ANA Discussion Forum

Post-Treatment => Post-Treatment => Topic started by: Mei Mei on February 11, 2012, 10:56:36 am

Title: Ehlers Danlos Syndrome, pain and Cervical Dystonia with Occipital Neuralgia
Post by: Mei Mei on February 11, 2012, 10:56:36 am
I went to see a neurosurgeon specializing in EDS.   He said first of all that he saw a Meningioma in my frontal lobe  then he said maybe it is bone.   I asked him how do you make a differential?   No answer.  He said it's benign and not to worry.    Me Worry?   I'm going to see the radiologist on Monday and ask him to look again.

This doctor also said my EDS is type 2.   There are 12 types.    He recommended diseconomy of the C 3-4 and 4-5 but warned that  this will limit my flexibility.   He also said to excise the C-2 ganglion and implant it.
Called the nurse at Gtown Hospital and she said to get a second opinion so I am going to Dr. Fred Schwartz on Thursday.

Ordered a TENS Unit that came yesterday and am trying to open the directions on how to use it on Youtube but it won't open.    I can't get it to work.

When to throw the towel in like Cindy said.    Am in so much pain and have to organize the papers for taxes and the accountant.
Mei Mei
Title: Re: Ehlers Danlos Syndrome, pain and Cervical Dystonia with Occipital Neuralgia
Post by: Tod on February 11, 2012, 11:16:19 am
Oh Mei Mei, I am so very sorry for your continuing pain and struggles. Please don't give up yet! Keep trying to find the help you need. We are praying for you.

-Tod
Title: Re: Ehlers Danlos Syndrome, pain and Cervical Dystonia with Occipital Neuralgia
Post by: Mei Mei on February 11, 2012, 12:47:04 pm
Thank you as always, Tod.    I can't stay on too long because it hurts.

Take care too.
Mei Mei