I started this, not because I have writing skills that will keep you engaged, and not to show off my techie skills. (You can already seen through that.) This is an attempt to keep people informed. If you want the details you can visit this site and then those who do not will be saved from constant texts, emails or newsletters. You are always welcome to call, text or email me. I will never see that as anything but lovely. :)
First, Thank you! I appreciate all your prayers and concern on my behalf. It is truly overwhelming. I had gone 2 weeks with no tears but I finally broke down when I saw that Pete's cousin in Boston had emailed. Pete asked what it said, but I had not even read it yet. Just knowing she was concerned brought me to humbling tears. Thanks for all the love you have shown to our family in all its forms. Thank You.
I will start with a timeline of sorts:
OCTOBER 2012 I began random incidents of shooting, electric, horrible pain on my right jawline. Over a week I rarely ate and was afraid of anything that might trigger it. My Dr. was out of town so the well meaning P.A. was sure it was my teeth (even though I assured her it was not a cavity.) I went to the dentist who sent me to the TMJ specialist who said it might be Trigeminal Neuralgia. This is what my googled self diagnosis was so I had read up on it. The Suicide Disease. Sounds bad right? My Dr. (shout out to Uncle Mike!) gave me a prespriction for a seizure med, Tegratol. Pain went away and I was feeling better about life. I began regular visits to the Chiropracter for Neuralgia treatment. I was also feeling oh so tight. My neck was messed up! I came out feeling so much better but never could get the tightness to go away completely.
FEBRUARY 14, 2013 I had been concerned about the long term effects of Neuralgia and taking Tegratol. I made an appt with a neuroligist who wanted an MRI scan before our visit. Valentines day I set out to the hosptal. (BTW, great day to go in, everyone was in a great mood because of all the flowers and chocolate. I even heard a barbershop quartet serenading someone down the hall.) As I was leaving the tech asked me when my Dr. appt was to which I answered, the 18th. He nodded his head and said goodbye.
FEBRUARY 15, 2013 Recieved a call that morning from Neurologists office saying, it was not neuralgia so they would cancel the appt. and refer me back to my Family Dr. Right then I knew. It was confemed when Dr./Uncle Mike called and said it was a benign tumor. To be honest I was not surprised. I had many symptoms over the years that made me think something was not right. I attributed it to old age and kids. It seemed too hypochondriac like to think my suspicions were acurate. LIKE:
Soccer girls: do you remember how I would get dizzy in the game and try running into the ground? Literally. Kim: do you remeber my several weeks of ringing in my ears and you tried to help with a wax candle? My kids definately know how I had to have a Coke almost daily trying to soothe headaches etc. Pete is well aware that I regularly ran out of energy, often going down in a blaze of glory so he had to send me to take a nap while he kept things running. And my neck pain? the tumor is so large (3.5cm) it is pushing on everything including the brain stem. For months I press on my skull behind my ear to relieve headache pressure. Everything adds up. At this point I was so relieved and feeling so free from care. "No Neuralgia!!! A tumor is operated on and then it is gone and life will be normal soon."
FEBRUARY 2013 My parents lived in Downtown Houston and became great friends with Dr. Mims and his wife. He being a nerosurgeon, my mom had me send my MRI (on disk) to him. His feedback was that it probably was an Acustic Neuroma. The best Dr. in the world for this was Dr. Brackmann in LA at the House Institute. If it was his daughter, he would send her there. So I mailed my MRI and a letter to Dr. Brackmann.
We told our kids that Mommy has a problem in her brain and so I need surgery to take it out. They ask a few questions here and there but mostly they can't wait to have sleepovers for a couple weeks. :)
MARCH 4, 2013 My Neurosurgeon in Provo, Dr. Reichman was back from heliskiing so we finally got to meet him. He came highly recommended from everyone in the area. He was great. Pete and he are Loyola Alum so we taked about Chicago for some time. In a nutshell, He said "It is a big tumor in a bad place." He wants to use the subocciptal approach and try to preserve hearing but there is always risk to facial nerves. We scheduled March 23rd to go in. A friend (thanks Rebecca) who had a tumor out 3 weeks before gave me great advice, some on health. Pete and I started a daily dose of cow collostrum and Kefir.
MARCH 6, 2013 Dr, Brackmann in LA called and talked to me about the large tumor and the best thing would be a Translabrynthe approach. He has been publish hundreds of times and he emailed me several chapters of his book that explained it all. After reading and learning what I could Dr. Brackmann called a couple days later. We again talked about the surgery he propsed. He said even though I can hear fine (must AN patients lose hearing and that is how they find the tumor) he has never seen a tumor this big when hearing was saved. I really liked him and more than trust his skill. But I am not ready to concede.
MARCH 2013 After much reading and research this is the easiest way to understand: The tumor is benign and slow growing, therefore we have a little time to sort it out.
There are things like radiation and Gamma Knife etc. but my tumor is too big. It has to be surgery. there are 3 approaches (surgeries) used. One is a Middle Fossa approach but again, too big. so I am left with 2 options:
Translabyrinthine
Pros:
• Oldest approach - longest history.
• An option when there is no useful hearing to preserve.
• Approach facilitates identification of facial nerve for preservation.
• Any size tumor can be removed with this approach.
Con:
• Results are permanent with complete hearing loss in the AN ear.
Retrosigmoid/Sub-occipitalPros:
• Possible preservation of hearing - 50% chance of this when the tumor is small to medium size.
• Approach provides a good view of the AN in relation to
brainstem• Possible preservation of facial nerve.
• Any size tumor can be removed with this approach.
Cons:
• Hearing preservation decreases if the tumor is large.
• Headaches are a more prevalent post-op side effect.
We know this is too big a decision for ourselves. (The only NOT brain surgeons in the equation.) We are praying and and doing what we can spiritually but I believe part of recieving Gods direction is educating yourself as best as you can. We have sent the MRI to 2 other DR.'s and I have an appt. with an ENT surgeon who specializes in Acustic Neuromas. We are praying for direction continually. Again we appreciate those who have also prayed on our behalf.
I will post links re: AN if you are crazy enough to think this wasn't enough to read.
We will keep you posted!
Last week PJ was at a soccer birthday party playing goalie and was the victim of a "13 year old brother" who drilled one into the net. As Pj reached out to get a hand on the ball it bent his wrist back. X-ray confirmed, it was broken. Uncle Mike, knowing PJ and sports are one in the same, said he should get an exo splint. A splint that is molded to your arm and that collegiate athletes, as well as others, wear so they can still participate. It is a cool little gadget and so much less obtrusive than the typical fiberglass. The trainer (yep, went to a legit sports medicine office) that fit it to him said she doesn't give it to kids his age because they can take it off. After promising good behavior he was excited to show everyone his "sports" cast. 
