Author Topic: Am I getting too hung up on measurements?  (Read 7231 times)

Sheryl

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Am I getting too hung up on measurements?
« on: October 08, 2010, 03:10:00 pm »
I have been a W&W patient for 9 years with a 9th cranial nerve schwannoma.  Original MRI in 2001 stated 9 mm but I was told it may have been under read and was slightly larger.  Yearly MRI's thereafter showed a millimeter increase for each year until 2005 and I had stability at 13 mm x 14 mm (or 1.3 cm x 1.4 cm) until December, 2009, when the measurement went to 14 mm x 14 mm.  I was still told this was within the realm of "technical" difference - my argument is that if you compare to original finding, it is outside the "technical" difference but also very slow growing over 8 years. 

Feeling some (what I thought) increased symptoms, I had my yearly MRI early at the end of September, 2010, rather than December, 2010.  This was done at a completely different hospital than all the others. I got a call that the MRI was exactly the same as last year - no more details,  but when I was able to view the written report, it read 15 mm x 14 mm.  My symptoms have abated - still have full/pressure feeling in head, slight dizziness/imbalance problems but actually not much related to the 9th cranial nerve (gag reflex, swallowing problems).  I tell everyone that if I didn't know I had this brain tumor that any symptoms I am feeling wouldn't even be related to it.  I was told I can wait another year for next MRI.

Should I continue obsessing over this - I am looking at 6 mm of growth in 9 years and, of course, was hoping that I'd hear the word smaller or shrinking. Or, maybe I should look at the recent figure from 2010 of 15 mm x 14 mm and compare to 2005 figure of 14 mm x 13 mm and think that one millimeter over 5 years is nothing?
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

Jim Scott

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Re: Am I getting too hung up on measurements?
« Reply #1 on: October 08, 2010, 03:24:38 pm »
Sheryl ~

Your concern is understandable and your diligence in monitoring the growth of the AN is admirable.  It does appear to be growing, albeit, very slowly, which is fairly common.  If you aren't experiencing any increase in (or new) symptoms, it would seem that waiting another year for an MRI scan wouldn't be imprudent.  From this point on, I would try to have every MRI performed at the same facility (same apparatus) to help insure consistency in the subsequent measurements.   To answer your initial question: no, I don't believe that you should obsess over the size of your AN (it's quite small) but you should certainly 'monitor' it for growth (it could stabilize) and adjust to the reality that it may well have to be addressed in the future.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

nanramone

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Re: Am I getting too hung up on measurements?
« Reply #2 on: October 08, 2010, 06:55:18 pm »
I agree with Jim that your MRIs should be done on the same apparatus so an accurate comparison can be made. If this was done, you have no life altering symptoms, and your doctors assured you that you can wait another year - by all means forget about the thing for another year! Enjoy life!


Mickey

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Re: Am I getting too hung up on measurements?
« Reply #3 on: October 08, 2010, 07:55:56 pm »
Hi Sheryl! Nice to see your into your ninth year W+W. It seems to me that your AN is relitively not to far off as when you first started. With symptoms hardly noticeable I`d probably would stay on the same path as you. My AN  is not to far off from what yours is for over three years now and how long stable before that is unknown. When we make this choice we hope that maybe without to many side affects we`ll be able to go on indefinately. We also hope for that chance other than stable of reduction as what has happened to Derek. I`m with you with alot of prayers and a healthy lifestyle! Best wishes, Mickey

Sheryl

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Re: Am I getting too hung up on measurements?
« Reply #4 on: October 08, 2010, 09:22:46 pm »
It's so great to be part of this "family" - even though unfortunate circumstances brought us together.  I appreciate all of your replies.

To clarify my reasons for switching facilities - all of my MRI's had been done in Florida where we winter.  I decided in case anything needed to be done that my care would be in Boston close to where we spend the summer.  I saw a neurosurgeon to get established and a couple of months later (this past September) thought my symptoms were increasing so he recommended having my MRI there (Boston).  Since all the previous MRI's are down south, I have sent this one to a neuroradiologist I know there, and he will give me his opinion and be able to compare to the last five years (that's all they have on computer at this point).  I have a feeling it won't be too different.  The neuroradiologist at the Boston hospital did not have the advantage of the older MRI's to compare - the neurosurgeon kept the comparison MRI's and did his own interpretation - the neuro nurse claimed they couldn't upload the older ones into their system.  Hope my rambling makes sense.

Thanks again for responding,
Sheryl

9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

nanramone

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Re: Am I getting too hung up on measurements?
« Reply #5 on: October 08, 2010, 09:36:39 pm »
 I suggested staying with the same apparatus if possible based on my own current experience. My first MRI and the second, done 3 months later, were different, because they were done on different machines.

The next, scheduled for mid Nov. 2010, will be done on the same machine as the first - the first is the baseline, and though it shows the AN to be smaller than it really is because of lower resolution (or whatever), the next MRI done on that machine will show any changes that may have occurred, and any possible percentage of change can than be compared to the second and more accurate scan. I think you do need to be able to compare to a baseline. That's what I was told. I worked in research for 5 years and I understand the point of this.



Derek

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Re: Am I getting too hung up on measurements?
« Reply #6 on: October 09, 2010, 04:50:37 am »
Hi Sheryl...

Be assured that you are not being obsessive over this and that you are merely displaying a perfectly normal reaction to an annual MRI scan which is indicating a very slight variation when compared to your previous result. Rational analysis of your situation establishes that your recent scan was carried out at another hospital on alternative apparatus and the procedures carried out by a different technician and neuroradiologist!

Most importantly you have no discernible change or increased symptoms and in the circumstances the 'apparent' 1mm increase in the size of your AN in all probability will be down to technical tollerances between the different MRI machines and interpreted data used in your scanning procdures.

I totally agree with your logic that you should compare your 2010 scan with that which you had in 2005 and you are right Sheryl...1mm in 5 years is nothing!

It may be prudent to ensure that your next scan in 2011 is undertaken at the same facility as this year and in the interim, resume your positive 'normal service' and complete your 10th year as our 'Queen of the Wait & Watchers'.

Best regards from your long-term sparring partner!

Derek
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

Mickey

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Re: Am I getting too hung up on measurements?
« Reply #7 on: October 09, 2010, 08:37:20 am »
Hail to the KING + QUEEN! haha  Best wishes always, Mickey

Jackie

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Re: Am I getting too hung up on measurements?
« Reply #8 on: October 09, 2010, 12:20:58 pm »
Hey Mickey,

Does that mean we are Prince and Princess, aspiring to be Kings and Queens someday too???
Blessings to all Watch and waiters, for continued stability.
Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

Mickey

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Re: Am I getting too hung up on measurements?
« Reply #9 on: October 10, 2010, 07:34:39 am »
We are right there Jackie! To be Princess and Prince has its benifits. haha Keep the faith, Mickey

Sheryl

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Re: Am I getting too hung up on measurements?
« Reply #10 on: October 10, 2010, 10:21:47 am »
Full court - king, queen, princes, and princesses  ;)  Thanks again to all for your replies.  I've calmed down a bit especially after all the good advice.  Need to get by hubby's head MRI for meningioma on 10/19 and hope that it has not decided to make another come back which would be #4 - two surgeries and one Cyberknife treatment.  Thinking positive and looking forward to returning to Florida sunshine for the winter although this lovely New England fall weather has been perfect.

Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

Tumbleweed

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Re: Am I getting too hung up on measurements?
« Reply #11 on: November 26, 2010, 12:30:35 pm »
Hi, Sheryl:

I agree with everything Jim said.

It would seem that your AN went through a growth spurt from 2001 to 2005 but has essentially stopped growing in the past 5 years. You are wise to look at the longer-term trend. It's been my experience that doctors sometimes only look at the last two or three MRI series. Of course, what the tumor is doing now is most relevant to whether or not you might need treatment.

Small variations in size from one MRI series to the next are statistically inconclusive (due to the margin of error for MRI) but consistent incremental increases in size over the course of many series may add up to indicate a valid growth trend. So do continue to review the measurements for all your MRIs as far back as you have records; it's not obsessing, and you may catch something that the doctors missed in their focus on the near term. All that said, your AN appears to be stable in recent years and it seems there is no urgency or cause for concern.

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

mk

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Re: Am I getting too hung up on measurements?
« Reply #12 on: November 26, 2010, 06:15:39 pm »
I missed the original thread, but stumbled upon it right now. I want to relate a slightly different perspective, arising from my recent experience. I had MRIs at 6 month intervals since diagnosis and GK. The radiation oncologist kept saying that the AN is stable. From reading my scans, I thought that there was a very slight upward trend, which I dismissed after being consistently reassured. Then after the latest MRI, I saw once again a slight increase (of less than 1 mm). Initially I was told again that this was within the margin of error. Now here is where I started questioning this. Yes, every slight increase has been in the margin of error, if you only consider 6 month intervals. However, if it is just statistical variation, due to instrument or number of slices etc., I would think that sometimes the trend should go downward as well, instead of consistently upward. i.e. there should be some fluctuation in measurements. So i raised an issue with this. Fortunately the radiologist report came to back me up, because the radiologist looked back not only at the most recent scan, but a few scans  back. This is what caught finally the attention of the radiation oncologist, who sent it for yet another opinion, and started to sound worried.
Long story short, he has referred me to get the opinion of a very experienced neurotologist, who also thinks that it has been growing, albeit slowly. And the point of all this: You are very justified to question the results, be on top of this, and if you feel uncomfortable, seek a second and third opinion.
Having said all this, I hope that your schwannoma does remain stable and that you won't need any intervention.

All the best
Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Tumbleweed

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Re: Am I getting too hung up on measurements?
« Reply #13 on: November 26, 2010, 08:42:52 pm »
Marianna's experience underscores the importance of reading your own MRIs (and the associated text reports) and keeping good records of your AN-related history. That assumes, of course, that you are comfortable with "getting your hands dirty." But if you're willing to do the work, there can only be benefits from taking such a proactive approach to your health care.

Kudos to Marianna for daring to be the squeaky wheel when she thought her doctors might not be assessing her situation correctly. Many of us on this forum had been misdiagnosed for years before our ANs were discovered. My HN was overlooked on the first two MRIs I had. At every step of the way, there is potential for mistakes, misinterpretations, no matter how good the doctors are. They are only human, after all. So, power to the patient who keeps a discerning eye trained on all the test results available to them. After all, it's our health, our life, we're talking about here.

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

Sheryl

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Re: Am I getting too hung up on measurements?
« Reply #14 on: November 28, 2010, 02:28:58 pm »
Hi All - thanks for recent input (hope everyone had a great Thanksgiving).  Talk about being "proactive" - my home medical record file rivals any found in a hospital!!  On top of that I have notebooks that I take to every doctor's appointment labeled, volume 1, 2, etc.  Sometimes I take a little recorder.  This is not only for myself but for hubby too (another brain tumor patient).

Interesting theory about margin of error decreasing.  I think it is important to compare MRI's going back as far as possible to the recent one.  That would show a pattern of growth more accurately.
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

 


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