Author Topic: Another new guy...  (Read 7603 times)

ANSydney

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Re: Another new guy...
« Reply #15 on: May 11, 2017, 07:53:47 pm »
The reason for regular MRI's is that you want to catch rapid growth. For those that don't grow or grow very slowly, you can get a series of MRIs to see the long term trend. So, MRIs every 6 months, at least initially, will tell you if there is rapid growth or not. The series of MRIs will tell you if you have slow growth or no growth.

BTW, rapid growth and small size may warrant further MRIs to get a more complete picture.

dwilliams35

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Re: Another new guy...
« Reply #16 on: June 06, 2017, 09:51:46 am »
It looks like I'm going back for round two:  the VNG was really no big deal the first time, at least not for me; sounds like some people have a hard time with it.  I've sent some messages to the doctor's office asking just what they're looking for, it's been fairly cryptic: just trying to "detect other issues":  I think the issue's pretty obvious, still.  The second round of prednisone helped, but once I got done with that I've still got some dizziness.  Now they want me to do ANOTHER VNG test next week when I go back..  IT's kind of a "whatever" at this point,  I'm going to have to be a bit more clear that I really want to know what they're trying to do with this;  the answers I've gotten to my questions so far are the standard stuff where the nurse is answering the questions and doesn't want to say anything specific; just saying that I can talk to the doctor when I come in.  I am pretty happy with the doctor besides this, so I don't want to get all sideways with him over this. It still seems either redundant or just "fishing":  I think it's pretty obvious where the dizziness has come from, just not sure what else they're trying to dig up here.

EricC

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Re: Another new guy...
« Reply #17 on: June 06, 2017, 03:47:44 pm »
As I understand it, these things grow only very slowly - on the order of 1mm per year - so it seems unlikely a second MRI could accurately determine growth rate unless it's a LONG wait between MRIs.  Do I have this right, y'all?

1mm a year is average.  So there are some that grow fast, some not at all.  Upper limit is closer to half cm a year.  In that case, cut it out.  Placement is also an issue.  Is that 1mm a year toward something important?  Facial paralysis goes way up after 10mm statistically.  Its often about where it is and how easy it will be to treat.
4.6 x 3.4 x 2.9 mm (2017)
4.3 x 2.4x 2.5 mm (2016)
3.9 x 2.1 x 2.5 mm (2015)

ANSydney

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Re: Another new guy...
« Reply #18 on: June 06, 2017, 06:12:11 pm »
MarkS, the reason for 6 monthly or yearly MRI, at least early on, is to catch rapid growth that is getting "too large". Two-thirds don't grow, its very rare to have any grow after 4 years from diagnosis and the average growth rate is about 1 mm/year. So, the frequent MRI are to look for the case of rapid growth.

dwilliams35

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Re: Another new guy...
« Reply #19 on: September 17, 2017, 03:15:55 pm »
Got the results back from my 6-month "wait and see" MRI.    Went from 10 x 5 mm to 13 x 6 x 4mm.  ( different MRI facility than the first).   I'm supposed to go see the doctor on Tuesday.  Any thoughts?

ANSydney

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Re: Another new guy...
« Reply #20 on: September 17, 2017, 06:08:26 pm »
Go to a place that will independently look at both MRI images and get the same radiologist at the same time to tell you the size now and 6 months ago. 2 mm is considered measurement error.

Have you looked at the images yourself and compared. You can get a CD and they include a measurement tool.

Take a look at http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf . Figure 1 shows that in Denmark, 95% of tumors under 20 mm are observed. Table 1 shows that growth slows as the time goes on, roughly halving each year and that no growth was observed after 4 years of observation. I probably already asked how long you've had symptoms, but can I ask again. The cited paper is quite old, but Stangerup has not changed his stance over the year https://www.bhtinformatie.nl/pdf/ingrijpen.pdf .
 
If they were my reported measurements, I would go for another three MRI before declaring growth. I would also look at the CDs and study the growth.

dwilliams35

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Re: Another new guy...
« Reply #21 on: September 18, 2017, 09:42:40 am »
The first symptoms that I really ever noticed were what led to the first MRI,  so it's been six months.  It does seem like they've gotten worse, and I've "picked up" some of the other symptoms that I didn't really have before (or at least never noticed until this was an issue):  facial numbness primarily..


Edit;  I also just happen to have gotten the cd in the mail today...

« Last Edit: September 18, 2017, 06:03:22 pm by dwilliams35 »

dwilliams35

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Re: Another new guy...
« Reply #22 on: September 19, 2017, 08:30:57 pm »
Went to the Doc today,  he's of the opinion that the 3mm growth is beyond the margin for error, and that it IS growing.   Gave me three options,  a further 4 month wait MRI, Gamma Knife, or Surgery.  Of course I already knew that was the options.

He said that the symptoms I have probably are there for good, so I'm thinking go ahead and kill this thing one way or another before it grows further and the symptoms progress.  After all the pluses and minuses were presented, I'm leaning hard toward the GK.  He referred me to another doctor who apparently deals with GK: I haven't yet set an appointment date but have a call into his office: hopefully that will happen tomorrow.

He didn't really push me toward one or the other, (despite being a surgeon himself)  but here's my reasoning:
1. the obvious outpatient treatment of GK vs. some significant downtime for surgery
2. He mentioned a slight possibility of recurrence with GK, as opposed to surgery, and that surgery on once-irradiated tissue being more complicated than just doing it the first time around.  I'm thinking that my odds are fairly good against that to begin with, and that surgery in several years may be more advanced than surgery now, and I may be in a better position to take a month or two off at the time.
3. side-effects and possible side-effects of major surgery vs. the GK: unless there's something I missed, I like my odds better with the GK.

Any thoughts on those developments?

ANSydney

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Re: Another new guy...
« Reply #23 on: September 19, 2017, 09:16:58 pm »
Have you had one radiologist compare the two MRI images at the same time. Different radiologists will measure it differently. Neurosurgeons just take the radiologists measurements without checking. I think this step is very important.

You can always get every set up for Gamma Knife to occur in 4 months time and just before the Gamma Knife go to an independent radiologist and get a third measurement.

Measure twice, cut once.

dwilliams35

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Re: Another new guy...
« Reply #24 on: October 17, 2017, 10:04:14 pm »
Well, I’ve neglected posting in the last few weeks-I did have the MRI’s double checked, and I’m scheduled for a gamma knife a week from today.  The AN is in the bone “canal” leading from the ear into the skull, so the GK is apparently preferable, as it’d be a tough one to get to surgically.   Sounds like everybody’s in agreement that it is growing, and it sounds like it doesn’t have much room to grow in there without compressing the nerves further.  The recommendation was sooner rather than later as a result, and after hearing all the details I’m good with that.  Wish me luck.  The docs too.
« Last Edit: October 17, 2017, 10:07:37 pm by dwilliams35 »

ANSydney

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Re: Another new guy...
« Reply #25 on: October 17, 2017, 10:19:16 pm »
Glad you independently checked for growth. What were the size figures for the first and second MRI from the original radiologist and the independent radiologist? Did they match?: Was there much growth? I've probably already asked, but apart from hearing loss, what are your symptoms?

dwilliams35

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Re: Another new guy...
« Reply #26 on: October 17, 2017, 11:24:10 pm »
They agreed on the 3mm growth between the two, 10mm to 13mm.  Dizziness, Tinnitus, and some hearing issues.  (I was already wearing hearing aids before the AN). I was thinking I had some facial numbness, but the Dr. a couple of weeks ago said he didn’t think that was a result of the AN at this point.  That may have been just the power of suggestion.  The dizziness has worsened since this all started, for sure.  The more I learn about my case, the more I really just think that apparent location is the real issue here, it simply doesn’t have room to grow without causing me some real problems. 
« Last Edit: October 17, 2017, 11:26:34 pm by dwilliams35 »

ANSydney

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Re: Another new guy...
« Reply #27 on: October 17, 2017, 11:34:34 pm »
Did the second radiologist see the first radiologist's results, or where they independlty arrived at meassuements or conclusions. There's a video by Charlie Teo where he describe being castigated by the medical governing body for giving a second opinion that was contrary to the the first. https://www.youtube.com/watch?v=ZeC4dHVMCfU

dwilliams35

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Re: Another new guy...
« Reply #28 on: October 17, 2017, 11:44:50 pm »
I honestly couldn’t tell you whether they were aware of the other reports or not.

  I did spend several hours poring over the two myself, measuring, etc, and it really does just jump out at you, I am getting the same measurements they did on both of them as well, for what a junior assistant amateur radiologist’s opinion is worth.. 

ANSydney

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Re: Another new guy...
« Reply #29 on: October 17, 2017, 11:53:28 pm »
The fact that you also did the measurement is great. You now now what is going on. When's your next MRI due? This will give you not only the rate of growth but the change in the rate. Strangerup ( http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf ) found that no tumor grows after four years from diagnosis (FIG. 3) and that they slow down with time (TABLE 1).

May be worth talking to a vestibular therapist to see what they think about dizziness. Nothing can fix tinnitus and hearing loss is only accelerated by intervention (plenty of references to articles in this forum).

 


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