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Spent most of my first 18 years in braces or hospitals

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  • Spent most of my first 18 years in braces or hospitals

    I orignally posted in here to promote the new Scoliosis Support Group in San Diego but I started reading some of the posts more closely. I am 24 years old and I was diagnosed at the age of 8 with severe scoliosis and kyphosis along with Charcot Marie Tooth (a neuromuscular disorder). By the time I was 10 I had a 90% kyphosis curve and a 52% scoliosis curve and I was crushing my heart and lungs. I have had three spine surgeries since then including having rods put in and year later my body rejected the bars and I had to have them taken out and my spine fusioned. I have also had 2 feet surgeries to help correct drop foot caused by the CMT. Side effects of all the surgeries included a collaped lung now causing ashma, foot deformity, spinal arthritis, no movement of my toes and unable to be on feet for long periods of time. I know that this forum is for 18 and under surgeries, but I am old enough to see how hard it was for myself AND the people who were there to support me. If anyone has a child who wants to talk or parent who needs help understanding please feel free to email me or ask your questions here.
    Jennifer

    26 years old. Diagnosed with severe Scoliosis/Kyphosis and CMT at the age of 8. Have had a total of 6 surgeries, 4 on my spine and 2 on both of my feet. Including rod removal surgery. I am fused from T-2 to T-12.

  • #2
    Littleone....

    I am so glad to meet you! You are the only other person that I know of that has both Kyphoscoliosis and CMT. My 13 y.o. daughter has Kyphoscoliosis and we also believe it is caused by CMT! She just had spinal fusion with instrumentation Dec. 7, 2004. Before having surgery, we saw five different doctors and most of which had no clue what CMT is or what the connection to Kyphosis and Scoliosis was. I only found the connection myself one day by looking up something about CMT and saw the Scoliosis is a side effect of CMT. My daughter will be seen by a pediatric neurologist over the summer. Her doctor has mentioned in passing that she may need foot/leg surgeries in the future, but we need to deal with the current situation first and worrying about everything else later.

    Please feel free to send me a private message or e-mail me (put a note in the subject line so I won't delete it) because I would love to hear more!

    Mary Lou

    Comment


    • #3
      Wow! You are the first that I've heard that has children with CMT and Scoliosis. My dad was diagonsed with CMT after they figured out that I had it. They say that they think it's gentics that passes it but I haven't met anyone like my dad and I. The scoliosis Association might have some information about good doctor's in your area and maybe a support group. If your interested check out http://www.scoliosis-assoc.org/ So to what degree is your daughter that they are putting bars in? What did the dr's want to do to her feet? Does she have the high arch or no arch? I'll have more time to email you later.
      Jennifer

      26 years old. Diagnosed with severe Scoliosis/Kyphosis and CMT at the age of 8. Have had a total of 6 surgeries, 4 on my spine and 2 on both of my feet. Including rod removal surgery. I am fused from T-2 to T-12.

      Comment


      • #4
        CMT is very genetic! In my husband's family, there is about five generations affected with CMT and there are several children (from different generations) that show symptoms of CMT but my daughter is the only one that has been diagnosed with Scoliosis or Kyphosis at this point. From what I've learned, there is actually several different types of CMT and there is now a blood test to confirm two of the types. Jamie's Kyphosis was about 72* at the time of surgery and Scoliosis was about 46* at the time of surgery and still progressing. I don't know what the doctor had in mind with surgery on her feet. I just saw a sentence in his report when he saw her for the first time and he is not the same doctor who did her surgery. Now of our family members have ever had surgery on their feet or legs for the drop foot. Her feet are VERY flat! As a young child she would twist her ankles a lot. She never has been able to run smoothly, never good at rollerskating/rollerblading, etc. Here's a curious question for you, are you or your Dad diabetic? Several family members that have CMT are also diabetic and I'm not sure if there is just a family history of diabetes or if it is connected to the CMT.

        I look forward to hearing from you. As you can tell, I have a lot of questions! Feel free to ask any questions you may have as well.

        Mary Lou

        Comment


        • #5
          Hello CMT victims,
          My daughter had surgery for a thoratic curve and I always felt there was a connection between scolosis and her flat feet. Just a gut feeling I thought..
          I don't know what CMT stands for and it was never brought up. So can someone explain the condition?
          Thanks
          now 16 yr old daughter
          with worsen 65 degree upper curve
          surgery Nov 3, 04

          Comment


          • #6
            Quick cmt response

            I'm on my way to a doctor's appt so I will awnser the questions when I come back but I wanted to give you my favorite CMT site in case you have the time to learn more.

            http://www.charcot-marie-tooth.org/site/content/
            Jennifer

            26 years old. Diagnosed with severe Scoliosis/Kyphosis and CMT at the age of 8. Have had a total of 6 surgeries, 4 on my spine and 2 on both of my feet. Including rod removal surgery. I am fused from T-2 to T-12.

            Comment


            • #7
              CMT or Charcot Marie Tooth (named for the doctors that discovered it) is a neuromuscular diease. Scoliosis is often associated with it. Some of my symptoms included aches and pains in my muscles, walking on tippie toes, lack of balance, easily twisted ankles, pain or weakness in hands. Like Mary Lou said there are different kinds. For example my father has extremely high aches and I have flat feet. It wasn't known my feet were as flat as they were because of my toe walking but after surgery corrected the lenght of my tendons the flat foot became more obvious. It is often misdiagnosed or not reconized at all. My doctor was familiar with both Scoliosis and CMT when I came in and that was how I found out I had it. In most cases the CMT doesnt become apparent until your body is already starting to weaken naturally (getting older) however if you have to diease severe enough it can be detected when your young or have a knowledgable doctor. The effects are not life threatening but can be debilitating as one get's older. Check out the site linked above for more symptoms and causes etc.
              Jennifer

              26 years old. Diagnosed with severe Scoliosis/Kyphosis and CMT at the age of 8. Have had a total of 6 surgeries, 4 on my spine and 2 on both of my feet. Including rod removal surgery. I am fused from T-2 to T-12.

              Comment


              • #8
                Thank you for the link.
                I will keep a watch for any of those symptoms!
                Best of luck to you,and keep us posted.
                now 16 yr old daughter
                with worsen 65 degree upper curve
                surgery Nov 3, 04

                Comment


                • #9
                  Mamakay,

                  As we said, there are several types of CMT. In my husband's family, some of the symptoms are: lose of feeling in hand, legs, feet; a condition called "drop foot" where the muscles of their legs are affected and they have no control of how they walk; some wear plastic braces on their lower legs for support.

                  My daughter has always had very flat feet (so did my brother) and we never really connected it to anything. However, on one post some time ago, and it may have been with you Mamakay, I discussed Scoliosis/ flat feet with others before I knew Jamie's Kyphoscoliosis was probably connected to CMT. My daughter has always had very tight calves (but so does her dad and he's never shown signs of CMT)so there are many symtoms of CMT that can be just related to many other things. My daughter also has no reflexes on her stomach or in her knees. Thankfully I found the connection myself long before surgery, because I know it caused the doctor to use extra caution when monitoring her during surgery.

                  Any another questions, just ask.

                  Mary Lou

                  Comment


                  • #10
                    hi mamakay
                    just wanted to know how everything is going. Haven't heard from you in a while and just checking in to see if everything is going okay.
                    Write if you get a chance
                    jennifer

                    Comment


                    • #11
                      Hi there.

                      Hi Littleone. My name is Ross. I am a 15 year old boy from Southwest Louisiana. I had the scoliosis surgery done in September because of scoliosis and the major problem--kyphosis. I was like you, my scoliotic curve was in the 40's and my kyphotic curve was in the 80's. It was to the point that my spine was compressing on my lungs. You said that you had foot surgeries because of drop foot. Is that like flat feet or feet with no arches? I had to have 5 foot surgeries in little more than a year because I had flat feet. I would really like to hear more about your problems. Hope for the best! Ross

                      hard_roc_child08@hotmail.com is my email address if you would like to email me!
                      Matt

                      Rod Removal Surgery 2/4/2008
                      www.myspace.com/ross40728
                      Had surgery on 9/20/04
                      81* Scheuermann's Disease
                      40* Left Thoracic Scoliosis
                      U Rod Inserted
                      Fused from T2-L3

                      Comment


                      • #12
                        I'm sorry to say that my feet surgeries did not go as well as my back did. And that's not saying alot lol. My back surgeries left me with a lot of pain some numbness and ashma (when they collaped a lung during surgery). My back also rejected the rods and caused a staph infection that was bad enough that it rose to the surface and I had surgery less then a year after the rods were orignally put in. All in all though my back is doing pretty well now. It hasnt moved more now that it is fusioned but the kyphosis aspect is still very prominant. Unfortunally the risk to fix it is not worth the rewards. As far as my feet go, I was walking on my tippie toes since I was 3years old. When a teacher suggested something was wrong with my back and I went to a doctor he realized that I had both Scoliosis and Charcot Marie Tooth. The first surgery on my feet was when I was 9 years old. Before that I was in braces both back and leg to slow the process of getting worse. The first surgery was to lengthen my kilitendon (I'm a terrible speller sorry). All was looking good until the did all the back surgeries on me. Since I was not on my feet they dropped again and I had very small arches and flat feet to begin with after the first surgery. When I was 16 I had my last foot surgery. They lengthen more tendons, shaved some bone, and broke all my toes. To this day I cannot move my toes and have very little ability in my ankles. They are getting bad enough now that I am planning to have surgery again on then within a year. I don't know what they will do yet, I'm stilll looking for a surgeon. However I would like to emphasis that I am doing pretty well. I am 24 years old, have my own apartment , my own car, go to college, hang out with my friends, and have a boyfriend. I say all this because I don't want you to think that I don't have a pretty normal life for a 20-something. Additude is half the battle!! Any questions you have I'd be glad to awnser them. Or even if you just like to talk about any experiences I dealt with.
                        Jennifer

                        26 years old. Diagnosed with severe Scoliosis/Kyphosis and CMT at the age of 8. Have had a total of 6 surgeries, 4 on my spine and 2 on both of my feet. Including rod removal surgery. I am fused from T-2 to T-12.

                        Comment


                        • #13
                          Hey Littleone

                          Hey Littleone! Where do you live? I remember you saying you are looking for a surgeon? I have a great surgeon, but the problem is that he is in Houston, Texas! I don't even know if you are around that part of the country! His name is Dr. David Blumfield! All of his patients love him because he is a great surgeon and has some pretty good bed side manners. He will answer all your questions and he doesn't rush! Hope that this helps you!!

                          Ross
                          Matt

                          Rod Removal Surgery 2/4/2008
                          www.myspace.com/ross40728
                          Had surgery on 9/20/04
                          81* Scheuermann's Disease
                          40* Left Thoracic Scoliosis
                          U Rod Inserted
                          Fused from T2-L3

                          Comment


                          • #14
                            Thanks Matt! I apprciate the name :-) Unfortunally I live in San Diego California, so I don't think that I'll be able to make it to see you doc. I'm really glad that he is such a great doctor for you. They are so hard to find!
                            Jennifer

                            26 years old. Diagnosed with severe Scoliosis/Kyphosis and CMT at the age of 8. Have had a total of 6 surgeries, 4 on my spine and 2 on both of my feet. Including rod removal surgery. I am fused from T-2 to T-12.

                            Comment

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