Follow-up with the Neurosurgeon

December 14, 2016

Dear Friend,

Thank you for detouring along with me on this brain tumor surgery process. Just a little more than month ago, I was diagnosed. Now, I am approaching my third week of recovery after my surgery. Today was another milestone in this process as I had my follow-up consultation with the neurosurgeon.

This was the first time I was coherently able to converse with the surgeon and have some questions answered. Several of these included details of the tumor/ mass, procedure, and the journey back to complete health again.

I knew a while ago the mass was considered to be an epidermoid, which is less than 1% of brain tumors. This type of tumor is loosely considered a tumor and is likened closer to a birth defect, so it is benign and unresponsive to chemotherapy and radiation. I learned that 3-5 weeks after conception the cells that form the brain and nervous system started differentiating from the skin cells. Evidently in my case, I had some of the skin cells became trapped in the back part of my brain where the spinal fluid is made and flows. I was even more fortunate that less than 25% of these tumors like mine developed in the back region of a person’s head. This made for a much simpler surgery than most (4-5 hours), although more painful during recovery due to such movement of the neck muscles.

Just like our external skin that is constantly replenishing itself, the epidermoid cells inside of my head were doing the same. This mass grew around everything inside my skull, wrapping itself around critical nerves, pressing my spinal cord flat and squeezing my cerebellum half out of the area it was supposed to possess. After a period of 40 years, this slow growing nuisance grew to a size that started causing noticeable symptoms. I was fortunate my main symptoms included only having more frequent off-balance spells and minor reoccurring earaches. I had also written off stray symptoms of worsening eye sight and a marked difference in my hearing ability. Some cases are found after several years of migraine headaches, hydrocephalus, seizures or aneurysms. I would take dizzy over pain any day and am very thankful it was found before it got to those other degrees of severity.

The surgeon was able to clarify some details of the procedure as well. I started hearing little snippets from other professionals I have been seeing post-op, and was not clear as to what they were referring to. He clarified my surgery details and stated it was almost a spine surgery as it involved the first vertebra and area around it as well. They did end up making a new hole in the underside of the skull, where it does not come into contact with the actual back side of my head. To reach that area however, they had to move all of those muscles surrounding and connecting to the underside of my skull. This is where the swelling and a lot of the pain is coming from now. When they were finished they added tiny titanium plates with screws to ensure no mobility once the original skull piece was replaced.

Inside my skull, they were able to remove 95% of the mass. They used a microscope and watched carefully as they approached the sensitive nerve areas. Through out the surgery, they also monitored the nerves to help identify those areas. Undetectable in the post-operative MRI, a thin layer still exists around the cerebellum, brain stem and other sensitive areas. The primary section they had to leave was attached to the brain stem itself. When asked what nerves it was triggering, he responded it was the swallowing, pallet, and tongue nerves. That could explain, in addition to the tube down my throat during surgery, why I had such a difficult time swallowing for several days afterwards. Fortunately, that is behind me and I am fine in that respect. He did say he hoped a little more would have been resected, but it was not worth the risk. I appreciated his safe judgement.

The surgeon was very happy with how the surgery came out overall. I knew going into this he was not going to be very aggressive and take overwhelming risks to remove everything since it was benign. That would prove itself to be overly risky to my post-operative health. I am thankful I am considered fully functioning, especially when I was told of some very common outcomes and know I how close I came to that point. He told some had to have a tracheotomy, a feeding tube, or have their face muscles drooping. Permanent hearing loss and sight issues were very real risks as well. The surgeon had every intention on me walking out of the hospital fully functioning afterwards and he did it. Success in his mind. I only pray this will not grow back within my lifetime and have to go through this again, despite the probability down the road. It is only a matter of when, to which could be 10 to 40 years.

With the surgery behind me now, I press onward towards full recovery. I have been able to shampoo my hair and shower 3 days since the surgery, which is when I started becoming alert more anyway. I have a 10lb. lifting limit for the next 3 months. I also have to avoid bending down, I must squat for anything low. I am now at a point where I can now go into pools and hot tubs with no concern, but no jerking like rollercoasters for at least 3 more months. I am well past the nervous first days of brain bleeding, infections, and spinal fluid leaking possibilities. The stitches are out and look good still. The neurosurgeon gave the green light medically for our family to resume traveling again. He said if something happened on the road, I could just give them a call and most likely be resolved with that.

The largest limiting factor now is pain management. I not only have the back of the neck muscle pain, but as time goes on, the interior side of my skull is having more and more pain as well. This pain ranges from shooting pain from my jaw to my temple, to sinus-like pain. Sometimes a dull headache exists in the front of my head, other times in the entire back side. Ear aches still seem to come out of no where as well. When discussing this with them today, they were kind of surprised as this does not normally occur. Some of this pain could have resulted from the neck muscles spasms. Other pain could have been from being on maximum dosages of various pain medications, both narcotic and over the counter. I am hoping with the new prescription of a steroid for the next week, I will be able to kick this pain once and for all.

In addition to the pain management, I have some physical therapy in the up-coming weeks. These are focused on my balance, vision, and head pain. I am seeing a physical therapist that does the traditional therapy, but craniosacral therapy as well. In my research of the craniosacral therapy, many places wrote it off as pseudoscience and a quackery. I figured I would go into this with an open mind and see what I think later. After all, chiropractors were considered quacks when I was a child. As an adult I believe there is a legitimate place for their work. I was impressed at my visit with her as she pinpointed a few pain areas I had not mentioned to her previously. I am willing to see this through further, especially since this therapy is designed to help with head pain issues and with the spinal fluid being tampered with. However, I will listen to the neurosurgeon to let the neck itself heal naturally and not try to push it with exercises from therapy. No neck pain is where I will stand with the therapist.

With this all being said, I was able to once again have many questions answered by the neurosurgeon and am happy with the prognosis. He said I was healing extremely well and was impressed with my progress. Now with the surgeon’s blessing for travel, I only need pain control taken care of, and then finish up with my physical therapy. One down, two to go. I am hoping shortly after Christmas I will be ready once more. Until then, your prayers make a difference and I must remain patient until that day comes.

Until we meet again,
Regina

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