Worried about slight increase in size

[alabamajane]

In my opinion,, you still have about 6 weeks to cancel your appointment with Dr Golfinos. I still believe I would keep it for a second medical opinion. Please remember that none of us are doctors on here and are just giving our opinions. We have no actual experience with treating these tumors. does your PCP have experience with meningiomas? Dr Roland and Golfinos do. I would put a lot more " faith" in either of their opinions over ours. But that's just me and my experience with doctors.

Take your time and consider giving a listen to Dr Golfinos' opinion,,( it is Dr Roland's suggestion too) ,,, " if no specialist would recommend surgery" what do you have to lose?? At least you would have an opinion from a qualified doctor,,,

Just my suggestion,,
Hope your PCP can read it for you if that will give you comfort,,,

Jane

[Sheryl]

Hi - when I click on my original post to you the MM board and website come up.  Maybe give it another try.

Even if your CD is labeled "for physicians only", I would try putting it in my computer.  I always check the CD's given to me and my husband especially since, at one time, one was blank!  But blank or not, I really don't know much about what I am seeing plus, they are hugely magnified which is scary.

My schwannoma or acoutic neuroma or maybe even meningioma was found incidentally in November, 2001, when I had a bad headache.  The tumor at that time was .09 mm and felt on second opinion that it was a bit larger (they called it under read).  The headache was a blood pressure problem.  Since that time and also dealing a few years later with breast cancer, the growth has been 6 to 7 more mm's in the 16 years.  The important thing is that I have basically no overt symptoms.  I am supposed to have another MRI in September (every year) which I think is overdoing it with its history.  Plus, hubby's M has just started to regrow a 4th time so we've been concentrating on that.  It's in the left parietal region and he's had two surgeries, two separate sessions of radiation, and now is out of options except for a clinical trial.  We will have more info when we hear from the doctor in Boston. 

You are doing the right thing by researching and checking out other opinions.  Everyone is different so don't let another's history frighten you.

Keep us posted,
Sheryl

[ANSydney]

Carol,

A think we need to know more about your situation. Did you get all your MRIs done at the same place? How many MRIs have you had? Can you get one person to look at all of them and determine the size in all MRIs?

Are Dr Roland and Dr Golfinos both neurosurgeons? If so, why not see the more conservative doctor you first saw. Regardless of what any doctor says, its your body and your decision. Nobody but you has control. Everything is opinion. I like your PCP's philosophy of keep seeing specialists until one agrees that observation is the way to go.

I'm not sure what an internist is in this case, but if they're willing to look at your MRI that would be great. Get them to look at all your MRIs and write down the size in all cases (three dimensions for each MRI).

[Carolgre]

I've had five MRIs - the first one in 2012. I was feeling so complacent (foolishly) that I skipped having an MRI last year. This is the first time I've had any increase in size but from what's I've been reading about meningiomas, their natural history is to grow, slowly, over time. Dr. Golfinos is a neurosurgeon and Dr. Roland is an otolargynologist/neurologist. Dr. Roland, in the beginning, tended to be on the conservative side. I have sent him an email asking if I could meet with him again but he has not replied as yet.

[ANSydney]

Carol,
1) For the 5 MRIs, can you get one person to look at all of them at the same time and determine the size for all MRIs?
2) Were all your MRIs done at the same place and requested by the same person?
3) Does Dr Roland do acoustics neuroma surgery?
4) Did you get a chance to pop your CD in your PC to see if viewing is possible?

I think more importantly than consulting a surgeon at this stage would be getting an independent assessment of the size (in all three dimensions) of the five MRI images. I've sent you a PM on one way of doing this.

[Carolgre]

No, my first MRI was prescribed by my ear doctor. When I described my unilateral hearing loss, he said he suspected it might be a tumor and sent me for an MRI. The second MRI was ordered by Dr. John Roland of NYU Langone. Contacting him for results took forever so for my subsequent MRIs, I asked my PCP to prescribe them. I haven't tried looking at my MRIs yet (I may still do so) and I'm afraid I may misinterpret them and see an increase in size other than what was noted on the radiological report. As to your question, Dr. Roland works in conjunction with Dr. John Golfinos who does do acoustic neuroma surgery. As you in the New York area, too? I am very wary and reluctant to see a neurosurgeon on September 12th and would like to find a doctor who tends to be more conservative. My PCP said he can send me to someone for a second, or even third opinion. I may just ask him for the name of a conservative neurologist and try and make an appointment with him. My PCP is away on vacation so I can't do anything until after August 21st.

[ANSydney]

Carol, you should look at your MRIs. Don't worry about misinterpret them. You can always send me an image of the largest "slice" and I can double check your interpretation. Didn't quite catch if Dr Roland does do surgery.

I'm from Sydney, Australia.

As far as a doctor that is more conservative, Dr Michael McKenna may be a good choice. You can watch a video by him at https://www.anausa.org/resources/videos/support-group-video-library. He's at Massachusetts Eye and Ear Infirmary. He appears to be conservative and is reasonably local.

It's look like your PCP is looking after you. Keep seeing specialists until one agrees to look after you conservatively. In Denmark, 95% of tumors under 2 cm in diameter are conservatively managed. Meningiomas may be different to acoustic neuromas and I don't know enough about meningiomas to comment on the difference.

Above all, relax. Get another MRI in six months if you are concerned.
 

[Carolgre]

Just a brief update. I was told that my PCP cannot look at CDs of my MRI's and that I would have to see a specialist so I guess I'll be keeping my September 12 appointment with Dr. Golfinos. I was told, however, that Dr. Roland (Dr. Golfinois' partner) did look at all of my radiological reports and, because I am asymptomatic, did not feel that Dr. Golfinos would recommend surgery or radiation. They may want to repeat my MRI in six months but I can live with that. Dr. Roland did say that the increase in size was not really that significant.

[alabamajane]

Carolgre,,
Sounds like a good plan!
It's encouraging that Dr Roland looked at the reports and gave you an indication of what Dr Golfinos would recommend. At least you can go to the appointment feeling as if he will agree with your desire not to treat at this time. But it will be a second opinion from a qualified source.

Then if you feel like you want to send your MRI disks to House clinic in LA, CA,, for another qualified source,, you could do that also. I know there are others who will give a phone consult from your MRI disks,,,, these are very good sources for second and third opinions of your situation. All it takes is for you to gather the latest MRI and report and send it to them,  then one of the Doctors will call to discuss your options in their opinion,,, I sent mine to House and had a wonderful call but could not ultimately go out there. But great info!!

But looks like you are getting a good start on proceeding to the correct conclusion for you!!
Best of luck!!
Jane

[ANSydney]

Wonder why your PCP cannot look at CDs of your MRIs. Others on here have no trouble. Is it because your CD does not come with a viewer (most CDs come with the viewer and they are freely available on the web) or your PCP cannot devote quite a bit of time to look at the images. Still think its a good idea to try to take a look at the MRI images to get a better feel.

Great news that the preliminary thoughts are that since you are asymptotic and the increase in size was not really that significant that conservative management is the way to go.

Be careful on relying on radiological reports. Many people have reported errors, including myself. When it comes to size, the best indicator is not a report but an independent measurement, by someone that will not treat you.

Good luck with your MRI in "6 months time".