More Confused then ever!!!!!

[Dawn]

So here is my new concerns/things to make you go Hmmmmm

I had my phone consult today with House.  After reading my newest MRI I was told that they too feel it could be a Lipoma in the Internal Auditory Canal or an Acoustic Neuroma that hemmoraged and left some traces of blood causing the tumor to light up on the MRI (which he feels is really not the case but could be) or now a new one for me....a possible choristoma!!!!

So instead of getting an answer he added a new one to the mix!!!!!!!!!!

I am so frustrated, confused and upset.  Here I was 2 weeks ago finally made the decision to have the Mid Fossa and was just looking to pick which surgeon and now here I am with a possible 3 types of tumors it could be

The only thing the doctors seem to agree on is waiting another 6 months for another MRI and see where we are at then.  The Doctor at House did address my Chiari Malformation and feels that the symptoms I had originally described that lead to all this was due to that and that I should follow up with Neurosurgeon.  And the one he recommended I already saw and didn't even mention the Chiari to me (another hmmmmm)

Sorry to vent to everyone but you guys are the only ones who really knows how I feel with all the stress of deciding what course of treatment you want to have and then to finally have a decision and then have to just wait longer and still wait for official diagnosis.

Any words of wisdom are greatly appreciated!!!!
Thanks
Dawn

[anissa]

Dawn, I'm sorry to hear that things are so confusing right now!  So, does that mean you're going to wait 6 months then?  How frustrating, especially after going through the decision making process for treatment.  Hmmm.  About the chiari, what kind of treatment do they do for that?  I have it also and haven't looked into it too much because the symptoms are not too prevalent, besides the headaches.  My ENT told me to make sure my surgeon knew about it, that it would be important to know for my AN surgery but the neurotologist said it was no big deal.  I'm going to make sure my neurosurgeon knows all about it though, it may be more of "his" area, I don't know.  Good luck as you learn more and keep asking questions.  Hopefully someone around here can help you out. 

[suboo73]

Hi Dawn,

I wanted to stop by to say that i am thinking of you and hoping your find your answers soon...  Wow, it does seem confusing to me, too!
Did the neurosurgeon realize you have the Chiari when you spoke to him? If i understand others correctly, this could be a factor if you choose surgery for the AN treatment.  [and if it is not an AN but a lipoma or choristoma, then how are they treated?]  I don't even know what a choristoma is....

Sounds like you need to break it down, item by item to figure out what needs to be treated first, second, etc. or not at all.
I think others will chime in here to help you.  I am curious too about the MRI - they asked you to wait 6 more months - for which part?  Perhaps you need to call House back and get some clarification on all these issues.

I hope your symptoms are not too bad that you can wait the 6 months, if that is the recommendation.  This is one of my biggest fears - ok one day and then maybe have major symptoms (that don't go away) the next.

Take care and keep posting.  We are all here for you.
My thoughts and prayers are with you.
Sue

PS - Sorry i couldn't help more - but i have been at this only since Sept. 08 myself. 
We will all get there eventually.  Know that you are not alone.

 

[EJTampa]

Hi Dawn,
 
Most of the medical definitions I could find use wording similar to this:
 
choristoma /cho·ris·to·ma/ (ko″ris-to´mah) a mass of histologically normal tissue in an abnormal location.

A blurb from the University of Michigan Cranial Base Program:
 
Choristoma:

Choristomas are congenital lesions that are not true neoplasms. They represent normal tissue in an aberrant location within the body. In the head and neck region, the nasopharynx and the ear represent the most common sites for these very rare lesions. The nasopharyngeal lesions most frequently present as a nasopharyngeal obstruction in the newborn. While these lesions may extend to the cranial base, intracranial communication does not occur. Treatment involves surgical excision. 
 
In any case, the pathology is similar to the AN since it grows where it's not supposed to, but is comprised of normal (non-cancerous) cells.  That's good news.  I didn't find a lot of information about treatment, other than what's above, but I would think the options mirror an AN.
 
I think with all of your consults agreeing that you can wait another 6 months for a new MRI, that may be the way to go for you.  Have you been noticing any rapid changes in symptoms or any pain?  I can't remember off hand if you had mentioned this in a previous thread.

I would take some time to write down all the questions you currently have.  Sometimes writing down the questions will help you think of more, and you can never ask too many questions.  Once you are happy with the list, call one or all of the physicians you have spoken with and fire away.  You can record or write down the answers so you won't forget.  I know I am notorious for forgetting an answer I really wanted to remember.
 
I wish I could be of more help.  Let us know what you learn.  This is new for me, and probably many others as well!
 
Ernie

[Dawn]

Thank you for the support!!!!

I am able at this point to wait the 6 months but that could change.  I had MRI in November and in March and it showed no growth so lets hope it stays that way.  I am thinking of planning a summer vacation to CAlifornia and to get an in person consultation with House as I think it will help them exam me and take whatever tests they want and maybe get to the bottom of things.

In the mean time there really isn't anything I can do but send my MRI to the other doctor's I already saw and get thier opinions.

Thanks again to all and if anyone else has any other information please send it along.

Thanks
Dawn

[sgerrard]

Oh dear, Dawn, that does sound confusing. 

I'm glad you had a consult with House, even if it wasn't very satisfying. That establishes that there is something unusual on your MRI that doesn't fit the pattern of a regular AN. It would not have been good to discover the surprise during surgery.

I don't much about Chiari I either, but if it is the cause of some of your symptoms, maybe whatever you have in your IAC is less of a concern. You may also want to find a nuerologist, rather than a nuerosurgeon, to discuss the Chiari.

Doing another MRI in six months sounds like a sensible plan, even though it sounds like they are just stalling. Like Ernie, I am curious what symptoms are you noticing, and if any of them seem to be changing with time?

One good thing about visiting House in person is that you could meet up with the LA Welcoming Committee. That might make the whole thing worthwhile.

Take care and don't despair, something will work out eventually.

Steve

[kathylittlejohncobb]

Dear Dawn,
I'm sorry for what you are going through, but I am glad that you have some time to continue to research while you await your next MRI. 
My experiences with House were all positive and the physicians professional and caring.  I believe that their advice to you, to wait and have another MRI, was based upon this professionalism and would be in your favor.
God bless you in your "holding pattern,"
Kathy 

[wendysig]

Hi Dawn,

You have been on my mind the last couple of days and I actually came on the forum to see if you'd posted recently -- if not, I'd planned to PM you.  I can't tell you how sorry I am that things seem to have gotten more confusing instead of less.  Your plan of action seems like the best one to me at this time.  Hang in there and keep us informed about what's going on.  We are here for you.

Wendy

[Lilan]

Dawn, I am delurking to say that I completely understand what you're going through. To make an extremely long story somewhat shorter, at least for now, I have been through about nine months of similar ups and downs, culminating in a diagnosis of not an AN but a probable hemangioma (blood vessel tumor, present since birth). Which are extremely, extremely rare in this area (geniculate/IAC). In a nutshell, it's all the usual AN symptoms but earlier/worse symptoms, including early involvement of facial nerve.

Thus with a 4x6mm tumor I am already considering treatment.

I went through much of the same -- where it seemed like an AN but doctors/radiologists were split because some features weren't quite right for an AN.

I hope sincerely that you will get some clear answers soon. My personal observation about House -- they have been awesome in doing phone consults with me, by the way -- is that they are in a conservative mood right now because they just published a case in December of operating on a supposed AN, they got in there, and found nothing. A few months later on MRI the "tumor" had disappeared. There are rare cases of this in the literature but with very small tumors and increasingly sensitive imaging, there do appear to be some cases where they feel that if the symptoms and diagnosis are brand-new, it's better to let it play out a bit before hurrying too much.

(Obviously this is often not the case -- if there are longstanding symptoms, larger tumor, or whatnot, there is almost no danger of this -- but in theory a tiny spot lighting up on MRI could be a viral inflammatory lesion. So they want to make sure it sticks around awhile, which makes sense!)

As frustrating as it is to wait, and I'm there, too, I do feel that it's better to be sure. It's very hard to get that "gut feeling" about what's right that everyone promises when different docs are telling you very different things!

Best wishes to you and thanks to everyone who posts on here. I have been lurking since last summer, visit almost every day and it's been a great resource and comfort to me since this started.

[sgerrard]

Dawn, I am delurking

I like your new verb - and that you de-lurked.

they are in a conservative mood right now because they just published a case in December of operating on a supposed AN, they got in there, and found nothing. A few months later on MRI the "tumor" had disappeared.

I have met this woman, she has attended some Portland ANA group meetings. She did report some post-surgical symptoms - I guess you can't play "find the neuroma" in somebody's head without disturbing things a little bit. A very strange, and fortunately very rare event.

Lilan, are you then considering surgery for your 4 x 6 mm hemangioma?

Steve

[Lilan]

Steve, thanks!

As for your question: It depends on which day you ask me. 

If it is a hemangioma, the surgery is more dangerous to facial nerve it seems -- but there is also a higher reward potentially. Because the tumor is "near/around" the nerves, and not "of" the nerves,* you can actually improve function by getting it out of there.

*I promise to only quote the best info I get -- Dr. House himself told me that surgery could improve function -- but my explanation as to why this is possible is gleaned from my readings and restated in laywoman's terms that may be slightly incorrect. 

I am also going to see a Cyberknife expert this week on the sly  . Every doctor has basically forbidden this, but because of the success treating AVMs in the brain this way, I can't help but ask. I want the biology of treating a vascular lesion this way explained to me by someone who is positive about it, even if I ultimately don't go that route. Will keep you all posted.

My symptoms are bad -- failing hearing, eye too wide open and dry, dizziness (this is the worst symptom so far in terms of effect on my life), ear fullness/pain/pressure and the usual headaches and fatigue. On the other hand, the thought of "hurrying" facial nerve dysfunction is not appealing.

The advice for hemangiomas is in total conflict. There are only about 50 cases in the literature. Some say "your only hope is to have it out fast." Others say, "surgery is so dangerous to facial nerve, you might as well let nature take its course and paralyze your face slower." It's really a perverse decision to put upon a person, very perverse.

[Dawn]

Lilian - thank you for your post, I do feel very frustrated as well.  As for house being conservative, I was diagnosed in late November 2008 and just went for my second MRI a few weeks ago.....now after this MRI my doctor thinks its the Lipoma, sent it to House and they also feel it could be the Lipoma but as Steve said, there is something going on where they are not 100% convinced it is a true AN and yes better to find out now rather than once they go in so not sure about them being conservative or just its still small and feel they may have time to figure out what it is

Steve - you hit the nail on the head....I feel like they are all stalling as they don't know what it is.

All I can say is I WANT IT OUT AND TO RECOVER, MOVE ON AND FORGET THE WHOLE THING!!! 6 months is going to be tourture

Someone asked what my symptoms are.....I wake up daily with a headache and nausea, I take some tylenol and it eases the headache but the nausea doesn't go away until I sit for my 40 min drive to work..I work as a Physical Therapist Assistant which means a lot of bending/turning...and get this...i sometimes teach balance exercises...ha ha (what a site)... I also have some balance/unsteadiness.  when i turn my head to quick i'm off balance and I cannot be walking and turning my head to look to the side or backwards or I'll also lose balance.

Its not that I fall or anything more like frustrating and annoying.  The Nausea is the worst of it all and the headache.

Does anyone think actually going to House for in person evaluation would help at all (other than meeting the welcoming committee)..lol

[Lilan]

Assuming you are not in L.A., I doubt it's worth it to travel there right now. As long as you are relating your symptoms to them, and they are seeing your films and any test results (i.e. audiogram), that's really what it takes.  JMO.

Have you inquired about a 3T MRI? You might ask about doing that for your next one if our doctor agrees it might help. They are at specialized centers and provide a better picture -- I did it because of the diagnostic confusion with mine.

[Dawn]

What is a 3T MRI?  I don't know if I've heard of that before.  I know they did a few different tests last time I went had the fat saturated tests....I don't care what they want to do as long as we can come up with final diagnosis and treatment!!

[Lilan]

It's 3-Tesla; normal MRI is 1.5 Tesla. Just a sharper picture. It may or may not help in your case but might be worth throwing it out there when you have your next one to see if they think it'd help at all.