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-   -   My "new member intro" ;) (https://www.neurotalk.org/new-member-introductions/193442-intro.html)

LisafromMaine 08-29-2013 09:46 AM

My "new member intro" ;)
 
My name is Lisa, I am 45yrs old and was Dx'd with IIH/PTC (Idiopathic Intracranial Hypertension aka PseudoTumor Cerebri) 1.5yrs ago. I went the route of conservative treatment (lost 95lbs, supplements, Diamox, repeated LP drains) for as long as I could until I was told I could no longer work (Sign Language Interpreter). That's when I decided to give in and go with a VP Shunt last month.

Since the shunt - two Er visits - one to adjust the shunt to lower the pressure threshold, the other for rebound headaches from abruptly stopping the narcotics after surgery (my bad!) all "plumbing" systems are in perfect working order and after four weeks post op I am beginning to have hope and animation in my life.

I join this group looking for folks who also have VP Shunts as adults and how it impacts their lives. I want to be able to travel by plane again - was unable before surgery. I'm fearful of the diversity I have read and the different kinds of planes/flights that impact us adult passengers. I am able to drive successfully without discomfort at 900ft which before I was in agony and vomiting and confused. Yet I read that this altitude via car is different than the type in pressurized cabin. So I hope to be educated enough to choose a plane wisely for a test flight ;)

I just look forward to connecting to people who understand what it's like to be a "existing" with this rare disorder and its array of symptoms yet also choose to focus on "living" full lives WITH what we have.

Much love and compassion,
Lisa

MelodyL 08-29-2013 11:24 AM

Quote:

Originally Posted by LisafromMaine (Post 1011019)
My name is Lisa, I am 45yrs old and was Dx'd with IIH/PTC (Idiopathic Intracranial Hypertension aka PseudoTumor Cerebri) 1.5yrs ago. I went the route of conservative treatment (lost 95lbs, supplements, Diamox, repeated LP drains) for as long as I could until I was told I could no longer work (Sign Language Interpreter). That's when I decided to give in and go with a VP Shunt last month.

Since the shunt - two Er visits - one to adjust the shunt to lower the pressure threshold, the other for rebound headaches from abruptly stopping the narcotics after surgery (my bad!) all "plumbing" systems are in perfect working order and after four weeks post op I am beginning to have hope and animation in my life.

I join this group looking for folks who also have VP Shunts as adults and how it impacts their lives. I want to be able to travel by plane again - was unable before surgery. I'm fearful of the diversity I have read and the different kinds of planes/flights that impact us adult passengers. I am able to drive successfully without discomfort at 900ft which before I was in agony and vomiting and confused. Yet I read that this altitude via car is different than the type in pressurized cabin. So I hope to be educated enough to choose a plane wisely for a test flight ;)

I just look forward to connecting to people who understand what it's like to be a "existing" with this rare disorder and its array of symptoms yet also choose to focus on "living" full lives WITH what we have.

Much love and compassion,
Lisa



Hi there. Welcome. You have come to the right place. I'm including a link to a forum that has everyone posting about the various shunts they have had and what's happening in their lives. You will make lots of new friends and you can ask any question you need to ask and someone will come along and reply to you.

So sorry this happened to you. You a brave person indeed. You want to fly. You couldn't get me on a plane if you paid me but then again, THAT'S ME, lol

So I wish you happy skies and uneventful flights.

here's the link

http://neurotalk.psychcentral.com/forum14.html

Take care, and again, Welcome

Melody

Darlene 08-30-2013 12:48 AM

Nice to meet you!!
 
Lisa,

:Wave-Hello: It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Looks like you have been going through a lot. Melody has given you a great start to begin with.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

LisafromMaine 08-30-2013 12:55 AM

Thank you
 
Thank you. I have looked at the link and some posts and most are really sad and still riddled with troubles and problems. I am not sure that I will follow much more as I know energy follows thought and I must focus on healing and living my life within my limitations - I will surcome to the illness otherwise - I am easily susceptible energetically and fear I will too begin to sympathize rather than empathize - which will be in service to no one. When I am stronger and more solid, I will return to be more of a support and not part of the problem. Take care. Lisa


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