HI I am 7 weeks post op. I am a previously fit and healthy 53 year old woman diagnosed as T3N1M0 in February after all my obvious symptoms completely failed to alert both 2 NHS GP's and one rather useless gastroenterologist for 6 months. I have my fair share of issues post operatively : dumping, pneumonia (first in one lung then the other), incessant coughing up phlegm, constant post nasal drip, gas, agonising pain in my back and front and back ribs and one dilation (lasted a week) and needing my next one and having lost my voice which is now a breathy rasp. I had what's called the Mckeon (not Ivor Lewis) as I had a neck join and minimally invasive surgery that took 12 hours. because unfortunately during the surgery for my squamous cell tumour (8 rounds of chemo and 25 chemoradiotherapies) in the mid third of my oesophagus they discovered a nodule on the outside of my oesophagus above the radiation field which was found to be cancerous despite 2 ct scans showing 'clear'. This necessitated changing my join from the chest to going in through the neck which meant the surgeon touched my laryngeal nerve hence the voice loss. My join is unusually high at 17cm and I only have about an inch left of my oesophagus. So no peristalsis whatsoever - I can't even burp. All my tumour site and 31 lymph nodes were clear as well as the surgical margins but cancer was also found in the wall in my nerve cells. But what's really bothering me and what I need help with is the fact that I feel like I have a tennis ball stuck in my throat and that I am being choked/strangled since I woke up from the surgery. This is known as globus sensation or globus pharyngeus and seems to be more common amongst thyroidectomy patients or people with hashimto, etc. It is driving me mad and my muscles on the left side of my neck below my jaw also feel very tight and the surgeon explained that the platysmal bands are cut which seems contrary to it feeling tightened. Has anyone had this disturbing and distressing sensation after their surgery? In addition, I feel like I that my swallow muscles take strain trying to 'push' hard to swallow - it's really hard work. Constantly feels as if my food is just about to get stuck in my throat. I am desperate to know if it will eventually go away? My surgeon just completely ignores my requests for an answer or suggestion regarding this. I am at a loss - I can't really talk to anyone as talking is very exhausting and difficult. It is very isolating and lonely.
Anyone? This feeling is incessant - I am aware of and bothered by it all day long ...
Blossomstix
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Blossomstix
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This is very difficult and I sympathise with your situation. The higher up the joint, the more difficult things can be. It is possible that this might be the effect of nerve damage as the surgeon will have needed to cut sections of the vagus nerve. Nerve damage can rectify itself but it is not a certain process with any definite timescale. There may be some extra scar tissue, as some people develop larger scars than others. You may indeed need further stretches.
It might be that with no peristalsis you have to rely on gravity, so make sure that you keep an erect posture when eating. Eat little and often. Concentrate on a soft and liquid diet that does not involve too much sugar or sweetening additives. 'Slimfast' might be a good thing to try to avoid dumping, notwithstanding that it sounds completely illogical. Try and keep your mouth and throat moist and try doses of honey. Regaining your saliva function and maintaining mouth / dental hygiene is also important.
If food gets stuck, you might try massaging your chest area, or even dropping on to your heels.
This is not meant to sound patronising, but you may find some kind of relaxation therapy helpful. Eventually, your body will find some way of getting used to this new rearrangement of your digestive tract. You also need to try and catch up mentally and emotionally with all you have been through, so it might be helpful to talk to a cancer counsellor. It is surprising how many people find this helpful, even if it is only going along for once or twice.
There might be something that breathing or voice training might be able to achieve.
It does indeed sound as if people who have had neck / throat surgery might be more familiar with some of these distressing side effects.
I do not know for certain whether or not this will improve on its own, but my guess is that the more you can relax (easier said than done) the better the chances will be. If you can concentrate on taking in a steady amount of nutrition, trying to achieve lots of rest, and giving yourself a treat with some sort of relaxation therapy, my guess is that things will improve. As you feel able, try and persist with gentle, progressive exercise, using a physiotherapist if you can.
It will feel that you have been through an awful, bleak experience, but as long as you feel generally better this week than you did last week, the periodic downturns will not be compromising your gradual return to better health and strength.
I had lost my voice after my esophagectomy, and was referred to an ENT (Ear, Nose & Throat specialist). My left vocal cord had been paralyzed from the surgery and I was scheduled for a "gel" injection into the vocal cord. The first one helped, somewhat, but ended up needing 2nd one. The 2nd time the ENT Dr. "over injected" gel and it worked much better. Besides being able to talk, without the breathiness it also helped me not to aspirate, which had been an ongoing issue, usually when drinking fluids.
I also ended up having a swallow study done several months after surgery, and it was documented that swallowing food was a slower process than it should be. A subsequent dilation of the esophagus seemed to help, and also relieved the symptom of feeling like food was backed up into the esophagus when I ate. During the dilation surgery I was also given an injection of Botox into the pylorus muscle to help with, I believe, pushing the food down more normally.
Sometimes it does seem as if the treatment is worse than the disease and it is easy to get discouraged. It has helped me to meet with other medical specialists, besides the surgeon, as then the "team" can work together to address the issues. You have my sympathy as the whole recovery process seems to be a long process.
Thanks for your reply. I am going for a further dilation next week as mine was done 2 1/2 weeks ago and only helped for a week and I am scheduled to see a laryngologist for my paralysed vocal chords ((he also fortuitously happens to be a swallow expert). Any swallowing is hard work for me as is speaking - and it is worse at night as I think it is so tiring which is when the closed throat sensation gets really bad. As I have such a high join I have also lost part of my swallow reflex.
Your are so right in saying to meet with other specialists which I am driving as neither my oncologist nor my surgeon seems to take any responsibility for my care. My GP practice is hopeless - they did not even know I had cancer as they neglected to read the reports and I can barely get an appointment with them. It is a merry go round of multiple doctors. I ended up having private chemo and radiation through my medical insurance but there is no patient management - you just pay for the treatments. The only counselling I was offered was £350 per hour which I cannot afford. My NHS surgeon is far away and although fantastic before the surgery shows no interest in my post surgical issues.
You are very wise in saying the treatment and recovery feels worse than the disease. Right now with the pain, the difficulties eating, lost voice, and horrendous throat sensation I feel I do not have any quality of life. If you cannot eat or communicate - there is not much point.
I appreciate the time it has taken you to respond - thank you
Sorry for the late reply. I cannot offer any advice on your condition, but it does seem that you have not received the best of care from the NHS since your surgery. If you are not happy about this, there are a number of organisations that you can speak to, including your local Healthwatch. In addition, both your local GP and Clinical Commissioning Group should have Patient Forums and your local Strategic Clinical Network should have a Cancer Patient Partnership Group. Contact details for all of these organisations should be available online, or by speaking to your CNS or local Macmillan advice centre. It may not help you, but it may help others.
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