Dear Fellow PTC/IIH survivors and their families:
Well, a lot has happened in the past year! Since the last update in January 2004, I went through six surgeries to solve the immediate problems of the Chiari Malformation, and Syrinx I had developed. As reported, I did go to the Cleveland Clinic to work with a neurosurgeon there who specialized in Syringomyelia. I felt that going to an expert who dealt often with this disease was the best way to go. Unfortunately I was very wrong, almost dead wrong! What I and anyone who has PTC/IIH must ALWAYS REMEMBER, is that any Physician who treats us MUST have experience with, and a great understanding of the primary cause of most of our medical maladies:
Pseudotumor Cerebri/Intracranial Hypertension!
After removing my LP shunt, which had been placed some 14 years ago, my intracranial pressure rose to dangerous levels within the first 24 hours. The neurosurgeon apparently did not comprehend the seriousness of PTC, and refused to listen to me, the patient, or other Physicians with more PTC/IIH experience. I won’t bore you with all the details, but this was one of those nightmarish medical stories similar to the many stories I have heard from so many of you in the past 14 years involving Physicians who do not understand PTC/IIH.
After being in agony for over a week, I was transported back home to Columbus OH (I could not even be vertical at this point), and was finally given the excellent medical care I needed. It was determined that a VP shunt had to be placed immediately. When a temporary “bolt” was placed in my head prior to the VP shunt placement surgery, my intracranial pressure was measured at over 800mm (80 cm)! I cannot even begin to describe the pain I endured for those weeks! It was much worse than even my worst low-pressure headache! After the placement of the 1st VP shunt, I developed a staff infection. The VP shunt had to be taken out and surgeries done over placing a new VP shunt on the opposite side of my head, neck, abdomen etc…. I went through five months of IV
antibiotics etc..
Needless to say, 2004 was not my favorite year!
Dr. Susan Benes, MD a neuro-ophthalmologist at Ohio State University, and Dr. Bradford Mullin a neurosurgeon at Mt. Carmel East Hospital in Columbus have my eternal gratitude for literally saving my life, for their dedication to PTC/IIH patients, and for constantly searching out new and better ways to treat this complex disease.
It has been a little over a year since my last surgery, and I still struggle with overwhelming fatigue, dizziness, and much pain. It is getting increasingly difficult for me to run the Pseudotumor Support Network on my own. We have grown so much! I am truly thankful to get emails from many of you telling me how much our website has helped you and your families to better understand this complicated disease. I am so happy that we can have our book: “The PTC Primer” on the website for all of you to access, read, and copy as well. Please understand if it takes a while for me to respond to emails, as I receive 20+ a day.
In February of this year, I was able to sit down with Dr. Susan Benes, MD and she discussed in detail events, which occurred at the 31st annual meeting of NANOS (North American Neuro-Ophthalmologist Society). The meeting was held Feb 12- 17 in Colorado, I am happy to report that there is much discussion and brainstorming on the topic of PTC/IIH.
I had the honor of attending the 3rd annual Neural Hydrodynamics Symposium here in Columbus OH, at OSU in May of this year. It was truly inspiring to see the amount of thought and ideas presented by an elite group of leaders in the “neuro” fields who are specifically studying the dynamics of CSF flow as it pertains to PTC/IIH. I have faith that the research, which is planned for 2006 and beyond, will develop into more knowledge about PTC/IIH, and better treatments soon!
I also had the great pleasure of speaking to the Tionesta, PA Lions Club in June of this year. The focus of the Lions club Intl. is on saving vision and vision related issues. This dedicated group of approx. 40 individuals in the Allegheny Mountains has been our main financial support for the past 10 years! The members work so hard at community events such as Chicken BBQ’s, Pancake Breakfasts, etc.. to earn money for organizations like ours. If it were not for this relatively small group of incredibly, dedicated people, we would not have been able to run the PTC Support Network all these years. To think that we started with only 7 members in Central OH, and now we have the largest database of PTC/IIH patients in the world!!!!!!! WOW! I had no idea when I began the network that we would reach this many people living with PTC/IIH. It has truly been a blessing to serve all of you.
With this growth, we have ever increasing opportunities to reach even more individuals with PTC/IIH than ever! Therefore, we need more individual contributions this year to help develop new ways to better serve. I also need volunteers with helping manage the Support Network as well. Please look for more info on our web menu page listed under “How YOU can help”.
Lastly, if you are not currently signed up on the IH Registry (which is run by dedicated professionals who I have personally met) at the Intracranial Hypertension Research Foundation, then PLEASE DO SO TODAY!!! This is so extremely important to all of us, as the more people with PTC/IIH that they have registered, the more funding and interest they can get for PTC/IIH research! The sooner you sign up, the sooner we can expect better treatments, and hopefully someday a cure! You can find more information at their very informative website at www.ihrfoundation.org.
God Bless,
Jennifer A Duncan