Summary
Hey folks. An update today - met with the radiation doctor to obtain the alternate POV (vs the surgery approach). I told the doc I was hoping he could talk me out of the surgery in favor of radiation
. FYI this doctor was clear that he generally preferred radiation for treatments, however after discussing with me my situation, he agreed that surgery was the better option. I was able to talk philosophically with this doctor, which I appreciated very much. He presented my with an objective argument, for an against, and below were the key variables that would better suggest surgery as the option. This is what I had thought originally and I'm glad the reasoning was consistent.
Why, for MY PERSONAL (and rare) circumstances, that Surgery seems to be the better approach
This was based on two key reasons (summarized below).
1.
My vestibular imbalance (lowered quality of life) as key "driver" in my decision making, as opposed to hearing loss being the driver. He indicated that because my hearing is relatively intact, and that it's my balance that is "the problem", it would make sense to go with the surgery as that is more conducive to resolving the issue.
2.
My age (ie, I'm a younger patient)
The rationale is that since I'm much younger (I'm 44), it would seem a more "conclusive" treatment might be best. Conclusive in the fact that the surgery is intended to REMOVE the tumor, as opposed to radiation which is not conclusive in that respect. Since I'm a younger patient, I have more "living years" ahead of me that seem to highlight more the need for conclusiveness in my treatment option. If I went with radiation, I would have that much more uncertainty spread over a much longer period of "living years". In contrast, if I were much older (say 72), then clearly radiation might be the better option. I would have much less "living years" and also I would probably be less physically receptive to surgery.
But here's a wrench that might make watch-and-see a better approach
He also mentioned he had one patient who was in similar circumstances, and after taking a steroid treatment, the apparent inflammation of the vestibular nerve was reduced such that his vestibular symptoms were eliminated, and has been so for 9 months as of date. So, before I opt for the surgery, I'm going to see if I can benefit from this week long steroid treatment to resolve the only issue that brought this whole thing to the surface: my balance. If my balance can be given back to me, then there is no reason to commit to surgery now but rather to enter the watch and wait mode ..... is the new approach I'm considering. I consider this due to an assessment of risk and timing .... the risks can be managed, and the timing is basically later rather than sooner, depending on triggers that will / may eventually surface and dictate I have surgery.
TRIGGERS THAT COULD MOVE ME FROM WATCH-AND-WAIT TO SURGERY
a- Loss of hearing: if the steroids work, then there's no reason to "rush" into surgery, is where I'm landing now. Basically, with the balance problem solved, it would have been as if I never had a problem .... would have never gotten the MRI. So, watch and wait would seem appropriate. If I then begin, at some later time, to experience hearing loss, that would trigger me to consider that surgery is now worth revisiting. This all assumes I aim to preserve my hearing via surgery. It can also be argued that WITH surgery, I accelerate the possibility of hearing loss. So is it better to initiate that possibility with surgery, or with no surgery but through the progression of the tumor if left alone (assuming its progression does, in fact, impact my hearing in 1, 2, 5 years?)
b- Size of tumor: Obviously I'll be monitoring the toomah and of course IF .... and only IF .... it reaches a dangerous size, would that trigger revisiting the surgery. For sure I would need it. But until then .... why would I .... if I have my balance, and I have my hearing .... or even if I'm willing to lose my hearing because of the tumor OVER TIME .... vs. risk losing it sooner with the surgery.
BTW the doc said that my balance issues should not be getting any worse over time .... that what I experience now is probably the worst of it assuming I entered the watch and wait mode ....
SUMMARY OF DECISION TREE / THOUGHT PROCESS
Anyways, not sure if I've articulated this thought process clearly enough, but the key decision points I think are:
See if steroids solve my balance problem.
- If not, then plan for surgery
- If so, then enter watch and wait mode (hearing loss and size of tumor as "triggers")
>> If hearing starts to go over time (within the next 1, 5, or 10 years ..... no more?)
>> >> Decide if I want to TRY TO preserve it via surgery but risk losing it at that time
>> >> or decide if I want to just let it go over time, and risk losing it that way
>> If size of toomah is such that it is dangerous, then get surgery
