Wednesday, January 5, 2011

NIH Jan 2-7, 2011 (III)

Day 3:  Audiology, ENT and Eye Clinic

First thing this morning we saw Chris the Audiologist and he gave me Jacob's report from December 2009 and the CD he promised me that contains information about the FM system we talked about Tuesday. There are other pamphlets in the envelope, but I have not read over them yet.

Then we met with Dr. Kim, Jacob's Ear, Nose and Throat (ENT) doctor.  He reviewed Jacob's scans and audiology testing from last few days. He did an exam and asked Jacob the typical questions. The information he gave us is as follows:

Jacob's Vestibular Schwannomas (VS) have both grown and he used the word "growing". He did not give me measurements for each side. He said his method of measuring differs from the typical way and we can get those numbers from Dr. A tomorrow.

Dr. Kim said because Jacob is not suffering any hearing loss, pain, or balance problems and the tumors are not pressing on the brain yet that he does not recommend any surgery at this time. He also feels like Jacob is not a candidate for radiation for the VSs. He did recommend that Jacob try chemotherapy, calling it a "chemo protocol" to attempt to keep the tumors from getting any larger. He believes there is a trial offered at NIH that Jacob could be part of, but we will have to check with Dr. A.

I realized that I like it better when they refer to chemo as a drug trial or drug therapy.  Connotation is an amazing thing.
I asked once again what size a VS usually is when it needs to be removed, before it starts to press on the brain. Dr. Kim's answer was that everyone is different, but 3 cm is the average size. Jacob's are still under 2 cm, but the right side was 19 mm six months ago. Getting too close for my comfort and the surgery to remove the VSs will take Jacob's hearing.

He also said Jacob's facial nerve tumor on the left side has grown, but he said that it will take a long time for it to effect the facial muscles and facial paralysis takes years to occur.

Dr. Kim said the results of the audiology testing shows the left side nerve seems more effected than right, which is odd due to the right side tumor has been larger. He tried to explain to me that the left side tumor is fatter now, but I will wait to talk to Dr. A tomorrow to make more sense of it.

I am very interested to hear what Dr. A says about chemo for Jacob. He is not a believer that chemo works for NF2 patients, but he is not against Jacob trying it either. I have asked his opinion in the past and I have wondered how we will know when it is time to start the chemo. It is a huge decision. I prayed we would have more time. Jacob also has an appointment coming up with Dr. Amy Smith at UF Shands to review Jacob's scans from this week. This past July she and I discussed types of chemo she can do at Shands to try and control the growth of not only Jacob's ear nerve tumors, but also the spine. I'm a nervous wreck worrying about what Dr. A will tell me about Jacob's other brain and spinal tumors tomorrow.

Enough with the bad news and onto the good!

Next we went to the Eye clinic. Our papers said we needed to go to the 11th floor clinic, but we needed to be on the 10th floor. The doctor Jacob saw last time is no longer with the clinic. I was so excited walking into the 11th floor clinic. It had a big space to play, with lots of toys. I was completely deflated walking into 10th floor clinic. It was full of people, chairs and nothing for kids. I also encountered the first rude person of any of our visits to NIH. I would of thought he was just having a bad moment or maybe even a bad morning, but he was rude to me later in the day too, so I decided he is the only person (so far) that I don't like at any of the clinics we have visited. I realized after checking in that everyone in the 10th floor eye clinic looked miserable and it was only 10 am .

Jacob did a Goldman's Field test, got numbing drops so they could test his eye's pressure and for dryness, and he had photos of his iris taken. He did a vision screening and then had his eye dilated.

The new opthamologist/retina specialist, Dr. Bishop, did an exam of his retina, optic nerve and then sent him for more photos. He had pictures taken of his optic nerve, iris (again) and retina. They also did a laser nerve scan, which was pretty cool.

Jacob's vision has not changed in the last year!! His optic nerve meningioma appears to be stable and unchanged. Finally good news!! Jacob still has 20/63 vision with some obstructions from the tumor.

Four hours later Jacob was done!

We went to Records to request Jacob's images to take to Dr. Smith and went to the cafeteria for lunch. To my surprise they had a new vendor who had great sushi. Brie and I were happy girls eating delicious sushi. Jacob and Gavin were happy boys having pizza, again!  After we were all stuffed with yummy food we headed back down the hill to the Inn. Walking out, Jacob was blinded by the sun and had to hold onto me as a guide. Half way home Jacob says to me that he thinks they should give patients and families golf carts to drive around campus. I got so tickled thinking about Jacob blindly terrorizing the NIH campus in a golf cart. Jacob and I laughed out loud. The fresh air and a good laugh were both well past due for the day.

Gavin passed out during our walk back and took a great almost 3 hour nap. I thought I was going to love the quiet time, the alone time (the kids were doing crafts and playing games), but I didn't. Reflecting on the past few days, I sat and sobbed, my heart breaking for Jacob. Jacob came in later to check on us and sat next to me. I asked Jacob if all of this ever gets to him, if he was bothered by his appointments and all the doctors. He said to me, "No, I just zone it all out." I smiled and said back to him, "Maybe that's what I need to do." I laughed when he said he didn't think that would be a very good idea.

Wow! My son, my Jacob, is so amazing. He takes it all in stride and just lets it roll off. I want to be more like him! I love him more than any words can ever express.

All I have left to say tonight is...

My Lord, God,
Please, please, please hear my prayers!

Note:  I know I always slaughter the spelling of VS. Here is the correct spelling and an explaination of what they are.

What is a vestibular schwannoma (acoustic neuroma)?

A vestibular schwannoma (also known as acoustic neuroma, acoustic neurinoma, or acoustic neurilemoma) is a benign, usually slow-growing tumor that develops from the balance and hearing nerves supplying the inner ear. The tumor comes from an overproduction of Schwann cells--the cells that normally wrap around nerve fibers like onion skin to help support and insulate nerves. As the vestibular schwannoma grows, it presses against the hearing and balance nerves, usually causing unilateral (one-sided) or asymmetric hearing loss, tinnitus (ringing in the ear), and dizziness/loss of balance. As the tumor grows, it can interfere with the face sensation nerve (the trigeminal nerve), causing facial numbness. Vestibular schwannomas can also press on the facial nerve (for the muscles of the face) causing facial weakness or paralysis on the side of the tumor. If the tumor becomes large, it will eventually press against nearby brain structures (such as the brainstem and the cerebellum), becoming life-threatening.

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