I had my 3 month follow up with Dr. Ducic this morning and I told him that I am having pain in the lower skull, neck and shoulders. I said that I massage that area which is the wrong thing to do because that is where the nerves were implanted. No harm, I'll just stop doing that. I thought I was helping out the Myofacial Release Therapy, but I was just irritating it. I have Xeomin (Botox) shots on the schedule for Jan 26th which the PT is against because of my Ehlers Danlos Syndrome. The PT said I should be injecting something other than Xeomin as it weakens me for the PT . Dr. Ducic said to let the neurologist make that decision. I have faith in them and they are a great team at Georgetown: Dr. Ducic, Dr. Moriarity and Dr. Amjad who gives me the shots.
Ehlers Danlos is a difficult thing to live with. My daughters also have it and probably my grandchildren. The one side effect is that as the internet says you have a youthful appearance. That's nice to be a few days from turning 63 and getting carded when you want a beer at Chipotle or have a reunion with a student you haven't seen in 10 years, so you order champagne to celebrate and the waiter cards me but not the student!!!! I'd rather loot a bit older and not live with this pain. Will work on dealing with the pain until next week but still am not ready to accept this as a new normal. Dr. Ducic says the shots should calm things down which was also my thought. I'm really needing a break from so much PT.
Hugs,
Mei Mei
