Labyrynthectomy Recovery. Slow or Normal???
Posted , 3 users are following.
Hi all,
I know patients often come on forums when they are in need or have negative stories to tell, which is completely understandable, especially in our time of need, with these cruel vestibular symptoms that nobody else can 'see'.
I'm really looking for some positive responses if you can help me?
I had a transmastoid Labyrinthectomy 16 Days ago. 4 days in hospital afterwards then home. To say progress is slow is an understatement, I'm terrible, left the house just once two days ago for an assisted walk, about 300 meters, can't describe how strange and out of body that experience was!!!
Has anybody had, or know of anyone who has had this operation? Am I being impatient?? Just worried, I'm self employed and need to get back to work ASAP.
I know it can take longer in older patients but I am only 41.
Looking forward to hopefully some positive advice or stories X
Jason.
0 likes, 3 replies
lily65668 Jay1806
Posted
Hi Jay,
Sorry to hear you're feeling so rough. I've never had a labyrinthectomy so can't speak from experience, but have had two bouts of BPPV in my life so I know just what vertigo makes you feel like.
I'm a former nurse - general/neuro, not specialist ENT - but I did have to look after quite a few labyrinthectomy patients in my time. This procedure was more common back in the day, before some of the less drastic methods available today were invented. In those days it was more of a first than a last resort.
I can only say that advice to patients in my day was to keep taking anti-emetics for at least a month after surgery. I therefore suspect 16 days may be a bit optimistic. However, there are probably people in here who know more about it than me, and may have the procedure themselves more recently.
You don't say whether or not you've started physiotherapy yet. This is an essential part of recovery.
And yes, you're quite right about only the worst affected being on the forum. I'm on several forums on this site, and I always notice that too. Very sensible of you to recognise that fact, as it can prevent you from getting panic-stricken after hearing the occasional horror story.
I hope you'll soon be feeling better.
Jay1806 lily65668
Posted
Lily I often see your advice on this forum, you were obviously the right person to be a nurse, caring considerate and helpful, and I thank you for your advice.
I was shown very basic exercises by a physiotherapist, about 2 minutes of her time, but I suppose I haven't done much of this since to be fair.
Thank you again Lily, and if you come across any positive recovery stories I would appreciate the link!
Jason x
lily65668 Jay1806
Posted
Aha! I suspect you're in the UK, where the health service has deteriorated a lot from my day (60s/70s). Not that it was all that good even then. A couple of minutes with a physio after labyrinthectomy is disgraceful.
Is there any possibility you could pressure your GP into referring to a balance or vertigo clinic in your area? Most major hospitals have one.
Failing that - and I'm very afraid it will fail - I'd advise trying to find a specialist vestibular therapist and investing in a couple of private sessions if you can afford it. I think it would pay dividends. But it has to be one who specialises in vestibular/balance work. All physios get basic training in that area but the ones who specialise are better placed to help you. I was cured of my recent attack of BPPV by a vestibular physio in just a few minutes, after an ENT doctor I saw wasn't interested in it. Unfortunately, I no longer live in the UK (well... fortunately for me!) so I can't pass on the details.
And thank you for your kind words. That was very thoughtful of you at a time when I know you're feeling grim.