I've been told by an ENT consultant, that he wants to carry out a "Rigid Pharyngoscopy and Oesophagoscopy" under general aneasthetic and that "I've told the patient about the 1 in 100 change of oesophageal perforation". He also mentioned that there's a chance I could lose my airway during such a procedure.
I understand the clear need for investigating the hypopharnx in more detail as I have some very concerning symptoms. However, I am nervous that the consultant did not take my specific risks seriously.
I'am diagnosed with Ehlers Danlos Syndrome, which is a connective tissue disorder. It has been shown to affect my oesphagus, and is also known to cause fragile tissues throughout the body that can tear easily. I cannot open my mouth that wide due to the muscles trying to hold the tendons together (didn't have a chance to tell him this). I have lived on liquids for the last 10 years due to oesophageal dysmotilty due to EDS.
The constultant was not familiar with the Ehlers Danlos condition and didn't give us much time at all to explain the issues in the throat area I have beyond that of the recent worrying symptoms (those recent new symptoms being lump in throat on right, some blood, pain on right, issues on barium swallow).
The procedure would be carried out in my small local hospital. This is another worry as I've found the smaller non-university hospitals to not have heard of EDS.
Clearly a thorough investigation is needed, but are there any other options in such circumstances. He quickly said there was not but wouldn't discuss. I would feel more confortable if he was more experienced or sympathetic to the condition which I feel puts me at further risk of preformation.
Can I ask for a second oppinion? Are there any options for me to discuss as I don't think I will get a chance to see him again before they ask me to go in.
Good luck. Let us know how it goes and fingers crossed.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
- how long does that generally take?
We are usually told 2 weeks. Often it’s longer I’m afraid.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
MRI will show a lesion at around 1 cm
If nothing is evident and you can’t accept UCLH recommendations for no further investigation ( if that’s what they say) then your only avenue is to find somebody you trust to do the scope hoping that it will find nothing and finally put your mind at rest.
I suppose the last investigation would be a PET/CT but I’ve no idea if any centre does them privately. Even then you would need a clinician’s referral
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Is that 1cm or 1mm? Would the dye not show irritation even if the legion was smaller than 1cm? Does it depend on the slices sizes of the MRi (is this something I can ask?).
Ask.
Also would the PET/CT be done before the scope thingy?
Not generally. You get a PET if cancer has already been diagnosed , especially if it’s large or they can’t find the primary but they do find it in the lymph nodes. It’s to check for possible other sites of spread. It’s an expensive individually tailored scan involving a radioactive tracer.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
