Author Topic: Ehlers Danlos Syndrome, pain and Cervical Dystonia with Occipital Neuralgia  (Read 3146 times)

Mei Mei

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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
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Tod

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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
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

Mei Mei

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Thank you as always, Tod.    I can't stay on too long because it hurts.

Take care too.
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh