How do you measure these things???

[dgrummer]

My husband was just diagnosed Thursday last week with an AN measuring (according to the MRI report) 2 cm x 7.3 cm x 2.2 cm.  I posted another question on the cyberknife board and the Dr who responded even asked if I had transposed the numbers.  So - is this really considerd a 7.3 cm AN??  That seems HUGE!  I've never read of one that large.  Our neurosurgeon here in Little Rock quickly referred us because he had no experience with these things. 

We are being referred to Dallas - Dr Bruce Mickey - and are waiting for when the appointment is.

[Raydean]

I saw your posting and my first thought would be to recheck the numbers that you have to be sure that they are correct..  My second thought is if the numbers are correct, it would become very important that your husband  be treated by the best and most expereinced medical team that you can assemble.  Giant tumors can cause other complications such as hydrocephalus resulting in emergency treatment, under emergency conditions.  Which means "no choices" as to the medical team. 

Given the size if correct it's important that your husband be seen asap by a medical team that has alot of expereinced in the treatment of AN's for the best possible outcome with the least quality of life outcome issues.  With a tumor of giant size, the tumor itself is not the only problem, but the secondary issues such as hydrocephalus can be life threatening.

All the best to you
Raydean

[tumor mom]

I would get a copy of the mri which will probably cost between $50 and $100.00 and send it out to the House clinic in L.A.  You can get the address off the internet.  Ask for Dr. Brackman or Friedman to read them - there is no charge and they'll get back to you within 24 hours.  That is what we did - we live in Houston and spoke with three teams of neurosurgeons down here and also the House Clinic.  My daughters tumor was almost 5 cm and that was considered large.  We ended up going to California and glad we did - she had no complications from her very long surgery and is preparing to go back to college this week - she is now 5 months post op.  It is worth the extra $$ just to get other opinions -  Make sure you research all of your options and good luck with your decision making.

[dgrummer]

thank you for your reply.  We first saw the neurologist Thursday who - looking at the MRI w/o seeing the report - estiamted  7-8 CM.  I listened closely to see if he was going to say mm, cm or inches (as I had no idea what to expect).  I remembered he said CM but by the time I got home - I convinced myself that couldn't be right.

Then Monday we say the neurosurgeon - and I asked for a copy of the MRI report - and it is here - in black and white - 7.3cm.  

We still haven't heard back from the Dallas Dr for our appointment - or from our HMO to see if out-of-network referral will be accepted - but we aren't waiting on the HMO.  

In the reading I've done over the past few days - I'm not very concerned that he needs to be seen right away - however his only symptoms are slight hearing loss, and numbness in his face, leg and tounge.  He doesn't have any dizzyness.  We are expecting to be heading to Dallas next week - and will be calling first thing in the morning.

I've been preparing myself for the possible complications - although I don't tell him.  He's only 37 - and we are very scared.

[kristin]

If you have the facility that took the MRI send it to House, they will usually do it for free. If you want your own copy they might charge you.

Also, I am a medical biller and I would HIGHLY RECOMMEND getting your insurance's approval (IN WRITING) before surgery.

[dgrummer]

Thanks - I think I'll call them tomorrow and ask them to verify the measurements in the report and then send a copy to House.  Maybe the guy just made a mistake on the report and meant 7 mm.

We will get our insurance approval in writing before we proceed with surgery - but we didn't want to wait for consultation with someone who knows something about these things.  I'm willing to pay for the office visit - but certainly need something in writing before we proceed with surgery.

I'm getting past my shock and now moving into the anger mode.  It's been a week and I'm just ready to talk to some Dr who knows enough about these things to tell us what the heck is going on.

Thank you all.

[Kathleen_Mc]

I do hope someone somewhere did make a mistake it is mm not cm but that's one BIG mistake to make. I'm surprised, if it is that large, that your husband wasn't taken right to hospital, here in Canada I think he would have been. Let's all cross our fingers that it is a mistake.Kathleen

[okiesandy]

I don't have any idea or not if you hve ask for a copy of the MRI. I had to ask and they told me I could get one free copy. However, they didn't tell me I could get another until I ask. that made 3 copies altogether. One for me when I left the imiging center, one or the doctor and the one I ask for. They did tell  me it would be 5 dollars a page if I wanted more. it was about $45 to mail ups over night. Believe me I wan on the computer every hour trackiing it.

Dr. Brackman called me on a Sunday afternoon. As he read the report he gave a smaller dimenson than my doctor. I have since found out Dr. Brackman was correct. I have been talking to Dr. Brackman for about 2 1/2 months. It is all free. I had the complication of losing my hearing in my good ear for a brief time. Dr. Brackmann made suggestions as to dosage and lenght of time on steroids. My doctor will not consult with him, however he did follow the suggestion. Grugingly he has admited that if he had an AN he would be tempted to go to Dr. Brackmann. If it is that big you should be able to do some calculations on your own. There is a scale on the film. I used a metal ruler and did some calcuations myself and suspected it was not as large as I was told.

you don't have much to lose by consulting with Dr. Brackmann.  I live in Oklaoma lacking in expertise here. On a forum a lady here said one of the doctors in the clinic here had done over a thousand. I was told in the same clinic that he had done maybe 175. There are three doctors that do this here and all at the same hospital. I bugged the hospital until they told me how many were done each year. Reluctantly. 25 was the figure. the man has bee here 24 years that does not equal a thousand if there are two more doctors doing them. BE CAREFUL. No one does as good a job as consistantly as Dr. Brackmann.  They will try and work with your HMO. You won't have to.

[GM]

Can you get a copy of the MRI on CD-ROM ?   They usually include a reader program.  In there is a measuring devise where you can look at the tumor and get an idea.  I'm with the rest of the posters it seems odd to me that one area of the tumor is so large.  It would seem to me that there might be a typo there where they meant to say "mm" - vs - "cm" 

If those measurements were cottect I would assume that he would have major headaches, balance and vertigo problems, nausea, facial spasms, etc...   Again, don't panic they make mistakes too.  Also, I saw that you didn't want to upset your husband...personally I felt better after being informed, he might too.

Gary

[dgrummer]

thank you all so much.  My husband knows the size - and he's pretty convinced they made a mistake and meant mm.  But he also convinced himself the blob he saw on the MRI before our appointment was a pinched nerve of somekind   We have a copy of the MRI ourselves - and it isn't taking up half his head - so it seems unlikely to be that large.  But then I read someone who was 25 and had a 7+cm with hardly any symptoms - pretty much the same symptoms he has - numbness.  She was admitted immediately to have surgery.

I hope it's a mistake.  What really makes me question is when we 1st saw the neurogolist - who only looked at the MRI image (since the report hadn't been sent yet) - he estimated 7 CM.  I listened closely to say if he was going to say mm, cm or inches - since I didn't know what to expect.  But he said CM.  By the time I got home I had convinced myself I heard it wrong.  Then I got the MRI report myself and looked at it and it too said CM.  But when we say the neurosurgeon - who also only looked at the MRI image - he said it was within the size to consider radiation (2-2.4 cm) - although he had no experience in these and quickly referred us.

As soon as the Dr office opens this morning - I'm calling to verify the numbers and have a copy sent to House.

My biggest frustration is none of the Dr's here seem to know enough to even really talk about it with us - so it's the waiting that I'm getting tired of.  But patience has never been a virtue of mine.

Thank you all again!

[Kathleen_Mc]

Are you getting a referral to someone who does know about a.n.'s? It is very important that the doctor have experience in these type of tumors and depending on where you reside that can mean having to travel a distance, given the "rareness" of a.n.'s (I actually do not believe they are as rare as the stat.'s show rather are often not diagnosed and people live out thier lives with them, they never get to be big enough to be a big problem). Kathleen

[dgrummer]

Thank you all for your replies.  I've had a busy day trying to find out the true size of this thing.  My brother-in-law used his contacts and got another Dr to re-look at the MRI and he confirmed the numbers on the report were wrong.  It is about 2.5 cm - not small - but not gaint either.  That makes so much more sense and seems to be more in line with what we are seeing on the MRI - not that we know what we are looking at.  We at least feel like we aren't in an emergency situation and can take our time doing the proper research.

We are being referred to someone who our doctor said has much experience with these.  We'll see just how much when we talk to him.  Our options were being referred to Dr's here in Little Rock who may see a couple a month - or this Dr who sees many more.

We are also sending copies of the MRI to House for their opinion.

I'm feeling much better now - which is kind of said considering we still have a 2.5 cm AN to worry about :-)....but it's much better than a 7cm one

Thanks again!