My IH Story

In April of 2005, I was diagnosed with PTC (Pseudotumor Cerebri) also know as IH (Intracranial Hypertension). It started when I went in for a routine eye exam. I have had this Optometrist for almost 20 years now. He noticed that I had blurred disc margins and told me to go and see my doctor right away. I had been having symptoms, but I did not really notice them until after this appointment. I was having headaches, seeing spots, shaking often, and having episodes of tunnel vision. I had been sick and thought it was just that. For six weeks, I was unable to drive due to vision problems. My good friend, Melissa, was a huge blessing to me during this time.

Diagnosing IH tends to be a long process for many people, mostly because it is a diagnosis of elimination. For me, the diagnosis came rather quickly. My eye doctor appointment was on March 12th and on April 5th I was given my diagnosis. A spinal tap a few weeks later confirmed it. My pressure was 53 (with the normal range being 8-15)! I was put on Diamox, but after one dose, I had ringing in my ears and my neurologist took me off of it. We tried Lasix next, but it only helped minimally.

On August 2, 2005, I went in for surgery to have an LP (Lumbar Peritonial) Shunt placed. The surgery went fine and the shunt seemed to be working great. The headaches for the first week after surgery were horrible - I could barely think, but they eventually subsided. Unfortunately, I developed a staph infection in one of my incisions. It infected the shunt and it had to be removed. I was in the hospital for 4 days and have had to take intravenous antibiotics for an additional two weeks. The doctor put in a PICC line which allowed my husband to administer the antibiotics from home.

After the infection, I went in for brain surgery. This surgery was to place a VP (Ventriculo Peritonial) Shunt with a programmable valve. From what I have read and after talking to my neurosurgeon, ithere is a much higher success rate with VP Shunts. The surgery was on October 27, 2005 and it went well. After I recovered and had an adjustment to my shunt, I had four months where I felt great. I had not felt so good in over five years and had forgotten what it felt like to be "normal." My neurosurgeon has been awesome and has taken excellent care of me.

For the last three months, I have been dealing with ongoing sinus issues. At first, I was convinced that it was my shunt because all of the symptoms were the same. But, thankfully, my doctor ruled out anything with the shunt. The heat has not helped my sinus headaches any and I am still trying to get rid of the sinus infection. I am hoping and praying to get back to "normal" again soon.

On a positive note, I have every confidence in my doctors and I feel like they have taken good care of me. Though it has been a difficult time, I have felt the support of my friends and family. I have been covered in prayer and can honestly say that I have been at peace throughout this entire ordeal. I am realistic. I know that this is something I will have to deal with for the rest of my life, just like my thyroid disorder. Even still, God is watching over me and the prayers I have received have been so encouraging to me. To be perfectly honest, I was not scared about either of my surgeries. It is even kind of fun to say that I had BRAIN surgery. I think that it has been hardest on my husband and children. My husband has had to take up so much slack for me and my kids do not completely understand, they just know that mommy has been sick off and on and cannot do the things she once did.

Well, that is my story, not yet finished, but God's grace has kept me going and sustains me in all things.