ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: Mei Mei on January 19, 2012, 10:26:37 pm
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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
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Hugs back at ya, wishing you some relief.
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Thanks, Rivergirl. I am having relief at the top of my head but my lower scalp and neck are on fire. I went in to get Botox shots there last week and the doctor refused because I have Ehlers Danlos Syndrome. My PT recommended a doctor specializing in that so I am waiting for his call now that I sent him an email and reports with the MRI.
Thanks again for your concern.
Sincerely,
Mei Mei
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Hi Mei Mei
I'm sorry to hear you're having pain. I haven't been on in awhile, what happened? I thought the pain went away, how long after your surgery did it return and is it the same or a different kind of pain?
Hope the botox gives relief
Jennifer
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Hi Jennifer,
It's the same pain and creeping down my neck and shoulders. It starts at the incision and moves down. WHen I nod my head and and rinse out my mouth the pain comes. There's no escaping it and because of the Ehlers Danlos Syndrome they don't want to cut any more. Am trying to see a new doctor on Feb. 29th.
Can't stay on the computer long because of the neck.
Hugs to you and all of you!
Mei Mei