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ears and flares

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Ellen, What a wonderful sister you are. Am I understanding that you AND your sister have RP?

Most of my ear problems are inner ear. And way back in the beginning it sounded like I had either to ocean or cast-ta-nets going all the time. The doctors would take a peek inside the ear, however they could only see the nice pink tissue and the ear "looked" fine. But the pain was still there.

I was told that it was tinnititis and that there was not a thing they could do to help it.

However they where wrong. The effects of tintitis can be greatly reduced by reducing you salt intake, stopping caffeine and sugars.

In my case, it was not tinntiitis, the damage was caused by a lesion that is growing in the nerve bundle of the middle ear. This nerve is now totally severed and non repairable. At the present time the pain, from this flare is mounting. And is definitely worse when I lay down. I have my bed propped up so that my head is a full 6 inches higher then my feet. This really helps once you get used to the angle.

The only way to detect this type of lesion is through a MRI. As it is a soft tissue imagining test.

One of the concerns when the middle ear and inner ears are involved is that the facial nerve and trigminal nerve are inter twined with the hearing mechanisms. And they run the risk of being damaged along with the ear. When these nerves are inflamed the pain can be totally unbelievable. And very far reaching. Some of these problems will include nausea, headaches, vision distortion, balance problems, deafness and blindness.

Has your sister seen and otolarygnologist yet? This is another class of ENT's and they have more training in middle and inner ear diseases then a regular ENT.

I hope this helps.

R.

Dear R, Hello, my name is Ellen and I'm new to the group. My sister has RP as well . She is having a great deal of trouble with her ears. She said not only is it painful but when she lies down she feels like she can hear the running though her head. Do you or anyone else with RP who have inner ear problems have this symptom? She will be joining the group soon and can explain it better. If you can be of any help please write

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Hello ,

Thankyou for the message about the ear on behalf of my sister. Yes

she and I have RP. I have had it for many years. She may have had it for some

time before getting a dianosis last year. She too is joining the group and

has read your note. I think it will help her when she goes to the doctors.

Thankyou,

Ellen

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