Hey @oct20 ,
Thanks.
Yea, the pain is improving. There are periods when, OMG, it is intense but the time between the intensities is getting longer, so I’m taking that as a good sign and my swallowing is still improving and that’s another plus.
The medicos did tell me that for an adult the procedure can be much worse than for a child as the throat structures are well established in adulthood. For a child these structures are still growing and can adapt much easier. Although the wife thinks it’s a bit like man-flu ( ‘man-flu’ is much worse than a flu a female gets (according to the man)). TSK
Ohhh that’s great.
Now, I can tell the wife I’ve got a damn good reason to carry on like a 6 yrs old
I don’t think I’d get away with it… …but I could try
I received a phone call from the neurosurgical unit of the hospital. And I’ve been trying to process and comprehend it all.
They had previously altered the settings of the shunt. It seems that if those changes had made an improvement, which they haven’t, then an alternative drain ie a craniotomy and EVT ‘may be’ of benefit. This is not the case and in the neurosurgical dr’s/surgeon’s words “Due to this the offer of surgery has been withdrawn.”
Presently, I’m in a bit of a WTH mindset. Relieved to the extreme. I can breathe again. But the wording of the statement took me aback. “OFFER” It wasn’t an offer. It was a straight out recommendation. I had personally requested the additional scans, seemingly the additional scans were the evidence they needed to say ‘No’. And yet when I made the request, I was told those scans weren’t needed. I’m confused.
It seems, the shuntogram shows that there is minimal flow via the shunt and this was why the offer was made, but as I said earlier ‘…if the fluid is draining, why have further surgery to make another drain…’ This surgeon doesn’t like shunts, hey, I’m not a fan of shunts either. But if there is no increase in ICP then an additional drain to manage ICP makes little sense. My 2nd opinion medicos agree.
Now, don’t get me wrong, I’m more than just happy it’s all been cancelled, but this flip/flopping is REALLY annoying. Feels like a coin toss “heads or tails”.
“…DON’T BE HEADS… …DON’T BE HEADS…”
The long and short of it all is… …I GOT MY WISH and avoided surgery atm… …PHEW
Thanks @Moltroub
I was going to send an update earlier, but that would not have been a good idea as my mind has been full of expletives and someone would have needed to censor my posts
ME TOO!!! And this has been part of my angst. That initial neurosurgeon made it all sound like a forgone conclusion, which it obviously is not. If they’d just come out and '… “say what you mean and mean what you say…" and not speak in ‘riddles of commitment’ it could have been much, much easier.
I’ll go and get a follow up scan in 6mths, keep an eye on it myself and if/when it changes, I’ll act from there. I am pleased I stood my ground and investigated more fully, but I shouldn’t have had to IMHO. That’s the Dr’s role. He did repeatedly state “You’re not a normal case…” which I do understand, but he should have ordered scans to get a holistic picture. Not me telling him to. Anyway… All is good.
Merl, you are always a good teacher for our community! You always remind us that we need to be active with the “medicos” and our own treatment. Thank you for that, brother!
I also think you’re correct in that your doctor should have ordered more scans without you telling him to btw.
I have developed a traditional practice of creating a written list of questions before I see my doc, and presenting them to the medical assistant who first takes my vitals prior to the doc walking in the examination room. And as I give them the list, I ask him or her to please include the document in the doctor’s notes for the appointment. The list will sometimes also include questions about additional scans or tests that I, as an informed patient, would like him to address. I found that doctors generally pay a lot more attention to yout questions if they are written and submitted to be part of the visit’s record. I have also had to change doctors, on a couple of ocassions, because they were not comfortable with the manner that I conduct myself as an informed patient. Thank you for sharing your valuable personal experiences, Merl.
( ‘man-flu’ is much worse than a flu a female gets (according to the man)). TSK 
I remember that my surgeon told me something similar, that it was worse for us grownups to have our tonsils removed.
and someone would have needed to censor my posts 