Interview with Dawn (Arachnoiditis sufferer)

Dawn is someone with Arachnoiditis who shares her story today with Dawn’s story is like many of those who are suffering from Arachnoiditis. If you’re interested in learning more about Arachnoiditis we also have Terri Anderson’s interview on our free membership site. Terri gives us her story and also discusses many obstacles facing those with Arachnoiditis as well as many of the advocacy issues.



4 Responses to “Interview with Dawn (Arachnoiditis sufferer)”

  1. Elaine Vitucci January 26, 2014 at 8:08 am #

    I too have arachnoiditis. I started with my back problems when I was in nursing school in1968. At that time I injured my back attending a comatose patient. I was seen by an orthopedic surgeon, ordered bed rest for 1 week, and returned to floor duty the following week. That summer my problems continued with having numbness in my L leg, with sharp shooting pain, and my mother noticed that I had been ” dragging” that leg on occasion. She took me to another orthopod, who also recommended bed rest, which made my back worse. One morning I we t to get out of bed& moved ” funny” & couldn’t walk. I had to crawl to the bathroom. This went on for a few days and also was in excruciating pain. I finally let my mom call the doc ( you know nurses are the worst patients) and he admitted me to the hospital. At that time(1969) they put me in traction , prescribed pain meds. and then this doctor decided he was going to try this NEW TYPE OF TREATMENT FOR HERNIATED DISC. He was going to inject into my intrathecal space a medication called DEPO MEDRAL!!!!! Need I say more!!! Well, he did 25, YES, I did say 25 injections over a period of 5 weeks. Can you imagine what that did to my CNS, never mind what it did just to spinal cord! A few weeks after. I was released I began having symptoms of hypersensitivity to sound & light. I was also anxious & somewhat agoraphobic. So I told my mom I wanted to see a neurologist about these symptoms. This doctor was livid about the amount of epi’sthat were done . He recommended “NO MORE”, bed rest, quiet , zanex& follow-up. In the years following, I had 2 laminectomies, an epidural for a C-section and many incidences of problems with back, legs, neck, feet, bladder,and kidney problems . I’ve also had problems with occasional hypertension and I am not overweight. I was finally diagnosed with arachnoiditis in 2000 by a neurosurgeon and a radiologist, by means of an x-ray and MRI. They said that I probably had it all along since the beginning of the insult with the DEPO MEDRAL but was never appropriately diagnosed. Sorry for the lengthy reply. I’ve listened to both of the aracnoiditis interviews a d my heart goes out to both of those women. Thanks for listening , Elaine

  2. Kimberly Garske February 5, 2014 at 7:02 pm #

    I’ve had several CESI & a few LESI since 2001. My pain is (slightly) masked with medications that have more side effects than imaginable. When your in severe pain you literally will try anything. One of my worst was RF I had done in 2002. My bio is very lengthy. The worst started after I had ACDF in 2001. C5/6 was compressing spinal cord. I was rearended 1999, didn’t know about whiplash, I was stopped & a truck 3 times size of mine hit me w/o even braking. My neck flexed, popped, but I had career, husband & between us 4 children~i was superwoman & thought my neck pain, migraines, etc, was stress.I worked long hrs, a lot of driving & lifting & when I got home I worked til 12am, supper, homework, sport events, housework! I haven’t been same since 2000. I’m now divorced, lost everything I worked for, had to stop working 2002. NO ONE: Family or friends understood or understand. Tho I go to Pain Clinic I’m in pain daily. Diagnosed with fibro, CFS, DDD, SAD, Depression, Arthritis, list goes on & on. I have to find something to turn my life around. I truly can’t continue this cycle.

    • Dawn Marie G April 27, 2014 at 12:32 am #

      Do you have Arachnoiditis now, Kimberly? It’s hard to face the pain every single with no breaks. We have to take one moment at a time. It’s so exhausting. But keep going. Don’t let it win. The ketamine IV infusions worked very very well for me. It might be worth checking into. There are many options out there to try. It’s a matter of finding what works for you. But please, stay away from the invasive procedures. Or you’ll be wishing you could go back to your pain BEFORE you had them.

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