My story begins about 3 years ago when I realized that I could not listen to a phone conversation out of my right hear. I could hear voices, but not distinctively make out the words. I assumed I had a lot of ear wax and just basically ignored the symptom. I loved those ear cones and always got some good goo. Between my first and second baby I started getting dizzy when I turned my head to the right. This was a trip and very alarming. I felt like my world was spinning and lasted for a few seconds. I immediately called my primary doctor who referred me to an ENT. I saw the Chief ENT who diagnosed me with BPV Benign Postural Vertigo. I liked the Benign part of his prognosis. He claimed the crystals in my inner ear were dislodged and would need to be readjusted back to where they belong. He put me on the table turned my head to the side and said go home and wait for a miracle. I then pressed for a hearing test to deal with the hearing issue. The hearing sound tech said I checked out normal and everything looked good. I was relieved to know I wasn't going deaf.
Both symptoms continued especially the dizziness. I would have to hold on to something if my world took off. I could not look over my right shoulder while driving for fear of creating the spinning effect while driving. I went back to my ENT and said we needed to try and get those damn crystals in the right place-they were enemy now. I was thinking with modern technology there must be more that can be done. He stated there was only one surgery that only worked in 30% of patients and most people just learned to live with BPV. I was very disappointed and assumed that I too had just become swaying Dara. (I always liked to dance) I learned how to compensate for the spinning with a lot of cute tricks and moves. I even started playing tennis again. Missed a lot of overheads, but looked cute trying!
Around 9 months ago all the symptoms were raging, but with an added bonus of head pressure. It would come in waves lasting anywhere from 1 min to 30 sec. I could breath through the pressure. It was not unbearable like a migraine. I felt like the vessels in my head were constricting. I went in and saw my primary MD. She knew I was seeing the ENT about the dizziness and did not want to step on the ENT's toes. She chalked the head pressure up to sinus and started me on a nasal steroids and claritan. I don't think she got the whole my veins are freaking out up there. But I was willing to try anything. I went for a second hearing test with her hoping they would find something wrong that could be fixed. Again the second test came out normal to tone hearing. I told them I had no problems with tone only with making out distinctive noise like words. The tech that was doing the hearing looked me straight in the face and said your hearing is fine maybe you should pay more attention when people are talking to you. I left in tears and feeling humiliated.
FEBRUARY 24, 2008. Art and I were just riding home in the car from Vegas Baby celebrating my Childhood Best friends Michelle and Shannon's big 40! We had an awesome time with lots of good food, a show and great company. Art was driving and I could not kick this headache. The drinking on the trip was light, so I could not blame the booze. We got home and Nurse Art sprang into action. In bed-lights out-3 advil-20 min of ice to back of neck-followed 20 min rest-2 more advil-20more min of ice. He had it down. I was grateful he was all over it. The kicker was his last trip to visit me as I am violently vomiting and seeing black spiders on the toilet. I was tripping on the spiders, but assumed it was residual from the migraine hallucinations. Art picked me up, cleaned me up, and said girly your spiders just won you a trip to the ER.
So off we go! I make it to the ER while he parks. I walk in and say I think I having a migraine and I am seeing spiders. They send me to another room while they are taking their time talking about their dates last night. So I threw up in the lobby and that got me straight in. The doctor in ER said it sounded like typical migraine and he gave me some toradol for the pain and reglan for the nausea. My head pain was gone by now and I missed my home and my babies. He then said while your here I want to get a CT scan of your noggin to have peace of mind. (pun intended) I was back in my room in twenty minutes. The nurse and doc were talking. We assumed getting together my discharge paperwork. The doctor matter of fact walks over to us and said WE HAVE SOME BAD NEWS! YOU HAVE A BRAIN TUMOR AND I AM SORRY! It was in slow motion and we thought he must be joking. Art and I could not speak. We were in complete disbelief and numb to everyone but each other. The doctor said the neurosurgeon was called in and would be there in 30 min to answer our questions. I blurted out is this terminal. He said we would have to wait for the neurosurgeon to evaluate the CT.
This was the hardest 30 min of our lives. My life with Art and my kids flashed before my eyes. So much more needed to be done. So much more love to give. So many more experiences for our family. Then thoughts of Mom, Dad, Michelle and Julie rush in my heart. Thank God the Neurosurgeon arrived and explained in complete detail what this 4 cm tumor was doing in my head taking up my brain space. Think how much smarter I could of been. He transferred me to his hospital with a complete work up of labs, MRI and CT of ABD, Chest and Pelvis. For once I was feeling relieved that I may live and things were being taken into action finally.
FEBRUARY 26-I had an MRI to have a final diagnosis of acoustic neuroma brain tumor. We were relieved because 99% of acoustic neuromas are benign. Our prayers of all our friends and family were answered. The problem is that it is a very large AN at 4cm. The AN surrounds all the nerves for facial functions, swallow and I would definitely be deaf in right ear. I was just so grateful that I had been giving a chance to see my kids grow up. Art said we could always do some plastic surgery so I would have a constant smile. The CT of Chest all showed clear with no spread of disease--again THANK GOD! I stayed in the hospital for 2 days on IV steroids to decrease inflammation. Now I am off to see the wizard the wonderful AN wizard neurosurgeon from San Diego.
FEBRUARY 27, 2008- Art and I drove up to San Diego the night before and had a nice dinner on the way. We were both extremely nervous and have to keep pinching ourselves. Neither one of us could sleep. The next morning fear really set in. What if I dont like the doctor? What if he found something else? So on and so on...We finally got to meet with Dr. Mastrodimos the chief neurosurgeon that specializes in AN tumors for Kaiser. He explained everything very thoroughly. We had looked in to radiation as an alternative, but the tumor was to large. He explained all of the potential risks. Facial paralysis. losing eye function and swallowing functions are the biggies. But my prognosis to survive are GREAT!!!
17 comments:
I love you
Art
We love you very much and you are constantly in our prayers - along with Art, Maddie, and Mason! Please let us know if there is anything we can do for you guys! You and Art are both very strong, and together the 2 of you seem unstoppable!
Dara my thoughts and prayers are with you and your family...I wish I could give you a big hug.....
I have Vertigo as well...about 2 years ago I was rushed to the ER vomiting and dizziness...they did all the scans and everything came up clear...I still have spells every now and then but it is undercontrol with anti-vert meds....Take care I will be thinking of you...
Your old friend
Angie Killian Abner
Hi Dara, I just wanted to say that I am praying for you and I wish you a very speedy recovery.
HUGS!!
Shari (Parker) Brown
Dara there are many people in your old town of Pearland that are praying for you. Know that you have prayer warriors all around praying for you and your entire family. We love you!!!
BIG hugs to you from your old friend,
Deana Guilliams Baggett
Dara, I am praying for you every day and I know this will all work out for you!!! You are such a wonderful and caring person, so now it is our turn to care for you! Your family is behind you and we love you so much!!!!
Much love, Diana
Hey Dara,
It has been a long time. I am praying for you to have a speedy recovery. Feel free to email or call me my email is farmcharly@yahoo.com and my home number is 903-356-2686. I love you,
Charly Simpson
Dara,
Thank you for posting your blog - it radiates your beauty and vitality. Arthur and I are always sending you positive vibes. I'm glad to hear that you wisely chose to keep your originally scheduled day. it shows that you're mind is clear and you're a terrific advocate for yourself. Also, you'll have those additional days before surgery to be nourished by all of us who love you! And we'll all be there after to support your recovery.
love, leah and arthur
Dara,
Deana is right...You have a lot of your old Pearland friends that are saying a lot of prayers for you and your family. We wish you a very speedy recovery.
Your old friend,
Kirk Dressendorfer
Dara,
When you came into our family, you not only brought the suncsine, stars and rainbow, but tons of the most delicious heart love on the face of the planet. Not to mention the blessing of a once in a lifetime love to our son Art. Dad Freed and I believe you will make a fantastic recovery, you are costantly in our prayers. We will help take care of the M&M kids, you wishes are our command.
God bless and keep you.
Mom Judi and Pop Syl, Art's parants aka Grammy and PaPa
Dara,
When you came into our family, you not only brought the suncsine, stars and rainbow, but tons of the most delicious heart love on the face of the planet. Not to mention the blessing of a once in a lifetime love to our son Art. Dad Freed and I believe you will make a fantastic recovery, you are costantly in our prayers. We will help take care of the M&M kids, your wishes are our command.
God bless and keep you.
Mom Judi and Pop Syl, Art's parants aka Grammy and PaPa
Dara,
I had so much fun with you in Vegas. It was so great to see you both. You can just see the love that both of you have for each other when you are together. You two are awesome! i just wanted you to know that you are constantly on my mind and in my prayers. I am so glad Michelle will be with you. Just don't let her see any needles. Ha! Ha!
Much love,
Christy and Bart
Hi Dara
Its Angie I just wanted to say Hi and I hope your doing well....You are in my thoughts...I hope you and your family have a safe and happy Memorial Day Weekend..
Angie
I was diagnosed with a 4.5 cm AN. I
went throgh the same misdiagnoses and at least I know I'm not going nuts. I scare,ok at time, in shock etc... I just don't want to have facial paralysis. I hope my results are just as good as yours. Thank you for sharing.
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