ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Tumbleweed on December 18, 2008, 06:00:58 pm
-
A few days ago, I had my first followup MRI and audiogram since receiving CK in July. That is, it was my "5-month" MRI and audiogram. There was both very good and terrible news.
First the good: my AN has virtually stayed the same size. The films showed a 1mm increase on two axes of measurement, but 1 to 2 mm is the margin of error for MRIs, so the increase in my case was statistically not conclusive. Better still, the MRI showed dark blotches spread virtually throughout the entire tumor except at the very periphery -- necrosis big-time! One of Dr. Chang's nurse practitioners remarked that my MRI showed a lot more necrosis than they usually see so early in the game.
Not so good: My audiogram revealed I lost 15 dB more hearing ability at one of the high frequencies. But at least my hearing at the other frequencies were virtually unchanged (down 5 dB at some frequencies, but 5 dB is also considered to be within the margin of error and statistically inconclusive). Dr. Chang said that if the loss was due to the tumor creating irritating inflammatory compounds, I could possibly regain the 15 dB at some point when the tumor settles down (dies). Die, tumor, die!
Terrible: my MRI revealed a new lesion in my hypoglossal canal. It is thought that it could be a schwannoma (tumor on the myelin sheath) on my hypoglossal nerve, which is located at the base of the skull next to the jugular vein. However, the enhanced lesion looks "smudgey," leading Dr. Chang to say he's not 100% certain it's a tumor. Because it is small (6 x 7 x 8 mm), he recommends I "watch and wait" until my next MRI is taken in 6 months before taking any action. If it stays the same size and shape, I'll stay in watch-and-wait mode. If it gets larger, then they'll conclude it is indeed a tumor and should be treated at some point. Dr. Chang recommends CK -- he specifically recommended against surgical resection -- if treatment becomes necessary. Something new for me to worry about. :(
Best wishes to all,
Tumbleweed
-
Hi, Tumbleweed,
Congratulations on your tumor dying this early and sorry to hear about the possible new tumor. Maybe, it is not a tumor after all, time will tell. It certainly is worrisome and frustrating to wait for any sort of closure. I have my own MRI scheduled for Monday and am so petrified of the possible results. I just want "no change" from the previous one - that one was all clean!
Maybe, it's worthwhile to give your MRI to read to somebody else and see what they say. Just a thought...
Eve
-
Oh boy. Tumbleweed, I am no happier than you to hear about a possible new hypoglossal tumor. That would be the last thing you need. I think he is saying don't do surgery because that gets into the swallowing function and you don't want to go there. Hopefully right now you can still stick out your tongue. :P Let's hope it is not a tumor, but one of those mystery enhancing regions that seem to show up on MRIs; or if it is one, maybe it won't grow much.
At least your AN news is good. Necrosis, necrosis, that's a good thing. If you end up losing a smidge of high frequency hearing, oh well. It sounds to me like you will be keeping most of it. A little swelling is nothing to worry about at this point, it is very common - if in fact the tumor is any bigger.
I expect you will be more nervous during this next 6 month wait, with a question hanging in the air like that. Hopefully you can set it aside for awhile and not worry too much until you know more. Please stay well and take care.
Steve
-
Thanks, Steve and Eve, for your support. At this point, I have no hypoglossal symptoms. The hypoglossal nerve is a motor nerve which controls tongue protrusion and side-to-side tongue movement, and neither function is enervated in me at this time.
I'm mostly keeping a positive attitude, after initially being shocked and upset. The uncertainty is the hard part. And wondering when the next shoe will drop (I think it's natural to worry that this is only the beginning and my body will produce even more tumors). I'm trying to put it out of my mind til I have to think about it again in 6 months.
Many thanks,
Tumbleweed
-
Tumbleweed, Geez, this certainly constitutes more than your fair share of troubles. But I guess life can be like that sometimes. None of us here would have volunteered to be in this position and yet here we all are... For me, the AN has played a big role in finding a positive place -- not a superficial one, but something much deeper. I know you'll persevere and even prosper through this next phase of your saga. My 18 month MRI is in three months. And so we move onwards and forward. Take care of yourself and please keep us posted. Sincerely, Francesco
-
Tumbleweed,
I was happy to hear about your positive AN results, but very sorry about this new potential trouble. Wow, when it rains it pours. I really hope this will turn out to be inconsequential.
Just to give a positive spin, us ANers who are getting regular MRIs can detect anything out of the ordinary much sooner that anyone else in the general population, and so we can hopefully deal with it early on. It is conforting that Dr. Chang mentioned that if needed it is treatable with CK, and I am sure he will be monitoring you carefully.
Take care,
Marianna
-
Tumbleweed,
First, I want to say I am glad your AN is dying quickly. That is a blessing indeed. Secondly, I hope for you that what they see in your MRI about another tumor does not turn out to be the case. Sometimes the films are not exact. I was once told I had a tumor or mass on my kidney and after the second scan they concluded that indeed it wasn't what they first thought. That report was over a decade ago. Also, I know of a man in my area who had brain surgery about two months ago based on something "rare" they saw in his MRI. They had diagnosed him with a very rare condition. When the neurosurgeon operated, he could find nothing like what had been reported by the MRI. The man seems fine now. I hope this will be the case for you.
I'm sure hearing news like that was the last thing you thought you would hear. From your post, you seem to be a spiritual person with a very healthy lifestyle. I hope you can pass through this phase with some type of peace that comes from within. I pray you will have nothing more to worry about as far as a tumor!
-
Thanks so much, everyone, for your support. It means a lot to me.
Marianna, I took solace in your words of wisdom. If indeed this is a new tumor, at least it's been discovered before I've had any related symptoms and while it's still small. Dr. Chang told me today via email that the hypoglossal nerve is very resilient -- like the facial nerve -- and does not enervate readily after irradiation. So, I take that to mean that should CK become necessary, there's a good chance I won't lose any motor function with my tongue.
Thanks, Windy, for reminding me that this is not a done deal and perhaps nothing I should worry about. The real-life examples you gave of initial misdiagnoses give me hope that I'll get positive news in six months. Not that Dr. Chang or anyone else at Stanford has concluded firmly this is a tumor. Again, Dr. Chang said he's not 100% certain and advises a conservative "watch and wait" approach for now.
Eve and Donnalyn, thanks for reminding me to get a second opinion. I'm going to hold off for now, as nobody at Stanford is rushing me to the operating table. I'll probably follow up on your suggestion in January, after the holidays. Derald Brackmann has looked at my MRIs prior to my being treated; I expect he might extend his generosity once again if I ask him to. If he can't for some reason, I'll definitely contact Dr. Friedman (thanks for your referral, Donnalynn).
Many thanks to you all,
Tumbleweed
-
Tumbleweed,
Glad to hear your AN is definttely dying but sorry about the drop in hearing. Is it noticable to you? Hearing tests are done in a sound booth and often don't really reflect how you think you are hearing. The drops are small enough that you might not even notice. I'm very sorry to see that you might have another tumor to deal with. I'm keeping my fingers crossed that this part of the report turns out to be inflamation or something euqally innocuous.
Keep the faith,
Wendy
-
Tumbleweed... ok, good vibes... good vibes.... Like you, I lost approx 15db in my first 6+ months post CK, then it leveled off and my hearing remained what it was at time of the CK. Hoping the same and sending good vibes.
As for the new potential lesion, sounds like Dr. Chang is all over it and possibel re-do of MRI? Keeping fingers crossed for good news and keeping you in my thoughts and prayers.
Please hang in there and congrats on the news about the AN......
Phyl
-
Thanks, Wendy and Phyl, for your well wishes. It helps.
Yeah, Wendy, my additional hearing loss is unfortunately noticeable. Hopefully it'll come back at some point. As for the 2nd lesion on my MRI, Dr. Chang says it's unlikely it's inflammation because it's been there for at least 7 months (even before my CK treatment, as shown on an MRI taken in May '08). But it is possible. The other potential thing it could be is an unusual cluster of veins (hypervascularity) around the hypoglossal nerve, which would not be a problem. As long as the "lesion" -- as the reading radiologist called it -- doesn't grow any larger, I'm good for W&W.
Phyl, when you say your hearing leveled off after the initial loss, do you mean you regained what hearing you lost post-CK? Dr. Chang mentioned this might happen. I'm praying it does.
Thanks,
Tumbleweed
-
Tumbleweed,
So glad to hear your AN is dying but it sucks to hear that you may have another tumor. As Marianna said, it is early and small and so hopefully you can hang in there for a while before having to do anything about it. I'm hoping it's a "cluster of veins" and nothing more. Also sorry your hearing has dropped off. Sending good thoughts your way.
Marci
-
Well, Dr. Chang definitively referred (in an email to me yesterday) to the second lesion as a "hypoglossal schwannoma," so I guess he's less hopeful that it's possibly something else. I'll have a clearer picture -- no pun intended -- in about a month when I get my next followup MRI.
:(
Tumbleweed
-
Tumbleweed,
I have followed your story these many months, knowing that my treatment of choice would be CK.
So sorry about the additional tumor - but thank god for MRI's so they know what is going on inside your head.
I will be thinking of you when you get the next MRI.... That ol' waiting game, doesn't it make you crazy? ::)
(I am right there with you.)
Keep us posted, OK?
Sincerely,
Sue
-
Tumbleweed, sorry you had to absorb shocking news. Definitely rattling. But hopefully the fact that your previous tumor is responding so well to radiation bodes very well for the same happening again should it turn out you do have to have some future treatment. Also, because of your normally scheduled recheck, you found it very, very quickly, which seems good as well. (If there is an "it"--time will tell.)
-
Well, Dr. Chang definitively referred (in an email to me yesterday) to the second lesion as a "hypoglossal schwannoma," so I guess he's less hopeful that it's possibly something else. I'll have a clearer picture -- no pun intended -- in about a month when I get my next followup MRI.
:(
Tumbleweed
Oh, sheesh! Tumbleweed, at least you have an answer and you know I'm sending thoughts/wishes your way. It bothers me to no end for those that have more "head" issues (ie: AN's, hypoglassal schwannoma, or choroidal cysts and Chiari 1, like myself...) ... it's not like we don't have enough with our AN's, eh? Pls hang tough and you know I'm sending the wellness vibes your way.
Phyl
-
Tumbleweed~
Somehow I missed this the first go 'round - I am glad that you received good news about your AN but so sorry about the other - and that you have had to spend the last 6 months worrying about it. I hope that it can be treated early on with little residual effects. I will add you to my prayer list!
K
-
Tumbleweed -
like Kay, I missed this post also - sometimes there are just so posts here.
I'm sorry to hear about the 2nd tumor. I think this brings us up to 3 hypoglossal schwannoma on the forum.
Please keep us updated on this situation.
Prayers,
Jan
-
Tumbleweed ~
Hooray for all the good news you received from your MRI....and Boooo for the bad! Watch-and Wait can be nerve-wracking but I just hope (and will pray) that this new culprit remains 'stable' (no growth) too. :)
Jim
-
Thanks so much to all of you who have responded. Your support makes a big difference!
I've actually been very calm -- almost philosophical -- about the second tumor since finding out about it last December (except for the first couple days after getting the news, during which time I was understandably a bit shell-shocked). I pretty much had put it out of my mind -- no sense worrying about something I couldn't do anything about for six months. But now that my next MRI is approaching, I'm getting a bit nervous. (I expected I would.) I'm sure I'll be a wreck when I fly to California for the tests (audiogram included).
It's so bizarre having a hypoglossal tumor (which is 100 times more rare than an AN) in addition to the AN. I sometimes feel like damaged goods. I just hope they don't find any more tumors on the next MRI. I know that's unlikely, but this second one has me wondering/worrying a bit...
Tumbleweed
-
I sometimes feel like damaged goods.
Tumbleweed -
I think you're just more special and unique than the rest of us. While we are all rarities, you are even more rare than we are :)
Hang in there and keep the faith. We're all here for you.
Jan
-
I think you're just more special and unique than the rest of us. While we are all rarities, you are even more rare than we are :)
Hang in there and keep the faith. We're all here for you. Jan
Great words, Jan! You are definitely special, Tumbleweed! ;D
---------------------------------
My thoughts and prayers to you as you approach the 2nd MRI...
Sincerely,
Sue
-
Hi Tumbleweed,
I'm so glad to hear that your tumour is dying so quickly, but so terrible sorry to read about your possible new tumour. I really hope it goes away until the 2nd MRI or at least stays the same. I'll keep my fingers crossed for you.
Best to you from Helene