Well, you earn an A+ for effort and tenacity for dogging this issue. But you get an F that it was the wrong tree.

Congrats on avoiding the cancer survivor path. Best to you Portland!

Im so happy you do not have oral cancer!!!! What a horrible path you went thru before you finally got a definitive answer to what was wrong. I commend you for being such a strong advocate for yourself and not just letting things slide. It must have been so frustrating to be in pain and have problems but no diagnosis. Congrats on not just being cancer free but also on getting to the bottom of your problem. Now I hope your situation is easily cured.

Good luck with everything!!!!

Portland,

I'm sure glad it isn't cancer and that you found an answer for the pain you've been having.

How do they treat the problem? Do you require any other surgeries? I'm hoping you will be pain free soon!

[quote=portland72]I had my lingual tonsil removed on Wed. I also has the tip of my hyoid bone removed and some lymph nodes.[/quote]

Dang! So they changed the surgery from Tuesday to Wednesday, ended up doing TORS and a neck dissection to remove lymph nodes and the tip of the thyroid bone too? Holy Mackeral dude! 25 docs, CAT and PET scans, palatine and lingual tonsillectomies and they finally figured it out. To top it off you traveled from Arkansas to UAB in Alabama to have all this done? More power to ya. You have to be the most persistent self advocate I've ever seen! I had two tonsillectomies and a neck dissection and I'm still feeling the consequences. At least you won't be going through treatment.

Kudos for being so persistent! Glad to hear all is well and that it's not cancer! What was the diagnosis?

Make sure to keep an eye on the dysplasia.

Good Luck!

"T"

Susan,
We won't know how to treat the hyoid bone, until I have completely recovered from base of tongue resection that they did for biopsy. We will know more when everything is healed. They took a little over a inch of the greater cornu and hopefully that will be all that is needed. I'm very happy that there is no cancer, because it's been quite the journey. I knew I was in terrible pain and have had many to believe it was in my head. I'm ashamed to say that a couple people on this site were not very nice about my persistence and questions. Literally, they had no idea how this site has helped me cope and educated me on the big "C" I believe that knowledge made my Doctors pay more attention to my condition. Thank you for being so kind.

"T"
Pain will drive you into being persistent and a self-advocate for yourself. No, I don't suppose I have cancer, but it was just as likely and quite frankly not as rare as the problem they say I have. It has been quite a scary journey. Not knowing where your pain is coming from can absolutely make your mind wander. I was scared and there were only 2 or 3 other things that it could have been.

Anyway, best of luck to you in your recovery!

It must have been a huge surprise to go in for a lingual tonsil biopsy and awaken to find out they did a neck dissection. To do so without having a definitive cancer diagnosis is something I've not heard of and quite frankly sounds a bit risky and irresponsible.

You would have thought with all the doctors visits, tests, x-rays, scans and prior surgery, something would have shown up to warrant such serious surgery and it would have been discussed with you prior to going under the knife. In my case as well as many here, a FNAB of a suspicious lymph node, lesion or area was done. Only after a positive diagnosis would surgery be considered and in many cases, especially with BOT OC, chemo/rads were used to treat the cancer and surgery wasn't performed.

A neck dissection is a serious and complicated operation which can cause complications such as nerve damage and swallowing issues (which I suffer from) as well as other long term ramifications. What type did they do? I've not heard of what you described concerning a thyroid bone. How would that be the cause the symptoms you had? What was the actual diagnosis?

It's a shame you had to undergo such an invasive procedure when all prior testing showed you not to have cancer. It just seems rather odd but perhaps it's due to a lack of information and a few inconsistencies in your posts.

Again, congrats on this not being cancer. Good Luck!

"T"
I wasn't surprised by the neck dissection. In order to cut the top off the HYOID bone they had to cut in my neck. While they were in there, they had to remove lymph nodes to get the tip of hyoid bone which has elongated and supposedly what's been causing my grief. They had do get lymph nodes out of their way, so no harm done in sending them do parhology.

The Hyoid bone has elongated and was 1 mm from my cervical spine and was also puncturing into my throat. This is most certainly what has been causing my pain.

"T" it's the Hyoid bone not the thyroid. It makes perfect sense.

Did they say what might have caused the elongation? Can't find much on the internet about it. Also surprised it never showed on a CT.