Just Curious...

[Frustrated822]

Hello all.. I suffered a ruptured brain aneurysm at the age of 6 - was in a coma and paralyzed for three months.. Eventually the paralysis turned into right sided weakness that I leaened to live with hut never stop me.. That is until now - at the age of 41 when my life came to a screeching halt (about three years ago actually).. My problem has become my digestive tract - they are finding that the right side of my esophagus (android entire digestive system) are partially paralyzed.. Despite the doctors seeing this on all of the tests, the doctors (specialists from all over) agree that this has happened before and that it is an effect of the aneurysm yet claim that it is not written in a textbook as a disorder..

I have had a few doctors who have been willing to express that this is an area of medicine that is not well documented.. The reason being, is that they say most AVMZ patients from the 1980's survived this long.. I guess, that is a logical response.. I am curious as to whether others are experiencing similar issues as I am...

[cat3]

Could you say how this has affected you ?

I have problems swallowing and occasionally swallow prematurely whilst eating causing much coughing & spluttering. It was explained to me at the time of my SAH that this is a common after-effect and there were other patients who had to be supervised at meal times by nursing staff.

Also, my ex-husband who suffered a SAH two years ago and is confined to bed/wheelchair, cannot swallow at all and has to receive nutrition by PEG.

Perhaps your problem affects you in a different way ??

Cat x

[Hidden in reply to cat3]

Cat: I get that, have to concentrate as I eat/swallow but sometimes I forget and sometimes little bits get caught in throat: nuts, oats if big flakes, bits of apple, cornflakes if too flat and floppy, sometimes tablets if I don't crunch them = can feel them stuck, awful.

But my throat was badly injured during bungled op, SO sore after, clicked when I swallowed and flareups for over a year before (in desperation coz GPs ignored and hospital lied = said nothing went wrong) I wet out of area to A&E and AT LAST = a real doctor looked down my throat and explained why it clicked and hurt so bad. He said so infected and possibly ulcerated but he didn't say WHICH cartilage was broken when he said that was why it clicked when I swallowed. Just got very short course of antibiotics and sent home.

Then barium swallow (had to hassle for this) but doctors SO horribly nasty and then NO report in medical notes, and think maybe barium not best idea when throat damaged/infected?

Then silly 'ENT doctor' and 'all normal' he said when obviously NOT. Dumped then and NO follow-up. Told GP after got told truth, was SO angry coz he'd ignored, made out I was imagining it for ages then when I PUSHED to get it looked at he SO unhelpful and wrote letter referral to another hospital (not one who did the damage) but told them stuff I didn't want said and he never asked ME plus he 'forgot' not to mention the really important stuff. Q: who TOLD him to do that and WHY did he obey when he knew what he was doing was WRONG?

[cat3 in reply to Hidden]

Yes Muddled, for me it's when I'm chewing food and not ready to swallow but, without warning, I do a sudden swallowing action. Because I'm unprepared and not in control, the food often goes into my windpipe and it's pretty scary at times.

Just one more thing to contend with ! xx

[Kirk5w7 in reply to cat3]

Hi Janet here I have problems sometimes swallowing and if I speak for too long my voice starts to go.

They had to watch me in the hospital, eat a dry biscuit before they would take me off peg feeding to check I could swallow ok.

The loss of my voice I put down to having had a tracheostomy but I suppose it could all be connected, depends on where the brain is injured I suppose xx

Take care xx

[cat3 in reply to Kirk5w7]

I never understood the tracheostomy connection after an SAH Janet, but I'd be interested to hear about it. There were a couple of ladies in my ward with them and I didn't like to ask at the time, but I've often wondered.

I always assumed they were performed owing to a blockage in the oesophagus ; I never actually understood Geoff's either but assumed it was all part of his complications after a catastrophic SAH.

Let me know won't you when there's news about Jenny ?

Love Eileen xxx