Every Story Matters

I suffered from seizures and migraines for about six years and never had an MRI. Just getting different medicine when the first one stopped helping or if they didn’t help. So after the years went by, I went for a second opinion. My Posterior Fossa Meningioma was found on Nov 18 th , 2016. At the time, it was small, so they placed me on a Watch & Wait for status, with yearly MRIs and visits to my Neurologist to check for any changes with the Meningioma; there was growing every year, however, not much until 2018, my Neurologist stated he couldn’t see me anymore and referred me to a Neurosurgeon.

I would also need to see an ENT surgeon due to the placement of the Meningioma, and it was aligned with my hearing. So, I met Dr. Kurshner and had a hearing test completed, and he told me what he would be doing, for he would be the first one when they cut my skull open.

During the surgery, my Neurosurgeon found that I had Hyperostosis of the bone. Hyperostosis is the excessive growth of bone. It may lead to exostosis. This is where the Meningioma was growing, and they shaved down the bone. Before the surgery, I was given an IV in my hand, and the EKG leads were placed on my chest. The Anesthesia doc, the ENT surgeon, and my Neurosurgeon all came in to talk to me for a few minutes.

Once it was time, I was taken to the operating room, and I remember it was so big, and two nurses were there getting things ready. I said to them, "wow, the room is so big and has so many instruments" they said back to me, "well, you are having brain surgery." We all chuckled a bit. That is the last thing I remember; I was on my way to Brain Surgery.

When I woke up in the Recovery room, I had three iv in total, plus an arterial line in my right wrist was a thin catheter inserted into an artery. Dr. Germanwalla also removed some of my belly fat to put in my brain and patched the hole where they removed the tumor, so I had a drainage tube.

The dressing on my head and the final IV stayed in until it was the day I was discharged from the hospital.

I stayed in the ICU for one day and then transferred to a regular room for additional four days. In 2020, it was tough because Covid was in full effect, and I could not have any visitors visit; I made many calls and Facetime with the family. I was finally able to see where they shaved my hair and where they cut me open.

My days at home recovering were hard but okay. I had to sleep in my recliner chair to keep the swelling down in my brain. However, after the first 11 days, I could not stand it anymore and sleep in my bed. I was on a high salt diet for the first week for my Neurosurgeon said it keeps the brain from swelling, and on the flip side, I take medication due to my hands and feet swelling. Dr. Germanwalla had called me to tell me it was a Grade I – Psammomapous -Fibrous Meningioma; that news was a relief.

They don’t tell you what some of the effects are after the surgery; I still suffer from migraines, I now have tinnitus which I call a hummingbird in my head, and when it rains out, I get a pressure feeling in my brain and end up with a migraine. When I am sleeping, I hear the plates and screws moving and making noise as I turn from one side to the other, and in the cold weather, my head freezes, and I feel instant pain.

Then around week twelve, I was depressed, hit the big time, crying, and didn't want to be around anyone.

The emotions of everything, the Meningioma, and all the past six years were starting to hit me, the six years of waiting and watching to have my posterior fossa meningioma removed. I found myself going to bed at seven pm and sleeping all night. This way, I didn't have to deal with anyone or my thoughts.

There was no new enhancement in the left posterior fossa at the previous tumor site. However, a new 6x5mm Left Olfactory Sulcus – Planum Sphenoidale. I am on watch & wait once again for yearly MRIs, and when this one gets larger or I have symptoms, it will be removed via my nose with an Endonasal endoscopic surgery.

He told me that this one would be more aggressive and that he was stunned that a new one was there, and he went back on my last three years of MRI, and it wasn't there.

So once again found myself positive thoughts to negative ones, trying to push the news of a new one to the back of my mind. I wonder, is it growing? How big is it now? Is it going to start having symptoms, or is it staying the same, for it is something I can look at in the mirror and see the tumor sticking out the side of my body somewhere, fore it is contained in my skull and can’t see any bulging? I have gone with all the Why Me again, and the unknown causes so much anxiety.

So, I now go daily to see what will happen to me. It isn't a great feeling to know that at any time, I could have these symptoms:

• Personality changes.
• Increased aggression and irritation.
• Weakness on the side of the body.
• Difficulty walking.
• Vision / Speech problems.

So as I closed one chapter by riding my bike from San Diego, CA to St Augustine, FL, raising over $30k for Disabled Veterans in 2018, my surgery in 2020, and 2021 cycling from Chicago to NYC, raising over $27k for Disabled Veterans.

I try to push all this new information to the back of my head and forget it until next year; it is always “Next Year.” It is much easier than done. This next chapter has me involved in a few organizations, such as Brains Get Famous and the American Brain Tumor Association, and I also have my Instagram page where I try to talk to others in the same boat as me.

I try to live each day to its fullest and help as many people as possible.