Author Topic: To have Titanium mesh or NOT  (Read 40001 times)

Mei Mei

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Re: To have Titanium mesh or NOT
« Reply #60 on: July 08, 2012, 08:42:01 pm »
I think why I am different than Jan and Jim is that I also have Ehlers Danlos Syndrome which is a genetic disorder with chronic pain and all sorts of symptoms.    I'm sure that this is why I have not recovered from the Retrosigmoid as others have, but there are several that are like me and I wonder if they too have Ehlers Danlos Syndrome.   You can go to a geneticist and be diagnosed.   The most famous geneticist for EDS is Claire Francomano in Baltimore.   I think if I were a pre op now.  I would shop around until I found a doctor to agree to not put the mesh in.   The woman in Canada didn't have it and she did fine.   I feel this mesh pressing on the dura every second of the day and now wish that I had Watched and Waited till I had found out what I needed to know to proceed.   I rushed into it to get the tumor out and for something that the doctor said to me that I chose him instead of House.   He said that my  tumor was in a position to put me at risk for stroke.   Since then I have never heard this mentioned on the posts.


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

Mei Mei

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  • Posts: 1278
Re: To have Titanium mesh or NOT
« Reply #61 on: July 09, 2012, 09:28:53 am »
There have been many people that have contacted me about their headaches and occipital neuralgia with the nerve entrapment.    I've sent them to Dr. Ducic and Dr. Moriarity for the surgery at Georgetown.     I'm really not an exception.    Talk with Janet, Lizard, Cin605  and the others are not member so you can't contact them on the Forum.
Let us know how your surgery turned out.
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