Hi everyone. Has anyone had both sides removed who feel they had a successful surgery have flare ups? I had both sides removed last year externally by Dr Cognetti. I am doing so well so thankful to be better than every once in a while it feels like the bone is back in there on one of the sides. I get some pain and tingling or twitching in my face. It usually subsides after a few days. Anyone have this happen or know what causes this? Dr Cognetti said he never had a patients grow back. Wonder if scar tissue is causing this or if i should get another scan?
I had both sides done on 8/29/19. One ear is still numb (90%) the other is only 20%. The Dr.also mentioned “ghosting”. That is when your brain still has the same symptoms even though they really don’t exist. I still have some of that. I don’t think your bone grows back. Hopefully this helps .
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Was your other ear also totally numb or just the 20%. I have numbness for about 3 weeks now and Dr says it will go away over time.
I do have brief spells of pain back, but it usually comes on before I get a virus, maybe going into inflammation mode sets off old pathways, as Ilovemaui mentioned? It could be scar tissue otherwise- have you been masaging? There have been some discussions recently about it, so you can search for that. There have also been discussions about cold laser therapy for scar tissue you could have a look at. Hope it does settle…it’s quite soon for re-growth but it can happen.
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Lovely to hear from you, was the surgery really hard having both sides at once? Has it helped your ES symptoms?
I have watched a lecture about ghosting- the theory is that it can take a while for the nerves to grow or use new pathways & still cause pain for a while.
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I had significant numbness around my ears after both surgeries; it has gradually improved over time, (took a year to get where it is now) only have small patches now, so I’m sure yours will go with time.
No, both ears were numb and part of my jaw. The Dr. said it could take up to a year. He also said if it is not gone within a year it would probably be numb forever.
Ilovemaui2000 - I still have a little numbness along my jawline after 4 years. It’s a small price to pay for having no more ES pain. It did take close to a year for my ES symptoms to totally go away. They came & went over that time but finally are gone for the most part. As Jules noted in another post, sometimes we get “ghost” pains while the nerves are regrowing & even after recovery is full. I do occasionally get a pain in my my neck or at the back of my skull where I had ES symptoms, but it doesn’t stay very long.
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Hi Cupcake,
I didn’t mention medications. I have tried gabapentin and amitriptyline post surgery. The later one helped relax my breathing but not thrilled with the side effects of dry mouth and constipation. Gabapentin made me groggy.
Hang in there and stay safe.
BG