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.
Can I ask for a second oppinion
Yes. Is there an ED society who can recommend?
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
https://todaymycoffeetasteslikechristmasincostarica.com
It’s the first I’ve heard of it here. Panendoscopy and MRI plus possibly PET/CT seen the usual ones. Maybe ask on the oesophageal cancer forum?
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
https://todaymycoffeetasteslikechristmasincostarica.com
I expected quite a lot of people here to have had this procedure....is it unusual?
Ok. I have taken advice on this. Panendoscopy is a procedure under general anaesthesia to have a deeper look at the throat upper windpipe and oesophagus. Rigid endoscopes are routinely used so I guess that means that most of us who have had this procedure have indeed had what is planned for you. No clinician seems to tell us what instruments are used. Mine certainly didn’t or if they did then I forgot.
So the answer seems to be ….yes it’s usual.
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
https://todaymycoffeetasteslikechristmasincostarica.com
Macmillan has an ask the nurse section.
You could pose your question there but be mindful that they usually take a few days to reply.
https://community.macmillan.org.uk/cancer_experiences/ask_the_expert-forum/ask_a_nurse
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
https://todaymycoffeetasteslikechristmasincostarica.com
I thought MRi would show even the smallest detail, or am I wrong?
You are not. It depends on slice thickness ( images are taken in slices) Slices can be less than 1mm for brain imaging, I looked at my diagnostic scan. My tumour was 18mm and was very large on the screen so I imagine the slices around a mm.
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
https://todaymycoffeetasteslikechristmasincostarica.com
Honestly? I would go for both scan and exam under GA. If they find something on the scan you are going to have to undergo an exam for biopsy anyway.
I’d go for the MRI first.
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
https://todaymycoffeetasteslikechristmasincostarica.com
