Hi, I’m Sandra,

I had my surgery in July for Squamous Cell Carcinoma. It was a big growth. I had a skin graft on the bottom of my mouth, too. I have done all of the tongue exercises to get my tongue back in place and working right. I did my exercises everyday 3or4x per day. Then, a couple of months ago it started swelling and has stayed swollen. It is sooo aggravating and inhibits me in talking and eating!

Has this happened to anyone else and, if so, what did you do about it.

This is my first post and I know I will be make posting errors. Tell me and forgive me!

Sandra

... and this is my first post, right after registering. I have a swollen tongue after having its right base removed for a small primary site (squamous cell carcinoma, HPV-related) It was robotic (Da Vinci) surgery.

In any case, I believe tongues swell up when the lymphatic fluid in them no longer has a clear path to drain, fibrous tissue or scar blocking the flow, or no gland to empty into. I have not solved the problem, and I've been told that the lymphedema is likely a lifetime condition. I come here now looking for someone who knows a good manual drainage method for the tongue.

best wishes, Jon

I hadn't thought about it being a drainage issue, and honestly it makes me feel better to think that. I know my neck and side of face still have issues, even a few years later. The part that scares me (mostly it just frustrates me, but this part really scares me) is that I now have food allergies that can be anaphylactic and I even have to carry an Epi-pen. I *need* to be able to tell if my tongue is swelling because it's just wonky or if it's part of the reaction I'm encountering when someone lies about my food (which happened on my anniversary dinner of all things, and my food allergy is NOT a hard one to control; I'm allergic to spinach, of all ridiculous things).

My speech therapist who helps with my neck massage work does have me do tongue massage work too, to keep scar tissue from continuing to form. I need to keep on top of that better ... it probably helps more with the drainage than I would have thought. I think the term she uses for my neck work is myofascial release, but I might have spelled it wrong. If you can find a therapist who specializes in this, they are worth their weight in gold.

Hi, Jon and Kristen! Sorry for the long length of time in replying.

I had not thought about lymphedema! It fills my mouth completely on the right side. I had a speech therapist who was good but didn’t tell me about massages for my tongue. My mouth is either so very dry or excessive salvia.

Surely there is some help for swollen tongues!

I am still hoping to find help for swollen tongues. I'm not entirely convinced it's lymphedema, but what else would get worse instead of better in recovering from surgery? Mine is worse than when I first posted about it.

I worked with an OT on lymphedema. She is also a CLT, certified lymphedema therapist. She gave me a few MLD exercises (manual lymphatic drainage) for my tongue, but I find it very hard to do them effectively. My hope was to find a few external manual lymphatic drainage exercises for the nodes that the tongue drains into, thinking that if those were more clear, the tongue would begin to drain on its own, perhaps through movement.

Lymphatic drainage of the tongue is very complex: I don't see how manual exercises could be very effective, especially considering how hard it is it reach in and manipulate. I can move some of my tongue through tightly closed lips, perhaps that can help with drainage. Here's a slide show of the total anatomy, slides 34 and 35 shows the lymphatic drainage.

I'm very familiar with my mouth being either too dry or too overwhelmed with secretions. I use the Biotene Dry Mouth oralbalance gel and the Biotene Dry Mouth moisturizing spray. Swishing with water, and carbonated stuff help. I especially like flavored soda water--no sugar. Probably you know all this.

Kristen, your speech pathologist might be using Myofascial Trigger Point Release Therapy for jaw and neck mobility, and to reduce pain. I'm not sure if that helps with lymphatic drainage.

best wishes, Jon

Sandra, Im sorry but I do not know what can be done about chronic swollen tongue. I wish I had some ideas to help you.


@Jon, the Biotene gel and spray do not contain the helpful ingredients like they did years ago. Unfortunately, Biotene changed its formula and removed the things that helped dry mouth patients. Unbelievable right??!!??! Now, Biotene products are just overpriced mouth rinses and other assorted things. I dont know how they can get away with still promoting their products like they actually have helpful ingredients in them... they dont! After years of searching for something that is a good replacement that will really help dry mouth sufferers replacement products are finally just emerging. Brian just put up a post about the new products, the link is below along with the original Biotene has changed link.

New Dry Mouth Products

Biotene Changed its Formula thread

Thank you Christine and Brian. I remember being vaguely suspicious in seeing the GSK mark on Biotene products (Glaxo Smith Kline)

I don't see how manual exercises could be very effective, especially considering how hard it is it reach in and manipulate. I can move some of my tongue through tightly closed lips, perhaps that can help with drainage.

Since then I have had heart surgery June 19, and had my recovery complicated by aspiration pneumonia! I made the mistake of thinking I could handle swallowing, when I first felt thirsty after surgery. I was still anesthetized, and I must have aspirated some of the ginger ale, and other items.

( if you have any swallowing issues, and are having surgery, I suggest you be considered "nothing by mouth" in recovery )

Oddly since the surgery my tongue has felt even more swollen, while the lymphedema on the right side of my neck almost disappeared. So I am still in search of good MLD techniques for the tongue and its related lymph nodes.

Being G-tube dependent is not a good thing. My PSP has suggested a Vitamix and "real food" liquified to the point that it can be pumped by tube. The pain of recovering from pneumonia with my sternum still tender has made me even less inclined to work on swallowing exercises and swallowing small amounts of real food.

thank you, Jon

If using real food instead of the formulas specially formulated for feeding tube use... be very careful and diligent about flushing the tube after "eating". There are well over 100 different kinds of formulas (mostly prescription formulas) so if one doesnt work there are other options to try. When using the tube with a feeding pump, make sure to lay, sit or sleep with your head at the bare minimum of 6" above your abdomen. If you can raise your bed or prop yourself up with pillows do your best to have an incline of at least a foot or more. When your feeding is finished, stay still for at least 30 minutes. Feeding tubes (and pumps) were NOT designed for regular blended food. The tube can break down or be damaged from using real food. Many patients also report the tub clogging from what they are using. Its also very difficult to monitor if you are getting a complete, balance diet when using real foods. Using real food can of course be done but be very aware of what can go wrong so you can correct the issue right away before it becomes a big problem and you need to have the tube replaced. Ive had that done more times than Im able to count and it is NOT a pleasant experience! I am fully awake, strapped down, laying on an xray table where the doc does the tube exchange. Ive done this so many times Ive become immune to the temporary discomfort. I do have a little lidocaine jelly at the tube site to numb it but I still can feel most of the procedure. Luckily, most of the doctors can do the swap very quickly.

If you are going to get a Vitamix blender, they are GREAT!!!! OCF has a Vitamix program that helps those OC patients who have a financial need and are permanently or very long term feeding tube users. PLEASE, consider buying the Vitamix blender from OCF... its the same price as Vitamix sets the prices for every single place that sells their blenders. You may see things like... (only a general guess for what ads say and Vitamix prices) regular price $850 but now its only $699 but the $699 is what you would pay no matter where its purchased. At least by buying it from OCF its helping fellow OC tube users.

Thank you, I did buy the Vitamix through OCF. I've had it for a week or so, but have yet to try anything.

I'm worried about the "set" used for the Kangaroo Joey enteral feeding pump. I can currently re-use it for 3 meals or so. I suspect with real food I'd have to use a new "set" with each meal, since I can't imagine an effective way to clean it out.

best wishes, Jon