Dysphagia following TORS and neck dissection. Is it forever?

bayareabiggie

Was diagnosed with Squamous Cell Carcinoma with occult primary. Surgeon explained that performing TORS procedure combined with neck dissection could help locate the primary and provide pathology details on the cancer and to what extent radiation treatment would be needed, if at all. Good news - the TORS procedure did allow for the primary to be found. Right side of neck on base of tongue - less than 2 centimiters. The surgery was done last Wednesday, May 24, and the neck dissection details, lymph node pathology still coming. The main issues I am having are from the TORS and Neck dissection procedures themselves. During the combined procedure the surgeon created a fistula between the neck and mouth - essentially a hole between neck and mouth. I've read this can happen more frequently when the two procedures are combined. I woke up from the procedure with a feeding tube and a a drain from the neck dissection. During recovery at the hospital I was able to choke down a few ice chips, however, now 5 days from the surgery date and no longer at the hospital I have complete dysphagia and aspirate and choke on everything I swallow  (even my own mucos). I've heard similar stories from peoiple going through radiation but none for TORS/neck dissection procedures. The procedures left some pretty broad areas of numbness - including right neck, upper right chest, right shoulder, upper right back. Functionaly these areas are fine - just numb. I'm wondering if the surgeon "stetched" or even severed some nerves completely during the operation. I will see him on Wesnesday to hopefully get more information but has anyone gone through something similar? If so, how long did your dysphagia last? Did it go away? What steps did you take to fix the problem such as meeting with a Speech Language Therapist? Not being able to swallow is a real misery and now I have to worry about things like aspriaational pneumonia. I know my surgery was only 5 days ago but pray to good this is a short term issue!!

Josephwc

Not the TORS but much the same

I didn't have the TORS procedure but I did have surgery to remove a tumor on my tongue and left side disection (57 nodes removed). I woke with lots of pain, extremely hard to swallow, numbness and all the same as you mentioned. I remember being scared and vulnerable. For me it seemed the world was flipped upside down. I am a little over a year out and things are much better. I listened to everything my surgeon told me to do. I tried to excercise as much as possible and to continue working on swallowing. The pain, tears, anger, all emotions rushed right to the surface and I felt down all the time but I continued to fight. Slowly at first , I noticed very little changes but they were there. Recovery is a slow process. I recommend asking all kinds of questions, take someone you trust to every appointment and listen to them and your surgeon. I do hope your recovery will soon start showing more progress. Take good care.

bayareabiggie

thanks for the feedback

The TORS procedure was recomended because it's less invasive with faster recovery times than open surgery. I remember reading one story where the patient said he was eating hamburgers a week after his TORS procedure. I suppose you can find testimonials on all sides of the spectrum but suspect what you went through is similar to what I will be facing. At least I know I'm not alone and there are other brave souls like you who have marched before, fought and not given up. How long were you on the feeding tube? Just curious.

HelenBack

Curious

Hi bayareabiggie, I'm in the Bay Area too! East Bay! My husband had TORS and a neck dissection at Stanford but ultimately had his radiation and chemo at UCSF. I remember hearing about the potential for that complication but I don't recall anyone on here having it. Maybe someone will chime in or at least, I expect you will get answers on Weds. I'm curious, did you wake up with a PEG or nasal feeding tube? Normally, you have the nasal one which is removed before you leave the hospital, but did they go ahead and install a PEG because of the fistual complication? 

I'm sorry to be just curious without any advice, but perhaps along the way, I may have something useful to say.

In any case, welcome! This is the place for great advice and support from wonderful survivors!

Helen

 

bayareabiggie

Hi Helen

Always nice to meet a fellow Bay Arean (if that's a word) even under such circumstances. I woke up with an NG tube, not PEG. I, too, was expecting to have the feeding tube removed upon discharge but since I could not swallow clear liquids they left it in. I had the TORS/Neck Dissection procedure performed in Kaiser Sacramento as that is the closest (only?) place near Bay Area that Kaiser has a robot. Since coming home on Saturday I've already had to go to Redwood City ER twice to have replacement tubes put in for various reasons. Not a fun experince afer all of the surgery I just underwent. Dont think the fistula is related to the feeding tube unless the nerve which helps control swallowing was some how affected/damaged. Then again some swallowing issues may happen to some people who undergo TORS/Neck Dissection simultaneously but takes a little more time to correct. I'm only 5 days post-surgery afterall. Well, that's what I'm hoping for at any rate!  Just dreaming for the day when I can have a cool glass of iced tea again! Any other thoughts or feedback are certainly welcome! 

Josephwc

No feeding tube

I had no feeding tube and in the end I wish I had. I lost a tremendous amount of weight but still fought on and almost made it to the finish line. on the last two days of treatment I was hospitalized and wheeled to radiation for the final treatments. It truly was the hardest thing I ever had to do but I made it. I work as an international teacher and opted for surgery and radiation in India. Ended up being very lucky to have found the most wonderful surgeon who had training in both the U.S.A. and India as well. Survived on water, oatmeal, and tea in those final days. Everything burnt to taste and felt like cardboard. Once the radiation was finished the initial burns quickly healed and I just struggled to find foods that I could eat. I tried everything (vegetarian) and found sugar free puddings, sugarfree tapioca, bland soups, etc... and lots of water did the trick. I hope never to live those days again. 

 

I support you in everyway I can! Keep your head up and know that it will get better.

 

Grandmax4

more than I thought

November 2, 2011, I had surgery, radical neck dissection, to remove my  epiglottis. I'm assuming Tors is the same as di vinci robot? Anyway, to make a long, difficult recovery, short. I was the same, unable to swallow anything and went home after 8 days with a nasal feeding tube. I had the tube until mid December and it was removed. I ended up in the hospital on New Years Eve, with aspiration pneumonia. After having a barrium xray, it was discovered I was swallowing incorrectly, thus began speech therepy, and exercises. Today, 5 years, 6 months out, I feel good, I can eat anything, my speech is clear and can be loud. I was blessed that my nodes were clear and no chemo or radiation was needed.  Your day of having a cool glass of ice tea is coming, just do whatever they tell you to do, ask for a barium xray , it will tell if you're asperating..good luck, it will get better..my surgery was done by my expert team of doctors at The James, Ohio State Waxner Medical Center

caregiver wife

Dysphagia

There are treatment options, exercises, for this.  My husband went to a speech therapist that taylored an exercise program just for him.  Best wishes for your recovery.

Crystal

HelenBack

 Bay Arean is definitely a

 Bay Arean is definitely a word! Sounds like you are having a rough start! Hopefully your pathology results will cut you a break in the chemo/rad treatment department, but even if you have to do the full treatment, perhaps this early issue won't be a factor with the rest of it. 

My husband had surgery, chemo and rads and is really back to normal now, so it is possible. 

Stick around here for great advice and support!

Good luck tomorrow!

Weathering

If they touched a nerve then

If they touched a nerve then the healing time can vary greatly - it could be a few days or 6+ months.

I had 39 lymph nodes removed and a submandibular gland on Feb 9th. The nerve to my shoulder (accessory nerve to trapezius muscle) healed within a week. The hypoglossal nerve to my tongue has nearly healed as of now (May 31), so it took quite a long time.

I have to agree with what some others have said. The healing is month-by-month and tge best time to look back will be at the 1-year anniversary.