Joleen's ordeal

My best friend since early childhood. She has always had rough times, there's no denying that, though much of it was only apparent in retrospect. While she has lived a blessed life in many ways, here lately she is going through yet rougher times than usual.

Starting in 1995 at age 22, after the birth of her second child, she began having symptoms like mini-strokes, blood clotting, blurry vision and headaches. She went to doctor after doctor, had test after test, got diagnosis after diagnosis, and tried treatment after treatment.

Her first official diagnosis was Protein S Deficiency which I'm not sure she still doesn't have. It is hereditary and is what causes the blood clotting.

When pharmaceuticals didn't work, or frankly made things worse with their side effects, she turned to homeopathy. Sometimes she felt better, other times not so much, but anything was better than the others' side effects.

She clung to prayer and decided she would just live with whatever it was because really, all the bills and hassle were affecting her quality of life more than her symptoms.

Still, there was no relief and nothing seemed to really work. Her symptoms worsened and the list got longer. She lost weight, couldn't sleep, she was prone to seizures and sleep apnea.

12 years went by. 12 years! The symptoms got so bad she could no longer function from day to day. The doctors were baffled. The specialists were baffled. She was baffled. We were all baffled. Then someone, I don't know who, got the bright idea to start over, so to speak. One of the first tests they ever did was an MRI on her head to check for any blood clots that may have passed into her brain. What they missed was something they didn't even know to look for.

The new MRI showed what was not obvious before: a herniation at the base of her skull (did you know you have cerebellar tonsils?), sort of above and behind the brain stem, effectively cutting off the flow of spinal fluid to her brain, that had been gradually increasing in size with every strenuous effort like lifting her children or grocery bags or exercise of any kind.

Diagnosis? Chiari I Malformation Thus ends the first leg of her journey. Finally an answer to their prayers. An answer.

Already almost one year ago John J. Oró, M.D. and his staff at The Chiari Care Center took her as an emergency case. After a quick consult and MRI, surgery was scheduled almost immediately. They had to travel from New Mexico to Colorado.

The surgery was a success. Joleen became known as a zipperhead (warning: somewhat graphic), named so for the long zipper-like scar running up from her spine to the back of her skull. All stapled together it looks just like a zipper. (That's Joleen on the left with her fellow Chiari patient/friend, Terri.)

Just when you'd think things couldn't get more complicated some two weeks post-surgery Joleen was in dire pain. Scared and uncertain they drove to the ER. On their way to the hospital they were in a horrible auto wreck; t-boned by a jerk with no license and no insurance. She suffered whiplash as a result and she only thought the pain before was unbearable.

She suffered for weeks and weeks. Three herniated discs in her neck at the site of the surgery. She couldn't walk, she couldn't sleep, she couldn't do anything. She wasn't healing. Pain management wasn't working. The pain increased and eventually she couldn't barely flex a muscle without almost blacking out. Imagine not being able to move your bowels because the pain feels like your head will literally explode at the neck.

And still she was strong and full of faith that her god wouldn't give her anything she cannot handle. I truly admire her for that. She has not wavered in her beliefs throughout this challenging time. If anything else it has made them deeper and more powerful.

Back to Colorado. They and Dr. Oró decided it would be worth it to do surgery for Tethered Spinal Cord Syndrome, another condition she's had since birth that is responsible for her scoliosis and is part and parcel one of the symptoms of the whole. Basically stated her spinal cord was tethered in the lumbar region and they were (are) hoping that by releasing it that will then release pressure on her spinal cord at her neck and allow the herniated discs to start healing and the pain will subside.

Around that time Joleen started a Caring Bridge journal starting on this page. It is password protected but you can IM me or email me for it. Check it out if you want to be inspired by her strength and faith.

And still it continues...

Home finally from the TSCS surgery and she started leaking spinal fluid from her incision. The doctor thought it might yet heal itself and stop leaking and asks them to give it a couple of days. It did not stop leaking. So, flat on her back in the back seat of her uncle-in-law's car, they took her back to Colorado again.

Surgery again at the TSCS site. After identifying the leak in two separate MRIs the doctor could not find it once inside. He spent several hours in there making sure everything was copacetic, applied a blood patch (I think?) and closed her up after piping the spinal fluid lost back into her stomach. Ew. (There is more to what all he did during surgery but I am blanking on that.)

Today she is still in Colorado. They are treating her as if she has a severe case of menengitis to make sure she didn't catch any virus or bacterial infection in her spinal cord. It involves, if I remember correctly, a tube to her arm muscle and a tube into the top of her heart where she receives multiple daily infusions of antibiotics. They are in a hotel now instead of ICU but they can't go home. They can however go on short jaunts in the car and just yesterday spent a day in Estes Park, CO (I am guessing by her description in her journal of bugling elk on a golf course - lol - they are protected in Estes Park.)

They are homesick but they are together. Her husband's job has been very understanding. Her kids are stepping up and taking great care of themselves and each other and their responsibilities at home with help from family. Her community has come forth and thanks to a fundraiser (For more information or to make donations you may contact Christina (Chris) Knox at (505)865-7864 (e-mail christina tk @comcast.net) or the church at (505)865-9334.) they can afford to keep living while they go through all of this. Her friends and family have been supportive and helpful offering food and prayer and love and more prayer, etc.

It has been long and trying and I'm sure it seems like it's lasting forever but this is merely a short chapter in her life. Things will get better and her life will be pain free soon. I know she will continue to look forward. There will always be the light of a new day ahead.