Who has had a full lingual tonsillectomy/biopsy performed and could you tell me of any of your complications and how long was your recover? Was it bad?

Well portland72 I am not sure what you mean when you say LINGUAL when followed by tonsillectomy. But when I had my ND the tonsil on the left side came out too. My surgery was on 9/11 and 10 days post surgery I thought I was doing well, didn't seem to hurt so bad. But and im sure you didn't want to see the but. But, I had a severe bleed that sent me back to the ER in an ambulance. The bleed was from the tonsil bed. So they took me to the OR to coterize the wound. kept me overnite then sent me home. So I had to start the healing process over again. being much more carful about over doing it. Now don't freak out too much because my chance of bleeding is higher than yours. Unless you happen to have low platelets as I do. I have heard that bleeding occurs in about 1 in 30 adults who have their tonsils removed. And now about 9 days after the bleed, the numbness from the ND is wearing off and it hurts badly. I got a hold of my doctor and he readily gave me fenytenal patches. about the strongest take home opiates that you can get. Now im not saying that you will hurt this bad as we are all different. And I am surly not saying to ask for the pain patch unless you are very opiate tolerant. But don't be tough and suffer in pain, as being in pain is a not good for the healing process. And it may effect also how much you eat. And as others will tell you as they told me when healing you should eat 2500 calories a day and at least 48 oz of water to avoid dehydration. So best of luck with your upcoming treatment. Shawn U.

Portland, I found this post on here from a member who had similar CT results as you and I have had(mild asymmetrical swelling in the BOT), though his actually showed a mass and some reactive nodes, whereas mine didn't. He also finally had another biopsy much like the one you are having and his came back as squamous papilloma, which is a benign condition. Perhaps you can ask your ENT about it. Here is the thread
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=83300&page=1

Sunderwood,
How did you over do it? Activity, eating, or working? Also, was it palatine tonsils or lingual tonsils on the actual tongue?

I was thinking that I could clean house a little, and had just taken pain meds. started lifting things, forgot for a second. and that was all it took. Now mind you that I have a low platelet count to start with. So my risk of bleeding is higher. My tounge is intact. they took the tonsil only as far as I know. Hope this helps. I have a lot to learn. Shawn U.

Hi Portland, did you have the biopsy? When will you get your results? Hope you are doing well.

Shane,
I had my lingual tonsil removed on Wed. I also has the tip of my hyoid bone removed and some lymph nodes. I haven't heard from pathology yet though. I'm praying that the hyoid bone is causing pain, but I can't find anywhere that says it will cause severe pain in the tongue. Although, I'm still praying. They found the hyoid higher Cornu was farther back than normal and I have pain when turning head. Only time will tell now. I'm in severe pain from these surgeries. Just trying to think positive right now.

Please let us know what the path report says. Hope you are able to manage your pain. Nobody should have to ever be in pain like that! If you dont have pain meds, call the doc right away and get them to give you a prescription right away. Its Friday and you dont want to be hurting all weekend.

Best wishes!

Just what Christine said, I my pain regimen was not nearly what it should have been. I emailed my team and explained to them. And now I can deal with every thing so much better. It took the big guns to do it but I am not worrying about that now.(Fentnyl patches).If I have to wean off then that means that I must be doing much better! Shawn u.

**pathology is in** It's all good news. Seems the hyoid has been the problems the entire time.

Thank you all so much who helped me though this ordeal. I can't tell you how special most of you have been. You will always have a place in my heart and be on my mind.

Once again, thank you! This will always be a board I check back on and see how everyone is doing!

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.

[quote=Shane's] Also surprised it never showed on a CT. [/quote]

My point as well. 25 doctors in approximately 8 months, tests galore and no one noticed? There's just a lot that doesn't add up here.

BUT... it's not cancer!

"T"

Shane, it did show up on the CT scan, but radiologist missed it first go round. He said they don't see this problem often. It was only when I started telling him my symptoms did he find this and reported it to the surgeon. This is very uncommon to say the least. I don't think they fixed it, because I still have pain when turning my neck. I'm ready for it to be healed, so we can get it hopefully fixed.

It's actually the greater cornu of the Hyoid Bone that they clipped off.

Have a good day!

I'm not a doctor or radiologist, but I do feel they don't look at the entire picture when making a diagnosis. They briefly look at scans and it could have easily been missed. I told the radiologist my symptoms and ask him to please review my images again. He did and found it immediately.

I decided to post here as my case is kind of identical. Pain in the lingual tonsils. Lots of ENT visits, and finally, meet the head of oral cancer surgery in UCLA, who told me that my hyioid bone is protruding and causing pain and even a hard surface feeling when touched on the area of my lingual tonsils.. My lingual tissue is large due to reflux. I was also told this is rare, and that usually happens to people who protrude their tongue so far, you can see their epiglottis.

The only reason I put this here is for the future, if one has asymmetrical lingual tonsil, and pain, this could be an alternative. I spend 4 months of testing.