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I am 27 years old and diagnosed last year with Cervical Spinal Stenosis. Its Congenital.

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  • Hi I just read your message, I am 26 yr old female fashion designer just diagnosed with stenosis. I was previously diagnosed with degenerative disc disease, and facet disease, and went to so many doctors and tried everything accupuncture, massage, physical therapy, nerve blocks, radio frequency ablation. I have been in so much pain for 7 years... It started with my neck and it hurt a lot and I would crack it a lot. Then it was my neck and my head, the pain is chronic it felt like someone shot me in the back of the head. Every day it would get worse and worse. Now it is the most in my neck the entire neck and head-whole head, and has spread into the res of my body, shoulders, back, arms, hands, fingers legs everything. It is the most terrible pain I could ever imagine and it is all the time. I went to another dr. today. I showed him slides from 5 yrs ago of my cervical spine (neck area) he said within 5 mins, degenerative disc disease and stenosis. I never got these treated and now they are so immensely bad. I am probably going to need surgery. I am petite like 5'1 and skinny, I had lower back problems in highschool because I played a lot of sports and was very active but they healed. This is just too much for me, it is ruining my life. I would love to hear your story, because like you, I feel much too young to have this, and I am really scared.
  • Hi I just read your message, I am 26 yr old female fashion designer just diagnosed with stenosis. I was previously diagnosed with degenerative disc disease, and facet disease, and went to so many doctors and tried everything accupuncture, massage, physical therapy, nerve blocks, radio frequency ablation. I have been in so much pain for 7 years... It started with my neck and it hurt a lot and I would crack it a lot. Then it was my neck and my head, the pain is chronic it felt like someone shot me in the back of the head. Every day it would get worse and worse. Now it is the most in my neck the entire neck and head-whole head, and has spread into the res of my body, shoulders, back, arms, hands, fingers legs everything. It is the most terrible pain I could ever imagine and it is all the time. I went to another dr. today. I showed him slides from 5 yrs ago of my cervical spine (neck area) he said within 5 mins, degenerative disc disease and stenosis. I never got these treated and now they are so immensely bad. I am probably going to need surgery. I am petite like 5'1 and skinny, I had lower back problems in highschool because I played a lot of sports and was very active but they healed. This is just too much for me, it is ruining my life. I would love to hear your story, because like you, I feel much too young to have this, and I am really scared.
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  • I was diagnoised last year when I was 6 months pregnant with my first son. I lost all my feeling in my legs and arms and the doctor couldnt figure out what was wrong until I took a MRI. It was discovered I have sever cervical spinal stenosis. The neurologist advised me and my husband that it would be in our best interest to terminate the pregnancy and have the compression surgery done immediantly. Which was not going to happen with us. I had my baby at 32week he was 6lb and health thank the Lord. I have been living with this for 13months now have seen 2 doctors which are telling me to have the surgery. I would have the surgery with no problem but they gave me 80% chance of being paralyzed after the surgery. I am seeing a 3rd spine dr this thursday. But i am very scared, please help me get through this to determine what i need to do.
  • Hi I am 36 and just got my results from the MRI. My Neurologist was shocked and other than explaining my nerve is being compresed he offer a referral to a Neuro surgeon and pain medication.

    Here is what I have : Moderate osteoarthritis of C1 and C2
    Multilevel degenerative disc disiccation.
    c5-6 moderate loss of disc height and volume.
    Spondylitic ridging.
    Uncinate process hypertrophy causing mutilevel (SEVERE C5-6) left foraminal stenosis of varying degrees.
    C6-7 small central disc protrussion without cord contact, canal stenosis, or compression or compromise.

    So I am just getting started and I am so worried. I am a Mom, Mason is 8 and Maddie is 5. I am so worried my normal life is over. I was a volonteer fire fighter and I have had to give that up. I am also an EMT and if my left arm weakness gets worse I will have to quit that too.

    I am so sorry for all of you! I hope we can support eachother. I don't have any answers right now but I will try to help in any way I can.
  • I am 32, female, and was just diagnosed with moderate, bilateral foraminal cervical stenosis, although mine is not congenital. It is still very scary to be as young as we are and have to deal with spinal issues like this. I have some advanced degenerative issues too. My doc says I have a neck of a 60 yr old.

    I had an ACDF (C5/6) in March 2009, which is now, unfortunately, causing the "domino" effect. I go June 15th to see my neuro surgeon to see what his thoughts are as far as treatment. I have been in pain management for a little over two years now, and since about 8 months after my surgery I have had 5 rounds of injections, RFA, physical therapy in 2010, and a multitude of different medications.

    And as others have stated, I have not come across a lot of people that are our age with stenosis. Majority are close to or over 50 yrs old.

    I wish you luck. Keep us posted! There is a lot of good info on SH, and many, many great people that share their stories and are very compassionate about what everyone is going through. These last few months have been really bad for me, and this is the only place I can come to and not feel like I am alone, or a burden. I hate that this forum is here because so many are in pain, but it is a huge comfort knowing there are others that can relate and have great personal advice on how to cope.

    Take care.
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  • i'm 45 now but was diagnosed at age 34 with severe stenosis.Mine is congenital as well. I was born with a small canal.
  • Hey! I searched for this specifically and found your post. So I made an account just to respond lol. 

    I'm a 27 year old mom of 2 with Cervical, Thoracic, and Lumbar stenosis. I finally was diagnosed last year (2017) after years of doctors not willing to find out why my symptoms were happening. I started looking for doctors in 2011.

    My symptoms started in 2007 (17 years old) when I couldn't put my feet where I wanted them and started getting clumsy. In 2009  I started having lower back pain but lost about 70 lbs and that pain went away. In 2011 I started getting dizzy on and off and would have trouble walking, as in them not turning to jelly when trying to step down or stumbling all over the place like I was drunk  The dizziness didn't help.

    Well I got pregnant in 2013 and moved to a place with only one doctor for the whole town for my government insurance (I was only disability insurance at this point after being let go from my job because I was a liability and quitting school because of the walking, carrying things, and focus required - I figured I'd get better or take classes online later). My dizziness went away and my gait improved because of my consistent walking  

    After the birth, my back and neck pain started. In 2015, I have no idea what happened but stabbing and nonstop coldness pierced between my shoulder blades and my neck burned in pain as I struggled to keep my head up. You could feel the coldness to the touch and all of a sudden, any sort of coldness was painful and unbearable. I was still mobile at this point. 

    In late 2016 I got pregnant again and my symptoms spiraled out of control. I was clumsy and could barely walk, I was chronically exhausted and in immense pain second only to giving birth, and vomiting the entire time. I slept most of those 9 months away. 

    We moved to a new city that had much more medical care than the small town we were in. That's when doctors actually thought about my spine, took x-rays and mri's, then finally diagnosed me. I thought I would feel relief when I got the diagnosis. I thought there's be a cure or easy treatment. My two epidural injections have failed. I'm currently in water therapy because physical therapy hurt my thoracic and cervical too much. I'm allowed Norco 5-325mg, Baclofen, and Gabapentin, but doctors are weary about giving pain medication because I'm so young and stenosis is progressive. At least I'll be getting a nerve test later this year.

    I am heartbroken because the life I wanted to have, the career I wanted, all the super physical things I wanted to do are severely limited now. I have trouble just playing with my kids  let alone cleaning or doing extensive work. Even things I liked to do for fun is so restricted, I am always depressed and sometimes bitter because of all the things I can't do. I can't find any emotional support in real life for these chronic pain and mobility issues. I feel so alone, especially being so young and not having much information about my diagnoses.

     I'm hopeful that I'll have an at-home career one day, but right now all I can do is focus on reducing my symptoms and getting through my kids being super young (2 and 4) lol. Oh, and practicing radical acceptance that this my life, I can't change these things, and I can still have a good and happy life regardless. 

  • LizLiz Posts: 9,699

    This is an old discussion created by a member no longer on the forum so I have to close it.

    Liz, 

    Veritas-Health Forum Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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