So... we got a new GP for me as the other one was ineffectual. Our dear friend was this doctor's mentor, so we started with a great recommendation from a great doctor. We went to see Dr. Rapa last week. We arrived and she had reviewed my file and already had some ideas laid out. We went straight from her office to the ENT where they shoved something up my nose to look down my throat. Yes, it was very unpleasant, made worse by having a strider during the test. (not breathing so well) So the reason for all of this, including the strider is that my vocal cords are 'paralyzed'. Andy wrote this letter to Dr. Rapa after we went to the ENT. So read away. The rest is his letter.
Dear Dr Rapa,
Thank you so much for your attention yesterday, it was exactly what I was hoping for. After months of uncertainty and frustration we finally have a reasonable and clear understanding of the cause of Rebecca's symptoms. (Rant about why someone couldn't have worked that out months ago... grrrr)
So I am wandering about the next steps but first I am going to restate my understanding of the situation so that you can correct any misunderstandings I have.
Both Rebecca's vocal cords are suffering from paralysis. While they seems to function reasonably in their 'closed' mode, for speaking and blocking random stuff falling into her lungs; they do not open for breathing. This clearly explains why Rebecca feels, as she so succinctly put it, like she has been breathing through a straw for months.
Dr Cruz offered three options for symptomatic relief; two procedures that would result in loosening the vocal cords slightly (botox or laser). These would 'probably' provide a loosening of the cords providing improved airflow for breathing but potentially effecting speech and the 'blocking' function. The third option he presented was a permanent tracheotomy; a hole at the base of the neck directly into the trachea that bypasses the cords for breathing. This was presented as 'the best' options as it doesn't compromise the vocal cords current functioning any further but provides significant airflow for breathing.
When we pressed Dr Cruz on why Rebecca's vocal cords are paralyzed he made it very clear that is not his problem. So, before we consider any of his options which seem to address symptomatic relief but does not attempt to identify the root cause; should we put some energy into identifying the root cause?
The assumption for root cause seems to be nerve pressure from tumor. I find this assumption a little unsatisfying. Given the separation of paths of the two nerves involved wouldn't it be a huge coincidence that on both sides the tumor just happened to find those nerves to lean on? Should we look for some evidence that this is the case? Presumably those nerves come back together up in the brain somewhere, is it possible that the problem is higher up? As a systems engineer I just find the possibility of 2 separate problems causing symmetrical symptoms unlikely.
This is where I particularly need\want your help. If you tell me that tumor pressure is a reasonable supposition then I will believe you. If you tell me that tracking down the root cause might be intellectually satisfying but will not open any other treatment options or otherwise effect the wider treatment plan, then I will let it go. (if for example the problem is a brain met it probably wouldn't change the vocal cord options but might help inform other decisions).
So what do you think the next steps should be?
Should we go looking for root cause or symptomatic relief?
If we go for symptomatic relief; what are your thoughts on the 3 options and which would you recommend?
Do we HAVE to do anything or can we see if the new chemo reduces tumor mass and the problem reverses itself?
Thanks SO much for indulging my desire to understand better and getting to the end of my email :-)