HereinNY
07-15-2008, 10:36 AM
Hi everyone. I am usually on the Bain Aneurym Forum. But I thought I'd post here about my plans to work in Reasearch and Advocacy in my community.
In January 2004, I suffered a ruptured brain aneurysm which included an SAH and Intraventricular bleed near the Thalamus. Before I went unconscious, I had a stroke and seizure. I remember it all. The surgeons did not operate to remove pressure on my brain and to stop th bleeding until 2 days ater the bleed started.
The surgery was a success and my dr.s in Manhatten found 3 brain aneourysms and coiled them. After 8 days of a tube draining blood and fluid from the brain, they found that I developed Hydrocephalus and implanted a VP Shunt.
Once I was able to stand, I noticed severe pain in my legs. I was sent for a Doplar test and they found 3 blood clots in my left leg and 4 in my right. My lungs were also scanned and they found 3 blood clots in my lungs. I was sent in for a Greenfield Filter. Now with 3 coiled brain aneurysms, a shunt, DVT's and PE's, I was sent to Rehab back on Long Island. I spent 6 days there gaining strength and balance. I had a UTI there from the catheter that was probably more painful than brain surgery!!
Now almost 5 years later, I am as recovered as I am going to be. I moved to Rochester, NY in April in my own apartment. I receive SSDI and Long Term Disability. I have a hugh support system here of close friends so I am extremely happy. I am single with no children, so I have a lot of time to devote to getting my life back on track. The ordeal happened when I was 32...I m 37 now and starting over!
I have permanant disabilites that I struggle with on a daily basis...my peripheral vison was taken away on the left (hemniopsia), the stroke made my left hand unusable and in a fist, and my left leg as weakened tremendously. I battle high blood pressure now, I gained 80 lbs. in the process and am now tryng to be more active.
Neurologically, I have processing delays and attentiion issues because of the deep brain bleed. I battle depression (which is maintained with Lexapro).I was just recently seen by a neuropsychologist, Dr. Peter Como, who put me through a 3 hour battery of cognitive tests. I am still considered above Average/Bright (Yay!!:D) but I do have attention issues, processing delays and difficulty ignoring outside noise and stimulus.
I share all of this because I am ready to sart advocating for annie patients and families. The BAF is based out of Boston, and I am creating a local chapter in Rochester, NY. I plan on writing a book and starting a non profit group for ruptured annie victims.The organization is in the planning phase, so if anyone has any information about creating a nonprofit, I would love it!
My name is Tracy Iona and I am a Survivor! I have a blog on MySpace at myspace.com/hereinny and Facebook.Check it out!
Thank you for your interest.
tiona5153@yahoo.com
In January 2004, I suffered a ruptured brain aneurysm which included an SAH and Intraventricular bleed near the Thalamus. Before I went unconscious, I had a stroke and seizure. I remember it all. The surgeons did not operate to remove pressure on my brain and to stop th bleeding until 2 days ater the bleed started.
The surgery was a success and my dr.s in Manhatten found 3 brain aneourysms and coiled them. After 8 days of a tube draining blood and fluid from the brain, they found that I developed Hydrocephalus and implanted a VP Shunt.
Once I was able to stand, I noticed severe pain in my legs. I was sent for a Doplar test and they found 3 blood clots in my left leg and 4 in my right. My lungs were also scanned and they found 3 blood clots in my lungs. I was sent in for a Greenfield Filter. Now with 3 coiled brain aneurysms, a shunt, DVT's and PE's, I was sent to Rehab back on Long Island. I spent 6 days there gaining strength and balance. I had a UTI there from the catheter that was probably more painful than brain surgery!!
Now almost 5 years later, I am as recovered as I am going to be. I moved to Rochester, NY in April in my own apartment. I receive SSDI and Long Term Disability. I have a hugh support system here of close friends so I am extremely happy. I am single with no children, so I have a lot of time to devote to getting my life back on track. The ordeal happened when I was 32...I m 37 now and starting over!
I have permanant disabilites that I struggle with on a daily basis...my peripheral vison was taken away on the left (hemniopsia), the stroke made my left hand unusable and in a fist, and my left leg as weakened tremendously. I battle high blood pressure now, I gained 80 lbs. in the process and am now tryng to be more active.
Neurologically, I have processing delays and attentiion issues because of the deep brain bleed. I battle depression (which is maintained with Lexapro).I was just recently seen by a neuropsychologist, Dr. Peter Como, who put me through a 3 hour battery of cognitive tests. I am still considered above Average/Bright (Yay!!:D) but I do have attention issues, processing delays and difficulty ignoring outside noise and stimulus.
I share all of this because I am ready to sart advocating for annie patients and families. The BAF is based out of Boston, and I am creating a local chapter in Rochester, NY. I plan on writing a book and starting a non profit group for ruptured annie victims.The organization is in the planning phase, so if anyone has any information about creating a nonprofit, I would love it!
My name is Tracy Iona and I am a Survivor! I have a blog on MySpace at myspace.com/hereinny and Facebook.Check it out!
Thank you for your interest.
tiona5153@yahoo.com