ANA Discussion Forum
General Category => AN Issues => Topic started by: kareno on March 11, 2011, 09:27:46 am
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On Monday March 14th my husband will have his first year MRI. He is doing very well besides SSD, Tinnitus, and tiredness. He had minimal headaches but recently complained of a few mild headaches in the back of his head which I thought was different. Does anyone know the chances of a possible AN regrowth. My husband had surgery with Dr. Heilman Tufts and the entire 3cm tumor was removed. He did very well after surgery no complications besides an allergic reaction to steroids and was back working full-time within 4-5 weeks.
I have been following this forum for a year and it has helped me tremendously. Thank you everyone!!
Karen
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Cannot seem to find the referenced article, but as I recall the regrowth possibility after surgery is only a 5 to 9% chance and most frequently following retrosigmoid (suboccipital) approach. The stats for knowingly leaving some of the tumor would be different. And, of course, different stats for people after radiation treatment.
Did he have an MRI at six months? If so, was it completely clean? If not or he did not have one at six months, you will know on Monday's MRI whether there are any areas of post-op changes or recurrence to watch.
Keep in mind that headaches can be caused from many things besides an AN. Oh, how easy it is for me to jump to any new symptom as being related to the AN! Some are, of course, but some are not. Try to relax until you have the report from this MRI.
Many thoughts and prayers.
Clarice
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I had my AN (almost 3 cms) removed via the retrosigmoid approach almost 4 years ago.
I was told by my neurotologist that my chances of regrowth are approximately 1-2% since as far as he and my neurosurgeon could tell they removed 100% of the tumor.
I say "as far as they could tell" because surgeons do their best, but even one cell left behind has the potential of regrowth.
Sometimes sh*t happens.
Jan
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What I've been told by AN specialists who practice microsurgery and radiosurgery is that the chance of recurrence is about the same with either type of treatment: 2%. The odds are overwhelmingly in his favor that he is done with this tumor for life.
Best wishes,
TW
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Good News!! There was NOT any sign of tumor regrowth on the MRI. The Neurosurgeon said that it is a 1% chance for the AN to return. He will have another MRI in 4 years. Thank you to ALL of you on the Forum!!!
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So glad his MRI was "clean". YEAH!! ;D
Thanks for letting us know!
Jan
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Unfortunately the percentage of regrowth vs. time (years) is high in case of near-total resection, very high in case of sub-total resection, very very high in case of partial resection. Much less in case of gross-total resection.
http://thejns.org/doi/abs/10.3171/2010.11.JNS101041
http://thejns.org/doi/abs/10.3171/2016.11.JNS16498
https://pbs.twimg.com/media/DAg5XL0XoAAbKC4.jpg
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mine grew back. i had it treated with stereotactic radiosurgery 2 1/2 years ago and it has stopped growing but it hasn't shrunk.
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we need pharmacology, not surgery or radiosurgery. regrowth is a huge problem.
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Mine grew back as well - just 1% was left on my facial nerve. 15 months later it was almost to the original size. A month ago I was treated with SRS - waiting to see if this worked.
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Yeah, mine is growing back as well. It took a while though. It was not fully removed. They could only debulk the thing by about half, it was so huge—the size of an egg. The surgery was in '05. So it's been 13 years. Last year's MRI showed that it had regrown 2 millimeters. And to think I thought I was getting away with it (no regrowth).
Just had this year's MRI last week (my 14th MRI) and will be getting the results this afternoon at my G.P. follow-up.
To complicate matters, I also have what is referred to as "overshunting", where too much CSF is being drained from my head.
This results in expanding brain tissue, billowing out against the skull. How far this is going to go or what complications may arise I have no idea; all I know is that there is nothing that can be done about it. I am now afflicted with weird headaches that are especially bad in low barometric pressure. They tend to go away when I lay down.
So far, I have adjusted to a new normal: constant double vision, slight facial numbness, quivering facial tissue, high-pitched, shrill tinnitus, total left-side deafness, impaired handwriting, impaired equilibrium and frayed nerves.
This thing really screwed my life up, not that it was anything to brag about in the first place. So maybe it's a blessing in disguise? Who knows? And I am/was a musician. The Lord moves in mysterious ways.
13 years ago my doctor told me that stereotactic radiosurgery would be the next step in the event of regrowth.
Somehow the notion of frying what's left of my brain tissue with radiation scares the hell out of me, especially what the long term side-effects may bring.
I'll update you on the MRI results.
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Crazycat, Good luck with your MRI results. The previous 2 mm growth is within the measurement error for these tumors.
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Thanks Syd!
What exactly is meant by "within measurement error"?
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Oh my! Crazycat please keep us posted. It must be so hard on you. Patti
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I will Patti.....and thank you!
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Measurement Error is the difference in size between reported size and actual size. Factors that influence reported size is operator differences and MRI slice position. Slice position refers to the plane along which the MRI takes its image. If it through the maximum diameter it will indicate the size, however if it half-a-slice either side it will show a smaller reading.
In summary a reported difference in 2 mm may not be growth at all.
(We haven't gone into interpretation differences about where to measure the tumor.)
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Thank you Syd!
Here's a partial transcription of my MRI exam last week. It's like something from the '60s sci-fi film "Fantastic Voyage".
What concerns me the most is: "Incidental note is made of a small, developmental venous anomaly in the left frontal lobe",
which could be an indication of a potential stroke or aneurysm. At any rate, the radiologist didn't seem to be too concerned about it.
Indication: Follow-up of vestibular schwannoma.
Comparison: Multiple brain MRIs dating back to 8/17/2011 with the most recent performed on 9/13/2017.
Findings: Redemonstrated is the multilobulated, avidly enhancing left cerebellopontine angle mass with cystic components. The prepontine component measures approximately 1.8 x (CC) 1.9 (AP) x 3.8 (TV) cm (measured approximately 1.8 x 1.8 x 3.8 cm in 2017 and 1.7 x1.5 x 3.7 cm in 2011). The component at the foramen of Luschka measures approximately 1.9 x 1.7 x 1.3 cm (measured approximately 1.8 x 1.8 x 1.4 cm in 2017, 1.7 x 1.3 x 0.9 cm in 2011). Exerted mass effect and partial effacement of the left prepontine cistern and cerebellopontine angle are similar to prior.
Postoperative change of the posterior fossa is remonstrated with left cerebellar encephalomalacia, and left suboccipital craniectomy with mesh cranioplasty (I have a titanium mesh at the back of my skull).
Shunt catheter placed via the right frontal approach terminates in the anterior horn of the right lateral ventricle near the foramen of Munro, similar to the prior examinations. Small halo of T2 FLAIR hyperintense signal along the shunt tract is also similar to prior. There is no ventriculomegaly or sulcal effacement. Ventricles, sulci and cisterns appear similar to 2011.
There is no restricted diffusion, acute infarct or parenchymal hemorrhage. Incidental note is made of a small, developmental venous anomaly in the left frontal lobe.
There is no focal extra-axial collection.
There is smooth,diffuse dural enhancement.
The major vascular voids are intact.
There is minimal mucosal thickening of the paranasal sinuses with a small mucous tension cyst at the right maxillary sinus floor. Mastoid air cells are clear. Left mastoid air cells are underpneumatized.
Globes and orbits appear normal.
Nasopalatine duct cyst is remonstrated.
Impression:
1. Left cerebellopontine angle mass presumed to reflect vestibular shwannoma is similar to 2017. When compared to the more remote examination from 2011, there has been slight, gradual increase in size.
2. Smooth, diffuse dural enhancement most likely reflects intracranial hypotension (overshunting). Shunt catheter tip location, ventricles, sulci and cisterns appear similar to 2011.
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Let's see what we have:
2018: 1.8 (CC) x 1.9 (AP) x 3.8 (TV) cm
2017: 1.8 (CC) x 1.8 (AP) x 3.8 (TV) cm
2011: 1.7 (CC) x 1.5 (AP) x 3.7 (TV) cm
The dimension with a significant difference is the AP dimension. The other two dimensions are effectively unchanged.
Have you taken a look at you images on CD?
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No, haven't viewed the CD yet. For some reason, the radiologist hit the panic button last year, prompting me to book appointments with my doctors at Mass General. Turns out the bigger concern has to do with overshunting. The regrowth is so slight there is really no need for additional treatment at this point. It really hasn't changed at all since my 2017 scan and there is nothing that can be done about the overshunting.
Though I have been feeling the effects of having less pressure in my head as my brain tissue is billowing out against the inside of the skull. I have headaches and my nerves are shot. Just tonight someone walked came up behind me in the driveway and surprised me. I couldn't hear him approaching as I am deaf as a post. I was in the process of scraping ice off the windshield. I turned and raised the ice scraper over my head like I was going to club him. It scared the hell out of me—the way I reacted.