A Klippel-Feil Syndrome interview , Degenerative Disc Disease, Klippel-Feil Syndrome.

Vickie's interview


How did all start?

I was taken to the hospital at the age of seventeen after a school bus driver wrecked the bus. The hospital I was taken to treated me for a neck sprain, and made no mention of the fused vertebrae. That prompted the syndrome to action. I was in pain from that time, until diagnosed at age approximately twenty four.

Do you already have a diagnosis? How long did it take you to get it?

from age 18 to diagnosis at age 24

For what medical specialties have you been treated? What has been the most useful specialty for your?

I had a kidney abnormality that was surgically repaired at age nine. {vesicoureteral reflex) I also am diagnosed with scleroderma, degenerative disc disease, occipital neuralgia, nystagmus, arthritis, I had an ACDF done in 2015 after being desperate, went to a chiropractor and ended up with a tear in my right carotid artery, ( which at the time was also diagnosed as a congenital deformity). I also suffer from trigeminal neuralgia.

What has been the most useful thing for you so far?

I did have some pain relief after the ACDF, My neurologist and neurosurgeon have been somewhat helpful in prescribing some medications to help manage spasming. I have also having pain management treatments.

What have been your biggest difficulties?

It is extremely difficult to concentrate and led to my eventual total disability. The trigeminal symptoms can strike at any time and last from short spurts to days to a week at a time. The biggest difficulties are pain related issues, and the inability to work, this leaving me unable to be gainfully employed. Furthermore, the limitations on physical activities and social activities resulting in anxiety and depression.

How has your social and family environment reacted? Have your social or family relationships changed?

I believe all of my relationships have been affected.

What things have you stopped doing?

I have no activities that I currently do. My quality of life is close to zero. I was terminated from my last three jobs due to anxiety related issues and the inability to concentrate.

What do you think about the future?

I try not to. I think about getting through every day.

So far, which years have been the best years in your life? What have you done during them?

I was active in early years, attending school, playing in bands, performed both personally and professionally. I went to college and graduated with a 3.96 GPA. I was socially active and enjoyed time with friends and family. I played ball, and jogged for a period of time.

What would you like to do if you didn’t have your condition?

I cannot imagine not having the condition because it seems as though this has been the majority of my life.

If you had to describe your life in a sentence, what would it be?

Once I was a whole being, now a shell of the vibrant productive person that I used to be.

Finally, what advice would you give to a person in a similar situation?

When a doctor dismisses you,,,,, fire them and find someone who either knows something, or who is willing to find someone to send you to who does. If you are belittled by a doctor,,,,tell them they're fired and walk away. If you are spoken down to or symptoms ignored and not addressed.....run ! Don't go to chiropractors.


Jul 30, 2018

By: Vickie

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