Author Topic: Article Review: Most Acoustic Neuroma tumors stop growing within 5 years?  (Read 12149 times)

v357139

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Re: Article Review: Most Acoustic Neuroma tumors stop growing within 5 years?
« Reply #15 on: December 27, 2016, 08:02:45 pm »
Rich,

I read through your posts to get an understanding of your growth. Your first post on 22 January 2013 you said it was 2.5 cm. On 1 October 2013 you said it was 2.7 cm. You had tranlab microsurgery on 20 November 2013. Couldn't see a post for 3.5 cm tumor.

ANSydney,
You stimulated my curiosity so I went back to look.  First report 12/11/12: 2.3 craniocaudad x 2.6 transverse x 2.7 (AP) cm left sided acoustic neuroma with intracanalicular extension.

Second report 10/16/2013: 3.5 maximal oblique transvere x 2.7 maximal oblique cephalocaudad x 3 maximal oblique AP diameter left sided acoustic neuroma with intracanalicular extension.  Increased from prior examination (previous measurement 2.7 x 2.6 x 2.3cm.  Same machine, different doctor.  I think it did grow.

I agree with the previous post.  There are the averages, and there is also the range.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

v357139

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Re: Article Review: Most Acoustic Neuroma tumors stop growing within 5 years?
« Reply #16 on: December 27, 2016, 08:21:30 pm »
AN Sydney, here is the rest of it.  "There has been interval enlargement compared with the prior study  and the compression and displacement changes seen in the brachium pontis and fourth ventricle are also new compared with prior.  There is leftward deviation of the brachium pontis, brainstem, and fourth ventricle, however without reactive edema seen within the displaced structures."

My take on this - for a tumor of that size I should have had the second MRI at 6 months, not 10 months.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

ANSydney

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Re: Article Review: Most Acoustic Neuroma tumors stop growing within 5 years?
« Reply #17 on: December 27, 2016, 09:17:22 pm »
Does same machine mean same place? The words used to describe the different measurements are very different between reports. Do you have images of your tumor? How did it change?

ANSydney

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Re: Article Review: Most Acoustic Neuroma tumors stop growing within 5 years?
« Reply #18 on: December 28, 2016, 02:00:46 am »
Rich, I agree, for a 2.7 x 2.6 x 2.3cm tumor, your follow up MRI should have been at 6 months.

leapyrtwins

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Re: Article Review: Most Acoustic Neuroma tumors stop growing within 5 years?
« Reply #19 on: December 29, 2016, 10:56:49 am »
Interesting theory, but I don't believe it.

My AN was 1.5 cm when it was discovered and by the time I had surgery - approximately 6 weeks later - it had grown to 3+ cms. 

Although most ANs are slow-growing, not all of them are. 
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

v357139

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Re: Article Review: Most Acoustic Neuroma tumors stop growing within 5 years?
« Reply #20 on: December 29, 2016, 07:30:47 pm »
Does same machine mean same place? The words used to describe the different measurements are very different between reports. Do you have images of your tumor? How did it change?
Same machine means same place.  The changes - "There has been interval enlargement compared with the prior study  and the compression and displacement changes seen in the brachium pontis and fourth ventricle are also new compared with prior."
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

Kathleen_Mc

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Re: Article Review: Most Acoustic Neuroma tumors stop growing within 5 years?
« Reply #21 on: January 01, 2017, 03:53:20 am »
How interesting to read for some  but how overwhelming reading an article like this for others.
The way I look at it.....if it's growing and near anything vital (like your brain stem) get it out right away, if it's causing you pain or suffering in anyway get it out/treated as soon as possible......if it's doing you no harm just keep a close eye on it......forever.
 I do not believe something that was growing inside of you will just magically stop, if it runs out of "space" it will make it ( mine was displacing the posterior lobe of my brain when discovered). If you don't have some type of intervention it might slow down or pause growth but eventually will start again and you just might not get it checked out fast enough...yes AN's are mainly space occupying lesions however if they displace the wrong area of the brain......game over.
Just my two cents here
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

alabamajane

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Re: Article Review: Most Acoustic Neuroma tumors stop growing within 5 years?
« Reply #22 on: January 01, 2017, 09:01:49 am »
Well said, Kathleen. I agree wholeheartedly.

I also don't agree with the premise of this thread. There may be ANs that don't grow quickly but I also think there are those found at an "early" stage which must be watched closely forever.

Everyone is responsible to themselves only to decide how they will treat or watch their AN. everyone knows their own body and health and symptoms. You  will have to live with the results of that decision. Researching your options is vital, however some can get totally overwhelmed and even paralyzed by too much info. Therefore, delaying any decision. Not always the best strategy.

Bottom line,, this is a hard journey, no doubt, but it's your journey and only you decide how to navigate it. We all wish you the best.
My two cents,,
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

ANSydney

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Re: Article Review: Most Acoustic Neuroma tumors stop growing within 5 years?
« Reply #23 on: January 02, 2017, 05:56:07 pm »
I think the first step in understanding the acoustics neuroma decison maze is to understand the natural progression of an acoustic neuroma tumor. The articles referenced in this thread provides a good start for this understanding. An acoustic neuroma is a serious situation, which can become more serious no matter what path you take; surgery, radiosurgery or observation. Choose wisely.

From what I can gather, and please provide alternative viewpoints/information:
1) Tumors growth is rapid at first and rare after 5 years from symptom onset
2) Less than one-third of tumors grow (heavily dependent on whether you define growth as >0 mm, >1 mm, >2 mm, >3 mm, etc)
3) Some tumors shrink (varies from ~3% to 22% depending on threshold values and authors)

What surprises me the most is that tumor growth should be the same for any large population. Instead we get different figures from different authors. If different authors have wait-and-watch groups of greater than 100 people, they should all report similar results for tumor growth average over the 100+ people. We should therefore know for any large sample size the percentage of tumors that grow or shrink beyond certain thresholds. Once this is known and generally accepted then treatment options, including pharmacological solutions, can be examined for efficacy.

Why has the medical profession not yet established this fundamental first step?

Cityview

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Re: Article Review: Most Acoustic Neuroma tumors stop growing within 5 years?
« Reply #24 on: January 02, 2017, 06:38:43 pm »
ANSydney

I don't have answers to all of those questions but you might find this link helpful. It's from the ANA Facebook page. I think a good approach to the problem solving might be to just see what your personal tumor does over the next six months. It really doesn't matter what the growth patterns are of the tumors in general but rather your own personal case. I do believe that they need better studies regarding this. It's difficult to say what the pattern of growth might be with these tumors because most people treat the medium or large ones pretty quickly. If you think of it they would need to observe small, medium and large tumors over many, many years to get an idea of the growth pattern. That just doesn't happen.

I probably wouldn't have decided to watch and wait if mine had been medium or large or even larger than what it is. I do firmly believe that 6 months observation is good because it gives the individual time to study the treatment options.

http://tribunecontentagency.com/article/in-some-cases-not-treating-acoustic-neuroma-may-be-best/

ANSydney

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Re: Article Review: Most Acoustic Neuroma tumors stop growing within 5 years?
« Reply #25 on: January 02, 2017, 08:11:48 pm »
Citiview,

Thanks for the link. It made interesting reading. The link itself did not work for me, but I was able to get a Google cached copy of it. I've copy-and-pasted it below in case others have difficulty in reading it. I somewhat agree that documented growth patterns are not as applicable as the measured growth pattern in my case. However, assuming there is no growth at 6 months, I still would like to know what the probability of growth going forward is. In that case I need to go by the literature.

From what I've gathered, and this is subject to confirmation, if there is no growth at 6 months and given that my symptoms have been around for over 3 years then future growth probability is very low.

The important aspect for me is that my symptoms are mild. Less than 50 dB PTA hearing loss, 95%+ speech discrimination, altered taste sensation on right side of tongue and some dizziness if I spin rapidly (test case) to one side. Anyway, while waiting for my next MRI, my knowledge base is increasing.

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In some cases, not treating acoustic neuroma may be best

Mayo Clinic Q & A December 8, 2016
DEAR MAYO CLINIC: I was diagnosed with an acoustic neuroma last year. My doctor says I likely won’t need treatment. But I know others who have had the same condition and had surgery to remove the tumor. Why would I not need any treatment?

ANSWER: An acoustic neuroma, more accurately called a vestibular schwannoma, is a benign tumor that grows on the balance and hearing nerves. These nerves twine together to form the vestibulocochlear nerve, which runs from your inner ear to your brain. Hearing loss due to an acoustic neuroma often occurs predominantly on one side only. For many years, doctors thought surgical removal was the best treatment. Then, in the mid-1980s, stereotactic radiosurgery, such as Gamma knife radiosurgery, was shown to be safe and effective. Increasingly, doctors are concluding that, in some cases, no treatment may be just as good as or better than active intervention in the long run.

An acoustic neuroma arises from the cells (Schwann cells) that make up the insulation surrounding the vestibulocochlear nerve. What causes these cells to overgrow and form a tumor isn’t certain, but it may be related to sporadic genetic defects. Acoustic neuromas are uncommon and usually are diagnosed between ages 30 and 60. In rare cases, the overgrowth may be caused by an inherited disorder, called neurofibromatosis type 2.

Most acoustic neuromas grow very slowly, although the growth rate is different for each person and may vary from year to year. Some acoustic neuromas stop growing, and a few even spontaneously get smaller. The tumor doesn’t invade the brain but may push against it as it enlarges.

Signs and symptoms typically include loss of hearing in one ear, ringing in the ear (tinnitus) and unsteadiness while walking. Occasionally, facial numbness or tingling may occur. Rarely, large tumors may press on your brainstem, threatening vital functions. A tumor can prevent the normal flow of fluid between your brain and spinal cord so that fluid builds up in your head — a condition caused hydrocephalus.

Diagnosis can be a challenge because early signs and symptoms may be attributed to more familiar causes, such as aging or noise exposure. If an acoustic neuroma is suspected, such as when a hearing test reveals loss predominantly in one ear, the next step is to undergo imaging — typically an MRI — to look for evidence of a tumor on the vestibulocochlear nerve. Increasingly, acoustic neuromas are being discovered as incidental findings when people undergo an MRI scan for unrelated reasons, such as chronic headache, multiple sclerosis or even during surveillance imaging for another unrelated tumor.

Treatment varies depending on the size and growth of the acoustic neuroma, symptoms, and your personal preferences. Options include:

Monitoring

If you have a small acoustic neuroma that isn’t growing or is growing slowly and causes few or no signs or symptoms, your doctor may decide to monitor it. It sounds like this is what your doctor has recommended for your situation. Recent studies indicate that more than half of small tumors don’t grow after diagnosis, and a small percentage even shrink. Monitoring involves regular imaging and hearing tests, usually every six to 12 months. The main risk of monitoring is tumor growth and progressive hearing loss.

Stereotactic radiosurgery

This approach may be used if the acoustic neuroma is growing or causing signs and symptoms. In this procedure, doctors deliver a highly precise, single dose of radiation to the tumor. The procedure’s success rate at stopping tumor growth is usually greater than 90 percent. Although the risk is small, stereotactic radiosurgery can damage nearby balance, hearing and facial nerves, worsening symptoms or creating new ones.

Open surgery

Surgical removal typically is recommended when the tumor is large or growing rapidly. This involves removing the tumor through the inner ear or through a window in your skull. If it can be removed without injuring the nerves, your hearing may be preserved. Surgery risks include nerve damage and worsening of symptoms. In general, the larger the tumor, the greater the chances of your hearing, balance and facial nerves being affected. Other complications may include a persistent headache.

Research is ongoing to compare the three treatment strategies. But, based on long-term data, there appears to be surprisingly little difference in outcome no matter which treatment is chosen for smaller tumors. Talk to your doctor to make sure you are being monitored appropriately for your situation. (Adapted from Mayo Clinic Health Letter) — Michael Link, M.D., Neurologic Surgery, Mayo Clinic, Rochester, Minn.

(Mayo Clinic Q & A is an educational resource and doesn’t replace regular medical care. E-mail a question to MayoClinicQ&A@mayo.edu. For more information, visit www.mayoclinic.org.)

Cityview

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Re: Article Review: Most Acoustic Neuroma tumors stop growing within 5 years?
« Reply #26 on: January 02, 2017, 08:54:05 pm »
The most interesting part of that article was this: "Recent studies indicate that more than half of small tumors don’t grow after diagnosis, and a small percentage even shrink."
Dr. Link, the author, is co-chairman of the medical advisory board of the ANA.
That stat referred to small tumors specifically.
I just think that the information that you are looking for in the literature is difficult to find. You're looking for the probability that a tumor will grow in the future.

Thanks for converting the article to text. The link worked fine at first and now I see it doesn't.
« Last Edit: January 02, 2017, 08:55:44 pm by Citiview »