Thank you, heidemt; that is very reassuring. I try to remind myself about it only being six weeks out but get impatient.
Kelx said:
Why have you had so many?? That doesn't sound promising! I just want one and be done! Painful enough! Did they take it down from the base of the skull?
heidemt said:
Hi Winterinmn,
I've had a bunch of Eagles surgeries and have had some kind of nerve issues after all of them I think. Like droopy lip, numbness and nerve pain on one side of my jaw and face, not being able to eat on one side and things like that. They mostly resolve in about 2-3 months. So I would say don't be too worried about what's happening. All kinds of nerves are involved and they take their own sweet time healing. The fact that they are partially working is a very good sign. I think it's just going to take some time. Six weeks out after surgery really isn't all that long, so I think there is still lots of healing going on.
I've had 5 surgeries. I had Eagles on both sides and the first surgery on each side didn't get enough out. I had a revision surgery on my right side and had to have two revisions on my left side to get the styloid taken completely out.
Ohh ok. I’m going to tell them to take it right out. I think it’s useless for them too take only a portion out, just for the bone too keep growing back
Just for clarification, my styloids didn't grow back. It's that they were causing damage at shorter lengths than the standard thinking about styloids. On my left side, I was having pain from a 2 cm. styloid, which is unusual.
Unfortunately because it's so rare they don't realise what they're supposed to do!! Some doctors think that it's okay to just trim the styloids back to the 'average' length, but don't realise that it can be the angle it's grown at causing the problems...
I have written recently about how I cannot talk; I sound like one with a cleft palette.
Yesterday I saw the speech therapist and will see her next week two times. My issue is the Velum. From what I am hearing, it should be closing and mine is just hanging there. Everything is nasally and food (sounds gross) and drink can come out of my nose. Because of this, I cannot use certain nasal meds I need because it all goes down my throat... cannot sleep in my bed, and the worst is talking to people.
Speech lady will talk with my GP about doing some barium test to see exactly what's happening as I swallow.
This will be the first step, then there are other options. Found this link last night.
Are they thinking that the nerve might have been damaged by surgery? Could it improve with time, or is it too early to say? Hope that things improve, thinking of you.
I don't think anyone knows. At my last visit with Dr. Garvis/surgeon, he had said he'd never seen this before with this type of surgery. There was no problem with the left side and was fully recovered at 3 weeks. Doc had said that he had to go deeper on this one, so no one knows. Right now, the speech therapist wants me to do this 'over-gulping'/swallowing, consciously, many times a day. Just sit still, relax, and over-swallow; not easy.
On the link I just sent, it mentions near the end about this -Velum - Velopharyngeal Insufficienciey, and relates it to removing the tonsils, etc. Doing both sides intraorally, the tonsils were removed.
I was wondering if anyone else has had the problem with the Velum?
And... i still stand: I would do this all over again... and I have complete trust in the work that Dr. G. did. I felt his work was superb. We know whenever we have something done, there is always that slight risk of something going wrong.
It's funny but I see the 'real' work was already done (by having the two surgeries) and that this velum issue is a minor inconvenience and just something I need to take care of.
Thanks for asking.
Jules said:
Are they thinking that the nerve might have been damaged by surgery? Could it improve with time, or is it too early to say? Hope that things improve, thinking of you.