Discovering the Tumor

No one can tell me exactly when he showed up or how long he’s  been there, this unwanted guest in my head- a rock, a tumor, or as we sometimes refer to him in more endearing terms “Toomy”.  But here is the story of how they found him…

In May 2012, I started experiencing random headaches which would come on very quickly and often last only a few seconds.  It could be first thing when I woke up, while running errands with the girls, or other times it was a completely random occurrence.  Head position, activity, weather, stress or any other external stimulus could not be found to trigger these headaches.  They normally started in the back of my head (at the base of my neck) then quickly rotated around to my sinuses.  At first I didn’t think anything of it, but then they started to happen more regularly (multiple times a week instead of just once or twice).   The only other strange symptom I was having was I could no longer lay on my stomach with my hands propped on my chin without feeling incredibly nauseous and aware a headache was coming.   Now the headaches were weird, but as far as the stomach thing -maybe that was just because I am getting older and less flexible (that’s what I told myself anyways ;-) )

Eventually, I informed my primary care doctor at Gainesville Family Practice as to what was going on.  I also noticed that sometimes I felt as if there was fluid in my ears. The primary care doctor treated me for allergies, and then when that didn’t help referred me to an ENT specialist, Dr. Lim.  The ENT doctor was very thorough and concerned because I had symptoms like a sinus infection but there was no sign of fluid in my ears or in my sinuses.  After an X-ray of my sinus cavity, he concluded that my sinuses were healthy and the source must be from somewhere else.  He encouraged me to keep looking and to keep him updated.  I think it was the middle of June by now.

Right before visiting Dr. Lim, I had been rubbing my neck during a headache and realized that my neck seemed to be a trigger point for the headaches.  There was lots of tension in my neck, but then again I do have 4 children.  Through further self diagnosis (every mom and her doctor instincts) I noticed that if added heat to my neck the headaches intensified, but cold took them away.  After this discovery Rob and I started discussing whether or not I had done something to my neck.  During these discussions, we recalled a time on our trip to Alabama in May when, in pure blonde fashion, I slammed the trunk of the mini van on my head while unloading something at a rest area.  We thought nothing of this at the time because of course I got a headache – but we proceeded to have a very nice vacation.  This recent discovery redirected our medical journey to include a trip to Prince William Orthopaedics and Dr. Jossan.

I owe alot to Dr. Jossan.  He is a very confident, very thorough doctor who considered all the angles, symptoms, and battled insurance for me in order to research the neck as a source of these headaches.

My insurance required that I first go through physical therapy.  At first physical therapy seemed to help, who doesn’t like a good back massage, stretching exercises, etc.  But the headaches always came back, and after my 4th therapy session came back with a vengeance.

It was Labor Day weekend and 48 hours after my therapy session, I woke up with the worst headache I’d had to this point- nauseous and stayed in bed all day.  Nothing made the pain better.  The next day it was almost as if I was hung over and could feel the looming headache.  That night while watching t.v. I experienced my first problems with my vision. My eyes just weren’t focusing right.

I called Dr. Jossan first thing Tuesday morning, told him I was not returning to therapy, and that we had to do something different.  After a tear-filled visit with him in his office, he battled insurance again for me and got an MRI of my neck approved and referred me to a neurologist (he was not convinced the neck would explain it all). The MRI showed 2 herniated/bulging disks in my neck.  Good news, there was a cause!  I wasn’t just crazy.  Knowing how much pain I had been in and for how long, Dr. Jossan sent me striaght downstairs to the spine care specialist, Dr. Saladin who within less than 48 hours got me started on steroid injections for my neck.  This office moved faster than any office I’ve ever experienced, genuinely cared about my pain, and provided me with almost immediate relief.  It was a much awaited joy and blessing from God! After over 4 months of feeling like I must just be losing my mind, we had something with which to work.

This is where the story should end, but as you and I both know it doesn’t.  The vision issues continued from Labor Day and seemed to be getting worse.  My eyes were crossing on a very regular basis in the evenings, double vision is just what I became to expect about 9 pm.  I was also still experiencing some sensations of fluid in my right ear. This is where, thanks to Dr. Jossan’s earlier referral, Dr. Kroeger picked up the search. Even after the diagnosis of the disks in my neck, Dr. Kroeger was convinced that there was still something else going on… perhaps hitting my head in May damaged something in the brain that would explain the vision/hearing issues.

I owe alot to Dr. Kroeger. I almost cried this morning just thinking about her. (there will be more posts about her in the future, as she continues to be a support with phone calls checking in on me, and allowing my oldest daughter to ask her questions- Dr. Kroeger truly has been an answer to prayer!) She fought for me when I didn’t know there was something  to fight.  She was patient and understanding of my strange explanations of things, and didn’t make me feel like I was going crazy.  Dr. Kroeger genuinely showed concern, and was a complete advocate for me when I didn’t even know I needed one.  She ordered an MRI of my head (which after the MRI of my neck with conclusive results) got denied by my insurance.  Instead of letting this stick, she argued with insurance and got a CT scan of my head approved for Oct. 15.  The appointment was at 8 am and by 10:30 am we received the phone call from her office. The unwanted guest has been identified…

After more than 6 months of medical appointments, 5 different doctors, and multiple medications and tests, the unwanted guest was identified.  I have a brain tumor. I’m sure “Toomy” has been there long before May, but if I had not slammed the car on my head we may not have found him before real damage had been done. The last six months have been frustrating, painful, and almost convinced me I was crazy, but today we are praising God for slamming the car door on my head, for placing doctors in my path who are thorough and don’t give up on their patients, and for showing us the Unwanted Guest, so that we can start the process of eviction… God is good!

Stay tuned for the eviction process… more doctors, more tears, but also so many more blessings… Permanent eviction scheduled for Nov. 9!

Update: If you’re interested in what the first 24 hours after finding the tumor was like in more detail, please read the post “The First 24 Hours.

16 Responses to Discovering the Tumor

  1. Pingback: An Amazing Journey | Rob and Rose | Towner Jones Photography

  2. Mark B. says:

    Rosemary and Rob,

    I was thinking about you and the family because today is Christmas Day. I’m glad to hear that the surgery was successful and that things are moving in the right direction.

    Our thoughts and prayers are with all of you. May you find the New Year to be a filled with happiness.

    Mark and Laurie

  3. Candi DiMarzio says:

    Rose
    I am so sorry to hear this. You have been such a great friend to Heidi. Unfortunately there is not much Heidi can do to help you so please let me know if there is anything I can do for you and your family. If someone is going to set up meals to help you please give them my name. Keep the faith and God will pull you through it.

    Thoughts and prayers to you and your family.

    Candid DiMarzio

  4. tom shockley says:

    Rose and Bob,
    whereas we have not had much contact in recent years I have always have fond memories of our HRBC days! I am sorry to hear about your recent challenges ,but happy to see you have such a wonderful support group and that to date things are looking well!! I will keep you in my prayers !! God Bless you!!
    Tom Shockley

  5. John says:

    Rose and Rob,
    I am praying for you. “Lord I ask that you prepare the doctors. I pray they will be well rested, I pray that they will be precise and accurate during this operation, I pray for your healing power to flow through them as they remove the tumor. Lord I pray for Rose, for strength and reassurance as she waits for the surgury. I pray for a quick recovery. I pray for no complications. I pray you minimize any pain, I pray Lord I pray. Lord I pray you will hold an hug their girls. I pray that you will be glorified, and that everyone will see you in all this Lord. Lord I pray for my friend Rob. I pray you ease is concerns, I pray for peace that comes from only you Lord. Lord I pray for a successful operation. Lord I pray you poor out your love on Rose and her family. Lord I lift up Rose to you. I thank you for this Sister in Christ. Lord please take care of this precious family!

  6. Becky L. says:

    Wow, crazy story. How fortunate that your doctor pushed for the CT scan. She must have some great instincts.

    I hate the feeling when things go wrong that your body is betraying you. Just when you think you understand it.

    Thinking about you!

  7. Andrea Simpson says:

    Dear Rosemary and Rob , I was shocked as everyone else to learn about your medical problems. I definitely will be remembered you and the family during these times. I know how strong your faith is and have no doubt God will help you overcome this hurdle. Love you all. Andrea.

  8. Rebecca & Gwynn Davis says:

    Rosemary, what a shock. I am sure these past months have been very difficult for you and your family. Please know you are in our prayers and will continue to be. Your witness through sharing your ordeal is amazing and shows your strong faith. I know God will be with you and Rob and we pray He will give you a peace. Rebecca & Gwynn

  9. Charlotte Hart says:

    God bless you, Rose. You, and your family, are in my thoughts and prayers. You are so brave and strong, and your faith inspires me. November 9th is my 10 year anniversary which most certainly will bring you luck. Best wishes.

  10. Michala Sumnick (Suh) says:

    Dear Rosemary and Rob,

    Lots of prayers being sent for healing as you remove toomy from your lives. Let the love of friends and family help you through this time and know that Christ always has your hand.

    Love,
    Michala

  11. Steve Booth says:

    Rosemary and Rob, we just received word of your upcoming surgery. We join your family and countless friends in lifting you and your family in prayer. The Psalms continue to speak authentically and honestly to our human condition and our absolute need to trust God in the midst of the storms of life. Psalm 130 rings true for me. I thought you might find solace in it as well. Grateful to be part of your prayer network. Steve & Barbara

  12. Dora and Herman Mullins says:

    Dear Rosemarry,

    You as well as your family are in our prayers. We pray that on November 9, Toomy will be gone for good. We are so glad that you have such dedicated doctors.

    We were the part of the visitation team that visited your mom and dad before they joined HRBC. Give them our regards.

    With our love and prayers,
    Dora and Herman Mullins

  13. Debbie Cline says:

    RoseMary and Rob,
    I just found out about “Toomy” a couple of days ago and want you and your families to know that we are praying for you and thinking happy thoughts for you. God is good and your faith will sustain you during this difficult time. I have lost touch with your parents( Mike and Esther) but think of them often and know they will be great supporters as you go under the knife. Please take comfort and peace knowung there are alot of Christians lifting you up in prayer. with love, Debbie and Butch Cline

  14. Dora and Herman Mullins says:

    Dear Rosemary,

    You are in our prayers as well as your family. We pray that on November 9, Toomy will be gone for good. We are so thankful that you have such dedicated doctors.

    Give our regards to your mother and father. We were part of the visitation team that visited your mom amd dad before they joined HRBC.

    With our love and prayers,
    Dora and Herman Mullins

  15. Mike & Raylene says:

    Wow, Rosemary, we are as shocked as everyone else, but glad you have both a good diagnosis and prognosis. You, Rob, and the entire family are in our prayers. We will be watching and waiting for good news of the eviction!

  16. Carolyn and Marvin Gregory says:

    Rose mary and Rob,

    Just wanted you to know we are praying.
    Michelle had Gamma Knife Surgery of her brain approx. 6 years ago and is doing well due to being a melanoma patient.

    Give our love to your parents.

    Love and prayers,

    Carolyn and Marvin

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