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Possible neck fusion after scoliosis surgery......

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  • Possible neck fusion after scoliosis surgery......

    It's been a long time since I've checked in here but I'm back looking for input! I'm 2 years post op from my surgery and was fused from L5-T2. While much of pre-surgery pain is gone I have new pain that is located above my fusion. I'm sure many of you can relate to this. The past 6 years I've had a significant amount of trouble with my neck. Recent MRI results show that I have two herniated discs and 1 bulging discs, spinal spenosis starting and arthritis. This results in extremely bad tension headaches that closely resemble migraines and neck pain. My pain is very poorly manage with the doctors not wanting to medicate with narcotics any longer. While I understand their reasons and agree with most of them I have requested that I have something stronger than Tramadol on hand for those bad days that pop up and they continually refuse. I have three boys, my youngest is three now and taking care of him definitely worsens the pain that I have. I'm wondering if I am looking at more surgery in the future and how that surgery may be inpacted by my first surgery and even if it would be worth it. Tired of being in pain but trying to make the best of things
    Susan

    Diagnosed at 10, Boston brace from 11-13 yrs old.
    50* Lumbar w/ 5 centimeter shift to the left and slight rib hump...
    Surgery Date: April 15 and April 22, 2009
    X-LIF approach for disc repair L5,L4,L3,L2
    Posterior Approach for fusions L5-T5
    Dr. Fox @ Naval Medical Center Portsmouth
    Nice and straight now!!!!!

  • #2
    Hi Susan, I have been wondering how you've been getting on. I'm very sorry to hear about your continuing pain and wish I had some valuable advice, but I don't. I just wanted to wish you well and if you do have surgery, that this will bring an end to all these years of pain. Awful to hear about the denial of meds that you need. Best of luck and I hope someone knowlegable comes along soon.
    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


    • #3
      Oh, Susan, I am right there with you. I'm fused from T2-L4, & now my cervical spine is continuing to curve. I've lost over an inch of height as a result, & my C6 & C7 vertebrae are compressing a nerve in my right arm, so that my right hand goes numb spontaneously on a disturbingly regular basis. I also experience neck pain, although not as bad as what you describe. And I also have young children - 5 & 2 - and was trying to get pregnant again until we put that on hold in the face of a lot of x-rays & scans coming up, & possible surgery.

      My only advice is that if you have that much pain, surgery may really be the best option for you. It would be a temporary inconvenience but may allow you to have your life back with your little ones.

      Comment


      • #4
        Oh, PS - I see you are at Naval Hospital. Is your husband military?

        Comment


        • #5
          Hi Susan

          Hey there- sorry to hear about your neck. I appreciate all your help when I saw your surgeon in 2007! I also get a lot of neck pain; I saw a surgeon in Austin last month, and I specifically asked him about my neck. He's planning to get an MRI, then I'll go back to talk to him again. Yes, i'm finally getting the courage -- I think this year will be my turn for surgery. But I hope you can find a good neurosurgeon - are you still in Virginia? I'l send you a PM - God bless! Jamie
          57 years old.
          thoracic curve 68 degrees
          lumbar-sacral curve +/- 41 degrees
          Cspine C3- C7 fusion Nov. 2011 <done! success!!>, then scoli surgery T2- L4 or maybe to sacrum.
          Discogram/ myelogram pending. Surgery to be scheduled, maybe fall 2015. <scared but I know this is not going to get better>
          THANKS TO EVERYONE FOR SHARING EXPERIENCES AND KNOWLEDGE!

          Comment


          • #6
            hi Susan
            sorry to hear that you are having problems again...

            i have kinda what you have, but in the lumbar area, not in the neck...
            herniated discs (degenerative disc disease), bulging discs, spinal stenosis and spinal arthritis...those are lumbar problems...
            also have thoracic problems with listhesis, rotation, and hypokyphosis, with scoli curves T42, L61

            i do not know how bad your pain is, but i suspect it is a high pain level, with chronic pain that can be both disabling and demoralizing...
            i have hydrocodone for "regular pain days" and oxycontin 30 mg for "bad pain days"....
            lesser meds have been tried with me...and done little to nothing to give relief!!

            i think it is a mistake for doctors to allow their patients to be undermedicated...once the pain builds up, as was discussed on another thread recently, it is really hard to get a handle on it!! it gets like a runaway train!

            i hope you and your doctors can find pain meds that help you...at least until and unless there is another option offering lasting relief...
            sometimes, in my opinion, one must get out from under the pain, just to think straight about any other options being offered!!

            best of luck..
            jess

            Comment


            • #7
              Hi Susan

              I’m so sorry about this. What do you think about a little neck traction? Have you seen those pulley devices?

              Ed
              49 yr old male, now 63, the new 64...
              Pre surgery curves T70,L70
              ALIF/PSA 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

              Comment


              • #8
                Jamie,

                It's good to hear from you! I'm glad your finally getting up the courage to have surgery. The decision to have surgery is something that shouldn't be made lightly and one should not go threw with it until they are certain that they are doing the best thing for themselves. My eleven year old reminds me all the time of the things that I am able to do now vs. what I would be doing if I hadn't had the surgery. Kids have good insight sometimes

                I'm still glad I had my surgery despite my neck. I never had an MRI of my neck prior to my surgery and I wish that I had. I think it would have change what my doctor did. It's hard to say though. Please keep me posted as to you MRI results!
                Susan

                Diagnosed at 10, Boston brace from 11-13 yrs old.
                50* Lumbar w/ 5 centimeter shift to the left and slight rib hump...
                Surgery Date: April 15 and April 22, 2009
                X-LIF approach for disc repair L5,L4,L3,L2
                Posterior Approach for fusions L5-T5
                Dr. Fox @ Naval Medical Center Portsmouth
                Nice and straight now!!!!!

                Comment


                • #9
                  What do you think about a little neck traction? Ed[/QUOTE]

                  Ed,

                  Hope your doing well I have not thought about neck traction, but probably not a bad idea. I am considering going back to the Chiropractor but soooo don't want to spend the money there, but I'm sure it would help a great deal. I'll look into the traction!
                  Susan

                  Diagnosed at 10, Boston brace from 11-13 yrs old.
                  50* Lumbar w/ 5 centimeter shift to the left and slight rib hump...
                  Surgery Date: April 15 and April 22, 2009
                  X-LIF approach for disc repair L5,L4,L3,L2
                  Posterior Approach for fusions L5-T5
                  Dr. Fox @ Naval Medical Center Portsmouth
                  Nice and straight now!!!!!

                  Comment


                  • #10
                    Your condition sounds very similar to mine. I knew that having surgery would not put an end to the problems but I had hope to have at least the chance to be pain free for a while. My surgeon retired last summer and I was never contacted. I've been bounced form doctor to doctor since. I'm working with a pain management team but they are useless. I'm scheduled for a epidural steriod shot next week. I was told if the shot doesn't work only then will they consider going back to pain meds. So we'll see. Today I am so spasmed up and I have a great big headache to go with it! Oh the joys of scoliosis!!!
                    Susan

                    Diagnosed at 10, Boston brace from 11-13 yrs old.
                    50* Lumbar w/ 5 centimeter shift to the left and slight rib hump...
                    Surgery Date: April 15 and April 22, 2009
                    X-LIF approach for disc repair L5,L4,L3,L2
                    Posterior Approach for fusions L5-T5
                    Dr. Fox @ Naval Medical Center Portsmouth
                    Nice and straight now!!!!!

                    Comment


                    • #11
                      Again, another fellow scoliosis patient with yet the same story. I'm sorry to hear that you have a many issues as I. I have noticed that over the past two days I've nothing but drop things constantly or I'm off balance and bumping into things. I can definitely rule out meds as a culprit because I'm not taking much and definitely nothing that would cause such symptoms.

                      I'm not sure how my doctors are missing the fact that if you can't break the cycle of pain it just continues. I have made a very solid case, I feel, in regards to needing break through pain meds occasionally. They just do not understand that I am not a person who sits around. First they want you active, than if your active and having pain they want you cutting back. I read on another post that someone felt that doctors are afraid of getting in trouble for over medicating. I believe this to be true and that many have over medicated their patients over the past few years and this is the problem now with not wanting to medicate properly. It's frustrating. I'm not keeping my fingers crossed that the shot will work, they never did in the past on my lumbar area, but we shall see!
                      Susan

                      Diagnosed at 10, Boston brace from 11-13 yrs old.
                      50* Lumbar w/ 5 centimeter shift to the left and slight rib hump...
                      Surgery Date: April 15 and April 22, 2009
                      X-LIF approach for disc repair L5,L4,L3,L2
                      Posterior Approach for fusions L5-T5
                      Dr. Fox @ Naval Medical Center Portsmouth
                      Nice and straight now!!!!!

                      Comment


                      • #12
                        Originally posted by JenniferG View Post
                        Hi Susan, I have been wondering how you've been getting on. I'm very sorry to hear about your continuing pain and wish I had some valuable advice, but I don't. I just wanted to wish you well and if you do have surgery, that this will bring an end to all these years of pain. Awful to hear about the denial of meds that you need. Best of luck and I hope someone knowlegable comes along soon.
                        Jennifer, I found where my surgeon is practicing now, he retired from the military and practicing in the area. I never had any med issues with him. He knew my goals that I wanted to reach after my surgery and understood that my recovery would be a very slow process due to caring for three boys (my youngest a toddler), 2 older boys that play hockey, one being a travel hockey player. I practicely live at the rink which doesn't help either. That is probably the biggest cause of pain maybe even more than my son.....good thing I love to watch the boys play! I guess it was time for me to get back here and get the support from people who truly understand what having scoliosis means and everything that it entails
                        Susan

                        Diagnosed at 10, Boston brace from 11-13 yrs old.
                        50* Lumbar w/ 5 centimeter shift to the left and slight rib hump...
                        Surgery Date: April 15 and April 22, 2009
                        X-LIF approach for disc repair L5,L4,L3,L2
                        Posterior Approach for fusions L5-T5
                        Dr. Fox @ Naval Medical Center Portsmouth
                        Nice and straight now!!!!!

                        Comment


                        • #13
                          Originally posted by TitaniumGrrrl View Post
                          Oh, PS - I see you are at Naval Hospital. Is your husband military?
                          My husband is doing well, thank you for asking! He's stationed on a boat right now and gets underway for 2 months at a time. He has about 1 1/2 years before he moves on to another job. I am very fortunate that he isn't gone for extended periods of time. God bless America :O)
                          Susan

                          Diagnosed at 10, Boston brace from 11-13 yrs old.
                          50* Lumbar w/ 5 centimeter shift to the left and slight rib hump...
                          Surgery Date: April 15 and April 22, 2009
                          X-LIF approach for disc repair L5,L4,L3,L2
                          Posterior Approach for fusions L5-T5
                          Dr. Fox @ Naval Medical Center Portsmouth
                          Nice and straight now!!!!!

                          Comment


                          • #14
                            Originally posted by asccbodypro View Post
                            My husband is doing well, thank you for asking! He's stationed on a boat right now and gets underway for 2 months at a time. He has about 1 1/2 years before he moves on to another job. I am very fortunate that he isn't gone for extended periods of time. God bless America :O)
                            Ah, thank him for his service. :-) I was born at the Naval Hospital in Portsmouth when my dad was stationed there - looong time ago. :-) My husband is a Marine; we're stationed at MCAS Beaufort, although we're due for orders; we've been in Beaufort (first Parris Island, then MCAS) for nearly 4 years, & it's time to move on. We've been exceedingly lucky to have him home for most of that time, & when he has travelled, it has not been for a combat deployment.

                            Are you on Tricare Prime, is that why you're seen at Naval?

                            Comment


                            • #15
                              Tricare and chiropractor

                              Hi Again! Listen, Susan, I believe Tricare will pay for chiropractors; we even have a few military chiropractors. BUT - ask your PCM for a referral to a DO Doctor fo Osteopathy; these guys ARE "doctors" just like an MD, but they know all about manipulation, better than a chiro! and you probably have a few active duty DO's on staff at Portsmouth.

                              I'm glad to hear that you don't regret your surgery; your curve was so bad, and unbalanced- I know there's no guarantee of freedom from pain, but I want to move forward - hoping for an increase in my exercise / activity tolerance. and I want to address any neck issues first. I think scoli affects the entire spine- it's ALL out of whack, just more obvious where the curve(s) is/ are. xxxx Jamie
                              57 years old.
                              thoracic curve 68 degrees
                              lumbar-sacral curve +/- 41 degrees
                              Cspine C3- C7 fusion Nov. 2011 <done! success!!>, then scoli surgery T2- L4 or maybe to sacrum.
                              Discogram/ myelogram pending. Surgery to be scheduled, maybe fall 2015. <scared but I know this is not going to get better>
                              THANKS TO EVERYONE FOR SHARING EXPERIENCES AND KNOWLEDGE!

                              Comment

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