ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: ANSydney on November 27, 2016, 04:12:33 am
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“Regardless of tumor localization or size, growth occurs only within the first 5 years after diagnosis”
This interesting quote is from “The Natural History of Vestibular Schwannoma” by Sven-Eric Stangerup et al from 2006. http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf
Interesting snippets are:
* 552 prospectively registered patients were followed (1975 to 2004)
* 28.9% of extrameatal tumors grew
* an increase of more than 2 mm in the largest extrameatal diameter was defined as growth
* a decrease of more than 2 mm in the largest extrameatal diameter was defined as shrinkage
* Of the 322 extrameatal tumors, over the entire observation period:
- 0.9% decreased in size (n = 3)
- 70.2% was unchanged in size (n = 226)
- 28.9% increased in size (n = 93)
- 58 (62% of 93) during first year
- 24 patients (26% of 93) during the second year
- 9 patients (10% of 93) during the third year
- 2 patients (2% of 93) during the fourth year
- No tumor growth occurred after the fourth year of observation
* There was no significant difference in number of patients with growth between male and female
patients, different age groups, or small (<10 mm) and larger (>10 mm) extrameatal tumors
* Of the 93 patients (intrameatal) with tumor growth:
- 58 patients were operated on
- 5 patients were irradiated
- 10 patients died as a result of unrelated reasons
- 20 patients were either waiting for operation or radiotherapy, or continued observation due to specific patient choice, old age, or significance concurrent disease
* The data are additionally strengthened by the prospective and consecutive one-center registration of all patients diagnosed during the period from 1976 to 2004 in Denmark, with a population of 5.2 million inhabitants. The data are thus without patient referral bias.
* All previous studies on VS growth have been subject to considerable referral bias and additional patient selection bias
All of this is interesting. I wondered if the findings reported here have changed over the years, so I searched for contemporary articles by the same lead author. The most recent, regarding this topic is “Active Treatment is Not Indicated in the Majority of Patients Diagnosed with a Vestibular Schwannoma: A review on the Natural History of Hearing and Tumor Growth” 2014 http://www.bhtinformatie.nl/pdf/ingrijpen.pdf .
Interesting snippets are:
* In order to justify invasive treatment either by surgery or radiotherapy for these smaller tumors the outcome should be superior to that resulting from the natural history of the disease
* the occurrence of significant growth in 20-45% after 3-5 years of observation.
* Tumor regression or shrinkage is reported in 4-22%
* tumor growth occurring beyond the fifth year of observation is very rare, but is, however, still observed
* a larger percentage [of extrameatal tumors] exhibited growth, ranging between 29 and 54%
* hearing will deteriorate faster in patients with growing, as opposed to stable or regressing tumors
* On average, 60% of patients presenting with good hearing at diagnosis will maintain a good hearing level after 5 years of observation
* patients with a normal SD [speech discrimination] at diagnosis will maintain a good hearing level which is markedly better than patients with only a small discrimination loss, and it is especially noteworthy that 75% maintain good hearing after 10 years.
* the main arguments in favor of primary active treatment (surgery or radiotherapy) is to preserve hearing function.
* Hearing preservation by both surgery and radiotherapy show that on average, around 50% of patients preserve good or serviceable hearing short-term by both modalities
Of the few papers that observed tumor growth after 5 years, “Conservative Management of Vestibular Schwannoma: Expectations Based on the Length of the Observation Period”
https://www.ncbi.nlm.nih.gov/pubmed/24914786 [abstract only]
Interesting snippets are:
* 37.7% of tumors (n = 43) showed growth of at least 2 mm.
* Among the patients in the current study, an MRI negative for growth at 2 years of observation yielded only a 12% chance of future growth.
* Of those with a negative MRI at 5 years, only 4% grew by later follow-up
* Not all tumors that grew necessitated further treatment.
* We found that 85.7% of patients who started with an initial AAO-HNS hearing Class A were able to retain a Class A or B (serviceable hearing) at an average follow-up time of 4.8 years.
Summary: Tumor growth occurring beyond the fifth year of observation is very rare.
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very interesting indeed
I hope you won't mind my having taken the liberty of posting your piece on BANA (UK association) and attributing it here.
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Good to see my efforts are spreading Keith. That's great. Hope to get some discussion going on this topic.
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Tough to grasp the data, perhaps my experience is clouding my judgement.
"70.2% was unchanged in size". Sounds like the overwhelming majority of AN do NOT grow.
"tumor growth occurring beyond the fifth year of observation is very rare". Appears to support your position, but would NOT have been my initial assumption. I had assume the majority of ANs were slow growing at 2mm per year, so all of the surgeries on 2.0cm and above, would have assumed a tumor for around 10 years or more. But based on this data, it would appear ANs agressively grow for several years and then remain in a stable state.
Are these fair conclusions?
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Tough to grasp the data, perhaps my experience is clouding my judgement.
"70.2% was unchanged in size". Sounds like the overwhelming majority of AN do NOT grow.
"tumor growth occurring beyond the fifth year of observation is very rare". Appears to support your position, but would NOT have been my initial assumption. I had assume the majority of ANs were slow growing at 2mm per year, so all of the surgeries on 2.0cm and above, would have assumed a tumor for around 10 years or more. But based on this data, it would appear ANs agressively grow for several years and then remain in a stable state.
Are these fair conclusions?
fair conclusions? What do YOU think?
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caryawilson,
Your assessments appear correct regarding "70.2% was unchanged in size" and "tumor growth occurring beyond the fifth year of observation is very rare", however the 2 mm per year concept is the problem. If we average the growth rate over the five years, that figure is correct, but the growth rate varies with time as per Table 1 of the first article, which is reproduced below:
TABLE 1. Mean Annual Growth Rate in Intrameatal and Extrameatal VS, Related to Tumor Size and Year of Established Growth after Diagnosis
Intrameatal (n = 39), Extrameatal (n = 93)
mm/yr mm/yr
1st yr 10.32 4.90
2nd yr 3.83 2.79
3rd yr 2.17 1.15
4th yr 0.92 0.75
Here are my interpretations. These figures are for growing tumors. Some would grow faster and some smaller. Some would be observed late in their growth phase. It would appear that growth is most rapid straight after genesis; let's say a possible average for extrameatal tumors is 10 mm in the first year, 5 mm in the second year (1 year after diagnosis), 2.5 mm in the third, 1.25 mm in the fourth, 0.75 mm in the fifth, 0.375 mm in the sixth, etc. In this case, the tumor would eventually grow to 20 mm. However, I suspect that once a tumor has grown for a few years it can no longer sustain itself and growth either ceases or even shrinkage can occurs in "4-22%" of cases [my current best guess is ~12.5%, on average, shrink]
Understanding the findings (for us) and understanding the mechanics (for the authors) is an important step in unraveling the mystery of an acoustic neuroma.
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I've been "watch and wait" for the past twelve years based on the assumption that my small tumor would not grow, and actually it's only grown a tiny bit (from 1.4 x 1.3 x 1.1 to 1.7 x 1.3 x 1.1). At one of the conventions I attended, a panel of doctors said that many people die with the tumors still in their head. This heartened me. But.......at age 74, with what the doctors call a "slow growing AN", I'm having the dreaded retro-sigmoid surgery. Why? My tumor has grown just enough to encroach on my trigeminal nerve, causing excruciating pain, and the meds don't work anymore. So I guess they can grow a little. Sometimes. And that tiny bit of growth can wreak havoc. Sometimes.
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sharonov, sad to hear you have excruciating pain. Regardless of size change, unbearable symptoms need to be addressed. Did you do your MRI and measurement interpretation at the same place by the same person? I askthis as there are measurement variations, even if the same place and person does them, but this variation increases if another center or person is doing the interpretation.
How long have you had trigeminal nerve pain?
A 2 mm growth in 12 years is consistent with the findings reported in the papers.
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During my last flareup of trigeminal pain, in 2012, I sent my MRI to four doctors. They disagreed as to whether it was caused by my AN. Then the pain stopped so I chose to forget about it. When the current pain started it was different--more intense, more electrical, truly unbearable. And the medication sometimes no longer touches it, So I sent my MRI to 3 different top surgeons--one who was recommended by the president of the Trigeminal Neuralgia Association and two that were highly recommended on this site. All agreed that the pain was caused by the AN. This time it's not going away, and I fear that even if it does, the next round may make me think about the name "suicide disease", which is TN's nickname. By then I may be too old to operate aggressively, as I'm even pushing it at 74 for a retrosigmoid. Anyhow, my big regret is that I didn't have either radiation or cyberknife when it was first diagnosed.
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AN Sydney,
Mine grew from 2.7cm to 3.5cm in nine months after diagnosis. Was that covered in any of your articles?
Rich
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Rich,
That's a rapid growth. I don't think I've come across anywhere near 8 mm growth in 9 months. And your tumor was large to start with.
Did your tumor have a cystic component (they appear to have sudden growth spurts)?
Did you get the MRI done at the same place and interpreted by the same operator? Some include the IAC component and others do not. Did you take a look at the MRI scans and see anything unusual?
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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.
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BTW, I had my MRI done at the same place each time, at a large facility in Chicago. It was evaluated by whatever radiologist was on duty and sent to the neurosurgeon with whom I was working at the time.
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The first paper presented in this topic was http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf [Ref. 1]. An interesting article http://link.springer.com/article/10.1007/s00405-008-0791-9 [Ref. 2] supports the first paper.
Ref 2’s Fig. 1 is remarkably similar to Ref 1’s Fig. 3, but not at first glance. Ref 2 shows a probability of growth about twice that of Ref. 1. Ref 2 also shows significant growth probability continuing past the fourth year. Are they showing the same information?
Ref 1 defines growth as more than 2 mm, while Ref 2 defines growth as more than 1 mm. This results in long term growth for Ref 1 at 28.9% for extrameatal tumors and for Ref. 2 at 73% for extrameatal tumors. Changing the growth definition explains most of this difference.
Ref 2, considering extrameatal tumors, has a high degree of drop out (patients that were lost to follow-up). In year 4 there are only 6 remaining patients, in year 5 only 4 patients and in year 6 only one patient. These are statistically small samples and due to the inferences made from the few remaining patients for the entire study population, just one growth beyond 1 mm has a large effect on the graph. This is evident by the smoothness of Ref 2’s Fig 1 in the early years, but large stepwise changes in the later years. The steps seen beyond year 3 appear to be single patient incidence of tumor growth beyond 1 mm. If we ignore the later years, the extrameatal growth probabilities could plateau at about 60%.
So, given the different definitions of growth and Ref 2’s very small number of patients in the later years, the two graphs show remarkably the same thing.
What is perplexing is that Ref 2, which was published in 2008, did not reference Ref 1, which was published in 2006. They are basically both examining untreated growth of vestibular schwannoma tumors!
Ref 2 has some additional interesting pertinent information. As already stated, for extrameatal tumors, the paper states growth probability is 73%. However, if there is long duration of hearing loss, no unsteadiness/vertigo and hearing loss, when it did occur, was sudden, then the probability of growth drops to 12.7% within the first two years.
What the authors don’t consider is that long term hearing loss and absence of unsteadiness/vertigo both point to a lengthy period since inception of symptoms. The long term hearing loss speaks for itself. If the tumor has been growing (slowly) for an extended period, the vestibular system is expected to compensate. That all supports the summary of “Tumor growth occurring beyond the fifth year of observation is very rare”.
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Thanks for posting the research. It's always interesting to read about ones illnesses! And there will always be exceptions to whatever study is done.
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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.
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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.
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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?
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Rich, I agree, for a 2.7 x 2.6 x 2.3cm tumor, your follow up MRI should have been at 6 months.
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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.
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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."
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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
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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,,
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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?
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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/
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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.)
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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.