Friday morning I woke up feeling bad. I could not focus my eyes-everything was a blur-and I continued to feel worse-not my chipper self as the day went on. The ringing that I hear in my ears due to the blood flow around the AVM has been deafening-think of a few high-pitched girls screaming at the top of their lungs in different tones along with the sound of a host of loud crickets or cicadas chirping non-stop in the background. It is enough to cause someone to go insane. Then the nausea began with lack of balance. Next, it was headache pain but not completely like a migraine. I shut myself away from the rest of the world because I could not bear to see any light. I just lay there and meditated. My blood pressure has been back up and that adds pressure to that place in my head. Think of a water hose in the heat of summer that has been lying there all day turned on with full pressure. The water heats and expands until the hose or nozzle blows apart.
I thought things were better because Thursday was such a good day, but we were on ER watch all afternoon and into the night. Saturday, I woke up feeling a little better but with residual pain and eye problems. I still felt bad. The afternoon brought more nausea and pain, sometimes localized around the AVM and then sometimes at the crown of my head on that one side to the back of my eye. Later, we were on ER watch again. I am trying to make it until Monday so that I can call the doctor and go from there rather than just go to the hospital on the weekend. “Why not just go and get it over with?” you must be asking. This is my dilemma…
If the AVM bleeds, my life is in extreme jeopardy. Paramount: I need to get my blood pressure down or one of the “hoses” in my brain will burst. Stress makes it worse as does the pain in my head and in my side. If I go to the hospital/ER, I need to be prepared (in my mind and in my life) for immediate surgery which has a multitude of consequences. I have put off surgery/treatment due to the risk factors but that all goes out the door if I am operated on right away when the risk percentages shoot up. Life will never be the same if I make it through and I may be in a vegetable-like state for the rest of my life or I could die, end of story. This is what is staring at me. I am feeling a little better today but I have already begun to have issues with my head and nausea.
If I elect to have surgery/treatment, the test that I need before they can do surgery carries about a 20-30% chance of some brain damage or death and that is before any surgery. This is needed so a complete treatment plan including what type of surgery, etc. can be made. The risks are what have prevented me from committing and has been my dilemma for years now. The AVM is so deeply embedded that conventional procedures could not be used. Today, there is radiosurgery and other things like embolization and such but the risk is still too great because the AVM is also located in a very crucial part of the brain—not that any part of our brain is not crucial but you know what I mean. It is complicated up there :). We decided some years ago to wait while the kids were young-er knowing the older I got the higher the risk of problems. I wanted to be there for my kids rather than not and I didn’t want to be any more homebound than I am now. I have not regretted that decision.
The way an AVM is treated is such that the result is to get rid of the AVM or bypass it-in simple terms. This can be done in a variety of ways and since no two AVMs or two people are the same, results are not the same. From the doctor’s point of view, he/she may see that slight to moderate impairment is a risk or consequence of something that has to be done. To the patient, this risk of impairment is not just a risk but a way of life. Choices have to made very carefully-there is no turning back. Embolization is a way to “plug” the AVM using different methods such as glue/alcohol or coiling. Gluing can be life threatening if the glue is not placed in the right location or if the “hose” behind the placement ruptures. I knew a lady whose husband died because the glue was placed in the wrong location, and I know people who have had treatment to only learn a couple of years later that they have to have more evasive treatment because the AVM would “grow.” They continue on that road for the rest of their lives-treat then wait and see, then treat again-never gaining a hint of their former life back.
I have been an active part of my treatment and it was because of what my first neurologist told me (paraphrased), “You, more than anyone, know your body because you have lived with this all of these years, through seizures, migraines, and such. Doctors can only treat what is there in front of them. They do not know what you experience so you need to take an active part in your treatment—always. And, stay away from surgeons!” He told me that over 30 years ago. I believe I am still here because I have chosen to be vocal about my options and also that I have trusted in God, the Great Physician. Anyone who says that I do not live on faith does not know me because each day I wake up, I put my faith in God to carry me through until the end of my day-every single day. I have put it all in His hands long ago. I have been truly blessed. I don’t want to make the wrong choice or have someone else to do that for me, so I sit and wait.
I hope your day is spent doing something that makes you happy! Enjoy life!
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Garden2day 