Possible AN Again

[Dealy]

Well I guess it was too good to be true. In my last MRI at 6 months the radiologist that read initial report indicated some enhancement on the left side where I had surgery 18 years ago. I e-mailed facility where I had my FSR radiation and mentioned this concern and they indicated it could be scar tissue from previous surgery and would look agasin at my yearly MRI in June. I wrote and send last three MRI's to surgeon who did my AN surgery 18 years ago (yes he is still in practice). Heard from hiim yesterday. Will not give my any input by letter-have to make a personal visit-figures. Anyway my symptoms are increasing by the day. I log all daily symptoms so I can keep track. Started out on January 3rd with my ear itching inside like crazy. Then it progressed to an occasional aching of the ear-and now last night my temple is tight like a vice is on it. My left eye itches alot. I was hoping this would be an ear infection but a little birdie tells me this is evidence of regrowth of my original tumor from 18 years ago. However my balance and hearing nerve were removed so the only nerve left on that side is the facial nerve. It bewilders me that I have had all these MRI's the past two years for my tumor on the right side and this would go totally undetected until now. We are going to see my ENT on the 30th of January. However this is the same guy who told me I did not have an AN on the right side 2 years ago. I would change ENT"s but we live in a rural area so they are not that abundant. The one we have in our hometown-what I have heard is even worse so I will stay away from him like the plaque. Most likely will travel to Kansas City this spring to see Doctor who did my orginial surgery and then see what they say. I already have my right side on my face and inside my mouth numb from the right sided AN. I just hate to think about one on the left. Has anyone out their-itf it is a facial neuroma-could radiation be used on this. The doctor in KC is a surgeon so I would bet he would opt for surgery. I pray that it is not regrowth but again my heart tells me that this is not so. Thanks-Ron.

[Cheryl R]

    Hi Ron.   I just posted and after reading this post I would not say your present symptoms are facial neuroma for sure.               Mine showed up on the MRI and then the facial paralysis symptoms but I had no other symptoms.          I do well know that one can have all kind of weird things act up in spite of what doctors say.               Good luck in getting figured out what is going one with you.     
I also know well that some ENTs don't even have a clue about it all.     The very first one I ever saw in 2000 said I was just anxious when I asked if it could be a tumor.            A year and a day later I had a 8 hr surgery for my "anxiousness"!
                                 Cheryl R

[ppearl214]

Ron,

I am so so sorry to hear you are enduring this... I know you have read here many times about obtaining as many dr opinions as you can get and understand that travel may be difficult  due to your current location.

As we all know... these things can regrow or redevelop.  Our hopes/wishes are that they don't and know that all AN patients will need to be monitored for the rest of our lives.

If you can get to KC, I think that is a wonderful idea.  Maybe to OKC to see Dr. Medbery?

I'm keeping my fingers crossed that it is not a redevelopment of an AN and will look for updates. Hang in there. I can imagine how frustrated you are, but you know... we're here for you and will look for further posts to see what is going on.

Hang tough Ron!
Phyl

[Obita]

Dear Ron:

I have convinced myself at least a half dozen times in the last 2 years that I am having re-growth.  Every twitch, ache, wierd feeling etc...sends my anxiety through the roof.  I do hope that is what is going on with you.

I will be thinking of you and watching for and update. 

Good luck on the 30th.

Kathy

[ppearl214]

Ron... update?  Thinking of you!

Phyl

[Dealy]

Thanks Phyl for thinking of me. Not much to update really. Went to see my ENt. I asked him if I had an ear infection on the left-he said no-it is all caused by radiation to you. I told him I never had radiation on the left. He just shrugged his shoulder and like-Oh well it was a good guess. He did not actually say those words-but he might as well have. He said we will cross our fingers and toes it is not another AN. So that was it. My bottom of my eyes swells up during the day and goes down at night. It almost acts like sinus problem because sometimes my left nostril-not the right runs like crazy when I work. So the next plan is to see the surgeon over spring break that did my surgery 18 years ago. My wife and me arer also going to looking into disability for me. I have 2.5 years to go in my State Retirement program but I can buy those years out. I cannot really hear at work at all so regular conversation is out-and you know people they will not take the time too stop and look at me too talk so I miss almost 90% of what they say. My wife eats lunch with me so that is really the only decent conversation I get for the day. It is a real bummer-but I have no choice but to live and go on and do my best with what I have left. Life sure isn"t any fun anymore though. Thanks-Ron

[ppearl214]

Ron,

I am.... oh, lordy... GRRRRRRRRRRRRRRRRRRRRRRRR at that ENT!     I know you are going to meet with your surgeon that did the original surgery, but will you consider checking other dr's as well?   You know how we are around here and Ron, you do what it takes to get your answers (we have to be our best/own patient advocate and dang it, it's our health and we don't stand still for no one!)... and Ron, if I was there, I'd be doing lunch with you too!

Ron, what can I/we do to help to get you the answers you need?

Phyl

[Dealy]

Phyl_I am on my lunch period. Yup My wife came. Called surgeon this morn in KC. He can not see me till MAY. eee gADS. That is way too long. The only thing is my wife works for the same university I do. She has hardly no time accumulated to take off. So even if we diid take off it would have to be w/o pay for her and that would hurt us economically. Guess I will just have to tuff it out and hope my head does not explode-because that is what it feels like today-both sides I'm feeling intense pressure on the right also-I wonder if this could be swelling. Thanks Ron. P.S. We are not going to pursue doctor's anyplace else yet.

[ppearl214]

Ron,

I know things are tough and economically, not good either... but.. it is there anyway to get to OKC to see Dr. Medbery and his gang, including neurosurgeon? That way, you can get consult with radio and micro-surgical at the same time? I feel bad that if your wife takes time off w/o pay, but I want you well... just a thought. We all know that with Dr. Medbery and the folks in OKC, they are going to tell you straight from the hip.

Just a thought....
Phyl

[Dealy]

Phyl- Well Medbery would be acceptable to us. Oklahoma City is not that far from us. Do not know how to get hold of him and consult. Besides I sent my CD to doctor in KC and he has them. I guess I could ask him to mail them back. You see I do not want to burn any bridges. This surgeon in KC is affiliated somewhat with house in LA so if I had to have surgery-right or left down the line I want a competent doctor to do this-and he is good. I do not know of any other surgeon in the area that does these kind of surgeries besides him. He does send the really complicated one's though to House in LA. Another question-Have you ever heard of symptoms from a one sided tumor causing symptoms on the opposite side. I read here once something about that but it's been so long ago I do not remember where it is now. Thanks-Ron

[ppearl214]

Ron,

Ask and you shall receive:

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org or cmedbery@coxinet.net

Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave.
Oklahoma City, OK 73102


Tell him Mark and Phyl and Sandy and all the gang referred you to him. If a dr feels you are burning bridges if you check with another, well, I have my own personal opinions on that but they should not, as it's your body, not their's!

You can also ask for another CD or bring the films.... a phone call to him first may be a terrific first step. Name drop us.... it may help!

Phyl

[Dealy]

Thank you Phyl for the info on Dr, Medbery. I had too take off work yesterday-very disoriented etc. Today while I am typing this it is even worse. My head feels like it is the size of a melon and wants to explode. I will lay down for the rest of the day. My left side is even getting worse. Something is going on-I wish I knew what. Thanks-Ron.

[Dealy]

Well I just received some terrific news today. I sent my last 3 MRI scans to my ENT/Surgeon in Kansas City who did my left sided AN 18 years ago. Last MRI showed some enhancement on that side. He called my wife this morn and told her this is NO TUMOR OR RECURRENCE. He told her that he looked at my scans and so did two other noted neuros in KC and they all concurred thyis is no tumor. Thank God. He did reccommend a hearing aid for my treated right ear. I was told no by my local audiologist and ENT-said my hearing is too good. We have appointment in KC on April 6th and he wants to set down and tell us all about my scans and outcome and do a hearing test to be fitted with a hearing aid. Now this doctor did not even do my radiation or have anything to do with it-and yet he steps up to the plate. Now this is what I call a real doctor. Also symptoms are acting up again-I really think this time it is actual swelling (7 months out from FSR radiation) so I was put back on a six day dose of Predisone. Thanks all. Ron

[ppearl214]

Ron!

I'm doing the Snoopy happy dance for you!     Hang in there and "this, too, shall pass...."

What a way to start a weekend! 

Phyl

[flier58]

Hi Ron,
I am so happy with drs. opinion about your MRIs.  We all need good news on this board.  Sorry you are not feeling well but if it is GK working overtime ...... then it may be a good sign.
Flier58