IIH

According to my "homebound" status, I am not allowed to leave my home. There are three exceptions, the first one is to go to doctor's appointments...fair enough. Second, I can leave to attend church, another fair excuse. However the third exception shows that the "homebound" status is designed for patients in the 59-90 age group. I can leave to get my hair done once a week. Yes, to get my hair done. Humm...being 31 and a mom of 3 my hair is really unimportant, let alone in a time of illness. However, this exception reminds me of both my grandmas who go/went to the the "Beauty Shop" once a week to get their hair washed, teased, and set with a gallon of aerosol hair spray. This hair appointment was non negotiable; snow, cancer, travel, holidays would not keep these ladies from their weekly hair routine. So this status gave me a nostalgic giggle. I have been to doctors offices, a spa, a friend's house, a Christmas program, a school assembly, and Panera in the past week, so needless to say, I failing at the "homebound" status.

IIH or Idiopathic (reason unknown) Intercranial (in the skull) Hypertension (high pressure in brain vessels) is a odd condition. Basically my brain was unable to absorb the CSF properly, and the collected fluid causes my brain to swell. Some doctors have linked it to my first bout of viral meningitis. They say the virus changed the chemistry of my brain to where the brain lost the ability to drain my brain properly. Nothing can really determine the cause though. IIH occurs usually in women during "child bearing age". Here is the kicker...it occurs mostly in morbidly obese women. Now, I enjoyed food in my 27 months of pregnancy, and I wasn't too proactive in losing the baby weight. So I am definitely heavier than I was when I was 20. I thought of myself as soft, chubby, round, but not morbidly obese. Also this indication made me feel like I brought this condition on myself. If I would have lost my 20 pounds of baby weight I wouldn't have this condition. After talking with a 2 neurologists and the neurosurgeon they reassured me that my baby weight was NOT the culprit. Also I was not morbidly obese (but like every woman I would like to be thinner), so my paranoia settled.

IIH caused painful head pulsations with change of position, coughing, blowing up balloons, and BMs. Mornings were hard because hours of laying horizontal would only defer any drainage and my brain was the fullest in the morning. Also I would have random debilitating headaches; however, I was very lucky because a lot of suffers have these headaches constantly. Last, my optic nerve behind my left eye was swollen (Papilledema). The Papilledema was the most concerning symptom because that could lead to blindness. Like Basta once told me "you are not going to die from IIH, but you could go blind." So that symptom was the reason for the aggressive treatment.

First, I got on a drug called Diamox. This drug was suppose to act as a brain diuretic. It annoyingly made my fingers and feet tingle, but I could handle that. However, I had constant nausea and itching with the med. I felt like I was pregnant woman allergic to everything. And another non serious side effect was since it was a carbonic anhydrase inhibitor, it caused an offensive taste when I drank any carbonated drinks. Once again, VERY non serious, but just odd adjusting my diet to eliminate carbonation. We have eliminate all nuts form Moe's diet and carbonation from Mommy's diet. Furthermore, the drug was not doing anything to help the fluid retention. My lumbar punctures were still showing opening pressures alarmingly high. So the next step was the Ventricular (brain holes) Peritoneum (stomach lining) Shunt (drainage system) to direct the extra fluid from my head to my stomach where the fluid could be absorbed. I remember breaking out in tears in the neurologist's office when she suggested the VP shunt. She assured me that I would get relief and save my eye sight. She proclaimed the procedure would be easy. She had patients whom only missed a few days of work for the procedure. That made me think "OK, I can handle the most commonly done brain surgery that would put me down for only a week." So the referral was made to Basta.

I went into his office and he gave a completely different road to recovery. Unaware of my panic disorder, he bluntly started asking me litany of questions: are you ready for your head being shaved, 4 incisions, a 12 week recovery, possible infection, possible seizures, possible muscle weakness, possible worsening of headaches, possible ..., possible...,possible... and the list went on and on. I completely understand why doctors have to lay out the worst case scenario to prepare the patient, but I was vulnerable because I was on the heels of my neurologist telling me that this procedure was not much worse than a facial (hyperbole...she really didn't say that). Luckily my panic doesn't manifest in public too much; however, it was going to come out one way or another. And as Basta was looking into my eyes for an exam, I went pale and passed out right into him. Ironically this would be only the first time I passed out onto him or one of his lovely NPs. Once after the initial surgery, I passed out right into his bustier NPs. I was glad she was in front of me because it was a soft landing (very inappropriate, sorry).