ANA Discussion Forum
General Category => Inquiries => Topic started by: SHunter59 on January 25, 2010, 09:47:39 pm
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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 :)
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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
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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
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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
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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
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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
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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
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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
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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 :)
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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! ;D
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
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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.
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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
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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
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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
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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
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Hi,
I was preparing an answer for this thread and I just realized that you have done your search already.
So yes, I want to reiterate that I have checked and double checked what is the relevant measurement for radiation. I have also asked the Drs at the Cyberknife forum. The general consensus is that the portion that is located in the CPA is relevant when judging the cutoff for radiation. BUT the shape can also be important - the less spherical it is, the more difficult it is to map treatment. So only a qualified radiation oncologist can judge each individual case. Also, it is my personal observation from reading posts on this forum that neurosurgeons will tend to report the largest size (including the portion inside the IAC), whereas radiation oncologists may report only the portion in the CPA. This can be the cause of big discrepancies in the reported size and a lot of confusion.
I can see Tumbleweed's point about your husbands' measurements: An "additional" 1.3 cm seems a bit too much. For example my AN (which I consider "large", is 2.9 cm in the transverse direction with "only" an additional 0.5 cm in the IAC.). So I wonder how exactly the radiologists measures the additional 1.3 cm. As mentioned before, the only way to figure this out is to talk to a qualified specialist. And I will agree with TW, the sooner the better, given the uncertainty about the size.
All the best,
Marianna
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Thanks Marianna. I will come back after the appointment on Tuesday and let everyone know what happens. Hopefully we will be able to get a referral to the docs at the Gamma Knife Center sooner rather than later.
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Took me off guard to see my name and Marianna's post here.
I was turned down for radiation Shunter, due to the size of my an and the location. However I did send my discs to a radiooncologist in Illinios on the Cyberknife forum (Clinton Medbury) and he advised that they would recommend radiating the tumour.
It depends on the doctor and the size.
All the best of luck and good searching,
Nikki.
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I can see Tumbleweed's point about your husbands' measurements: An "additional" 1.3 cm seems a bit too much. For example my AN (which I consider "large", is 2.9 cm in the transverse direction with "only" an additional 0.5 cm in the IAC.). So I wonder how exactly the radiologists measures the additional 1.3 cm.
All the best,
Marianna
A couple things might be going on here that led to the 1.3cm measurement for the IAC. First of all, the length of the IAC can vary quite a bit from person to person. If I remember correctly, 1.3 cm is about the maximum normal length, and measurements well under 1.0 cm (as low as 0.6 cm, if I remember correctly) are also normal. So SHunter59's husband just might have an IAC that's on the long side of normal.
Secondly, not all ANs completely fill the IAC as they balloon out in the CPA. In particular, an AN that originates in the CPA may not grow laterally completely to the extent of the fundus (the bony partition separating the IAC from the labyrinth), or lateral extent of the IAC. My medium-size AN was about 2 mm away from the fundus of my IAC when it was first diagnosed. So it's possible for an AN to extend only 0.5 cm into the IAC and not completely fill it.
Unless I'm mistaken, the single greatest factor for determining whether or not radiation can be applied to an AN is how much the brainstem is involved (i.e., in the way), and not necessarily the volume (someone please correct me if I'm mistaken). This is why I stressed that it's important to find out the overall measurement, including that portion which is inside the IAC: if the total transverse measurement is close to 3 cm, the patient may be close to the threshold for being denied radiation treatment.
Best wishes,
TW
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Happy to report hubby is a good candidate for gamma knife, please see post "Good news"
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Your husband's AN is considered on the small size, which is a good thing. It was caught early. They grow very slowly. My AN is 3cm in size and I was told that I probably had it for 10 years before diagnosed. Gamma Knife is a good option since it is so small and he probably will recover fairly quickly since there is no surgery involved with Gamma Knife.
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Hi all, just wanted to give an update. Hubby had his consult with Dr. Bader at the Gamma Knife Center in Portland and we had our tour of the place. They have the fairly new Perfexion machine here and it was quite surreal standing in the room with Dr. Bader checking it out. The staff are all great and the Doc didn't speak down to us but was very open and friendly. He said that this was definitely the way to go and if it were him he would choose this option every time, no question. So, hubby's Gamma Knife is scheduled for this Thursday March 11th and at this point, while not actually looking forward to it, he's not anxious at all, but wants it over with. I think more than anything he's looking forward to having a 5 day weekend, LOL...I will come back and let everyone know how things go after it's all over with :)
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Sounds good. It will be easy, nothing to worry about on the day of treatment. I put your treatment date on the AN Calendar, too.
No word on the next Portland group meeting yet. I better get on that I guess...
Steve
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Good luck this week. Should be a "piece of cake" :)
Maureen
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Best wishes for your husband, and to you. We'll all be pulling for you.
GammaKnife is an excellent treatment choice. Your husband should rebound really quickly, and may not notice any side effects at all from the treatment.
Please let us know how it goes.
Best wishes,
TW
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Hi all, well hubby had his Gamma Knife yesterday and I can't say enough good things about it. It was a piece of cake from start to finish, the doctors, nurses and staff at the Gamma Knife Center of Portland were fantastic. We were only in the place about 3 hours from start to finish, hubby declined the relaxing medication, he said he didn't want to feel drunk all day and wasn't anxious about the treatment, he just wanted it over with, LOL...Since they didn't have to wait for the meds to take affect we were only in there about 1/2 hour when Dr. McMenomy came iin to fit the frame. He didn't ask me to leave but when he started opening syringes I decided it was about time to scurry away, while not squeamish I really didn't want to watch so I went back to the waiting room until he was done with everything and hubby had been for his MRI. His actual time in the Gamma Knife machine was an hour and Dr. Bader had said that his tumor was a good size for the planning, which didn't take them long to do. Hubby is doing fine today and aside from a slight headache and two little spots on his forehead(our daughter has zits bigger) you wouldn't know anything had happened. There were two other patients of Dr. McMenomy getting treatment yesterday also, both Acoustic Neuroma patients, must have been AN day at the Gamme Knife Center, LOL...Since everything went so smoothly I HIGHLY recommend this avenue of treatment to anyone out there who still may have concerns. Hubby feels exactly the same way, he had some dental surgery a few months ago and said that was harder by far. Again, thanks everyone for your help and support, I guess hubby can be called a Postie now :)
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SH ~
Congratulations to your husband on his trouble-free Gamma Knife treatment. Yes, he certainly is a 'post-toasty', now. :)
Most guys like to just get these kinds of things over with and apparently that is exactly what happened, yesterday, in your husband's case. Bravo to him - and to you, too, for your steadfast support.
Jim