New MRI

[sues1953]

Hi all

I am just curious as to how many of you had more than one MRI done before your surgery.  I was not even aware that my original MRI was not that good for determining where, how large, and even what kind of tumor it is.

When I went to U of M Dr. Telian told me that it is quite possible that I have a Meningioma and not an Acoustic Neuroma at all.     That kind of threw me for a loop.     He went on to say that if it is in fact a Meningioma that he would be so disappointed doing Translab because he could have done Retro and possibly saved my hearing.  The only way to know for sure would be to do a biopsy and I think he said that is not advisable for whatever reason.  He said if he were me he would not hesitate to try to save his hearing by doing the Retrosigmoid  approach.

Beside my first opining I had sent my films to House, two Dr.s reviewed them and there was never a mention of Menningioma.  Even though my hearing is almost perfect on my AN side they all three said Translab. I wasn't sure where to go next on this bumpy journey of mine.


After much thought I figured I would call Dr. Slattery at house and fill him in on Dr. Telian's take.  He called me back that same day and told me that he was fairly sure that it was an AN but he would consult with his group and call me back.  Sure enough he called back the next night and said that it would probably be a good idea to get a more detailed MRI so they could get a better look to be sure.  Specifically of the internal auditory canal done with very thin slices.   Wow    Are these guys at House great or what?  He sent me the order in the mail.  I took it to my PCP and he rewrote the order so my insurance will pay for it. 

I guess the point of all of this is why wasn't I told right from the beginning that another MRI could be helpful in my diagnosis?  Has anyone else had surgery with just the original MRI, the one that was just to try and find the problem?  Anyway I am very happy to say that I will have another MRI on Tuesday March 25th and will have it for my 4th opinion on March 30th when I see Dr. Katush.    Then I will send it to House and U of M.

Thanks for listening, I know I have really dragged this thing out but I am finally having some peace and I am sure I will have a surgery date by the end of this month.

Sue in Michigan

[epc1970]

Hi Sue
I had surgery off my  1st set set of films. I had minimal hearing loss as well despite a 3.8 cm tumor. Going in, it was up in the air to my surgeon whether I had a menigioma or an AN:I had very little tumor in the IAC and no erosion of the bone of the IAC which are very characteristic of an AN. My tumor was almost entirely in the CP angle.  Regardless of what it was, it needed to be removed as my brainstem was bent and shifted past it's midline. My films were sent to House pre-surgery and they were confident I had an AN -which it turns out they were correct.

Erin

[Mei Mei]

Sue,
I had an AN 1cm and it said so on my MRI, but it is said that you never really know until they take it out.

As for retrosigmoid, I had the retrosigmoid and a sticky tumor and lost 100% of my hearing so be careful about promises of the retrosigmoid approach;  it's not necessarily a given.
Sincerely,
Mei Mei

[Denise S]

Well Sue, I of course had many MRI's because of watching my other tumor (stable still).   But when the AN was for sure growing, that is when I was referred to MEI.    My dr. there recommended I get the MRI done down there by Detroit because they had better 'slicing' machines.    Mine here in Ludington isn't as detaliled I guess.   So, off I went for the MRI there and they also included on the orders the Internal Auditory Canal, only something MEI did vs. my previous doctors.    Then, I waited 6 months and went back there for another of the same thing.   That is where they could tell for sure mine was growing faster and could see the details (slices) better.

I had no clue there were different MRI type machines, so I had actually called my hospital and Providence to ask about it.  The dept. was good at explaining it.

Now as for yours, it is different because you are in a class size of tumor either medium or large.   So I'm sure they wouldn't think of just running another MRI because of the size.     I think you did your research on the different types of surgeries and probably found that most your size are Translab for various reasons.    I think your size is the 'hangup' on what type of surgery for starters.     But yes, now you can hopefully find out if Meningioma or AN!   To be honest, I am not sure that they can tell until they are actually in there.

Your questions need to be to the doctors, why Translab vs. Retro.   if your hearing is for sure good.    Did you have any of the other tests yet?   Like the ABR??   That is the one that is the Auditory Brain Response.   If that is down, they too know it is affecting the hearing nerve inside.

Hope this helps some....Thinking of you!!
DENISE

[sues1953]

Thanks you guys for your responses.

Denise you hit on another question I have.  I did schedule my MRI right near my house and it is a mobile unit.  You have me thinking that it would be worth the longer drive just to make sure its done right.  The thinest slices possible.  You called Providence Hospital and they explained it to you?  Is that where you ended up going for your MRI?  They also do them right at MEI don't they?

What are your thoughts  on this.  Thanks for bringing this to my attention. 

Sue

[sues1953]

Oh Denise I forgot to tell you that I have only had one hearing test so far, the beeps,  forgot what its called.  I am scheduled for three others when I see Dr Katush on March 30th.  I will be spending the entire day there. 

Sue

[Denise S]

Check with whoever scheduled your MRI.   Or maybe you have a number to that mobile one?   I think the best machine is called a T3.   Just ask about the 'slices' and sizing.   Usually someone in the radiology department knows.

MEI don't have their own MRI machine.   They sent me to Providence Hospital in Southfield, but now I think they send to the one in Novi (where the surgeries are.....love that hospital & area).         I have had 2 MRI's done there, but MANY here in Ludington :-(

[Jim Scott]

Sue ~

My initial MRI showed my 4.5 cm AN as plain as day but my very conservative neurosurgeon insisted on having a 'fresh' MRI scan taken just a few days before my scheduled (retro) surgery, which came less than a month later.  He said he was attempting to minimize any 'surprises' - which seemed like a good approach.  In your case, based on the conflicting diagnoses and seeming reservations of the doctors to state unequivocally what you have and it's exact size and location, it seems as if a new MRI scan may be a prudent move on your part. I hope the new MRI will end the speculation and help the doctors give you a firm diagnosis (meningioma or AN) and advise you with confidence on what surgical procedure would be best for you.   

Jim

[leapyrtwins]

Sue -

I only had one MRI prior to my surgery.   In fact, my docs used that MRI when they did my surgery; I brought the films myself.

The MRI report that the radiologist wrote said that my tumor was either an acoustic neuroma or a meningioma.  My neurotologist is the one who told me it was an AN when he viewed the MRI films.  How he knew this, I can't say.

It's only my opinion, but surgical approach should be your choice based on what you are comfortable with.  I had diminished hearing in my AN ear prior to surgery, but I had very good word recognition.  I saw absolutely no point in the translab approach because I wanted my docs to at least try to save the hearing I had.  I realized that retrosigmoid didn't give me a guarantee that my hearing would be saved but I felt my docs had to give it a shot.  The end result was I wound up SSD, but I was (and still am) comfortable with that.  If I had chosen translab I think I would have always wondered if my hearing could have been saved by choosing retrosigmoid.

Some people say that choosing retrosigmoid will leave you with horrendous post op headaches and that risk of long-lasting facial nerve damage is a given, but I encountered neither of these side-effects from my surgery.

Jan

[sues1953]

Thank you all for your responses

Jim...I certainly agree minimizing suprises is a good thing  .  It just makes me wonder if my MRI wasn't top quality for AN diagnosis why wasn't this brought to my attention earlier.

Jan...I'm still working on getting comfortable with any approach    Thanks for your input.  I totally agree if there is a chance to save my hearing I have to take it.  Hopefully I will have more information after the next MRI.  I see Dr. Katush on the 30th and if I get that "feeling of trust" I'm jumping in and not looking back.

Denise...I think I will change my MRI, mobile unit just doesn't sound like it would be the best.  Thanks for the T3 information I will check it out.

Sincerely,  Sue

[sues1953]

Donnalynn,

Thank you for the information.  So, you are saying that an MRA is just an MRI with contrast?  I have been researching the differences in MRI's and have found the latest and most accurate would be 3 tesla.  I will ask for that specifically when making my appt.  They do have mobile units with this technology so I guess I will ask before I cancel my appt.

I'm wondering if your MRA was done at a large hospital.  Its more than a little frightening to think that we go for these tests and they aren't as accurate as they could be.  I believe that this is great information for all of those newly diagnosed. 

Sincerely,  Sue

[Denise S]

Donnalynn, I find your situation interesting because it sounds like what I have been through (but other brain tumor vs. aneurysm).   It has irritated me greatly how different some of the MRI reports come out.    I am actually going for an MRI tomorrow (with & without contrast......never knew what MRA stood for, thanks).    Anyways I am going to be VERY stern to tell them I want them to look at things thouroughly.    Also because on some of my MRI reports they have mentioned I have another issue possilbe Chiari I Malformation.   Well, the doctors seem to skip more towards the concern of the tumors and that CM has been more over looked.     BUT, I wound up in ER yesterday in severe pain and the ER doctor went through some of my records and she thinks the pain was realated to the CM and intercrannial pressure.   They can't do MRI's on the weekends at my hospital....crazy.    At least I already had one scheduled for tomorrow.   (PS....my other tumor is still stable last we knew.....how about your aneurysm?)

SUE, yes be sure just to call the mobile one and ask the details.   But yes it was the 3 TESLA (I couldn't remember what the T stood for).   One thing too I probably mentioned is that most doctors request the MRI as a Brain MRI with & without contrast and focus on the IAC (internal auditory canal).      If yours don't say that, maybe you can call MEI and ask them to get you THAT kind of MRI order.

You got my number if you want to call.   Best of luck still
Denise

[pr1nsis]

Sue,

My tumor is small - so my surgeon wanted to get another mri in six months to track the growth!  He said it gave them a better image and able to see how much (or how little) it had grown!

~jb