Saturday, April 16, 2011

Tori's Story

It is time to settle down and start our post's on my grand daughter. I have to start from the beginning for family that has been out of the loop. My Grand daughter Victoria is 14. Last September she was ill, it was bronchitis. For two weeks she got sicker and sicker and we ended up taking her to the Hospital Emergency room to find out she also had mononucleosis. That wasn't enough she was also having a CMV attack. CMV stands for Cytomegalovirus. The symptoms are severe , my daughter spent a month in the hospital with it while she was pregnant for Tori and obviously passed it on during birth. The funny thing is, someone can carry this illness their whole life and you only have one flare up where it makes you deathly ill. After this flare up, it never happens again. Go figure, Tori had her flare up in the middle of mono and bronchitis. During the winter months she was so very severely sick that it was frightening and required a number of trips to the emergency room. During one of these trips it was also discovered she had a large ovarian cyst on her right ovary. Under normal circumstances it was bad enough for surgery but with everything else going on in her body it was not possible so she just lived in constant illness and pain and then lost her insurance. My daughter fought to get it back to no avail and over the next few months we had more trips to the er. At this point she is a uninsured teenager and we got blown off 4 times. They gave me a diagnosis each time of "Generalized anxiety disorder" she got told she was having panic attacks, she was called a hypochondria, she was teased and put on Zoloft , an anti depressant. Zoom forward a few months, Tori is still very sick, she finally got over the bronchitis, and CMV attack, the mono subdued after 5 horrible months and then she got her insurance back. Now having insurance we get on the phone to all her Drs. this leads to visit's. Her gynecologist orders a new ultrasound. We have the results. During the time she was being called a hypochondriac, the large cyst on the right blew up on it's own leaving a mess of scar tissue and there is nothing to be done but guess what? She has a new cyst on the left ovary now. But it is very small so they are going to leave it alone and just watch it. Her MD decided that due to the fact that she had so much pain in so many places that she should have first of all some blood work. There was some suspicion of liver damage from the mono and some tests for thryoid because she has alot of trouble with swelling in her neck and pain in her collarbone area and trouble swallowing. We are still waiting for results of the blood testing. He also decided even though she has had an awful lot of testing she needed a full body MRI. We have the results from that. First, they found a large cyst at the base of her tongue kind of going down her throat, so the Dr. sent her for a CatScan on her throat and thyroid. We are waiting for those results, should have them on Monday. The next thing they found in the MRI is actually 2 problems. First she has a bulging disc and a large gap below the 2nd vertebrae between her shoulder blades. and she also has Syringomyelia. Syringomyelia is a condition of fluid filled tumors in the middle of the spinal cord. The symptoms are severe and disabling. There are several causes for it but the top one is Chiari Malformation. Those of you who know me or have followed my blog from the start know that I am disabled to the diseases of Chiari Malformation and Syringomyelia. There is no cure. Surgery on the Chiari stops the disease from killing us by squeezing our brain but the symptoms are life long and very much like those suffering from M.S. Any way, Tori has an appointment on April 22 with a neurosurgeon at Albany Medical Center. They will look at this MRI and do one on her brain. Mean while we wait. We know surgeries are coming but nothing changes the fact that my grand daughter at 14 may spend the rest of her life disabled by diseases that may have been caught much earlier if she wasn't being blown off as having Anxiety Disorder or being a hypochondriac. Not that it is any one's fault that she has these illnesses (except maybe me since I started this one) but maybe if caught a bit earlier it would have been good since it is known that the earlier in childhood the diagnosis, the better the prognosis. So as I said , we wait till the next test results and Dr. visits before we know more. I will update each time we get new info. In the meantime, I know I don't explain things really well so if you would like to get better info on Chiari Malformation and Syringomyelia please check this website:


  1. I am so sorry to hear this. For both of you.


  2. Thank you PD, it has been a very tough winter, but we are pretty tough so we will get through this one day at a time and conquer it all.