Rigid Pharyngoscopy and Oesophagoscopy

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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. We are trying to delay the local hospital exam under GA and do the London MRi first, as you suggest. Realise I might end up doing both, but if something shows on the MRi, then London will want to do the exam under GA, and wife feels more comfortable it being done at the national ENT hospital, if that's the case.

  • I agree. Stick with that plan and good luck. Hope you get sorted soon 

    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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  • Local hospital sent a letter saying that they have booked a pro-op for this monday for Rigid Pharyngoscopy. I've not told them I'm getting an MRi done on Friday in London and want to await the results. Not sure what to say to put them off for a week whilst the London consultant gets MRi results.Don't want to mess them around but they don't seem interested in the hightened risk associated with my condition.

  • Will the London hospital doing the MRI continue any treatment if it is required? If so then abandon the other? Is this London hospital aware of your other appointment? 

    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 Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Neither are currently aware. I guess they will be soon as both are writing to GP office. I get the sense that London don't care what else is going on, as they discovered the 'lump', they are doing their investigations. I did tell them someone else had a look, but they weren't that bothered. Its a logistical nightmare being 3 hours away, but family seem to think they are more expert and used to the procedures down there than in our smallish local hospital.

  • Can you say which London hospital? 

    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 Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • UCLH discovered lump, referred me to Royal National ENT and Eastman Dental Hospital which I think is still within UCLH.

  • Well stick with UCLH. 
    It would be useful having a visual exam without having to wait 2+ weeks for scan results but if you don’t trust them then it’s a difficult decision. 

    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 Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Its really difficult to think straight. I'm concerned about the increased risk of the procedure, and the lack of understanding that there is an increased risk, locally. I'm also worried that the hospitals will all get angry with me and discharge me!

    I think the scan results would be sooner that 2 weeks as it looks like UCLH move really fast. They wanted me in on Tuesday for MRi initially, when it was only ordered by consultant the day before, when we saw her. I've had to delay that until Friday to get required bloods done.

    I guess we'll have to try to delay local hospital until we know the scan results then decide which course to take. I think the rigid endoscopy will then be what both will want to do, unless scan is clear ofcourse, which is the hope.

  • I'm also worried that the hospitals will all get angry with me and discharge me!

    No that won’t happen. Delay the scope. Tell them you have a cold 

    But to my mind if UCLH will do one anyway why book two? 

    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 Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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