Had the surgery to remove the tumor from my mandible yesterday. The surgery went well and they got the tumor out without any collateral damage. It looks like it is a neurofibroma, but we will not be sure until the biopsy results are back. It is heavily calcified so it may take up to 10 days. When I got back to the hotel post-surgery I went into low-grade sinus tachycardia and elevated BP, but it passed after about 4 hours on its own. No big deal, A bit sore, of course. Ice and Tylenol are my friends! I did take a dose of Tramadol for the pain, but yuck to that stuff. Tylenol works better and has fewer side effects.
Did have a bit of a glitch prior to surgery. Platelets spiked to 903 a few days prior for no apparent reason. aPTT and INR were also elevated. Retested morning of surgery and platelets had dropped down to 756 and aPTT/INR were not as elevated. Just goes to show that our platelet levels can and do cycle. It is just part of the MPN and nothing to worry about when it is not a trend. I am sure I am having some level of reactive thrombocytosis now due to the surgery. Will check on that as indicated, but again not particularly worried about it. Monitoring is all I expect to do.
Thanks to all for your support.
ps - The doc did take a pic as I requested. Don't look if it bothers you, but I think it is cool to see!
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hunter5582
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Nice to hear from you Hunter. I always look for your posts. You are an inspiration and a wonderful source of information to this group. Kind regards and best wishes on your recovery.
And I thought I was gory writing a book about burking bodies, and having a 6 foot plastic skeleton hanging around? I've had two MRI's within three days, one spinal showed that my disc's were fine, legs going numb and pain in spine, due to old age and oesteoartritis, will NOT lose the power in the legs and be in a wheelchair, celebrations all round there, even doctor a bit dewey eyed! Metal knee caps on the agenda like my brother. I can walk around again, despite the pandemic ! Second MRI last Friday, prostrate, still waiting results, couple of neurofibromas around my prostrate gland? Certainly first one was the most important, pain in right leg since neurofibroma surgery on spinal cord 23 years ago, always a good chance of losing power of both legs, having locked discs about six years ago did not help the situation? Not as medically knowledgeable as yourself, but I always found not to rely on pain killers, their side effects can be dangerous in their own way? All the very best! Stay Safe!
Those opioid pain-killers are terrible. I hate them. For me to take one means something is REALLY wrong. Most of the time the side effects and risks are worse than the pain. I did try one dose of 50mg Tramadol this time, but the Extra-Strength Tylenol worked better. Ice helps too.
I liked the idea of pickling the tumor in a mason jar one of out MPN-pals came up with, but then I would not have been able to send it to histology and do want to confirm what it is. I am 99% sure it is a neurofibroma. It was actually attached to the musculature rather than the periosteum. They had to pry it away from the mandible, but did so with no damage to the bone.
So now you know what one type of (probable) neurofibroma looks like. Hope you get your neurofibromas out ASAP. Sounds like they are really causing prostate problems, which are quite unpleasant. Wishing you relief ASAP.
That is why I posted the pic. Aside from being generally interesting, it is best to understand these things rather to hide from them. Reality is often not nearly so bad as fear and ignorance of what we are dealing with.
Hi Hunter, glad the Op has gone well and your at the other side of it. The tumour looks like it is one whole part which I'm hoping is good news for you. Interesting about ur platelets too. Fingers are crossed during ur recovery. x
Really glad to hear your surgery went well. Was thinking of you. Best wishes for a quick and pain free recovery and quick return to normal platelets etc. All the best, Fran
So glad your surgery went well -- and thanks for the photo -- very interesting. I find the more information I have, including seeing what things look like, the better I function; sounds like the same is true for you. Here's to a swift recovery!
Hi Hunter, I agree with you, picture is cool & important. So glad you come through surgery so well & that things appear good at this stage. Take it easy til you’re all rested & healed. Katie
Lol cool or not . The first thing I did was enlarge your photo . Fascinating! Glad you are ok. Interesting your platelets rose drastically prior to surgery. It has actually made me realise how blood test to blood test the readings can alter.
Nothing like a pic of someone else’s rejected surplus body part to brighten one’s waking moments. 🤣🤣 Glad it all went well and wishing you a continued speedy recovery.
Delighted to read surgery went well. I always look forward to your posts because I learn so much and am inspired by your positive attitude. All blessings for a speedy recovery.
Good to hear from you Hunter. Glad your surgery went well. Wishing you a speedy recovery. Very interesting pic by the way! Take care and look after yourself
Hope you are recovering well. Sure you are sore still but thank goodness that's over for you. I couldn't believe how large it was. Why did it get so big before they operated? Wishing you a speedy recovery. Gaithersburg x
The tumor had been growing for some time without my being aware of it. It was masked by my beard and there was no discomfort. I noticed that my front teeth had moved and the dentist found the tumor growing near those teeth. I chose to have it out, though it may not be the direct cause of the teeth moving. We will see what happens once we have the histology back and look again at the other two masses the docs found.
Oh my word ,you just had an operation yet still found the time and energy and empathy to reply to my ranting Newbie post ! Hunter,you're an inspiration , hope you get well very soon.
I am actually doing quite well in recovery. Compared to the brain surgery I did last year, this was a piece of cake. I find it helpful to reach out to others even when I am having an issue to deal with, We really are stronger together.
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