T Minus Nine Days, But I Really Don’t Want to Count
The past couple of months have been a roller coaster of diagnoses, treatment plans and emotions. Things are now as resolved as they can be and I will be admitted to Johns Hopkins Hospital on Monday, June 20 for the removal of a benign Schwannoma in the base of my skull. The surgery will take “all day.” I will spend the next day in Intensive Care and I should be home three to five days later. Recovery is expected to take six weeks and the prognosis is for no additional long lasting deficits. That’s the short version, but I feel compelled to tell the long version.
First, the diagnosis. It seems that there are two different kinds of benign nerve tumors that occur. The first is a glomus. It is essentially a bundle of tiny blood veins that grow and surround the nerve or nerves. They are messy to remove because of the blood, but also because the nerves are entangled in the bundle.
Although a glomus was the first diagnosis, all of the experts I have seen assure me that my tumor is a Schwannoma. Essentially, it is a gelatinous mass that grows in the sheath of a nerve strand. This illustration with appropriate links shows it pretty well.
There is a group of nerves and blood vessels that come from the brain and exit the base of the skull. They pass into the neck through a small hole. My tumor is located on one of those nerves before it passes through the hole, but there is a small portion that has entered the hole. It is squishing all those nerves along with the blood vessels
That bundle includes the nerves that affect hearing, swallowing, the tongue, the vocal cords, the face and the shoulder. Interestingly, I have mild to moderate deficits in all those areas.
The location of my tumor means that tumor removal will take place through a hole to be cut through the mastoid bone behind my right ear.
With the knowledge I had after my first visit at a local, well-regarded university hospital and medical school, I began searching the Internet. Things were not good. I read case study after case study, and worked my way through massive amounts of medical jargon. I learned that the surgery would involve a neurosurgeon who would remove the tumor and an ENT surgeon who would drill the hole in my mastoid bone to access the tumor. I also learned that there were several ways to remove the tumor.
My next doctor’s visit was with a surgical ENT. He gave me facts, but really didn’t explain the full implications. He explained that they would cut the nerve that contained the tumor and then sew it back together using microsurgery to hopefully get it to eventually function again. He said the tumor was on the vestibular nerve. I would loose all hearing in my right ear and balance problems were a distinct probability. He said the surgery would be 12 to 18 hours and that recovery and physical therapy would take about 12 to 18 months.
My next visit was with the neurosurgeon who would be a part of the team. He was much less encouraging. The other nerves that surrounded the tumor would also be affected as he would have to tease them off the tumor and he added a few more expected deficits. I would have to have a feeding tube for a few weeks to six months because my ability to swallow would be affected and I would need therapy to learn to swallow again. I would have facial paralysis that would take several months of therapy to resolve. I would probably end up only being able to whisper because my vocal cords would be affected and my right shoulder would need extensive therapy. I heard two terms that really scared me, my “new normal” and “life altering.” Gone would be my days of an active life style, my ability to interact with clients via the telephone and probably my ability to travel or even eat out at a restaurant.
In the weeks before that visit, my Internet research led me to a different procedure that could drastically change the outcomes. It is called Intracapsular Enucleation (IE) and it was developed by a doctor at Vanderbilt University. I asked the surgeons about it. The neurosurgeon explained that what the ENT was proposing was total removal of the tumor. There would be complications and my life would change. However, the tumor would be gone. He suggested I seek a second opinion and continue my research.
I had learned that there are three neurosurgeons at Johns Hopkins who do the IE procedure, so I requested to be seen there. I got an appointment with one of the doctors. He was much more positive. He said there was no reason to cut the affected part of the nerve out. Instead, he would slice the sheath surrounding the nerve and tease out the tumor. He did warn that there is a good possibility that a small portion of the tumor would remain and that it might begin to grow in the future. If it does, they can use focused radiation to kill or minimize the remaining part. This seemed to be a much better option, and is what I chose. While the other nerves might be traumatized by the surgery, none would be cut or removed from the surface of the vestibular nerve and there is a very high probability that the would recover completely. This illustration shows what the procedure will look like.
We traveled to Johns Hopkins on Thursday to prepare for surgery and to meet with my surgical ENT to get the “rest of the story.” Yes, the same risks are there, but instead of being certainties, he explained that there is a 10 percent risk that I might have one of the problems expected from the other procedure. He said to expect six weeks of recovery time.
Both Ron and I are deeply religious. We believe in the power of prayer, along with being your own medical advocate. I asked for your prayers in my last post and I can say that they are working. The diagnosis is pretty much the same, but the prognosis is so very different! We have felt surrounded by the love and caring of our family and friends as we have faced the prospect of surgery. We are not there yet, so once again, please keep praying for us.
Although I will miss MacStock and we will not be traveling to New Mexico to see our family this summer, life will continue and while my hearing, choking and speech issues might not improve, there are possibilities that they might be better!
I will be in the hospital for a total of 5 to 7 days. They tell me my brain may be a little foggy for a while, but it will soon clear. I am taking my iPhone and iPad to the hospital and hopefully Ron and our family will keep you posted—and perhaps even add to this blog.
-- Pat and Ron