After yesterday's consultation with a neurosurgeon and an ENT specialist at UT Southwestern, I have decided to take the wait and watch approach with my acoustic neuroma. Right now the plan is to do another MRI next July and check for any growth. Factors in that decision:
- the tumor is small and normally they grow at a very slow rate. There is a reasonable chance that it will not grow at all.
- no matter what treatment/approach I choose, there is no scientific reason to believe that my hearing will improve.
- in fact, I will likely lose all the hearing in my left ear eventually, regardless of what anyone does. The wait & watch approach will give me the longest possible retention of any hearing in that ear.
- my left ear has only 40% word recognition, which is below the mark of what these specialists call "serviceable" hearing. To be a bit crass, that means it ain't worth trying to save. (One of the surgical procedures would have the goal of retaining the hearing at the current level,)
- I do enjoy having a bit of hearing capability in that ear, so I would like to keep it as long as I can. Both the gamma knife and the surgical procedures would speed along or possibly complete a total hearing loss in that ear.
- frankly, I went into the appointments thinking only surgery - let's get that thing outta there while it's small! My sweet Terrie was able to hear the dox more objectively and helped me see clearly what they were recommending for me - this is what they would tell their own family, both said.
- A major factor in any surgery for me is my blood condition, called antiphospholipid syndrome. Without going into details, I have to constantly be on Warfarin (Coumadin), a blood thinner, in order to avoid fatal blood clots. That significantly complicates surgery and creates an additional risk factor for me.
So, I will work on getting used to my condition and praying that God will do something wonderful that no one expects medically. I am happy to report that, even with the slight dizziness I have, I was able to hang with my grandson, Brishen, on the roller coasters at Sea World last Friday! No dizziness at all when the ride ended! Yay! There is hope for me yet!
Thanks for the multitude of prayers that have gone up for me and Terrie! Besides outright healing, I wanted a clear message from the consultations yesterday. I believe I at least got the latter!
Prayers up!
Just before I went on vacation last week, I talked to a local friend who had an AN several years ago. After he consulted with some local dox, he was led to a specialist who practices in L.A., as in Los Angeles. My friend raved about this doc, who removed his AN via a surgical procedure called Middle Fossa. My friend is doing great and has since sent more patients to L.A. to see the same doc.
Long story short, my friend contacts the L.A. doc as soon as we hang up and the doc calls me later that same day! He asked for a copy of my MRI and proceeded to set my mind at ease, saying that since the tumor is small, I have some time to consider what to do. He said if I select the surgical route, he believes I will do very well at USC, where his clinic is located. Oh, yeah, his clinic is called the Acoustic Neuroma Clinic. He also asked me to get a "word recognition" hearing test to send to him. I overnighted the MRI and scheduled the hearing test for this coming Friday.
The doc called me again on Tuesday after viewing my MRI. Once again, he was comforting, saying that we can definitely get this thing out via Middle Fossa. After my questions to him, I know there is a 50/50 chance of maintaining my hearing where it presently is (no chance of regaining what I have lost) vs losing it altogether on the left side, a slight chance of irritating the facial nerves, a one-third chance of the tinnitus (ringing) going away (and a third staying the same, a third worsening). I can't help but believe that the sooner we get this thing out, the better my chances of it not interfering with or complicating the things above.
Prayer points: healing, of course. Also, that I am led in choosing the best doc & procedure for what I need. That God will provide all the we need for any travel and other needs. One great thing: the L.A. doc is in our healthcare network!
Prayers up!
Just confirmed my appointments with the specialists at UT Southwest in Dallas to consult about my acoustic neuroma (see yesterday's post). They had to time the visit when the neurosurgeon could be present, which limited me to a Monday. The appointments are on August 18, at 1:15 and 2:00 PM. If they have any cancellations before then, they will call.
Prayers up!
Well, it's been over a year now since I last posted. Haven't had much to relay to everyone about my health. Until now.
So, I had this MRI on Friday. A few months ago, I began to experience a significant loss of hearing in my left ear. It felt like it was stopped up, sort of like swimmer's ear. To shorten the story, I've been to 2 ENTs and that led to Friday's test. Results: acoustic neuroma. The really impressive name is vestibular schwannoma. I know - weird. Some of the explanation of a AN from the website is:
* a rare benign tumor of the balance or hearing nerves
* usually slow growing and expands at its site of origin (1.5mm/yr)
* the most common first symptom is hearing loss in the tumor ear
* treatment options are observation, surgical removal or radiation
I got a call from the doc himself later in the day on Friday after having the test. That makes things feel rather urgent. He is referring me to a specialist at Southwestern Medical Center in Dallas. I can ask all my significant questions then. I haven't heard yet when the appointment is going to be, but I thought I'd go ahead and ask for prayers.
As always, the stuff you read on the internet about these conditions can be pretty scary. One thing I do know from the doc is the nerves for the facial muscles run through the same area where the tumor is. The internet confirms this. One of the reasons for getting something done right away is to avoid some facial paralysis. I haven't felt anything yet on my face except for some itching that began a few weeks ago. I wonder if that's related to the tumor.
The tumor is still small - about a half inch, so I hope we have caught it early. I'll post more as I learn more. For now, please pray for the best treatment to be done and for God's healing power. There are some pretty scary potential side effects from going into that part of the head, so I'm praying for the most effective treatment. Chances are I will not recover any of my lost hearing and it may even get worse after surgery. I could go through some facial trauma if they have to mess with those nerves when they go in.
So, once again, prayers up!
