Next MRI on the 30th of September

[Jackie]

Hello  friends of this forum,

After fretting since February with my diagnosis of a 9x11 AN, I finally figured out that my ENT was not in the least bit trying to help me nor cared what I thought! He has no bedside manner and seems to be the type that wants you not to be pro-active but to just listen to him and do as he says! My husband and I have done a lot of research, like all of you and now that we are not "totally" ignorant when it comes to AN's my ENT has become very frustrated, to the point when I had a consult with him about my second MRI, he walked in the room and didn't even greet us but started out "So you have an AN" Well, I don't want to be treated like a tumor, I have a name and am a person that happens to have a tumor! Anyway, long story short since he didn't answer my questions to our satisfaction we changed ENT's and this new one seems to be much better! My second MRI mentions and I will quote it exactly"There is a 5-mm fusiform focus of enhancement seen on the contralateral side, slightly more cephalad, posterior to the brain stem origin of trigeminal nerve, which appears to be arterial distribution infarction". When asked about that my first thought was "Oh no, NF-2 and he said "No those are very rare", he then said it's just a vein! Well, fired him, few weeks later new ENT says he doesn't know what it means, let's order an MRA with contrast which is the same machine, different settings to enhance the veins of my brain! So of course the concern is... is it an aneurism?? Anybody venture to speculate on this???

Of course, I continue to worry! What a terrible year this has been! I lost my dear Mother in April, lost my favorite cousin 3 days later, got diagnosed with the AN and now maybe something else?? I keep my prayers going!!! Sorry for venting, but you all said that's what you're here for, right! Love you guys!!!
Jackie

[leapyrtwins]

Jackie -

sorry to hear about the "interesting" doctors you've been encountering.   Some doctors are like this, but lots of them are not, so don't give up.  I know that's easy for me to say, but you owe it to yourself to find a better, more informed doctor - afterall, this is your life.

It may take some looking, but you can and will find a doctor that understands ANs, knows how to treat ANs, and in addition, has a decent bedside manner.   I found a few of them and from reading other posts, I know that other members did too.  Sometimes these things just time.

So, hang in there, try not to be discouraged, vent when you need to, and don't give up the ship 

Jan

[nancyann]

Hi Jackie:  Boy, you've had a rough year.....    As far as the MRI, I'd like to see a neurologist/neurosurgeon who specializes in the brain alone take a look at it.  I personally am one who doesn't care about bedside manner - it's what they KNOW that's important (I've met some drs. with great bedside manner who aren't worth s---, I wouldn't let them treat a dog..), well, enough said about that.   Maybe see if you can get a referral to a dr. who specializes in the brain ( some neurologist specialize in say the back/spinal cord,  nerves of the extremities, etc..).
I wish you all the best.  Take a deep breath my friend, the journey is just beginning ...

[Windsong]

Hi Jackie,

It's quite the journey isn't it when you hear you have an An? It's good that you have had your six month MRI which said it's the same size as when you were diagnosed in February  ... congrats on that. Sounds like the doc who said to watch and wait at your An size may have been right. NO change is good news, right?  Glad you are over that bit for now.

You haven't mentioned any symptoms changing so I assume they are the same as when you went to get your first mri for diagnosis. So that sounds good too.

Bed side manner isn't all that important when viewed with skill and knowledge. I know a few doctors in a few disciplines other than An who are brilliant but would never win prizes with bed side manner lol. It is important of course to have enough feedback and have questions answered at appts. so you feel comfortable.... some are lucky and get the whole bouquet of skill, manner, etc., but I'd pick skill before the rest.

Hoping your next six months go  well, too! 

wishing you all the best,
windsong

[Jackie]

Actually my second MRI said the measurement was 10x12 as opposed to the first one said 9x11, so in my book that is a 1mm difference. The 3rd MRI being done on the 30th is to determine what that vein is all about??? No-one wants to touch that, eh???

I agree bedside manner isn't always the important thing here, but this ENT doesn't listen, and doesn't answer questions. My husband asked him after my first MRI what is the difference between GK and CK and he said there is NO difference! Not a real confidence builder, would you agree? The new ENT has read all my file and wants to find out what the vein thing is also, because it is on the opposite side of where the AN is! This will be my third MRI in 8 months! AND I haven't been treated.........yet??

Thanks for listening,
Jackie

[Windsong]

Hi Jackie,

I'm sorry, I meant to continue in my reply and tell you that I was sorry you had had such a rough year also losing your mom and cousin along with hearing news about your An. It's been a rough year for you. And I guess I was I trying to say about the An that it was good that it was still pretty much the same size.....and that in itself is good news. I agree that if you and your husband were not getting answers it's always better to find someone who will give answers. And I do understand how anything on the other side can be worrisome as I too worried about a second An when I was losing hearing in the second ear this past spring. I don't know what your arterial distribution infarction is as it could indicate a number of things having to do with the blood vessel. I know with my own follow up mri's a few new things showed up and/or were mentioned which caused me some worry but then they were explained to me by my rad doc and my neurotologist and allayed my worries. So I hope this will be true for you too after your next mri with contrast.

Your post and some others here did point out how we Do need to have a doctor who takes the time to explain things etc. As you said we are not a "tumour" nor on an assembly line.... some of us are luckier than others with doctors who have "personality" and show a degree of caring and ease. I've been fortunate with my An team.

At the moment I have one doc (NOT An related) who could use some serious classes in "personality" or shall we say how-to-relate-to-a-patient etc. I haven't switched as this doc is actually good and does get things done. On the other hand, more than a decade ago I had emergency surgery by a specialist who  after the op had the personality of a "stone" and tho' he was very skilled I left and went to a new specialist for the follow up care. I am mindful too, though, of a girlfriend of one of my girlfriends who some years ago chose this guy to do a hysterectomy because he had a great bed side manner and she ended up with some serious problems. (this particluar person  wasn't all that skilled it turned out). Her gp could only say well he hadn't sent her to him. It's unfortunate that any patient has to switch at any time.... so it's good that we have boards like this that help An patients make their choices.

I wish you much better days, Jackie. I truly hope that this "vein" thing turns out to be something not too significant. All the best,
windsong