Patricia's interview
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How did all start?
I don't remember a time when my lower back didn't hurt. In my teens my mom took me to doctors but they said nothing was wrong. I told doctors through the years that my pain was bad. No one took me serious until a nurse practitioner thought something was wrong. I had my 1st MRI @ 38. I have had 4 bad surgeries for tethered cord syndrome. In 2019 I was diagnosed with Adhesive archnoditis by my neurosurgeon. It has been very hard to find doctors that believe me about my symptoms for both.
Do you already have a diagnosis? How long did it take you to get it?
For tethered cord over 20 yrs Adhesive archnoditis I have no clue. I thought the symptoms were tethered cord syndrome.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Surgery..it helped a lot. Generic tordol...it helps my pain a lot
What has been the most useful thing for you so far?
Tordol and surgery
What have been your biggest difficulties?
Slowly losing the ability to do the things I love. Hairstyling, dancing, running, water-skiing, hold my grand children, Losing my independence... asking for help
How has your social and family environment reacted? Have your social or family relationships changed?
My husband at first did not take my pain seriously but over time ...even before diagnosis he became my advocate. My children try to understand but they don't. I have lost a lot of friends with my losing my mobility
What things have you stopped doing?
Hairstylist, Dancing, water-skiing, running, hiking, grocery shopping, holding babies/children, road trips, cleaning my house,cooking everyday, ...I am losing my independence
What do you think about the future?
It scares me. I may need a lot of help and only my husband helps me now.
So far, which years have been the best years in your life? What have you done during them?
My youth.. was very active. Swimming, water-skiing, camping, hiking, hairstyling, track, softball, bick riding, cooking, shopping, road trips alone, cleaning, working in the yard, planting flowers, holding children, camp counsler, worked 3 jobs, very independent
What would you like to do if you didn’t have your condition?
All of the above and rentovate a house have a garden, have animals, small farm, snow ski, travel over seas
If you had to describe your life in a sentence, what would it be?
depressing, because all consuming pain and leg weakness is stealing my independence and I can't depend on anyone to help me do what I cannot.
Finally, what advice would you give to a person in a similar situation?
Learn as much as possible and find the most knowledgeable doctor to help you.
