NF2_Crew Response to Bluediver

[Guest guest]

Hi Beck! If you read the note I just sent to Vicki, you'll know a little more about how my stuff started. After the first year and the hearing was gone on the left, my neurosurgeon here in Olympia said he wouldn't touch me again --(the one on the right was then visible on the MRI's), and he wanted me to see someone more specialized. An ear doctor here we were working with recommended Dr. Mangham in Seattle at the Seattle Ear Clinic. He specializes in removing tumors from the ear nerves (and other head nerves). I started seeing him yearly with the MRI's and still am. He is the one that operated on the facial nerve in '95 and did a marvelous job! That was done at Swedish Hosp. in Seattle (The Ear Clinic is located across Broadway from Swedish on corner of Broadway & ). I would recommend you talk with him since you haven't had treatment yet. However, be ready with all your questions -- I always got the feeling that he didn't want to scare me or say too much that I may not be ready to hear yet! But, when I talked to him about a week ago regarding the new GK at Harborview, he was up on information about that and sent me info on the results of stuff with the GK at Northwest Hosp too. I had lots of questions, and then he was more than willing to answer and inform and give opinions.

My Neurologist is here in Olympia. He is not a surgeon, but I am fortunate that he knows a great deal about nf2 and has written articles on it in medical journals. I see him twice a year.

My children and grandchildren do not have this -- my Neurologist, Dr. McDowell, had specimens of my tumors sent up to UW to a friend of his who did the testing when she had time so it didn't cost me anything. I would think since your parents don't have it and the brother doesn't have it, and your sister is past puberty, yours is probably spontaneous, too, but they should pay attention to any signals and be aware just in case.

I see wrote you that "the other" tumors can be so much worse than the an's. Even tho I agree with her, I'm still fighting to save the hearing -- even a little bit. I know half my face could have been paralized if that tumor hadn't been removed right, and others can have worse effects you don't want to know all about until you have to deal with them because they appear differently in each person and cause different problems.

I truely believe that it's vital to "think positive" and you have to not let anything else interfere with getting better after treatments.

Side effects I have now are dizzyness (I walk like I'm drunk half the time and then use a cane), shoulder and neck pain, headaches (but they are better -- I take stuff for that, too), the seizures are basically gone (only had 1 grand mal), need twice the sleep (usually have to take a nap - especially if we're planning something for the evening), unable to drive very far. I do have good days, tho, and find that bad days are usually after I've tried to do too much. But I still feel quite lucky.

Let me know if you have more questions.

Charlotte

Bluediver's note lengthy and about where I sought treatment in the Washington State area.

I've only been "playing" with computers for two years and have lots to still learn, but it's fun.