More Info and Explanation... (written by Jason)
Hi Everyone,
Shannon has something in her brain that should not be there, visible on CT scan, that was found on Friday, February 12th. It's putting pressure on her brain which was causing severe sleepiness, facial pain, and vomiting, much like a concussion. A Family Medicine physician identified it as NOT a sinus infection, for which Shannon had persuaded a physician to treat her ten days earlier. We were gently encouraged to go over to radiology and get a CT scan. Surprisingly, they were able to work us in! (We didn't realize what was going on behind the scenes yet.) The radiologist, Shannon said, looked like he'd seen a ghost, or like he was looking at one. We went to ER, MRI, hospital, more CT scans. Discharged Sunday, after a harrowing weekend.
There is no real clue what it is, although there is a default assumption that it is a neoplasm that they should remove. It may be an infection, tumor, cyst, other anomaly, but the most frequent occurring is a cancerous mass. It is not safe to have in there since it is causing smushing of the rest of the brain.
We believe based on our own detailed knowledge of Shannon's history and our neuropsychological training that this is a very slow growing mass that has been there since childhood. For example, the steroids administered have resulted in the apparent total recovery of her right side hearing loss that was first identified at the age of 23 and has been in slow and steady decline. Since the steroid, Aidan and I can no longer whisper anywhere in the house without being heard! She has awakened due to changes in my breathing at night, which she's never been able to hear before. It is a remarkable and obvious difference.
Also, it is otherwise odd that there is no other loss of other specific functions, despite a truly huge portion of her brain being affected (the entire right temporal lobe). Apparently she was not using that part of her brain, literally! It appears to us that brain plasticity has allowed those functions to have long since been taken up by other areas, although her spatial reasoning has always been quite bad in a variety of situations, from driving in reverse, object rotation, bike riding and any racquet sport activity involving a bounce angle. We also have some old neuropsychogical results that we think showed a this at the age of 18. We haven't had a chance to discuss any of this with a neurologist yet.
February 15th - Monday we went to the Experimental Sciences Building where there's a much more powerful MRI than the hospitals have (3 tesla vs 1.5), and we got some fantastically detailed imaging. This level of resolution may allow a neurologist to tell what the hell this is. I sent the entire scan to MD Anderson for admission, and we were accepted within an hour.
February 16th - We are registered at MD Anderson, and are told her case will be taken by Dr. Ray Sawaya, who is the head of neurosurgery there. He also set up the neurosurgery division in 1990. Apparently we cannot possibly have a more qualified person. We are headed on Friday for an appointment on Monday and surgery expected on Wednesday.
Currently: The steroid knocks out all the recently developed symptoms, and she is feeling great, and in fact better than she has for more than a year! She is all social and energetic (but that may partly be steroid itself).
We have had tremendous support from work colleagues and other folks. We owe a tremendous amount to Dr. Bernard Harris, and would encourage you to consider supporting The Harris Foundation (please refer to the donation button at the top of the page). He got us the appointment with Dr. Sawaya, despite a report from a physician at MD Anderson that they are not taking new patients until March while they shut down to install a new medical records system. Dr. Harris is a rather well-known and highly influential physician-astronaut, whose connections led to the quick referral and to being seen by the head of neurosurgery.
We are leaving today for Houston, without a good idea of how long we will be gone.
Please feel free to write notes of encouragement to Shannon on here. And we appreciate a good laugh too!
Comments (19)
Shannon (and Jason of course :) .... just saw this link on FB from Jane, and read the updates. This first week after discovering a "problem" and all the flurry of tests....i remember it well (unfortunately). However, I always have felt that knowledge is power....and the more they can find out, and the more you can read up on, discuss with others is BETTER! We here in Florida are thinking of you, saying a prayer for you, and wishing you lots of love and support on your journey ahead. Please take care of yourselves, each other and let others do for you what they can. It helps them....whatever and however small it is, even feeding the pig!!! Lots of love, Aunt Lynn and Uncle Dan (Cundiff)
LOVE AND LIGHT, Y'ALL. 💜💜💜
Love you guys bunches and am so thankful you are going to MD Anderson. Big prayers for answers and a plan of attack!
Dr Rinaldo and Dr Rinaldo :) I cannot express how much you both mean to me. You've had my back and gave me advice throughout my MBA and PhD, and I wish I can be there for you to help in any way needed. Dr. Shannon, you're a superwoman with all of what that word encompasses. Your laugh and encouragement would always make me feel better. You deserve the best and You're the absolute best. I wish you a full, speedy and easy recovery road.
Hello Shannon and Jason: This is Mink, a former PhD student at Rawls. Jason, you may remember me because I asked for help collecting my dissertation data at the last minutes almost a year ago. And I still thank you a lot for that! Let me share my experience about brain surgery that I hardly tell anyone for more than 15 years already. Yes, I had a brain surgery when I was 18. That time I was a freshman and school just started about a week or so. My major symptoms were headache and vomiting (I could not eat anything at all). I lost about 20 pounds in 10 days (not a good way to lose weights!). At first, the doctors thought I stressed from being a freshman and could not adjust myself to a new school environment. I knew for the fact that it was not true but did not know the reason why I had such a headache. Then the doctors thought there might be something wrong in my stomach. It took 10 days before I was admitted to the hospital. They x-rayed my brain and they found something substance in my lower brain (down toward my neck). At that time, the doctor (who was well-known as one of the top five brain doctors in my country) looked at x-ray film and told my dad to drop me off from school and got ready for chemotherapy--yes, he thought it was a cancer and it was a very bad one because I never had any other symptoms before. But of course, a surgery was needed to confirm what it was in there. Five days later, I had a brain surgery. I was lucky because it was lower brain toward my neck so no need to deal with skull. The luckier part was it was not tumor, cancer, or those bad stuff, but I had a small leak in my blood vessel. Blood came out and clogged together as seen in the x-ray film. So it was an easy fix for me. We asked about the cause but the doctor said he really did not know exactly what it was but thought that blood vessel may have a defect probably since I was born. I stayed at the hospital for another week and stayed home for one semester. Although after surgery, the doctor said I could go back to school right away. That time I did not feel like it. It took a week at least for me to walk straight again. I could not (or did not want to) sleep on my back for years. After the surgery, the doctor said if we trusted him, I did not have to do any follow-ups, MRI or other methods because he already checked the surrounding blood vessels with his eyes. So I did not any follow ups until about ten years later before I came to the States. I did have an MRI and they found nothing. So until now (and hopefully forever) I did not have any same problems. So I hope and pray that Shannon's case will be something easy to fix! God bless! -Pinyarat "Mink" Sirisomboonsuk
I love you Shannon and I am praying for you constantly
Love you guys and let me know how I can help!
Hi Shannon and Jason! Jodi Johns here from Lexington. Just wanted you to know Shannon that I am sending positive thoughts and vibes your way ❤️ AND due to being the cradle Catholic that I am...I will do my 'stuff' that will make ME feel better by keeping such a special lady lifted in spirit and love daily😉 Take care and much love to all.
Shannon and Jason, You two and Aidan are in my thoughts as you cope with this scary time. You've got lots of people who love you and are sending positive vibes your way. Please let me know if there's anything I can do here on the home front.
Shannon and Jason, you are in our thoughts and constant prayers. Between the two of you, I have NO DOUBT that you will get all of the detailed information about what is happening to determine the best course of action. Baron and I love you guys.
Hey Shannon and Jason -- just hearing about all of this and sending big love and prayers your way!! Y'all are special and strong and being at MD Anderson will bring information and hopefully an aggressive plan of attack! You have our support and help in whatever way you might need it!
If I understand correctly, Shannon successfully mothered Aidan, earned a PhD, obtained tenure, won numerous awards/accolades and in general has been kicking-ass in multiple domains all without using a huge portion of her brain.....so once this mass is removed WATCH OUT WORLD!!!
Hi Jason and Shannon, Sounds like there's a lot to be very optimistic about in all of this information. Ralph and I are thinking of you often and sending positive energy your way!
You are in the best place ever MD ANDERSON......you and your family will be in my prayers daily as you go through this journey......a friend of your Mom. Tammy, Fort Worth Texas
Shannon and Jason you are very much in my prayers. Praying for a complete recovery for you Shannon. The great physician has his hand on you. Let me know if there is anything I can do for you. I will follow your journey and covering you with prayer. Love you and your family.
Shannon, Love you girl. You are so special in so many ways. Please take me up on my offer to help out. My retirement couldn't be at a more opportune time. Jule
You and your sweet family are in my thoughts and prayers.
Hopes and prayers for you as well as a lot of love sent from here, didn't know about this until yesterday and if anyone I know will come through this perfectly it will be you. I've always known and seen the strength you have and have admired you as a beautiful person. I love you. Aunt Martha
We are praying for you guys and remember how wonderful you were with us during our personal tragedy. Two very good friends, indeed are you two Drs. Lots of good things have come out of MD Anderson and Shannon will be one more!