We have the surgery to remove the mass on my mandible scheduled for July 13. Will be done at Johns Hopkins Hospital where my MPN Specialist and NF Specialists are based. I actually have two docs involved, one otolaryngologist and one maxillofacial surgeon involved. It appears that the tumor may be easier to get out than originally anticipated. Should be a pretty straightforward affair. The docs will be careful to protect the mental nerve that is adjacent to the tumor, which is the main risk if this surgery. I do not have much angst about this surgery. After brain and heart surgeries, this should be no big deal.
I did just have a phlebotomy after a year without needing one. My HCT finally crept back up to 44.1 so we went ahead and did it. As usual, no big deal. I will see what the labs look like right before the surgery. I did have to get a COVID swab test (negative). Will get another right before the surgery.
We will be watching how my body reacts after the surgery. Will have a lab about 10 days later. Am anticipating some mild reactive thrombocytosis, but it may have already settled back down by then. Will monitor as needed.
I m looking forward to getting this over with and finding out what the tumor really is. I still think it is an ossifying periosteal neurofibroma, but only time will tell. I am going to have the doc take a picture of it as it is too fascinating to not see it. Would prefer to really see it, but likely not practical. Got to watch most of my heart surgery (catheter ablation) on the monitor since I was conscious. That was really cool to watch.
Next it will be on the the knee surgery. Going to give my body time to heal up before I tackle that one.
Will let you all know how it goes after I am out of surgery. All the best to everyone.
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hunter5582
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You are absolutely the toughest one! And I love your attitude of looking at the situation you are in ........ an academic detached studied approach rather than an emotional approach ......... This approach is the one I have decided to emulate . May you sail over this small bump smoothly ! I say small , because I know of the way bigger issues that you have triumphed over
You like myself have a morbid sense of humour, I have been writing a book for ten years on the lives of two Irish serial murderers, I even have a plastic life size copy of one behind me, [called William]. Maybe get a copy of removal of my benign tumours on my prostrate glands, unfortunately any MRI's showing my 'lump' about the"size of a walnut" was lost in 1997 [MRI at that time too new in production?] Maybe my surgeon from that time has it hanging it on his wall somewhere? Certainly I promised my surgeon in 2012 a signed copy of my finished book! Stay Safe.
The very best of luck . You have been through so much and have a great attitude in spite of it . You are an inspiration to me and the rest of those on this journey.
Just out of curiosity. You had mentioned you had adverse reaction to Hydrea. Could you explain what they were? Maybe I’m having the same difficulty. Thanks
Side effects started with constipation. It got steadily worse over time. Turns out that HU can compromise your intestinal endothelium. It took months after discontinuing to return to almost normal (still not totally normal). Next up was mouth ulcers. After 20 years with no canker sores they came back. Also just had plain old ulcers - holes in the inside of my cheeks. This was happening at at 500mg/day. Even when I cut back from this dose, the problems persisted. The canker sores have continued, but not as frequently. Next up was an apparent case of Thrush. We treated that, but the discoloration of the tongue did not go away. The surface of my tongue was solid white - looked like snow. There is a condition called leukoplakia, which is exactly what it looked like. This was going on while I was titrating down to every other day and finally discontinued altogether. The surface of my tongue never returned completely to normal. Now have a condition called geographic tongue. It is benign and no pain or anything - just a change in the surface of the tongue.
So nothing too horrible, but enough that I would not take HU ever again. The MPN Specialist I saw does not favor its use (separate from my own issues with it). Dr. Spivak was concerned about the mutagenic potential of HU amongst other things. Part of my concern is that I was having toxic effects even at a very low dose. The toxicity would have been much worse and potentially more damaging if I had continued at the higher doses.
Some people take HU and never seem to have a problem with it. I am not one of those. Given how much better some of our other options look, I am definitely going to make a different choice when it is time for me to resume a medication.
Wow!! Nope, nothing anything even remotely like that. I’m so sorry it’s been rough on you. Thanks you for sharing that info. I do appreciate it. ♥️ Love
Wishing you every success with your upcoming surgery Hunter.
All the best and I wish you a speedy recovery Hunter. You are always so helpful and an inspiration to all. Look forward to the post op update and good news.
Greetings from Bahrain in the Middle East, Hunter! Wishing you well for your surgery and praying for a speedy recovery. You are an inspiration and absolutely knowledgeable. Take care and God bless
Wishing you every success for your surgery hunter and hoping that the outcome of the tumour is as you suspect. I salute your mindfulness and practical approach to your health; a big deal that you approach so positivity.
You will be included in our thoughts on the 13th (my father in law's 90th birthday & my daughter's first day at school in 4 months).
Keep us posted on how you are. Sending best wishes from the UK.
All the best with the surgery. What a brilliant attitude. I can quite understand you wanting to see a picture of the mass and see it on its way. I wish you a speedy recovery.
You could try bringing a full pickling jar for the tumour, and tell them you have cleared a special space for it on the mantelpiece ........lol, how can they refuse??? It is your tumour after all....... 😉,
Seriously, will be sending you positive vibes, and thinking of you on the 13th. This too shall pass xx
Hunter you are amazing. Project managing your own body. Hey I can do better than a glance at a screen...! Docs did a DVD made of my gall bladder extraction via keyhole! Not a bestseller unfortunately...Good luck. Never met anyone embracing his health issues like you.
Holding many good thoughts for you--that everythingl goes well. Thank you for your very insightful and informative posts. Please let us know how you are doing, and may you have the very best outcome.
Good luck Hunter when I first came onto this page thread you were so nice and you are always helpful with the absolute best advice good luck to you on the 13th I'm sure everything will be fine. I too have had knee surgery arthroscopic though not a total knee replacement if you have any questions I'd be happy to help you with that ;and recently I was told they may have to shave my mandibles down. I'm a massive nighttime grinder I have had a mouth guard for 25 years. my most recent one looks like something a boxer would wear going into the ring. I was told by the dentist that people that grind usually have problems with their mandibles. Can't stop grinding so o well . I also have huge canker sores on the side of my gums which is from cheek/gum biting; a horrible habit I've had since I was 15 and have been cheek biting for 30 years. I am proud to say I broke the habit almost a year ago, thank God before covid came around. The insides of my mouth actually looked like Fringe I was told by the dentist please bite your nails instead this is terrible you've got to stop this. So if I can break a 30-year habit I'm sure your surgery will go very well on the 13th. Best of luck
Will be holding you in thought on Monday and sending positive vibes from across the water Hunter, king of warriors! Maireann an duine ar aoibhneas croí, agus is fad saoil dó an t-áthas 💚
Thank you my friend. Gladness of heart is a great gift and one that can indeed carry you through challenging times. It is certainly enhanced by having such wonderful friends like yourself and those we find in this forum.
A neurofibroma is a type of benign tumor of the nerves. It is related to a another genetic condition, Neurofibromatosis Type 1. NF1 is something you are born with. It can cause a number of symptoms, that include neurofibromas and other types of tumors (like the brain tumor I had). Periosteal = originates in the periosteum - the membrane that surrounds bone. Ossifying = calcifying. So if the tumor is what we think it is, it started as a neurofibroma in the nerves that supply the periosteum on my mandible, then over time it has calcified. The most common location for all forms of ossifying fibromas = the mandible.
We do not really know what it is, though it is thought likely to be benign. Because it is so heavily calcified, it will probable take a couple of weeks to biopsy it after it is removed. Time will tell what it is.
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