Back Online

So I am finally back online after our move to Charleston SC. I feel awful about leaving my last post up for so long without filling my readers in on what I found out at TCI. After getting back online I found many emails and messages from many concerned friends wanting to know how I am doing. With the way I described my return of symptoms in my last post I am guessing you knew I would be getting bad news at my appointment at TCI.

I was worried that my spinal cord had re-tethered but that is not what the docs at TCI thought.

Dr. Insigna:
He thought my symptoms were being caused by increased cranial-cervical instability and that the "falling sensation" I was having was more extreme light headedness and that a ligament had slipped in my neck which was causing my instability to worsen as well as the increase in neck pain due to my neck muscles having to compensate for the loose ligament. Dr. Insigna believed that my tail bone pain was coming from my change in posture over the last few months as my instability worsened. He had a couple of recommendations and his only course of treatment if those things were not helpful would be cranio-cervical fusion. He said "A fusion is like killing a fly with a sledgehammer, you'll kill the fly but it will leave a mess." He told me knowing that I have 3 sons to care for he would not want to do that to me.


Dr. Insigna's recommendations:
-A new Aspen Vista collar in order to help get the ligament back into position, only an hour or so a day to strengthen the ligament, any longer than that and I risk weakening my neck muscles. He recommended wearing the collar near the end of the day.
-Alexander technique to help with posture and positioning of the head, he cautioned however to be careful of some of the moves because of where I placed on the Beighton scale.
-Hydrate, hydrate, hydrate, he had the analogy that the brain is in a bucket of liquid and that when people get dehydrated the brain will sink, we need to keep it hydrated/ floating, if not the symptoms will get worse and those of us with EDS/Chiari/POTS know we want to avoid worsening symptoms.
-Find a D.O. in Charleston for Cranial Sacral Therapy and Myofascial release to help with my pain.
-No Topamax, even though it had helped me with my headaches when I was on it, it is not a long-term solution as it would exacerbate my osteopenia and that will be something I'll have to worry about as a woman anyway.

Dr. Shelat came in after Dr. Insigna, this is the first time I have been seen by the neurologist after the neurosurgeon (seemed so backwards). He came in and did my neuro exam, talked to me about my symptoms and we looked over my films. We talked about how busy I have been over the past months. He did say he wished Chiari people would learn not to do so much. That was hard for me to hear. Since the beginning of all of this I have been fighting to get better so I can get my life back. Doing less is not the way I see myself getting better.

So I found out from TCI that they don't have many more options for me so I am going to keep fighting, keep looking for other options. I am in a new city and with that will come new doctors, I hoping one of these new doctors will have that magic pill I'm looking for.