting the pain get worse and doing something about it when I'm older. I am scheduling my surgery for January 2010. I will keep you posted on my journey and I hope you will do the same. Best of luck to you! : )

                        Comment


                        • #13
                          Hi Jen,

                          I'm about 9wks post-op and was totally terrified for a long time about surgery. I wouldn't have anything to do with it until the first of the year when my pain was so unbearable that I couldn't even get up and walk across the room. Sleeping was impossible. Every time I moved, I'd wake up from the pain. Surgery, although scary, was the best thing I did. Even though I still have quite a bit of pain, it already is LESS than before surgery. At least pain meds manage the pain now. They didn't before surgery. Best wishes for you and I'll be praying for great success for you!!

                          Deb

                          Comment


                          • #14
                            Hi Jen M
                            i sent you private message...dont think you picked it up..re: other doctors in nyc i like..i liked boachie, but my insurance only pays for doctors in aetna network.. dr baron lonner & dr neuwirth accept my insurance, & i like them both....will go with one of them if/when surgery 2010.....

                            i am getting alot more relief from my sacroiliac injections than any other pain tx i had before...epidurals didnt help (3 of them) facet block injections did little, nerve ablation lasted a month...but these S.I. shots seem to have found the right spot to alleviate (temporarily) the excruciating pain at waist & hip that prevents walking/functioning! so for now, i am very very grateful to have the most pain relief i have felt in a year! now that i can think straight, i am considering surgery for spring 2010....need to book an appt in nyc with one or both of those doctors...and see what i can paln for!

                            best of luck to all, including those in/out of decision process!

                            jess

                            Comment


                            • #15
                              Hi Jess-

                              I just got a chance to read your message. Thanks for sending me the names of the other 2 doctors. I will keep them in mind. I am really excited to meet Dr. Boachie and get his opinion, then I'll go from there. I have an S curve so I think I'll need a really long fusion. I might go to another doctor just to see if they suggest the same levels just to get another opinion. Maybe I don't even need to do that though because I hear such great things about Dr. Boachie. I don't really know until I meet him for the first time.

                              That's great that the S.I. shot are working! Who gives them to you, a neurologist, or an orthopedic surgeon? I wonder if I can get that around my neck area. My neck has been bothering me for a long time now. For two months now I can barely move it two the right and just have excrutiating pain down my arm and hand.

                              I have been thinking and preparing myself for surgery everyday. I have decided I will get it probably in July 2010. My son will go to kindergarten next September so it's probably best I get it in the summer. I want to be up and walking around to be able to take him to the bus stop. It makes me so nervous to think about the surgery though. There are times during the day that I think about it and it almost brings me to the point of having a full blown panic attack! I don't know how I'll ever manage to get myself into the hospital to do it, but I know I need to! My problem is is that I went on UTUbe and watched a bloody, gory video of the scoliosis surgery with the rods and screws and hooks and now I can't get it out of my mind! I've never had major surgery before so this surgery looks very scary!

                              Keep me posted with how the injections are working! Hope you continue to feel better with every passing day!
                              Surgery date: June 8, 2010 with Dr. Boachie
                              Thoracic curve: 55 degrees, corrected to 25 degrees
                              Lumbar curve: 58 degrees, corrected to 27 degrees
                              Posterior-only surgery, Levels T3-L3
                              31 year old mother of 2 young kids

                              Comment

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