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.
Thanks Dani. That was what my wife suggested too at the same time. Ultimately we will have to choose one hospital ofcourse, but I want to have the scan results first. Likelihood is it will be UCLH. The happy complication will be if the London scans are clear!
Good luck. Let us know how it goes and fingers crossed.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
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