I've posted here before recently about my symptoms and investigations. It all came about after a barium swallow showed a possible lump on upper right swallow. This turned out to be not a lump, but other symptoms have become prevelant:
- sore on right hand side below adams apple
- some blood drops in mucus on some mornings
- soreness varies, but generally present for about 6-8 months
- soreness can radiate to right ear
- can feel like acid reflux 'cold' pain like feeling in shoulder area also
- pre-existing condition which gives me fragile tissues and inability to swallow solids (Ehlers Danlos Syndrome, no peristalsis in oesophagus)
I was examined on three occassions by different ENT's using a nasal scope. Each examination was clear. One of those was done in the local hospital, and one in the National ENT Hospital UCLH London. The London person said they would expect to see something on the nasal scope, but did an MRi with contrast to make sure. This was clear and they discharged me.
The local hospital is still pushing for a rigid endoscopy. The risks associated with this procedure scare me, as my condition, I am told, makes me more susceptible to complications during a genreal aneasthetic and also preforation of the throat. I saw the local ENT who would be doing the procedure on a private appointment to try to underline the risks (no one seems familiar with my condition), but he said it should be done, even though he doesn't think its anything sinister based on my previous examinations.
I live my life clinging on to the little swallowing I have left (due to my pre-exisiting condition). I live on liquids, for the past 10 years, which we have to blend. I"ve been fending off a feeding tube for that time. I'm worried that this procedure could put that in danger. And yet my soreness continues (allbeit a little less than it was).
The ENT's surgeons secretary want me to call her to talk about dates for the procedure.
Im stuck between a rock and a hard place. HELP!
