Patients' Stories

Meegan's Story

Hi everyone--

I would first of all like to thank you all for the warm welcome to the group.

It was really very hard for me to take the step to join.  I guess it was because I felt that if I did, I was accepting the fact that I have Arachnoiditis. This has been very painful for me both physically and mentally which I am quite sure you can all relate with. The tears are already falling down my face as I am writing this to you.

I am 33 years of age.  I will be married for 2 years in May to the most wonderful man in the world, my soul mate, Chris. I have a beautiful little girl Rachel who is just 6 mo's old. I am someone who was always told, they couldn't believe how much I could get done, in a day. Up until I went onto disability, I was a Project Manager for a our local distribution electric company.  I had graduated from  Sheffield School of Interior Design and attended College of St. Elizabeth's.  Anyway, enough about this here is my story.

Chris and I were so excited to find out I was pregnant.  Our plan was to have 3 children, God willing. I started labor and we went to the hospital, after 14 hours of labor, they started the epidural.  It took multiple attempts for the anethesiologist to get the epidural in. We know on one of the attempts, he punctured the spinal fluid, my husband had seen it and questioned it. The doctor said that it was no big deal, that they would do a blood patch after the baby was born and that would seal the hole.  At that time we thought there was only that 1 puncture, but have since found out according to the hospital records there were 2 punctures (my sister who is a nurse said that there were 8 needle marks on my back). 8 hours later I had the most beautiful baby girl, 7 lbs 12 ounces.  21 1/4 inches long,  Rachel Marie. Following the delivery I had the most severe headache I had ever had, they call it the spinal headache, you cannot move at all, the pain is so horrific, it even takes all of your energy.  The anesthesiologist advised me that the blood patch he had given me would take care of it. Which after 6 hours it finally did.  The next day I had no headache, until late in the evening. The spinal headache returned. 1 spinal headache is rare, 2 is extremely rare. I waited 8 hours, no change the anesthesiologist advised me that the 2nd blood patch has a 95% success rate.  It works pretty quickly.  The only other way to get rid of was to wait anywhere between 8 to 15 days if I was lucky to get rid of it.  Of course he didn't tell me there were any risks or anything, he basically was selling the blood patch to me because of how quick it would be.

So the next morning after he (anesthesiologist)  was done with his 24 hour shift he had me to lay on my side for him to do another blood patch,  I remember being scared to death, squeezing my husbands hand while this unbelievable pain shot parallel up my spine through my neck and shot out my temple, I started screaming, "Oh my God I am being paralyzed!!" It was the most frightening thing I have ever felt.  I was truly positive I was paralyzed.  The doc told me "Don't move! I'm not done. You'll be fine."  The headache took about 12 hours to go away. I had to lay in bed the entire day.  It did stay away for good this time.  They released me from the hospital the following day.  The day after I was home, I started feeling extreme pain at the base of my spine.  I thought it was from the stress of delivery.  The next morning, I was terrified, I couldn't walk.  I called the gynecologist.  Crying on the phone, being sure once again, part of me was parallyzed. He had me come to the dr.'s office and they did an internal check thinking that perhaps my coccyx bone was fractured.  No, that was all intact,  They sent me to the neurologist, who said all my motor skills were intact.  They sent me home.

At this point I could somewhat walk but, had extreme weakness. The following evening, I started to tremble, I was shivering so badly they had to stick sheets between my teeth so they would not shatter.  My Temperature went to 102.7.  The dr., had us meet her in the hospital for a MRI. This only showed there was a tremendous amount of blood (blood patch x2 = 40 cc blood)  They sent me home.  The following night, same thing happened, this time my temperature 102.9.  they said to take Mortin to get the fever down, meet in the dr.'s office in the am.  My husband and I were at the dr.'s office first thing. The doctor looked over the needle marks, and sent me back to the hospital for another MRI. Again it showed a tremendous amount of blood, but it had moved to the base of my spine.  It was only a matter of time for my body to eat away at the blood till it was all gone.  At this point they were afraid I may have Meningitis, so they then called in a neurosurgeon, who performed a Spinal Tap.  Oh My GOD did that hurt.  My left leg shot out as if it were being electrocuted. They then readmitted me into the hospital.

Fortunately my mother is retired, and was able to be up with us.  She stayed at home with the baby.  My husband stayed in the hospital with me.  After  4 days, I just wanted to be home with my baby. All the dreams you have when  you have your first child, of going home with your child and having this wonderful experience was destroyed. When I came home the 2nd time, I could barely walk.  But I just wanted to be home with my family. I read the hospital reports. They said I was doing good  !!  What a bunch of crap that was! Anyway. My mother stayed with us for 8 weeks. Thank God for her.  I couldn't take care of myself let alone a brand new baby.

It was almost 4 months before I could go on a stroller walk with my daughter and that was only down my street (about 300 ft).  One of the hardest things was that I always knew I wanted to breast feed my children.  I pumped and dumped for 6 weeks, in the hope of coming off all the medicine.  At 6 weeks they told me they didn't know if and when I would ever come off of them so I had to give up on that.  But she  really is doing  GREAT even on the formula!!

At this point 6 months later.  I still am in alot of pain even with the medicine.  Primarily at the base of my spine and down my right leg, although lately the left has been hurting quite a bit too.  I am on 50 mcg of Duragesic/Fentnyl patch.  With Ultram for break through pain. We tried to come off the Patch  to see where my level of pain was going  from 50 to 25, I couldn't walk it was terrible.  So I am back to 50. I can't Believe that I will have to be on this for the rest of my life.  I am having a really hard time accepting it. I just started to see a therapist both for physical and for mental. I am actually getting depressed!

All my life I have always been an extremely happy, optimistic, positive person,  I  am facing the biggest challenge of my life and at times  I feel  so over whelmed. It is comforting to know that there are other people out there  who understand. but I  am sorry to know that there are other people who feel the pain that I do.  If there is anyone out there who had a similar experience ie., from child birth please let me know.  Does anyone have any suggestions for me.  I would love to hear from you.

Thank you all for listening,  I apologize of the length but thank you for taking  the time to read it.  I hope you all feel relief of your pain and have a wonderful day!

What you have just read is my story that I had written when I first became a part of A.S.A.M.S..  I was going to update it,  but as I read it, I felt that perhaps you could get a better perspective as to what happened to me. Unfortunately I am not much better 18 months down the road than I was at 6. I am on more medicines and am still working with a pain management doctor who is helping me to find the right combination of medicines so I can try to lead  somewhat of a normal life.  Maybe mentally I am a little better, thanks to the help of a wonderful therapist who has helped me deal with how life changing this has been for not only me, but for my family.  Right now my health consists of good days and bad days depending upon the amount Of pain I must endure each day.  They say that Arachnoiditis has no cure.I have grown to accept what has happened to me, but that does not mean that I will accept that it is forever.

Meegan