ENT Appointment

Today I went to see an ENT consultant. I had a list for all three aspects of Ear Nose and Throat, but my GP had only mentioned my voice problems, although the ENT consultant, a gruff-manored man who confirmed my ears were full of wax and would need laser treatment, but that I'd need to be referred back to him for that specifically, and that I'd need to use olive oil to soften the wax in advance. My nose showed as 'broken' on an MRI and he used the 'blocked' nasal cavity to insert the tube to examine my throat after first spraying a numbing agent up my nose, which tasted incredibly bitter. My throat showed no vocal cord abnormalities, but apparently there was acid reflux, which surprised me as I don't eat late, and don't have indigestion or heart-burn. The specialist said I would need an examination of my oesophogus and upper GI tract to explore that further. He also said that I would need specialist speech therapy. He didn't offer any other help or advice. We discussed that all of the throat area is full of connective tissue and because of my EDS might be impacting on my voice. No great surprises there. I am really saddened because my voice used to be as clear as as bell. It is horrible sounding like I have laryngitis all the time. He asked if I talked a lot. I said that I didn't. No real answers. I can't see how speech therapy will help with a very hoarse voice, when I am not talking a lot, but I suppose I will have to see and try it. 

On Monday, my respiratory physiotherapist gave up on me and said that she could offer no more help with the fact I can't fully blow into my spirometer or move the blue ball, which is the heaviest. I feel that doors are closing on me. I have a respiratory consultant appointment on 21-4-22, and then the TOS expert physio in Bristol on 5-5-22 and my TOS consultant on 25-5-22. I don't seem to be getting a lot of joy from anywhere.

Big 2022 Update and ENT Symptoms

 On 13th April I am going to see an ENT surgeon. I have had voice hoarseness for over a year now, I constantly hear my own heartrate pulsing in my ears. In addition, my ears are regularly blocked up and have been syringed many times. My nose is apparently broken, from a childhood incidents. But the main problem is the voice. My throat is sore and my voice, which used to be as clear as a bell is husky and broken at many sound levels. I also have a vallicular cyst that was reported on a thoracic MRI Scan.This is nothing whatsoever to do with TOS - but it is the only place I can park this posting, as I don't want yet another blog. 

Here is a picture, although not a very good one, of the back of my throat. I have no idea what will be found, but I do need this problem to be resolved as soon as possible. I will update this blog again after the appointment. At least my nose was clean! 

TOS Update

Things have been bad for a long-time. I have constant chest pain all around my collar bones, side of neck, jaw, and into my chest up until where just before breast tissue begins. It feels like there is an elephant's foot stamped onto my chest, constantly, and inhalation is limited, proven by respiratory tests in hospital. I am failing badly on my 'Incentive Inspirometer' and have a check-up tomorrow (2 weeks delayed) with the respiratory physiotherapist, where I will be telling her that things have not improved whatsoever, and if anything, have become worse. My SATS remain good, but it doesn't feel like that to me - it feels like there is not enough air in my lungs, or perhaps they are just too full of air that cannot escape. The problem, apprently is with inhalation, not exhalation. 

I have radiating left arm pain from the neck all the way down the back of the left arm into the ulnal nerve root, with pins and needles and eventually numbness in the left hand. The right hand is symptomatic on action and if elevation is attempted. This is why tasks like cleaning windows, changing my bed, reaching for things in high cupboards, washing and drying my hair are impossible tasks. Typing is starting to be a problem for some fingers - the middle ones of my right-hand - possible overuse. 

My hands are permanently cold, and I think I would fail both the Roos Test and 3 Minute test, based on the fact I can't do them. Pre-surgery, I had no chest pain. Now I do. 

I am seeing the lovely Rob, expert TOS Physio in Bristol on 4-5-22 - almost 3 years since I saw him last. I will be discussing redo surgery on the left-side only. 

I had some injections into my shoulders in December 2021 by Ultrasound at hospital here in London. Nothing was found in terms of trauma or damage to the tendons. The injection might have improved things a bit on the right, but the left has continued to be painful, with minor relief only. I would definitely be open to repeat surgery, but my blasted EDS makes this risky. However, we also know that I have incredibly tight Pec Minor, although it would be too dangerous to consider removing these, because I'd get even less stability in the chest area. 

At the end of May - 25-5-22, I go back to Mr G in Wolverhampton. We are hoping Rob will have done his report by then. 

I have also heard from Neurosugery. Apparently, despite my recent sciatica flare-up requiring hospital management, they are reverting to nerve block injections (which I've had before) from a discectomy, which sounded far more suitable, although it is surgery, and therefore risky. I don't know which way to turn at the moment. I am constantly fatigued. Very brain-fogged. I am struggling to write. I am hating writing my books. I used to enjoy writing - this sort of thing is OK - but anything more technical is a real challenge.