ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: mindyandy on November 29, 2011, 04:42:57 pm
-
I have to admit my heart sank today when Dr. Medberry told me my AN was fatter. As most of you know I am almost 4 years post CK. The past month I have had/still have trigeminal neuralgia. I did take some anticonvultant meds when I am totally allergic to hypersensitivity. Red rash, swollen lymp nodes and fever :( So I am not taking any meds. Just dealing with the pain.
Anyways Dr. M said it was definately right next to the trigeminal dorsal so hence the reason I'm in pain. He said follow up MRI 6 months. I cannot take the pain to wait. If it has grown then I'm gonna have to face the music and look into my surgical options. I'm looking into HEI in LA. I would have to fly and travel but maybe sometime mid to end of Jan.
I'm very scared and really really need some support now more than ever. :-[
Mindy
-
Mindy ~
Allow me to express my sincere regret at the news that your radiated AN has shown definite growth and is causing you pain. Your decision to contact HEI is a good one that will likely receive near-unanimous support here. I'm so sorry you have to deal with this but surgery may end up being a blessing if it finally destroys the AN that has given you so much trouble. We're here for you and hope that you'll keep us updated because we care. You'll be in my prayers and those of many others and that is always a good thing. Please try to look forward - to being AN-free.
Jim
-
Dear Mindy .....
So sorry you did not have the best news today ..... and even sorrier that you continue to have the awful pain from the trigeminal neuralgia. I had surgery almost 18 years ago to relieve the terrible trigeminal neuralgia pain (long before my AN and on the opposite side). I'm not sure the anticonvulsant drugs would help much anyway. I tried Tegretol for months with gradually increasing doses until I was a zombie and still no relief. The only relief I had was after MVD surgery and it was immediate and never returned.
I would strongly urge you to contact HEI, where they deal with unusual acoustic neuroma cases every day. See: http://www.houseearclinic.com/consultation/acousticneuroma They will get back to you usually within 24 hours of the receipt of your materials. At least you would have a valid additional opinion.
Many thoughts and prayers.
Clarice
-
Mindy, I am so sorry to read your bad news! I remember how awful I felt when the doctor came to me and told me - "we need to do another surgery on you.." I did not have radiation but these words resonate in my mind and I feel your sorrow.
Once you've had radiation, it will make the surgical removal of the tumor more difficult.
Please search for really good and experienced doctors who have already dealt with this kind of problem specifically.
I can tell you more about Europe and the options there but have no recommendations for the USA, apart from House Ear Institute in Los Angels because this was the only option I considered when I was looking for a place outside Europe.
Best of luck to you!
Hrissy
-
Thank you very much for the warm shoulders and kind words. Tomorrow I will find out if HEI takes blue cross blue shield & if my insurance will cover me there. Anybody have HEI stories. Would like to hear.
-
Hello Mindy,
I am really sorry to hear this, I have been following your journey and your posts mainly through the CK forum. Did Dr. M. say how much it has grown? I just wanted to point out that growth does not necessarily cause trigeminal neuralgia. My AN was large enough to impact the trigeminal nerve causing numbness, but never pain. If you decide upon the surgical route, you should ask specifically the doctors if they think that the pain will go away.
I also had failed radiation, followed by surgery. I understand exactly how you feel, as last year this time I was exactly in your shoes, after getting my MRI results. I consulted with a lot of doctors, and all of them, except from one, said that based on their personal experience surgical removal of a radiated AN is not necessarily more difficult for an experienced surgeon. It all depends on the specific situation. They sometimes see sticky non-radiated tumors and vice-versa. The neurosurgeon that I finally chose said after my surgery that in some areas it was easier to remove, and in some others more difficult. I ended up with an excellent outcome and I recovered quickly with no side effects.
Having said this, you know already how important it is to find an experienced team - a consult with HEI is an excellent idea. It seems so hard right now, but don't despair. There are many stories here of successful removal of radiated ANs.
Best wishes,
Marianna
-
Mindy
If Dr Medbery is noting another MRI in 6 mos, he must feel the situation (ie: AN condition) may not necessarily be the issue this far down the road? Do I have that right? I know the dimensions of the growth at time at treatment (approx 14mm). What is Dr. M saying now re: potential growth? More than 2mm? Absolutely no sign of necrosis or ragged edge all the way around?
You know I give you MAJOR hugglez... and cheer you on BIG time. Wish I could reach through the monitor and personally deliver.
Be strong, m'dear.... be strong. Lemme know what he says. I have a sneaky (one of them female-gut-things) that it may not necessarily be what is thought.............................................
xo
Phyl
-
Phyllis dr M didn't measure. He said he didn't feel the 1/2mm difference was necessary or something. He did say it was in the trigeminal dorsal. Could you message him? I don't have a close relationship as you. Ask him about the edges etc. He did say its a little brighter ???
-
Dear Mindy,
I'm so sorry about your disappointing news from your doctor, but you have to plow ahead and going over to HEI is a good thing. Send your CD and fax your MRI report to them tomorrow first thing and they will call you back with an answer. They are very good about this. They won't fail you and you will be in good hands.
Mei Mei
-
If it is only 1-2 mm difference, then it would be within the margin of error for the MRI. However, as I learned in my situation it is most important to establish a trend by following subsequent MRIs. I never had more than 1 mm growth in- between MRIs, but the trend was clearly going upwards. So whoever reviews the MRIs should not only look at the most recent one. Probably Dr. M. is not convinced that he is seeing a trend yet, that's why he said to get another MRI in 6 months. You may want to check again with him.
A few other points: ANs might change shape after radiation. And, appearing "brighter" again, is sometimes due to the appearance of scar tissue, following necrosis. So from these two criteria you can't tell if your AN is growing.
By the way, from your signature I see that you didn't have CK with Dr. M. Is he the one who follows you now? What does your original radiation oncologist say about all this?
Marianna
-
Phyllis dr M didn't measure. He said he didn't feel the 1/2mm difference was necessary or something. He did say it was in the trigeminal dorsal. Could you message him? I don't have a close relationship as you. Ask him about the edges etc. He did say its a little brighter ???
Mindy
I have a message out to him... stand by for update :-*.
Phyl
-
MK I am not being followed by anyone right now. I no longer live in the Seattle area. I sent all my films to Dr M. He reviewed it and said its consistent with growth. He never called it a failure. He just said to stand on tenterhooks for 6 months. Im trying to grasp any straws I can.
Clarmst a member here had the same issue continued growth. She waited another year & it shrank big time. Sheesh if I can only be so lucky.
sorry posting via Droid
-
Im trying to grasp any straws I can.
sorry posting via Droid
grasping at straws.... not a good idea... you got us to stand by you! :)
posting via Droid..... oy. :o ;)
-
I know I have all you guys. I am very grateful. More than any of you guys will ever know ;D
-
Mindy
Please see PM/email from me here on the site.
Phyl
-
Ok.....I spoke to Dr. Medbery last night. What a very brilliant man. He told me to have another scan in 6 months. Right now he cannot say either way. He is very hopeful everything is fine. He does not seem concerned. He reassured me to rest at ease and wait to see what 6 months brings. I will do just that. Sitting on pins and needles of course, but I will do it. I'm hoping that it all turns out fine and is going to show complete tumor death next scan (asking for a miricale here). I have seen from some other posts that their post CK had grown a few mm and stablized and some shrank even after 3-4 years out. I'm trying to stay very hopeful here.
PS Each and every one of you guys here are spetacular!!!! I am not going to name names because it is each and every one of you ;) Thank you