Author Topic: 2-year MRI results - show growth in AN  (Read 16665 times)

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7451
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: 2-year MRI results - show growth in AN
« Reply #15 on: May 27, 2009, 11:13:08 am »
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
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Vivian B.

  • Hero Member
  • *****
  • Posts: 583
Re: 2-year MRI results - show growth in AN
« Reply #16 on: May 27, 2009, 12:46:28 pm »
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
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

frank

  • New Member
  • *
  • Posts: 24
Re: 2-year MRI results - show growth in AN
« Reply #17 on: May 27, 2009, 02:07:54 pm »
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
4/07 MRI 8x5x6 mm  AN, RS  
Partial hearing loss and tinnitus 
4/08 MRI 10x5x5 mm
No additional hearing loss
4/09 MRI 1.2 cm , 6mm in AP dia, small mushroom shaped component into CB angle cistern. No additional hearing loss
Gamma Knife 11/09 Univ Hosp GK Ctr, Syracuse
Dr Hahn & Woods

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7451
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: 2-year MRI results - show growth in AN
« Reply #18 on: May 27, 2009, 02:29:21 pm »
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
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

DHJ

  • Jr. Member
  • **
  • Posts: 74
Re: 2-year MRI results - show growth in AN
« Reply #19 on: May 29, 2009, 09:43:16 am »
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
3yr wait and watch on left sided 2.9cm AN is over surgery 11/4/2011 Mckenna/Barker at MGH one year MRI 11/12/2012 all clear

suboo73

  • Hero Member
  • *****
  • Posts: 639
Re: 2-year MRI results - show growth in AN
« Reply #20 on: May 29, 2009, 02:51:17 pm »
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
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: 2-year MRI results - show growth in AN
« Reply #21 on: May 29, 2009, 07:12:53 pm »
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
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Tumbleweed

  • Hero Member
  • *****
  • Posts: 1052
Re: 2-year MRI results - show growth in AN
« Reply #22 on: May 30, 2009, 12:12:09 am »
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
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

frank

  • New Member
  • *
  • Posts: 24
Re: 2-year MRI results - show growth in AN
« Reply #23 on: June 03, 2009, 09:20:57 am »
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 
4/07 MRI 8x5x6 mm  AN, RS  
Partial hearing loss and tinnitus 
4/08 MRI 10x5x5 mm
No additional hearing loss
4/09 MRI 1.2 cm , 6mm in AP dia, small mushroom shaped component into CB angle cistern. No additional hearing loss
Gamma Knife 11/09 Univ Hosp GK Ctr, Syracuse
Dr Hahn & Woods

Mickey

  • Hero Member
  • *****
  • Posts: 753
Re: 2-year MRI results - show growth in AN
« Reply #24 on: June 05, 2009, 07:57:06 am »
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

frank

  • New Member
  • *
  • Posts: 24
Re: 2-year MRI results - show growth in AN
« Reply #25 on: June 08, 2009, 08:10:23 am »
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 
4/07 MRI 8x5x6 mm  AN, RS  
Partial hearing loss and tinnitus 
4/08 MRI 10x5x5 mm
No additional hearing loss
4/09 MRI 1.2 cm , 6mm in AP dia, small mushroom shaped component into CB angle cistern. No additional hearing loss
Gamma Knife 11/09 Univ Hosp GK Ctr, Syracuse
Dr Hahn & Woods

Tumbleweed

  • Hero Member
  • *****
  • Posts: 1052
Re: 2-year MRI results - show growth in AN
« Reply #26 on: June 12, 2009, 02:26:40 am »
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
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

frank

  • New Member
  • *
  • Posts: 24
Re: 2-year MRI results - show growth in AN
« Reply #27 on: June 12, 2009, 11:00:22 am »
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
4/07 MRI 8x5x6 mm  AN, RS  
Partial hearing loss and tinnitus 
4/08 MRI 10x5x5 mm
No additional hearing loss
4/09 MRI 1.2 cm , 6mm in AP dia, small mushroom shaped component into CB angle cistern. No additional hearing loss
Gamma Knife 11/09 Univ Hosp GK Ctr, Syracuse
Dr Hahn & Woods