Newly diagnosed

[SHunter59]

My husband has just been diagnosed with a left side AN. It is described in the Radiologist report as this:

A densly enhancing mass , 1.7 x 1.5 x 1.4 cm, fills the left cerebellopontine angle cistern, focally deforming the middle cerebellar peduncle and ventral aspect of the cerebellar hemisphere. The disease extends an additional 1.3 cm into the internal auditory canal, completely filling the canal without causing expansion or destruction. No enhancement of the cochlea, labyrinth, or tympanic portion of the facial nerve. No edema in the cerebellum. The supratentorial white matter contains several tiny T2-hyperintense foci, nonspecific. Normal-sized ventricles.

We are still waiting to hear from the specialist who the ENT doc referred my husband too, he has beenn referred to Dr. Sean McMenomy of OHSU in Portland, OR, so in the meantime we are relying on internet research and hopefully you good folks to provide some insight into this medical jargon. The only symptom my husband has right now is complete hearing loss in his left ear. He did have vertigo and dizzyness last month when his hearing spontaneoulsy disappeared but that has gone now. He has no other symptoms. I guess my main question is: what size is his tumor considered, large, medium or small? We have been looking at all options and the one he keeps leaning towards is gamma-knife simply because we cannot afford for him to be off work for any length of time and he also does not want to risk his job as he's a truck driver.

Any and all help you can give would be greatly appreciated, thanks for taking the time to listen

[leapyrtwins]

Hi and welcome to the Forum.  Sorry to hear about your husband's AN, but glad you found us.

An acoustic neuroma of 1.7 cm is considered to be medium.  Both radiation and surgery should be treatment options for your husband, but it will depend on the location of the tumor (i.e., what cranial nerves it's on).

You should contact the ANA for their informational literature; you'll find it very helpful.

People who have radiation typically have a shorter recovery period than those who have surgery, but treatment choice is a very personal decision.  Your husband should do what is best for him.

One of our moderators, Steve Gerrard (sgerrard) is from Portland, OR.  He had CK with Dr. Chang @ Stanford.  I'm sure he'll be along shortly to give you his opinion.

Please don't hesitate to ask us anything; that's what we're here for.

Best,

Jan

[jaylogs]

As Jan said, sorry you had to found us, but if you do search through all the different categories on here and ask a lot of questions, you'll find no better place.  Jan's suggestion on contacting ANA and getting their information packet is excellent, a great starting point.  You'll find that the hardest part of this whole ordeal will be WHAT to do....either surgery or radiation (and watch and wait, depends on a number of things...) and who will do it. A lot of people get a bunch of opinions from different doctors.  A good place to do that is at House Ear Clinic in Los Angeles.  You can mail them your MRI images (on the CD), a copy of the audiogram, and a doctor will call and let you  know his recommendations (for free, no obligations!).  There are also a great amount of very capable doctors around...anyways, you'll undoubtedly get more information than you can process all at once so whatever choice you do eventually make, if it feels good and right, then that is the best choice for you guys. Don't accept anything less!! Good luck and keep posting if you need to...we are all here for you!
Jay

[sgerrard]

One of our moderators, Steve Gerrard (sgerrard) is from Portland, OR.

That would be me.

If you are trying to decode your MRI report, it says something like "you have an acoustic neuroma which has grown out of the internal auditory canal (where it started), and has formed a grape sized tumor in the angle between the top of the brainstem and the base of the brain (the cerebellopontine angle). It is denting things a little, but not causing any alarming stuff." The non-specific white matter mentioned at the end is something the radiologists do as as a matter of record, and is no concern unless it changes in subsequent MRIs.

We have a support group in Portland, which you are welcome to join. We just had a meeting last week, and the next one will probably be in late March or April. From what you have described, it may be quite reasonable to wait that long before deciding on and getting treatment. Dr. McMenomy does both surgery and radiation. He is a surgeon, not a radiation oncologist, but works with the oncologist at Providence GammaKnife Center. There are members of the Portland group who have had both treatments with him.

Welcome to the forum, and perhaps I will meet you in the spring. 

Steve

[moe]

SHunter59,
Steve translated that MRI reading quite nicely! Doesn't sound as scary. It's too bad they can't have a translation like that on the report.
That being said, your husband's options look great for GK or CK. Steve had CK and did great and you have found great advice and support right at your doorstep.
Tell your husband that everything will be OK, it is slow/benign/ non cancerous, etc.... and is away from the brainstem
Welcome, and continue to let us know how things go, OK?
Maureen

[Debbi]

I don't have anything new to add to what my esteemed fellow patients already said.  If you have a chance to attend one of the Portland support meetings, I am sure you will enjoy and benefit from it.  There are some great people in that area and, as you've probably already deduced, we are all quite happy to answer questions and provide general support.

Hang in there.

Debbi - from the "other" coast

[Jim Scott]

SHunter59 ~

I want to belatedly welcome you and respond to your last post by stating, without reservation, that you're welcome - and urge you to re-read Steve's ('sgerrard') post (#3). 

Jim

[epc1970]

SHunter
Just wanted to chime in my welome and let you know that Dr McMenomy and Dr Johnny Delashaw did my surgery and they were both wonderful! My primary surgeon was Dr Delashaw as my tumor was outside the IAC but I do remember Dr McMenomy to be a good guy-both were very down to earth and easy to talk to.  My brother works at OHSU so I flew from Maine to have surgery there and could not be more pleased with my results and how I was treated there!  If you would like to get in contact with either surgeon-they usuallly do AN's as a team-let me know I have their email addresses and assistant contact info. Good luck and kep us posted on how you are progressing.
Erin

[SHunter59]

Thank you all so much for your replies and Steve, thanks for the great translation of all that medical jargon, it really helped. The support group sounds great, sounds like we have time to decide on that. We heard from the clinic at OHSU today and the appointment with Dr. McMenomy is set for next Tuesday 2/2. I will update everyone on what we find out, again thank you, thank you for being here 

[suboo73]

Shunter59,

Just stopping by to also say WELCOME!
Sorry your husband has to join our club, but there are some FANTASTIC folks here as you have already found out! 

Please keep us updated on your husband's next appointment.
And don't forget to take a break from all the information overload!
Sometimes it can be overwhelming.

Take care and prayers for you, your husband and your extended family.
Sincerely,

Sue

[SHunter59]

We have our appointment with Dr McMenomy on Tuesday. Hubby is still leaning towards Gamma Knife and has researched the Gamma Knife Center of Portland. We both like the sound of the Perfexion, not sure how new it is but the website makes it sound very new. Also, a friend I work with has a deaf daughter and Dr McMenomy performed her cochlear implant surgery and she says he is a very nice guy and down to earth. I will come back and let everyone know what happens.

[Tumbleweed]

A densly enhancing mass , 1.7 x 1.5 x 1.4 cm, fills the left cerebellopontine angle cistern...The disease extends an additional 1.3 cm into the internal auditory canal, completely filling the canal without causing expansion or destruction.

I don't wish to alarm you, but taking the report literally, your husband's tumor would be 3.0 cm and not 1.7. That is, the report says the tumor "extends an additional (my emphasis) 1.3 cm into the internal auditory canal" from the cerebellopontine angle. If this is the case -- it may not be, as MRI reports sometimes contain misleading language or (rarely) downright errors -- the tumor borders on "large" classification. More importantly, many doctors will not irradiate a tumor that is over 3 cm in size. So... the practical upshot of this is that there may be more urgency to act if your husband wants radiation treatment. I recommend he find out quickly what the overall dimensions of the tumor are. Then, if it turns out to be 3 cm and he is certain he wants radiation treatment instead of surgical resection, I would get hopping on finding a doctor and treatment center that can do that before the window of opportunity closes.

If I remember correctly, Dr. McMenomy does less than a dozen GK treatments per year (caveat: this was as of 2 years ago). You may wish to find a doctor and facility that performs GK more often. Practice makes perfect, and perfect is preferable when it comes to the brain. This is one person's opinion. You've already heard from at least one other person who was extremely happy with Dr. McMenomy's surgical expertise. My slight skepticism is based only on statistics (his relative lack of experience with GK compared to other doctors practicing elsewhere in the country) and not personal experience.

Three pre-eminent facilities give free consultations and specialize in different treatments for an AN, giving you a wider perspective should you consult all three:
1. Stanford University Medical Center. Both Steve and I (and many others on this forum) were treated with CK by Dr. Chang at Stanford. Dr. Chang performs CK on well over 100 patients per year (over 2 per week on average). He will look at your husband's MRI and offer his recommendation for free. His email address is: sdchang@stanford.edu
2. House Ear Institutue (HEI): Dr. Derald E. Brackmann developed many of the surgical techniques on brain tumors in wide use today. His area of prime interest is ANs. I don't have his phone # at hand but a quick search of Google should yield contact info for HEI. From there, you should be able to find Dr. Brackmann and get a free consultation.
3. For GK, the facility with the most experience is Pittsburgh University Medical Center. They've been doing GK the longest in the US (over 40 years). Last time I checked, they also offer a free consultation.

Again, I don't wish to alarm but only to provoke thought over what is an extremely important (potentially life-altering) choice. GK -- your husband's first choice in treatment -- is, I think, an outstanding one. Hopefully I've given you some helpful information.

Sincerely,
Tumbleweed

[leapyrtwins]

SHunter -

good luck to your husband on Tuesday.

Sounds like Dr. McMenomy is a good choice. 

Please let us know how the appointment goes.

Best,

Jan

[sgerrard]

2. House Ear Institutue (HEI): Dr. Derald E. Brackmann developed many of the surgical techniques on brain tumors in wide use today. His area of prime interest is ANs. I don't have his phone # at hand but a quick search of Google should yield contact info for HEI. From there, you should be able to find Dr. Brackmann and get a free consultation.

http://www.houseearclinic.com/acousticneuromaconsultation.htm

[SHunter59]

In reading other posts on this site about radiation (please see Marianna's post below) and the Gamma knife process the "tail" of the neuroma, the part that extends into the IAC doesn't get added into the overall dimensions when measuring for GK so therefore would not be a factor.  Someone can tell me if this info is misleading? Also, the ENT doctor referred my husband to Dr McMenomy which is the only reason he is going to see him and is going to then ask him for a referrel to the doctors at Providence Medical Center where the Portland Gamma Knife center is located, make sense?


****When evaluating the size for radiation treatment, the relevant dimension is the diameter of the spherical portion inside the CPA. The tail that extends inside the internal auditory canal does not count, since it contributes minimally to the volume.
Radiation oncologists evaluate the volume, which for a perfect sphere would be equal to pi*diameter^3/6. Since most of the times an AN looks like an ellipsoid, they will use the formula pi*(diameter1*diameter2*diameter3)/6.
Based on the size of your AN Nikki you should be within the limits acceptable for radiation.
In the medical literature there are quite a few cases of ANs larger than 3cm being treated, but these reports come mostly from Japanese groups. As everyone else has mentioned here in North America generally the cut off is 3 cm, since beyond that the potential for detrimental side-effects due to swelling increases dramatically. The absolute cut-off I have seen in the literature in terms of volume is about 30 cm cubed, which corresponds to a size of about 3.5 cm in diameter.[/i]Joseph, your situation seems very tricky. I am sorry you already had to endure two difficult surgeries. I remember of one or two more people on the forum with unsuccessful surgeries that had to be repeated. It seems to me that for such a difficult case you may want to seek the most expert surgeons available.

Marianna