Recovery for the surgery on the mandible continues to go well. My dentist offered to treat the incision with a low-level laser that stimulates the mitochondria to produce more ATP and speed healing. The incision opened up a bit, but it was no big deal and closed back up on its own. The docs told me and I have now learned "the mouth heals amazingly fast."
The tumor turned out to be a lipoma with osseous metaplasia. Not what I was expecting, but not a big surprise. The tumor was about 75% converted from fat cells to bone. This is not a concern as these are both mesenchymal cells and the tumor is still benign. This is now the seventh lipoma I have had removed. It appears that the NF1 may be causing lipomatosis in my case. Not a big deal as they are benign tumors, just occasionally a bit inconvenient.
My platelet levels actually dropped back down into my normal range (669) on their own after the surgery. Neutrophils are just a bit higher than normal (6.31/77.2%) but that is not a concern as I did just have surgery and it is just to be expected. Docs did a great job with minimizing bleeding and all is well with the MPN side of reaction to the surgery.
So this surgery was successful and the lipoma should not recur. We will monitor the other two masses they noted may be present in my mouth, but will do nothing about them if they are not causing a problem. Planning to go ahead with the Invisalign to get my teeth moved back where they belong. Good teeth are a good thing!
Thanks to all for your support. All the best to everyone.
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hunter5582
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Hello hunter - so good that you have had a positive outcome - very best to you + hope you get some respite now from any further invasive treatments. Anne-Marie x
So happy to hear the surgery went well. Your positive attitude is so inspiring. You have been through so much, but you still continue to educate all of us with your knowledge and positive spirit. I hope you continue to improve.
Thanks for the update, so pleased it was benign and healing going well. Understanding what is going on must be a challenge -but one you rise to. Best wishes
So pleased the outcome of the tumour removal has had a good outcome. You have certainly been through the mill. I admire your very positive outlook, a great inspiration to us all. Best wishes , Fran
Good morning hunter5582! So glad to hear the operation is done and dusted and all is well. I imagine you will have a bit of a break for all this invasion before getting your teeth realigned. Have a good rest. Maggie
Pleased your surgery went well. I have had a lipoma removed twice from my back, both ops left nasty scars but I'm no supermodel so it doesn't matter! Hope all goes well for you in the future.
Stay strong, you are in my thoughts. When I think of responding to you, just to wish you well, I cry. You know much about mental health and I am hanging on by a fine thread. Three attempts this year. Please don't comment on this. It is not due to my illness, I've supported husbands through AL Amyloidosis' and Non Hopkins Lymphoma. My MPN is lightweight to me but I do like to study it and follow the process, what can and does happen with my body. The symptom's are tough buy it is what it is. Eat vaalia yoghurt. Probiotics will help with your healing as you know and help keep MRSA and VRE at bay. With much fondness. Anna
I am a big believer in probiotics. I have to be. That last year on hydroxyurea appears to have compromised my intestinal endothelium. Spent the whole year being constipated, which had never been an issue for me. It improved after about 8 months off the HU, but has never completely returned to normal . I cycle through different probiotic supplements to diversify my microbiome and eat yogurt on a regular basis. Also make a point to eat prebiotics as well. Our microbiomes have a powerful effect on our health and get ignored way too much. Some bacteria are really our friends.
Do continue to hang in there my friend. You will be in my thoughts and prayers.
Agree with your comments . This area (gut biome) is one of the fastest areas of growth in medicine. Key is mixed diet of fibre (bran), fruit and vegetables.US diet/obesity issues largely linked to excessive consumption of sugar and highly refined foods. This you know...but your comments on HU are important and I will not take it for several reasons until facts prove otherwise.
Standard Western diet/processed foods is filled with a bunch of junk that is little more than poison. Sometimes literally. The excess refined sugars, lack of fiber, and depleted nutrition are only the tip of the iceberg. Too much of the food has toxins like pesticides and mercury, synthetic hormones, xenoestrogens, and other contaminants. While I like the occasional bit of junk food as much as the next guy, eating a steady diet of it is a terrible idea.
Do continue to be cautious about your med choices. Looking at all of the options when meds are needed and weighing the risks/benefits of each is very important. Sometimes we absolutely do need meds to help manage our MPNs, but informed choice is absolutely essential.
Hi. Congrats on this being almost over & especially your amazing attitude during all of it. I’m wondering if you’d share any information you have on why to rotate brands of probiotics, which brands are good & what prebiotics you eat. The only prebiotic I know is bananas. Thanks in advance for any information or links you can provide. And congrats again. Katie
I do not pay much attention to brand name per se, more so the the number and variety of bacteria lines in the blend. I try for as much diversity as possible. One of my go-to blends is TruFlora made by Master Supplements. This is one of the blends recommend by my Integrative Med Doc. What I think really matters is diversity in your microbiome. I also eat non-fat yogurt (brand does not really matter much - I like Siggi 0% fat - plain) and fermented foods like Kimchi and Kraut. Prebiotics are basically just high fiber foods that feed your microbiome. They are really just part of a healthy diet: oats, asparagus, onions, garlic, wheat bran, lentils-chick peas- split peas, etc. Ginger is another great addition. Dark chocolate too. I really enjoy food - I am a major "foodie." Eating healthy can also be eating delicious.
Hello Hunter! Do glad your surgery went well! I have been off the site for a few months but so glad to see you are still active and sharing so much appreciated information to us in your posts and replies. Stat well!
I know this post is a little dated...but I also get lipomas, specifically angiolipomas (only difference being presence of blood vessels in the lipoma). I had one removed from my thigh 6 years ago at the age of 24. Since then, I have grown 5-6 more in my thighs over the years.
I am somewhat convinced that my tendency to grow angiolipomas is connected to my elevated platelets. Angiolipomas are driven by the PI3CKA mutation, which affects the PK3/AKT pathway, which also influences stem cells.
It is also well-documented that lipomatosis can be associated with mutations in PTEN, one of the MPN non-driver mutations. So I believe your hunch that your NF1 mutation is causing your lipomas is very credible.
The interesting thing is that the JAK2 and NF1 mutation both increase the likelihood of various neoplasms. The "N" in MPN can cause more than too many blood cells. Lucky me - I get a double whammy! I have had a total of 7 lipomas removed. Have 2 left, but they are not causing issues so I will just leave them be.
I would not be at all surprised to find out that lipomas are more common with MPNs, though I do not know of any research to that effect. The link to NF1 is also really just pondering on my part as there is no link in the research. In my case it does seem to be familial lipomatosis as my son also experiences lipomatosis (he also has NF1). My son also has idiopathic erythrocytosis (no JAK2 mutation). My daughter also is NF1 and JAK2 positive and does have ET (likely masked PV). Genetics is both interesting and a powerful influence on our lives.
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Teeth!!!!
Update
Update on my mouth sores
How to deal with Damage from Hydroxyurea.
