I have tried really hard the last couple weeks to keep my thoughts, worries and all that is going to myself. It's no secrete I talk a lot and in reality I think I tend to over share or just spit out what ever is going on so I am not having to deal with it by myself. My plan has been to keep quiet as long as possible until I knew details but after today I realized I need to share. Even if no one were to read this I would feel like I got it off my chest and in the event any prayer warriors out there did read it, I would have the benefit of your prayers now. So here it goes, and of course "long story short" doesn't really apply to me. I will try to keep it just long and not longer.
For anyone that is new here, or needs a refresher here is a recap. I was diagnosed with Late State Lyme Disease and other issues in April of 2010 after some on going health issues. It is believed I picked Lyme up almost 32 yrs ago when I was bit by a tick in San Diego, CA at approximately 8 yrs old. Fast forward and both of my daughters have had some health issues here and there and it was determined that they have congenital Lyme Disease since I was not on any treatment (didn't know) while I was pregnant. A little over 2 yrs ago my oldest, now 14, was having random dizzy spells. While I believed at that point it was probably Lyme related we began the process of eliminating any other possible causes. One of our visits was to a pediatric neurologist who decided to do an MRI strictly in an abundance of caution since all other exams were normal. To here surprise, Jenna had (has) a Chiari Malformation Type 1. (This is where the cerebellar tonsils sit a little too low in the head and push into the opening at the base of the skull) We were immediately referred to pediatric neurosurgery. (These docs are at Rady Childrens Hospital in San Diego) Again physical exam findings were normal, and Chiari was really small but just to make sure we did a spinal MRI and to the doctors surprise it was discovered that Jenna has a Syringomyelia or Syrinx for short. (This is where the Chiari is causing pressure resulting in a cyst or pocket of spinal fluid inside the spinal cord) The doctor said we should do Posterior Fossa Decompression surgery. (Considered brain surgery they basically but through the muscles in the neck and remove a small piece of skull, sometimes putting a patch over it. The goal is to relieve the pressure and hopefully drain the Syrinx or at least keep it form getting bigger. There is a slight possibility of permanent nerve damage or paralysis if they Syrinx is putting to much pressure on the nerves and it isn't fixed.) We opted for a second opinion and were sent to a pediatric neurosurgeon at Childrens Hospital of Orange County. This doc felt that Jenna was really a-symptomatic and that her Chiari and Syrinx were both small. He said he would not do surgery but monitor her for the time being. So that's what we have done for the past 2+ years. Every 6 months Jenna would have another MRI and we would have to remove her brackets for her head gear and put them back on. Every time the MRI was unchanged. Then earlier this year Jenna began having a weird pain on the back left side of her head. Another MRI showed nothing new and the pain resolved on its own. We were told at that point that we could wait a year before the next MRI. This entire time Jenna was given no restrictions on her activity. In June of this year it was discovered that Jenna had very mild Scoliosis. In and of it self not a big deal.
Jump forward to August/September and Jenna began complaining of chills and goosebumps only on her left leg between her hip and knee. Until one day she had them on her whole left leg and her leg ached really bad for a good part of the day. Then she began having issues where she felt like she couldn't focus her eyes at times or her eyes couldn't track fast moving objects and sometimes light sensitivity. Frustrated she was having trouble I continued to monitor her knowing that Lyme can cause all sorts of neurological problems. It was a few weeks ago in October when Jenna came home from softball practice telling me her arms and legs had started to go numb. I knew at that point we had to follow up. An MRI was ordered and appointment made with her NS. Unfortunately Jenna had just gotten her top braces on and to the surprise of the techs they made her MRI completely unreadable. We met with the doc anyway. The discussion was that surgery was in our future no matter what. The good news she can continue to chase her dream of playing college softball. A new MRI was needed and depending on what that said surgery would either be urgent or just sometime in the future. I called our amazing orthodontist and discussed our options. We had her braces removed (after only 1 month UGH) and had her fitted for a cheap retainer. We will reevaluate our options after we get this more pressing issue figured out but obviously they can't remove her braces every 6 to 9 months. With braces removed we went back for another MRI last Thursday. Her NS is out of the office this week so we are scheduled to see him on Tuesday the 7th. I was able to pick up a copy of her images and the report on Monday and I'd be lying if I said I wasn't a little concerned. Her Syrinx has gone from her C5/6 - C7 to C5/6 - T1. Other measurements included in the report seem to indicate it may gotten longer but thinner so they may just consider it essentially stable.
There was also some new information on her report that has of course created some questions and concerns. It was noted that there is mild desiccation of her C3/4 and C5/6 along with minimal disc bulges and the straightening of the normal cervical lordosis. (Basically the beginning of degenerative disc disease, with mild bulging discs and loss of the natural curve in her neck). What this all means I am not totally sure and will have to wait to talk to the doctor. One of the things we are looking in to is the possibility of a connective tissue disorder called Ehlers-Danlos Syndrome (EDS). Jenna does have an issue with loose joints and it was suggested by multiple people in a few Chiari and Congenital Lyme groups that she be evaluated for this. I would love to get another opinion on this issue from a "specialist" in the Chiari world. Just like Lyme they seem few and far between. The one at Standford requires we travel up there and it would cost about $1500 just to have them review what we already have. I did find a specialty place in New York that will do an online review for $300 so that is the option we are looking at right now.
While I had every intention of waiting until our next appt before I shared the latest Jenna had another episode today that left me somewhat frantic and worried. She texted me about 45 min in to school and let me know something was wrong with her legs. She felt like they were swelling up, they got tingly and weak and hurt like they were bruised all over. She was able to walk and continue with school but it was very bothersome and while most episodes have lasted a matter of minutes this one continued for most of the day. And as always there is no rhyme or reason to why it starts, what makes it stop, how often it happens or how long it lasts. In true Madson style she (and dad) where pretty adamant that the big softball showcase tournament in Vegas would still be happening this weekend. After talking with the nurse at the neurosurgeons office if she is up to playing, she can. While I am nervous, that I can't be there even though hubby will be, I want her to go and shine. Who knows what the future holds.
Next Tuesday we could be told surgery is happening now and not at our convenience. And yes, like any parent, my soul is crushed. I want so bad to take this from her. Especially because her congenital Lyme probably plays a role in while this all is happening. I want to fix it. Honestly, I have been frantically trying to "control" it all away. If I call the doctor enough, research enough, OR WHATEVER enough, it will magically disappear. Then I switch in to work mode of cleaning the house and making a list of everything I need to have squared away for surgery. Definitely not what God wants me to be doing. You would think I had figured that all out by now. Obviously I have some growing left to do.
Here is what I know about surgery and what I could use from you prayer warriors. Surgery should be few hours. We would most likely spend 1 night in ICU and 3 to 4 days in the hospital. 1 to 2 weeks out of school and 6 to 8 weeks out of softball. My prayer requests right now are for a great softball weekend with not symptoms. Clear direction on treatment. (Believe me having the 2nd doc say no surgery was almost worse than him agreeing with surgery since it left the decision in our hands) That we are in good hands with our doctors and that we can get any other issues she is dealing with diagnosed.
So here I am. Still fighting Lyme. Still being a control freak. Still growing in my faith. Still learning to be STILL.
"Still" by Hillary Scott
I believe that You are God alone
But sometimes I still try to take control
Cause I get scared when I can't see the end
And all You want from me is to let go
You're parting waters
Making a way for me
You're moving mountains that I don't even see
You've answered my prayer before I even speak
All you need for me to be is still....