KerriLRV

Back in April of 2011 my husband(the handsome guy in the picture) had a bicycle accident that involved hitting his head. We were in Florida on Spring Break with our 3 children and 3 other families. The accident happened 2 days before we were supposed to drive back to Michigan. I knew he had gotten hurt from the bicycle accident but did not know he hit his head. We drove home from Florida without incidence. A few days after we were home he complained of being dizzy. I thought maybe he had an ear infection or something along those lines. He was concerned enough that he called his doctor. He told the doctor that he was dizzy and had hit his head on spring break. The doctor suggested that he has a CT scan to rule in/out a concussion. He had it scheduled on Friday the same week. By the time Friday rolled around the dizzy spells had diminished. He thought about just not showing up for the CT scan. But he is an overly cautious person with his health and decided to just have it done.
Thank God he did.
The CT scan found that he had a tumor in the base of his skull. They made him stay for a MRI. The MRI showed the same thing. They were concerned that the tumor was pressing on his spinal fluid and wanted him admitted into the hospital immediately. He basically said no. He had friends from CA in town and was not going to stay in the hospital. He had no symptoms that would make him feel he needed to stay. And he was scared out of his mind to have the "weekend neurosurgeon" working on him.

So the next week we met with our local neurosurgeon (in Grand Rapids MI)to read the results of the MRI. He told us he did indeed have a tumor and had no idea what type it was. He referred us to the skull based surgeon in his group. We had a meeting with him and he named a couple of tumor names and told it was a slow growing tumor that should come out when it was convenient for our family. We really did not feel comfortable with him or the other surgeons. The skull based surgeon was only on the job for 2 1/2 years.
We decided to try and get into the University of Michigan for our second opinion. We finally got an appointment in June. This doctor diagnosed the tumor as a Chondrocarsonoma. His second guess was a Chordoma but really thought it was a Chonrocarsonoma. We were devastated.

After some friends had learned of our vastly different diagnosis' thought we should try and get into the Cleveland Clinic for another opinion. We got in almost immediately. We met with the head of neuro surgery and the head of skull based surgery. They reviewed the MRI's and did not think he could name the tumor because it really did not have positive characteristics of any certain tumor. He said he was going to call it a mengioma. We left relieved because we had heard the same thing in our home town GR.

We schedule the surgery with Dr. Joung Lee. We liked his approach to the surgery and thought he was the best choice.

We waited almost 6 weeks for the surgery with optimism. The surgery took almost 5 hours. The doctor called us on the phone to tell me how the surgery went. He said he thought he got all of the tumor that he could see and would have a MRI to confirm that in the morning. He also told us that the pathology report came back as a Chordoma. After we realized what we were in for, we were again, devastated. The best news that they could tell us is that he got 100% of the tumor out.

So we are about 2 1/2 weeks out from surgery. He is still on steroids but not any pain meds. They think he was having a reaction to the "material" that they used to cover his brain after surgery. We are hoping to be off those in a few more days. Now that he is up and feeling better the reality of the diagnosis is hitting home for the both of us.
I thankfully found this website and am hoping my husband will join also when he is ready to.
I am hoping that we both can find support through others dealing with Chordoma.