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The Day My Health Played Havoc On Me

From: Nicole Henrio, nicole_henrio@yahoo.com

Sent:  May 3, 2009 

September 22nd, 2008. The day my health played havoc on me, and since then  the word Life has taken a whole new meaning.

This is lengthy, however it describes what my experience is about.

In July 2008 I started to experience numbness, weakness, loss of balance on my right side. Mainly my hand an my leg. My face would feel funny, like asleep somehow. Hard to describe sometimes. The symptoms became bothersome enough that I made a doctor’s appointment. I had the same symptoms a couple of years prior, but choose to ignore them when they went away. This time, I decided to address them. I was sent to a Neurologist, had a CT Scan. I got the call telling me that something “showed” up on the scan…Looked like I had had some hemorrhage in the brain…I did not panic, I cried…I went for an MRI next, same result, it showed that I had been bleeding in my Brain! The cause? Not sure. Possible aneurysm. How long ago? Not sure. Was I still bleeding? Probably not. Would I bleed again? Not sure. The neurologist DID NOT know, that I am sure of. Was scheduled for an Angiogram at UCSF on Sept. 29th. It was supposed to give  the answers that both I and the Neurologist were seeking.

On Sept. 22nd, I woke up with a headache. As the morning went by, it got worse, my neck got stiff, my eyes hurt at the mere sight of light. I went to have my blood pressure checked at work and it was pretty high; 163/96.  A call to the neurologist office was useless, I had to call twice before I decided to drive myself to the emergency room.

There, I sat for hours. Another patient, another busy day…Finally, my turn, some fluids, blood pressure med, and a CT Scan. Obviously the Doc did not like what he saw and ordered an MRI.

Then everything went really fast. He came to see me and told me that the MRI showed a Brain TUMOR…I lost it.   He said that I had to be airlifted to UCSF immediately. I was in too much disarray to say otherwise. I had to call my family, my oldest one came to sign the papers and I was on my way.

UCSF: In the middle of the night, a team of Doctors is there in he ICU to check me. My first words are about the TUMOR…No tumor I am told, you have a bleeding Cavernous Angioma. A What??? What is that? I am given a brief explanation, and told that I have to remain on bed rest to avoid pressure on my brain. It is still bleeding, well seeping…Also, surgery even though the decision is mine, is THE best option at this point since I have had 2 bleed in less than 3 months. Too much to digest at this point. Oh, and the Neuro Surgeon (Dr. M. Lawton) is out of town  for the next few days. He is the ONL one qualified to do this type of surgery.

After the initial and final diagnosis, I had to understand and learn about this unknown condition that obviously could kill me. I had a friend bring me my laptop and I search and search. I could not wait  and see, could not make the decision to have surgery on MY BRAIN, without knowing as much as I could. The day before the surgery I had a brief explanation of the condition, a overview of the surgical procedure, and a comforting message from the surgeon who had reviewed my MRI on the plane and was confident that he could perform the surgery.

Did I mention that the Angioma was located in the Brain stem? A difficult area I was told…

I met Dr. Lawton at 6:40am on September 26 and I had the procedure started at 7am.

I woke up in excruciating pain I would be a “monster” for the next 18 to 20 hrs. I was in so much pain, I hated the world, I hated the nurses, I hated LIFE!

The next day, the pain was there although not as severe. I had double vision; it was a new symptom. I could sit up, the team of doctors seem to think I was doing good. I apologized to no end to the night nurse who had “put up” with my evil side.

Two days after the surgery, I was allowed to get up. I was eating regular food. I took a few steps with a physical therapist and although weak, I did pretty good. Good enough to be moved to a different room that evening.

The 3rd day I was given a “clean” bill of health so to speak and told that I could go home. I was given a cane, physical therapy prescription, pain meds and out the door……

Eight days after my emergency room visit, I was back home having been diagnosed with a totally unknown condition (to me that is), and having had my Brain operated on.

I can only guess that because of the way everything happened, I did not fully absorb what  I was dealing with.

I tried my very best to “ignore” my new companion. I wanted to resume my life. I am a Mother, a full time student, a part time worker, a dog lover, a friends’ supporter…I have a path set and I am working to get there…..So NO! No “condition” is going to stop me.

 

The first few weeks after getting back home, I went through so many different emotions. I had NO patience, I was exhausted, I would loose it for the smallest things. I cried uncontrollably, would snap. I was back to the “monster” stage. And I did not know how to handle it. I went back to school, wanting to resume my life. Went back to work 3 weeks after surgery. Too soon, I know that now. The feeling of helplessness grew more and more every day. Physical therapy as well as Occupational therapy were going well. I dealt with the double vision for about 1 month then it subsided. My balance improved, my right hand however was still and is still giving me trouble.

I had great hopes in regard to my post op appointment. I needed answers from the people who had saved me. NOT SO! I told them about my feelings, about the helplessness, the fatigue, the fears, the moods………It fell on a DEAD hear! No answers yet as far as the outcome of the surgery, it may take a whole year to find out. No suggestions, no explanations as far as what I was now dealing with….. NOTHING!

I went from thankful to be alive, to desperate, to lost, to angry.

So after my “self pity” party, I was faced with 2 options: Sit and do nothing, or find out as much as I could on my own. I found the Angioma Alliance. A blessing! I learned more from the site than from the medical profession.

I am experiencing recurring symptoms with my vision. The double vision is back when I lay down. I have a very hard time when being in a big store, a forum. Everything gets blurry, I get dizzy, sometimes nauseous. This is affecting my balance also.

I did more searching and found that there is possible help with these symptoms through visual therapy. I am going back to UCSF for my  6 months post op and will mention this to the surgeon.

If I was given a 2nd chance, I am determined to find answers for myself and hopefully for others like me.

My very best wishes to all affected as well as to their Family and Friends.