a comprehensive guide for AN patients
(indented text by AN patients)
MRI: Key tool in AN decision making
Besides making a diagnosis, MRIs are crucial in helping doctors decide what treatment will work for you, because they show the exact size and location of AN.
For those monitoring their AN for growth (wait-and-watching), MRIs are an invaluable way to keep track - see Andy's story.
After treatment, follow-up MRIs serve to ensure that there is no regrowth. They are recommended for all AN patients, at least every five years -- for life.
Lifelong MRI monitoring is particularly important for those with partial AN removal, where regrowth is more likely. The following is from Dr. Jackler's book on ANs:
Following complete excision of an AN we recommend repeat enhanced MRI scanning at 1 and 5 years to screen for unanticipated recurrence. The 1 year study serves as a baseline to identify ... enhancement due to scarring. After incomplete removal, scans are obtained at 1, 3, 5 and 10 years if the residual appears stable and more frequently if growth is noted.
If you have incomplete (subtotal) AN removal, gadolinium enhanced MRI should be able to detect the residual tumor; it is quite sensitive to tumor fragments. However, enhanced MRI is not always able to differentiate the tumor from postoperative scar. Only progressive growth on serial enhanced MRI scans provides convincing evidence of the presence of tumor rather than scar.
MRI monitoring is also important for those diagnosed or suspected of NF2, where new benign tumors are likely. Finally, for those post-treatment patients suspected of having hydrocephalus, the MRI will indicate if there is hydrocephalus -- it is seen as a dilation of the ventricles.
Specialists that work with MRIs
Your MRI is examined by a radiologist, who writes a report to the ENT or the referring physician; the radiologist is the one legally responsible for what's in that report, even though most patients never meet their radiologists. The ENT or referring doctor gets the report, sometimes without seeing the picture, and uses it as a basis for his recommendations.
If your MRIs are done specifically to diagnose or monitor an Acoustic Neuroma, then if at all possible, make sure the radiologist reading your film is a neuroradiologist:
A radiologist must complete additional training to be a neurological radiologist... The neuro guy is the one you want looking for an AN.
Word of caution: Make sure your Drs. look carefully at your expensive MRI's. I was told that I had significant growth because my tumor had developed two parts from Dec '99 to April '00. Last week, while sorting my MRI films, my girlfriend noticed that the exact same two parts were indeed on one of the Dec. '99 films and are still the same size.
Make sure the films are read by a neuro specialist, and don't trust the general radiologist's report from the facility where the films were taken. I had an MRI in March for which I received a report from the staff radiologist at the local hospital stating "no change" from the MRI a year earlier. My mother and I (both lay people) looked at the films and agreed that it looked like the tumor had grown, which was confirmed by 2 doctors at the House Clinic... By the way, I complained about having to pay for the radiologists's incorrect interpretation, and the hospital actually refunded the entire amount I paid for the MRI itself.
For those just diagnosed, many AN specialists will look at your MRIs for free. This allows you to consult with specialists far away without leaving your home:
If you are not near Johns Hopkins or Staten Island, Dr. Williams and Dr. Lederman will analyze your MRIs, if you mail a copy to them, and give you their opinions. If you want an experienced surgical opinion, I have sent copies of mine to Dr. Brackmann as well. All of these doctors do not charge for this service if you do not consult with them in their offices. They do this for anyone who mails them their MRIs, hearing tests, ABR tests etc.
Copying and shipping your MRIs
Copies of your MRI scans can be made for you to keep, if you request. They look a lot like X-ray images.
You can have copies made of your MRIs, I have done so many times. The radiology department where you have your MRIs will make copies for you at a fee. They were able to do that for me on very short notice.I just finished getting 3 copies of my MRI, to have a set for my own future use should that be necessary ($35/set) I think they will keep reasonably well as long as they are kept away from light, moisture etc...
Costs of MRI copies vary greatly, so you may want to consider this cost when deciding where to go for MRIs:
Our local hospital just started the policy that when MRIs are done they automatically print out two sets of films and give one to the patient (no extra charge!!!). This is a great policy since I had to pay to have copies made of my first MRI and it cost me $150 out of pocket since my insurance would not cover it.
Nowadays, digital copies can be made on CD ROM instead. Some places will insist on using the traditional format, while others will be happy to accept the digital copies:
They were used at SIUH and TJU [Thomas Jefferson University in Philadelphia], and by me also. The main problem I had was that there were so many pictures, it took me a while to figure which ones were relevant... it might be faster to look at films.
For those who want the world to see their AN, here is how one patient took photos of his MRI, to place on the web:
I placed the MRI against a north-facing window with white computer paper behind it. The photos were shot using B&W film ASA 100 and using the camera meter. The scanner used was an $89 UMAX Astra 610. Even though I used B&W prints the better results came with setting the scanner for color.
You can ship MRIs by any carrier; Fed Ex will even supply a special envelope included in their costs! For those treated far away, you can also mail in MRIs for follow-up consultations:
As far as follow up goes, I am having mine in the UK and will send copies of the MRI scans to Dr Lederman at SIUH for his opinion as necessary. He often works in this way.
MRI Equipment and Techniques
Gadolinium, an iodine-free contrasting agent, is usually administered half-way through the MRI process, or else the AN may not show up.
I had MRI with and without gadolinium to diagnose my AN. On the MRI with contrast, the AN glows like a light bulb and you couldn't miss it. On the MRI without contrast, it is very difficult to find the AN, unless you know just where to look by comparing to the MRI with contrast.
On some newest MRI machines, gadolinium is no longer required.
I asked them about Gadolinium... they told me that they had a new machine which shows up everything including individual nerves with no need for Gadolinium. The results were first class, confirming their claims.
For MRIs after surgery, fat suppression technology is recommended:
Someone was talking about some MRI-apparent regrowth after surgical removal... There is a special MRI which would screen out the muscle packing put into the created opening over the IAC; the technique is called "fat suppression." A normal MRI might give the impression that the little piece of muscle tissue, grafted from elsewhere, was tumor regrowth.
Not all MRI equipment is the same.
For those of you who are clostrophobic, or up there in weight, you should consider calling your imaging center and asking if they have the Toshiba OPART open MRI. It produces very high quality film and your time on the table is about 30 min. total. It is the the only open, super conducting, .35 tesla magnet around. It has a sound system that will play CD's or tapes, and the technician can talk to you when needed.
I searched for one in the Boston area by going to the Toshiba website. I found two and immediately changed my appointment location for last week's MRI. It was a dream come true for us claustrophobes. It is like a small four-poster bed. You can see out of all sides. I was relaxed and perfectly capable of lying there for as long as it took. The last MRI [before this], I was a wreck for the entire procedure.
Last Edited: Sunday, November 16, 2003