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Hi I am new here's my story i'd love to hear yours/feedback

tamberlee91ttamberlee91 Posts: 1
edited 12/12/2014 - 3:37 AM in Chronic Pain
This is going to be quite a long one. If you have and are dealing with chronic pain of any kind this is for you. I’ll start by introducing myself and telling you my CP(Chronic Pain). So I am Tam, I am 23 and have been dealing with chronic pain for about 4 plus years. So it all started when I was 12. I was so active as I’m sure many of you were and hopefully still are or someday will be again. I ran, played softball and more. My legs looked funny to me. Knees pointed in, and feet out. Went to the pediatric ortho and he said “Yep, after you stop growing, which is soon, we will do a Tib Fib(tibia, fibula) rotation. Age 16 first surgery. I had 4 surgeries total to complete it. Many months of crutches then learning to walk again and a lot of rehab ha always fun physical therapy is right? NOT ha. Then, I had even worse leg pain on my left side. Long story short on that end they had to go back in and get a piece of floating bone that was sticking out and irritating my nerves. Then, more pain. I was so small my 4 plates and 24 screws were painful in the cold as a lot know. Then the hardware removal in 2011. Then it was all down hill from there sadly. I was working as a CNA in 2011 and ended up lifting a patient who was falling and hurt my back. Went to the ER they just told me it was my sciatic nerve and rushed me out like usual. I continued to work for 6 months with horrible left side left leg pain. Finally I got an MRI and sure enough L4&L5 were bulging. The Dr. basically told me it was 50/50 and he was going to pick the one he thought was causing the pain. Luckily he was right and it worked no more pain for once! Then the pain in my right leg comes with a vengeance. Mainly in my knee and when I stood together I can see it’s a little shifted and so can a lot of other people but not the Dr.s. I have been passed around. It’s tiring having to explain your whole story again. It isn’t as long as what I’m typing but I’m venting ha. After seeing one who I thought would help he said what he thought I needed(de-rotational osteotomy) he didn’t do it. On to the next, after hearing some good things I thought I saw a light. After doing tests on me he told me I have a lot of nerve damage(duh I knew that ha), then that he has also seen many people over 80 in better physical shape than me. But I feel 90 so its ok. Then, he said based on the knee, but how it shifts a bit, and how he felt my hamstrings he said that isn’t just from working out. I think there is something going on with your back not your leg let’s do a new MRI on the back. I stared and broke down he felt bad but I thought this was it, he will help me! but no, I get to get tossed to someone else. I felt defeated. Like they have never seen a complicated case before. I still do have back pain from time to time but the right leg pain is just indescribable. Anyone with pain/chronic pain knows the days where you don’t feel you can even get up but you push. And the worst is feeling like no one understands. They 99% of the time do not understand unless they are or have been in the same boat before. Well, I am currently awaiting an MRI for my back. If anyone is dealing with pain/chronic pain and wants to share your story/talk about the things we deal with on a daily bases I would love that! Not feeling alone is often a big help.

“Life is very interesting. In the end, some of your greatest pains become your greatest strengths” -Drew Barrymore

Tamberly Donato


  • LizLiz Posts: 7,832

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • jjn101165jjjn101165 Posts: 12
    edited 01/09/2015 - 12:12 PM
    Hi tamberlee9,

    Well here's my story. I am 49 years old and am male. In 1985/1986 I had 2 laminectomis to remove herniated disc, c5 c6. I was fine until 2005. Hands started burning. Went to Dr, got MRI and he said it looks like u need c5c6 c7 fused. So I had that done. It was done from front of neck.
    2007, my hands were burning again so went to Dr and got MRI, he said looks like scar tissue has formed in previous surgeries. He said he can remove it but would have to go through the back of the neck like 1985/86. I said OK. He said I would be home in 2 weeks. Boy was i and he in for a surprise!! ¡!!!!!
    He opens me up and sees tumor, nuerofibroma schwannoma that is about 3/4s of an inch and has penetrated the spinal cord dura and the spinothalamic tract of the cord , which by the way there are only 15 cases where that has happened !!! Oh boy !!! Now its a 9 hour emergency tumor removal. I wake up, excruciating pain. Can't feel or move legs. After 1 1/2 weeks in ICU, they transfer me to level 1 spinal rehab where I lived for 1 year. Legs finally started to move an inch after 2 months. Long story short, took 6 years to learn how to walk again and I'm proud to say that I went from wheelchair to walker to 2 canes to 1 cane and am now cane free. I still have diminished propripception but no where near what it was when I started to learn to walk again. Now I have permenant damage to cord. I suffer from sciatica in both legs and feet. Hands still burn too. Now I have seen posts on here where people say you can't have sciatica from neck, OH YES you can if cord is damaged. Dr said tumor removal damaged the sciatic pathways in the spinothalamic tract in cord at c5 c6. I been to 6 other drs and they all agree, yes you can and I am proof of that. I've had MRI to check rest of spine and the rest is fine. Thank god!!!!. Now yes the pain is bad but I am on nuerontin, 3600 mg a day which is a very high and dangerousy dose but at least I'm walking !!! Drs didn't think I would walk again. I proved them wrong! Now listen to how rare this tumor is, all drs said that for nuerofibroma schwannoma that penetrated the spinal dura there are only 100 recorded cases in the history of this and I am 1 out of the 100. Now listen to this. !!! I recently met a women in hospital that had same exact tumor also penetrated the dura hers at t12. Now we are 2 out of the 100 recorded cases in the history of that. That is amazing!!! We will now be friends forever!!! I have been through allot but my grandma always said, " there's always someone in the world worse off than you". And she's right. Even though I am in pain everyday 24 hours 7 days a week with no break. I am walking and I met a wonderful woman who knows exactly what we go through every day. When there are people who will never walk again !!! Grandma you are right!!! I thank god for what he's done for me and pray for those less fortunate than me. To all spinal cord sufferer's, even though things may not be good for you like me and the woman I met, keep your chin up , there's always someone worse off than you. I witnessed it I live it everyday. If I can help anyone here feel free to ask.
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