In my last face to face, I mentioned Jessica. She and Laura Slyman both have pacemakers. It was through an on-line pacemaker support group that they met. While talking with Laura, Jessica recognized many Chiari type symptoms, and prompted Laura to have a MRI. Jessica was a vital part of helping Laura find a proper diagnosis and treatment. Jessica still continues to help others on the internet by listening and giving support.
Jessica started her Chiari journey at the age of 20. Symptoms started early in 2002 after coughing from pneumonia. It wasn’t until she rode a roller coaster that symptoms really started to progress. Symptoms varied and included horrible headaches, neck pain, dizziness, major swallowing problems, loss of gag reflex, balance problems, Nystagmus, nausea, drop attacks, bradycardia, tachicardia, shortness of breath, numbness and tingling in her extremities, and low back pain.
In August of 2002, Jessica had her first posterior fossa decompression at OU Medical Center in OKC. Symptoms didn’t improve, so a decompression revision was done in April of 2003. It is through her persistence, research, and knowledge that she was able to find The Chiari Institute. Symptoms still continued to progress so she sought a second opinion at The Chiari Institute in NY. After several tests and exams, a craniocervical fusion was recommended for cervical instability. Jessica had a cranioplasty and fusion done in January, 2004.
Heart irregularities continued to cause problems and it was recommended that she have a pacemaker. This was done at Oklahoma Heart Hospital in July of 2004. Now that she has a pacemaker, she is unable to MRI’s. She has to have CT mylograms every time she would need a MRI.
Symptoms persisted, and she was diagnosed with Pseudotumor Cerebri, and a VP shunt was placed in November of 2004 at OU Medical Center in OKC.
Jessica continued to have problems, so returned to TCI. She had extensive testing, and this was going to be a long stay in NY. They revised her craniocervical fusion in November, 2005. TCI discovered by pulling up on the head (fusion in extraction) the patient has significant relief in increased intracranial pressure. After the fusion revision, she found she didn’t need her VP shunt any longer and it was ligated (tied off) in December, 2005.
Due to Ehlers Danlos Syndrome, Jessica has poor wound healing. During this time it was found she had a MRSA infection. They performed a debridement surgery which involves opening the wound up and cleaning out the infection. She then received IV antibiotics and the wound was closely watched to make sure it didn’t open again. Unfortunately, symptoms continued to be a part of her daily life. Her mother had to return home, and she was in the hospital on her own. It was decided that the fusion wasn’t stable, and revision surgery took place in January, 2005. During the surgery, they found a broken screw which had been allowing movement in the area. After the revision, Jessica started to feel better almost immediately. She needed to stay in the hospital until her wound was totally healed, and sutures were removed. After being in the hospital for over two months, she was finally able to return home.
Jessica works as a manager in a lingerie department. She returned to work shortly after being released from the hospital. She started back part time for a couple of weeks, then was able to return as full time. Jessica appealed to her insurance company to pay out of network, and was able to win the appeal. She still finds it difficult to work full time, but without her job, she wouldn’t have insurance.
Prior to her Chiari diagnosis, Jessica was very active in the children’s ministry at her church. She used to teach preschoolers twice a week at church along with other activities within the church. She still continues to teach on week of vacation bible school each summer.
Due to many surgeries, she has lost many of her friends. Working full time pretty much takes all of her energy, and she is unable to stay out late like many of her friends. Medications also make her tired.
Jessica started college, but was unable to finish. This has been the hardest aspect of being sick for so long. She hopes that she will be able to return to college in the future, but without a full time job and insurance, this would be difficult.
She feels much better than she did prior to her last stay in the hospital. She is still taking quite a few medications, and hopes to slowly wean off some of them in the future. She lives with her parents, and would like to be out on her own in the near future. She has always kept a positive outlook, knowing there had to be something that would help give her her life back.
Some of Jessica’s hobbies include scrapbooking, and she’s currently making scrapbooks for her three nephews. She also enjoys cross stitching; it’s easier, and can be done from a reclining chair. Both hobbies give her something to do when not at work, and she finds joy in creating new projects.
