ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: frank on May 26, 2009, 02:11:25 pm
-
Hi
I have not posted in awhile so I need to update my status.
Last month I had my yearly MRI to check for growth. My hearing test showed no change. The MRI shows the AN has grown and the Doctor reading the MRI is now using terminology that I am not familiar with. The report states that "there has been slight interval increase in size of the enhancing mass in the right internal auditory canal, now with a small mushroom shaped component that extends into the the right cerbellopontine angle cistern at the level of the porus acusticus internus." "The maximum traverse dimension is 1.2-1.3 cm, is approx. 6 mm in AP diameter in the intracanalicular portion and 5 mm in superoinferior dimension. The CP angle component measures 7-8 mm AP diameter and approx. 3 mm in traverse diameter." Can anyone explain what this means in simple layman terms that I can understand?
My local ENT seldom sees a patient with an AN so he hasn't been able to provide me with much in the way of explanation and guidance. Two years ago, when we first discovered my AN problem, he referred me to Dr Charles Woods in Syracuse who is a surgeon. I believe Dr Woods is associated with the University. (MY ENT refers to him as the "Professor".) I guess I have been using Dr Woods as a consultant to explain my options. On my initial visit in 2007, we discussed "watch and wait". We also discussed radiosurgery as the best course of action for a person my age (71) - when and if the time comes that I need to have something done. Dr Woods does not perform radiosurgery. I have an appointment with Dr Woods on June 5.
I am now at the point where I think that I should have something done, even though I feel well. I consider myself to be good shape. Having been a competitive swimmer in college, I still swim 300 to 400 laps every week, year round, for exercise. In the summer months I play a couple of rounds of golf every week. The only symptoms I seem to have is the constant tinnitus in my right ear and difficulty in group settings where there is a lot of background noise and/or many people speaking at the same time.
After reading all of the posts for the past two years, I am leaning toward CyberKnife as a preferred treatment approach. I am hoping that Dr Woods, who does not perform this procedure, might refer me to a facility that does. Two years ago when I met with Dr Woods, he mentioned a facility in the Binghampton, NY area (77 miles away) that performs radiosurgery. My online research shows that the Cyberknife Center of New York in Johnson City, NY as a center that may be suitable. Anyone have any experience with this facility?
That's about where I stand today. Would appreciate any comments or words of wisdom anyone cares to make. Thanks in advance.
Frank
-
frank,
great to see you back! glad to hear you have been doing well and will try to help you here.
"The report states that "there has been slight interval increase in size of the enhancing mass in the right internal auditory canal, now with a small mushroom shaped component that extends into the the right cerbellopontine angle cistern at the level of the porus acusticus internus." "The maximum traverse dimension is 1.2-1.3 cm, is approx. 6 mm in AP diameter in the intracanalicular portion and 5 mm in superoinferior dimension. The CP angle component measures 7-8 mm AP diameter and approx. 3 mm in traverse diameter." Can anyone explain what this means in simple layman terms that I can understand?"
Ok, here goes.....
the right internal auditory canal (think of a straw on its side) contains part of the AN... .but towards the end of the "straw"..... with another hint of the AN sticking out (in a mushroom shape) of the end of the "straw", into the Cerbellopontine Angle Cistern (CP Angle region).... so, in laymen's terms, it is sticking out but the good news is this... its still deemed small (1.2 - 1.3cm)... and it still gives you options, should the time come that you decide on doing anything about it. What I would like to know is what does the radiologist mean by "slight interval increase in size"? We know head MRI's have (on average) a total margin of error of approx 2mm. Now, different docs/radiologists may give different measurements and many factors will weigh in when doing measurements of an AN.... so, does he mean slight growth within the total margin of error of approx 2mm? Not sure exactly how much of a difference he is noting from past MRI's and were they measured by the same person?
So, that is about as laymen as I can get... btw, it's not a "bendy" straw :) (oh, work with me.. trying to make you feel better!)
More good news, no interference with the brainstem... so, another blessing.
I have not had experience with the CK center you note, but a few of us have had it done in Boston, MA. You can also check with the docs on the CK Patient support forums (they volunteer their time there) at: www.cyberknife.com, so you can get answers to your specific questions about the facility.
I hope this helps... and please hang in there. Glad to see you again!
Phyl
(addendum: Ok, Frank, just read your signature line and you are noting some AN measurements from the past 2 years... so, if your AN was 10mm (10mm = 1cm) 1 yr ago and now it is approx 1.2cm... then, you are at the total margin of error for head MRI's at approx 2mm... so, all in all, not really doing much of anything... you are within the total margin of error for the past year... I'd take that as good news... truly! Phyl)
1st MRI 8x5x6 mm 4/07
2nd MRI 10x5x5 mm 4/08
3rd MRI 4/09 1.2 cm
-
Frank:
Thanks for posting. I'm not a physician (and neither is Phyl) but I agree with her astute observations. Her explanation of your MRI report was excellent. Your AN is quite small, your symptoms are relatively mild and not increasing, which is a good sign. You certainly seem fit, which is a plus. I wouldn't be anxious to rush into irradiation treatment but if you are advised by a physician to do so and the idea seems prudent to you, be prepared to travel some distance to obtain the best treatment by the most experienced doctors. That would be physicians - usually radiation oncologists - who have lots of experience treating acoustic neuromas and have a good success rate with the patients they've treated. I suggest that if you seek CyberKnife treatment, try not to limit yourself to a narrow geographical area. The cost of (inadvertently) choosing an inexperienced doctor can sometimes be catastrophic for the patient. Be informed and open to travel. It's worth it.
Jim
-
My online research shows that the Cyberknife Center of New York in Johnson City, NY as a center that may be suitable. Anyone have any experience with this facility?
Frank,
Both Phyl and Jim have eloquently given you some feedback relative to your post.
The only thing I might add is that you post this question in the Physician section with Johnson City, NY in the byline.
That being said, I am also of the mindset that sometimes the short term inconvenience is worth the longterm outcome by being able to use a doctor with experience in the type of treatment you seek.
All the best,
Kate
-
Phyl:
Thank you for the straw analogy. To me it seems like the internal auditory canal (the straw) contains the AN and then it mushrooms out at the of the auditory canal.
The MRIs were not read by the same Doctor. In fact, the facility where I had the most recent MRI performed was not the same due to some issues with my medical insurance.
Jim:
Appreciate your comments about not being afraid to travel to a facility with lots of experience in treating ANs. I admit that so far I have been trying to stay close to home - but living in upstate NY may not be the ideal local for finding a nearby Center of Excellence. I will be doing further research into this in the near future.
Kate:
Thanks for the suggestion that I post my question about the Johnson City NY facility in the Physician section. If my upcoming appointment with Dr Woods in Syracuse results in his still mentioning the Johnson City facility, I will follow your suggestion.
-
Phyl:
Thank you for the straw analogy. To me it seems like the internal auditory canal (the straw) contains the AN and then it mushrooms out at the of the auditory canal.
The MRIs were not read by the same Doctor. In fact, the facility where I had the most recent MRI performed was not the same due to some issues with my medical insurance.
Hi Frank,
My bad by not starting my original post by noting I'm not an MD, but.... have read too many MRI's (of my own, with dr's assistance) that I've learned over time... .like many on this site.
You are correct, from my understanding..... the "straw" contains a portion of the AN with the rest of the AN, sticking out at the end of the "straw"/IAC (internal auditory canal) in a mushroom shape (mushroom "stem" still in the IAC, then blooms out as mushroom cap in the CP angle region).
We have discussed and learned that different facilities may use different MRI machines... which then may result in different "interpretations" of the films by different doctors. I can share with you that my CK radio-onc does one measure of my AN... then, the CK neuro-onc (on the same CK team) will measure my AN and it turns out different than what my radio-onc measures. It can depend on angle to angle measurements... oh, so many different factors, thus, the total margin of error of the MRI reads. I take what my 2 docs say, then do an average and figure it's close. Most importantly, they both tell me my AN is "done deal", so I go for that! :) Docs have shared with me that the only true way to get a precise measurement is by cutting/taking it out. Thus, another reason for the total margin of error with the films.
Hang in there! Glad to help.
Phyl
-
Need this part to make sure I get my description ...
"there has been slight interval increase in size of the enhancing mass in the right internal auditory canal, now with a small mushroom shaped component that extends into the the right cerbellopontine angle cistern at the level of the porus acusticus internus." "The maximum traverse dimension is 1.2-1.3 cm, is approx. 6 mm in AP diameter in the intracanalicular portion and 5 mm in superoinferior dimension. The CP angle component measures 7-8 mm AP diameter and approx. 3 mm in traverse diameter."
I am no doctor but can provide my input on what I know about intracanicular tumors - and what I have been told.
I have been told that I needn't seek any treatment (assuming no other symptoms aside from hearing loss/tinnitus) until the tumor reaches approximately 1.5 cm extracanicular. At this point, my tumor is 8mmx5mm - all intracanicula. I haven't even gotten to the starting line. Your tumor now has reached the starting line with an extracanicular portion that is 7-8mm by 3mm. You have a fair bit to go before you reach that 1.5cm (and could be as large as 2 cm before being pressed for treatment). So, you shouldn't feel that you need to seek treatment if your ENT is saying you can continue the watch & wait (and symptoms are manageable).
I am 37 years old and am being strongly encouraged to wait so don't think your watching pattern is solely based on the few extra years you have on me (bet you are in better shape!)
So, I guess my words of wisdom are - no need to seek out treatment if you are happy with watch and wait. Treatment will more than likely not help your hearing improve and may cause it to worsen quicker. This tumor may never reach a size where it needs treatment. But, do agree, that a good experience team is critical to the success.
-
Frank,
Agree with previous comments about getting "experienced advice". i wish i had done that originally.
Having an AN is horrible and a very specialised treatable problem but make sure you get the right advice from those well versed with AN's.
Laz
-
Hi Keeping Up.
Thank you for sharing this. As we know, "individual results may vary" and each situation is unique onto itself. There does seem to be a big discussion as to when to treat AN's. I've heard some mention what you have shared... I have heard docs mention only when an AN becomes "symptomatic". I have not heard any specifics anywhere (maybe someone else can chime in on this) about it being a certain size extracanicular (ie: once it hits 1.5cm)... as it may depend on exact location as well. I totally agree that if all concerned (the patient, the docs) are noting that no need for treatment if its not doing anything, but.... I would suspect it also has to be based on the particular situation/patient and the symptoms, rate of growth, direction of growth, exact growth location, etc.... (ie: many personal factors).
Your's is still small (at 8mm) and genuinely hoping it stays that size and no further symptoms arise. :) Truly... let's hope it literally does "nothing" :)
Continued wellness wishes! :)
Phyl
-
Hi Phyl
I completely agree - many personal factors - just sharing my information that I have heard.
Frank hasn't suggested any medical professional has encouraged him to seek treatment so I assumed sharing my individual results may provide some confidence that perhaps no treatment for several more 'mm' is not necessarily out of the ordinary. Obviously, I wouldn't take my word but if interested would raise with the doctor who is providing the AN guidance.
You make a good point about the extracanicular tumor - I have read very little on this site about distinguishing between intracancicular and extracanicular tumors. I would be curious if anyone else has heard about the exclusion of the intracancicular portion when measuring tumors and suggesting treatment options if size was the only issue and assuming that intracancicular tumors aren't close to the brainstem (i.e. I have been told that I would be encouraged to seek treatment when the tumor reaches extracanciular measurement of 15mm or 1.5cm.)
So - just sharing my opinion. I want to hear as much as possible from those in the watch & wait category - what and why they were told to do so something or not do something. I won't believe all of it without backing from my doctors, but appreciate the information.
Ann
-
Hi Frank! So good to hear from you.
I too am in W & W and here is how the doc described my tumor - 1/2 in and 1/2 out of the ear canal!
Not only that, but said it us 'technically' already touching the brainstem, which i didn't think would be correct at about 1 cm.
(Guess i better go look at the MRI pictures again!)
Then he says - 'ok, your tumor looks unchanged after 6 months, but i will be REALLY interested in the next MRI in Dec. 09'
Oh my gosh! - And his final words - 'I would advise doing something (treatment) when it reaches 1.5 cm.
(I am 53 years old.)
-----------------
Well ok then, doc!!! - i was surprised by the when to do treatment statement. And, i have a sister with an AN at 2 cm + who has not had treatment yet....
-----------------
So let me just say that i think the others before me have accurately described your AN in layman's terms.
Most importantly, i would encourage you to seek an experienced doc as well.
I live in Virginia and have been to John Hopkins and UVA. But if i seek treatment, i am thinking CK and Stanford, CA. If that is not possible, then D.C.
I believe you have many good options not too far away. I don't know about you, but i am very picky about this whole treatment thing because it is MY brain!
Please keep us posted! I hope you find the answers you need. :)
Sincerely,
Sue
PS I have had only 2 MRIs on 2 different machines - the last had a 1 mm difference, so it was not significant. I am sure it would be good to stick with one machine as much as possible, so i will try to do that in the upcoming days.
-
You make a good point about the extracanicular tumor - I have read very little on this site about distinguishing between intracancicular and extracanicular tumors. I would be curious if anyone else has heard about the exclusion of the intracancicular portion when measuring tumors and suggesting treatment options if size was the only issue and assuming that intracancicular tumors aren't close to the brainstem (i.e. I have been told that I would be encouraged to seek treatment when the tumor reaches extracanciular measurement of 15mm or 1.5cm.)
Hey Ann,
totally agree as I have not seen much here (after 4+ yrs) noting extracanicular AN's. Thought...... maybe start a new discussion in "AN Issues" inquiring about those that have been diagnosed with extracanicular AN's and see what the docs are saying. I'm curious if there has not been much on it iin the past as maybe most are diagnosed with a higher % IAC vs. EAC. If you want, go ahead and start the discussion....... and let's see how the responses go. Maybe worth a shot and we can learn from it! :)
Phyl
-
Hi Frank - I'm a 7-1/2 year W&W for a 9th cranial nerve schwannoma - like an AN but not on the 8th cranial nerve. It started out at approximately 9 mm in November of 2001 and last MRI (11/07) was approximately 13 mm and not causing any problems. Between my husband, who had another type of benign brain tumor (a meningioma) surgically removed and then CyberKnife upon regrowth and myself, we've seen numerous doctors. The one common comment from all of them was "try to have your MRIs done at the same machine/facility". Since we split our time between Cape Cod and Florida, this has been difficult so the margin of error (1-2 mm) really enters into our readings.
Keep us posted,
Sheryl
-
possible-of-interest read:
http://www.cyberknife.com/Forum.aspx?g=posts&t=1774#jumptobottom
Dr. Medbery, when asked about the total margin of error, noted the last comments in the thread:
"radsrus Posted: Tuesday, May 19, 2009 8:06 AM
Joined: 10/10/2008
Posts: 859
There are a lot of reasons measurements can differ, including at least different window/level settings, different slices on which you measure, inaccuracy in placing the points of measurement, choosing different places to measure. I think 2 mm is a conservative estimate of the differences
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102"
-
Hi there,
After reading these posts I started thinking, my AN is moving downward toward the auditory canal as opposed to the other way around toward the brain stem. It will affect the facial nerves eventually. However, my Neuro. When I did the conversion between cm and mm. it seems that the size in total is 19mm. I am not sure if this is the right way to take the measurments, but the MRI read 1.9 cm by 1.5cm by 1.6 with 8mm into the ICA. When I told the neuro that I did not want to lose the window of opportunity for radiation, he said I still had 4mm to go. Does this sound right?
My MRI was taken in Buffalo in an open machine and the Neuro said that he measured it himself on his computer and the measurements were correct. Does this sound right?
Vivian
-
Hi there,
After reading these posts I started thinking, my AN is moving downward toward the auditory canal as opposed to the other way around toward the brain stem. It will affect the facial nerves eventually. However, my Neuro. When I did the conversion between cm and mm. it seems that the size in total is 19mm. I am not sure if this is the right way to take the measurments, but the MRI read 1.9 cm by 1.5cm by 1.6 with 8mm into the ICA. When I told the neuro that I did not want to lose the window of opportunity for radiation, he said I still had 4mm to go. Does this sound right?
My MRI was taken in Buffalo in an open machine and the Neuro said that he measured it himself on his computer and the measurements were correct. Does this sound right?
Vivian
Hi Vivian :):
10mm = 1 cm, so you are correct that 1.9cm does equal 19mm.
Typical standards (approx) for radiation of AN's is up to 3cm (slight few AN's known to have radio treatments after 3cm in size, but very rare.. .and typically, surgical treatments are done). As for your case, since it's not an AN, I cannot answer and the docs are best to answer.
I've had open and closed MRI's but each machine is different. If your team uses the same MRI machine repeatedly... then, their measurements are fairly accurate but again, it may be the same machine but different people doing the film reads.. and as Dr. Medbery noted in his post that I shared here, there are factors involved. To me (whether right or wrong), I'd rather have a doc note to me that they are confident in the read of the size of the growth but again, there is a margin of error in the reads, but should be fairly close to accurate.
Not sure if this helps.
Phyl
-
Hi Phyl,
Thanks for replying. My next MRI is on Sep 17/09 in a closed machine where my Neuro. is located. He was pretty confident that I could wait and was within the normal margin for radiation which is I think what you noted as well. So I figure, even if there is a slight difference, I think I will still be within the margins othewise I hope he would have discussed this with me as I made it clear to him that I didn't want to lose the window of opportuniy for radiation treatment. I actually sent my measurements to Dr. Medburry at some point and he thought that my AN? acoustic meningioma was very small still, but I see others with smaller ones getting treated. It's very confusing. I don't know. I need to stop thinking about the what if's. as I think I am on my way to insanity, but you would never know by looking at me which is a good thing. Thanks again. You are always there to help. We need to come up with a trophy for you. Maybe one from Canada, one from the US and one from any other part of the world. What do you think?
Vivian
-
Hi Ann and Phyl:
Ann may have brought up a significant topic of discussion regarding AN tumors that are both intracanicular and have an extracanicular portion. An extracanicular (ECN) size of 1.5 cm as a possible limit for initiating treatment also seems to be info that may not have been discussed in this forum before. Thank you both for your info and comments. I plan on mentioning this when I meet with my Doctor in two weeks.
Frank
-
Hi Phyl,
Thanks for replying. My next MRI is on Sep 17/09 in a closed machine where my Neuro. is located. He was pretty confident that I could wait and was within the normal margin for radiation which is I think what you noted as well. So I figure, even if there is a slight difference, I think I will still be within the margins othewise I hope he would have discussed this with me as I made it clear to him that I didn't want to lose the window of opportuniy for radiation treatment. I actually sent my measurements to Dr. Medburry at some point and he thought that my AN? acoustic meningioma was very small still, but I see others with smaller ones getting treated. It's very confusing. I don't know. I need to stop thinking about the what if's. as I think I am on my way to insanity, but you would never know by looking at me which is a good thing. Thanks again. You are always there to help. We need to come up with a trophy for you. Maybe one from Canada, one from the US and one from any other part of the world. What do you think?
Vivian
Vivian... nothing needed.. :) But thank you for the kind words... truly appreciated more than you know. :-*
Another issue you note... which Frank/Ann noting about extracanicular.... Vivian, you are noting about the "what if's" while in watch/wait mode. I have seen so many (myself included in a MAJOR way) share here about the "what if's" and how to deal with all the info overload we read, whether here on the ANA forums or other medical websites. Maybe a new discussion in the "Cognitive/Emotional" forum... as its an emotional ride... "dealing with the 'what ifs'".... just a thought... if you want to initiate it, please do. Many will probably participate AND... take away valuable info as well :)
Phyl
-
Hi i have ben watching my 2 cm tumor for 14 months now with no change in symptoms or tumor size. According to Doctor Mckenna at Mass Eye and ear as long as things remain the same then it is up to me to decide if I want to continue as a watch and wait patient. i share your feelings of wanting to seek treatment now but am afraid to do so. In reading other posts it seems that once our decision is made there will be less stress. Peace Dave J
-
Hi i have ben watching my 2 cm tumor for 14 months now with no change in symptoms or tumor size. According to Doctor Mckenna at Mass Eye and ear as long as things remain the same then it is up to me to decide if I want to continue as a watch and wait patient. i share your feelings of wanting to seek treatment now but am afraid to do so. In reading other posts it seems that once our decision is made there will be less stress. Peace Dave J
Hi Dave J! I just wanted to say hello and welcome - i am sorry you had to join this club, but there are WONDERFUL folks here! ;D
I am here with my sister, she found out first she had an AN, but i had symptoms longer and was misdiagnosed.
Anyway - W & W is crazy sometimes ::) Thank goodness we are not alone!
----------------
Forgive the hijack, Frank! I am still reading this thread - lots of great topics here and things to think about!
Sue
-
as long as things remain the same then it is up to me to decide if I want to continue as a watch and wait patient
I think that is what watch and wait is all about. More than how big it is, what really matters is whether it is growing or the symptoms are getting progressively worse. Once you establish that it is on the march, it is generally better to treat it sooner rather than later. But if it is reasonably quiet, just keep watching and waiting, and you may never need to treat it at all.
Steve
-
The report states that "there has been slight interval increase in size of the enhancing mass in the right internal auditory canal, now with a small mushroom shaped component that extends into the the right cerbellopontine angle cistern at the level of the porus acusticus internus." "The maximum traverse dimension is 1.2-1.3 cm, is approx. 6 mm in AP diameter in the intracanalicular portion and 5 mm in superoinferior dimension. The CP angle component measures 7-8 mm AP diameter and approx. 3 mm in traverse diameter." Can anyone explain what this means in simple layman terms that I can understand?
Frank, I believe the "interval increase in size" merely refers to the fact that the tumor appears larger in the latest MRI compared to the immediately preceding one. MRIs are taken at intervals, typically six months. Hence, the jargon. The cerebellopontine angle (CPA) is a roughly triangular, empty space bordered on one side by the cerebellum, on the second side by the pons (part of the brainstem), and on the third side by the inside surface of the skull (on your right side). The word "cistern" in "cerebellopontine angle cistern" is somewhat redundant. Cistern simply refers to the space inside the angle (versus one of the outside surfaces of the angle). Since the internal auditory canal (IAC) in most people is between 0.7 and 1.2 cm long, and your tumor is 1.2 to 1.3 cm in (horizontal) length, it makes sense that it would now be protruding slightly into the CPA -- there's nowhere else for it to go as it grows larger, as the fundus (or lateral/towards-the-outside extent) of the IAC is basically a bony dead-end with only tiny holes in it for the cranial nerves to pass through (coming from the inner ear, or labyrinth). If I remember correctly (take this next part with a grain of salt), the porus acusticus internus is a small hole at the medial end (the end deeper inside your skull) of the IAC, out through which the facial, hearing and vestibular cranial nerves traverse into the CPA and on their way to the brainstem. Your tumor is 6 mm across in the AP (antero-posterior, or front-to-back) plane in the intracanicular portion (that which is inside your IAC). [Note: more exactly, this measurement -- like the other two tumor measurements -- is taken obliquely , or at an angle, and not necessarily exactly along a horizontal plane from front-to-back, in order to measure the greatest diameter in that approximate plane.] Outside your IAC, the tumor balloons slightly to 7-8 mm, only because it's now outside the restrictive bony canal that is the IAC and is free to expand in the empty space that is the CPA. Inside your CPA, the tumor measures 5 mm across from top to bottom -- this is the superoinferior dimension noted in the report; it is more commonly referred to as the (oblique) craniocaudal measurement in MRI reports. I'm not exactly sure what the "3 mm in traverse diameter" comment refers to. It most likely means the extracanicular (CPA cisternal) component of the tumor -- as measured along the oblique transvere plane (i.e., from medial extracanicular extent to lateral extracanicular extent) -- is 3 mm long; in plain English: the portion of the tumor that is outside your internal auditory canal and in the CPA angle is 3 mm as measured from the point it exits your IAC to the point where it presently terminates at the other end (at the deepest point inside your skull, closest to the brainstem).
I have seen such hazy jargon in my own MRI reports (not the ones originating from Stanford, which are very rigorous). Sometimes, the MRI report may even include erroneous language. For example, my first MRI report stated that the medial extent of my tumor was 1 to 2 mm away from the fundus of my IAC, which is impossible (that would've placed the tumor completely inside my labyrinth and not in the IAC). I pointed out to the medical staff that someone had apparently written "medial" instead of "lateral" (the correct word), and they agreed it was a mistake. Similarly, I have seen different radiologists refer to that part of the tumor that was inside the IAC (instead of that which was inside the CPA) as the "cisternal" portion of the tumor. Who is correct? A cistern is basically an enclosed area; both the IAC and the CPA are enclosed. You need to read the MRI report and grok what the radiologist is trying to say, because he might use his own language that differs from how another radiologist might describe the tumor.
Anyway, I hope this clarified for you what all the jargon in your MRI report means. Rest assured, there is nothing to be alarmed about in your report. Given that you have an AN, this is all pretty typical of how an AN progresses, and yours is progressing very, very slowly and is still pretty far away from your brainstem.
As a personal aside, I think you are on the right track in considering CK for treatment, if and when you deem it is necessary. I had CK and am very happy in my decision.
Best wishes,
TW
-
Tumbleweed:
Thanks so much for the detailed explanation of the terminology used in my MRI written report. Everything you say makes sense and sure does help me in better understanding what is going on. To the doctors, the terminology is very familiar but to us laymen it is difficult to understand - especially when they throw some of the technical terms at you. I am scheduled to visit a surgeon on Friday who I am using as a consultant (he preforms surgery but recommends radiation for me when the time comes. He doesn't do radiation.) Based upon your explanation and comments provided by others on this forum, I feel more comfortable and prepared for my doctor visit.
Best wishes
Frank
-
Hi Frank! Iv`e been waiting and watching for around 2 years also, although had symptoms for many years... I`m going on 61 and my AN is the same deminsions as your last reading and stable. My next yearly MRI is in AUG which I hope remains stable. Iv`e ben so used to the tinnitus over the years my main symptom, (also had neuromonics treatment) that I would be happy to stay this way without treatment as long as the AN presents no danger. Seems we have a little in common, Best Wishes, Mickey
-
Hi Mickey
Nice to hear from you. I too am getting used to the tinnitus and it doesn't bother me that much except when I am in a crowd or other place with lots of background noise.
I visited my doctor last Friday and my AN has grown slightly in the last year. It is still a long way from the brainstem and my hearing has not diminished.
My doctor surprised me in advising that he now participates as part of a team in providing GK radiosurgery and that is what he recommends when I feel the time is right to do something. He favors GK over CK, has the same equipment as Univ of Pittsburgh and was trained there. He advised that my main focus on determining when the time is right to do something should be one based upon hearing preservation, rather than the size of my AN. Evidently he believes I could remain in the W&W category longer but my hearing might diminish as the AN grows further.
Looks like I now have to re-think my situation and decide whether to continue in the Watch and Wait category a little longer or elect to be pro-active and decide on a traetment option. Obviously I have to study and digest my new information before making a decision.
Frank
-
Frank, your digital signature says (near the top) that you had partial hearing loss and (at the bottom) no hearing loss, so I'm not sure which to assume. But for younger people, I think getting an AN treated to prevent hearing loss makes sense. If your hearing isn't that great to begin with, and considering you're 71 and are likely to have declining hearing ability as you age further, it's not so cut and dry. Dr. Brackmann (House Ear Clinc) once told me that in Sweden, they generally recommend a patient holds off getting treated until they go deaf on the affected side; then they do surgical resection. Having been through what appears to have been successful CK treatment, I don't agree with the approach taken in Sweden -- I'm very happy that my hearing has degraded only slightly (about 15 dB) since treatment, and I have a strong feeling I would've lost at least that much hearing had I not gotten treatment yet (although there is no way to know).
You could also develop severe balance problems or facial numbness if you wait too long before getting treated. Hearing loss isn't the only risk.
Personally, I'm glad I got treated and wish I'd been diagnosed earlier so I could've gotten treated earlier. But then again, I probably would've stayed in W & W until my symptoms got worse, anyway. Hindsight is 20/20.
Confused and uncertain about what to do? We've all been there. And I hope I haven't increased your confusion. I just wanted to present you with both sides of the coin so you have a balanced perspective in making a decision.
Sincerely,
TW
-
Hi TW:
Sorry for the confusion on the hearing in my digital signature. After my third MRI and hearing test, there was no additional hearing loss in my AN ear, within the limit of error in the test.
I agree that as we age it is normal for hearing loss to occur, even if we don't have any ANs inside our heads. My hearing has been pretty good for an old fellow, so I do not have hearing aids. (My local ENT has suggested that I might consider a hearing aid for my AN ear but I am reluctant to go in that direction for now.) My hearing, even with the slight loss in my AN ear, is to me worth saving, hopefully at or near its present level - and that is my concern right now. Do I get radiosurgery now in hopes of preserving my hearing at or near its present level or do I "watch and wait" longer and run the risk of my hearing in the AN ear deteriorating further? Tough decision!
Frank