ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Kate B on February 09, 2008, 09:08:40 am
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Hi all,
As many of you know, I am a person that looks for trends and relies on data so that persons can make an informed choice. This report was posted on the other patient listserv.
It was a small study done on patients who chose surgery after GK. The conclusion suggests that it is more difficult to operate after radiation which makes sense because the treatment "burns" the region. Of the findings, the facial nerve preservation was what caught my eye as all of the patients had lost hearing prior to the surgery.
<The function of the facial nerve deteriorated in 3 patients, was unchanged in 7, and improved in 2.> That means in 75% of the cases, facial nerve function was unchanged or improved..
That being said, if radiation arrests the tumor in 97% of the patients, surgery would never need to be a consideration.
Kindest Regards,
Kate
Microsurgery for vestibular schwannoma after gamma knife radiosurgery.
Shuto T, Inomori S, Matsunaga S, Fujino H.
Department of Neurosurgery, Yokohama Rosai Hospital, Yokohama, Kanagawa, Japan, shuto@yokohamah.rofuku.go.jp.
Background. We evaluated the clinical characteristics of microsurgery for vestibular schwannoma (VS) after failed gamma knife radiosurgery (GKS).
Method. Twelve patients, 5 men and 7 women aged 19 to 70 years (mean 54.5 years), who underwent microsurgery after failed GKS for VS were studied retrospectively.
Findings. The median interval between GKS and microsurgery was 28.8 months (range, 6.6-120 months) and 4 patients had undergone previous microsurgery. The mean volume of tumour at GKS was 6.9 cm(3) (range, 0.5-19.7 cm(3)) and the mean prescription dose to the tumour margin was 12.3 Gy. Microsurgery involved the lateral suboccipital approach in all patients. Tumour expansion involved solid enlargement in 7 patients, cystic enlargement in 3, and central necrosis in 2.Bleeding was slight in all patients except in one, probably because of the pr evious irradiation. Adhesion to the brain stem was severe in 7 patients. Identification of the facial nerve was easy in 5 operations and difficult in 7. Dissection of the tumour from the facial nerve was difficult in most interventions because of severe adhesions or colour change. Severe adhesions between the trigeminal nerve and the tumour was observed in 2 patients. The tumour was subtotally removed except around the internal auditory canal in most patients. Only one residual tumour increased in size and needed second GKS. The function of the facial nerve deteriorated in 3 patients, was unchanged in 7, and improved in 2. All patients had lost hearing on the affected side at the time of microsurgery.
Conclusions. Microsurgery for VS after failed GKS presents some technical difficulties. Dissection of the tumour from the facial nerve or brain stem is likely to be difficult. We recommend subtotal resection without dissection of the facial nerve and tumour, because growth of the residual tumour was rare in our series.
PMID: 18253695 [PubMed - as supplied by publisher]
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Kate - Thanks so much for this. It's exactly the kind of information I need right now and am, it seems, unable to find on my own. The statistics are fairly comforting...even citing " improvement" , but basically, I find if whatever it is that I'm facing is broken down to concrete info bytes that I can manage, then I'm in a better place. ( I'm the post GK 6 year looking at what's next person ). re statistics , was it George B Shaw that said " there are lies, damned lies and statistics " ? ..are the statistics for acoustic neuroma still 1 out of 100,000 or have the chances risen with the Rise of the Cellular? BUT statistics, in the right quantity, still work for me somehow.
Elise
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Why I find this and similar reports not as helpful as they might be:
1. What are they comparing these 12 surgeries to? If they are comparing the results to 12 first-time surgeries, they should say so. It would be better if they compared them to 12 second-time surgeries following 12 failed first surgeries, but at least they should state their comparison basis.
2. 4 of the 12 cases had undergone previous surgery. They make no effort to identify the outcome of those 4, whether there was adhesion to the brain stem in those 4 cases; whether identification of facial nerve was easy, and so on.
3. How do these results compare to surgery of similar sized tumors in general? Each issue they describe, facial nerve entanglement, brain stem adhesion, dissection difficulties, and so on, occurs in some cases of first time surgery. There are posts in this forum describing each of these scenarios. How does 25% facial nerve deterioration compare to first time sub-occipital procedures?
4. The evidence that surgery after radiation sometimes encounters difficulties is undeniable. The important question, though, is whether this potential difficulty is significant enough to be a factor in deciding on initial treatment. That means we need to know
A) how does surgery-after-radiation compare to surgery-after-surgery (not how does it compare to first time surgery). Many of the problems encountered would also be encountered if the first treatment had been surgery. First time surgeries also fail, and at about the same rate as radiation.
B) given the likely rate of failure of radiation to control, and the range of results in follow up surgery, how important is this consideration? Using the numbers above, you have 3% chance of radiation failure, and 25% chance of the facial nerve deteriorating in the follow up surgery. That's less than a 1% chance of a facial nerve problem overall. That's still a nice low number.
There is a bit of anti-radiation spin in the presentation of these kind of results. A truly fair report would compare the results to 12 cases where a second surgery was performed after a failed first surgery, to really assess the difference that radiation vs surgery makes in the event of regrowth. The conclusion here, "Microsurgery for VS after failed GKS presents some technical difficulties", is valid, but begs the question "Does microsurgery for VS after failed surgery present some technical difficulties as well?" I would like to see some one address the question more directly.
Steve
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Steve,
Your questions are valid and if I may, I suggest writing the doctors in the publication as the contact email is there.
This abstract would be the shortened version of the entire research report.
My reactions to your questions:
1 and 2. The scope of this study didn't appear to be a comparison of one form of follow up treatment to the initial treatment for the first time patient or follow up surgery. Those results are out there in different studies.The scope of this study was to report on how these 12 patients fared in surgery after having had GK. My guess is that the four with surgery previously were those with debulked tumors and then GK.
3. Again, the study wasn't trying to compare how second time responders fare compared to first or second time responders of another treatment. It was to detail the outcomes for those needing surgery after GK. At one time I did compile the various statistics from many different reports so that I could get at the picture you are trying to get. I used to offer it on this website in 2001 (old format) and as late as 2005 on this website until I felt that it was getting outdated. I can dig it out if it would be helpful. It helped me decide on my own treatment.
You ask about comparative statistics. Statistics published about Translab and Middle Fossa are on the HEI website relative to facial nerve outcomes and hearing. I've copied the Translab results because they usually deal with bigger tumors. http://www.houseearclinic.com/pro_acousticneuroma.htm
Translabyrinthine Approach A recent review from our database of vestibular schwannoma cases provides data from 1302 patients who underwent a translabyrinthine approach between 1982 and 1993. Their mean age was 50.0 years, and 46 per cent were male and 54 per cent were female. Tumor size varied from 0.5 to 6.5cm, with a mean size of 2.4cm. Operating time averaged 3.3 hours. Three (0.2 per cent) deaths occurred in this series.
Data on long-term (6 months) facial nerve function as determined by the House-Brackmann scale were available on 889 cases, with a mean follow-up time of 2.1 years. Of these, 58.2 per cent had a grade I function; 12.6 per cent, grade II; 13.2 per cent, grade III; 7.8 per cent, grade IV; 3.3 per cent, grade V; and 5.1 per cent, grade VI. In this same group of patients undergoing surgery since the advent of facial nerve monitoring (1988), 59% were grade I, 15.4% were grade II, 9.3% were grade III, 7.7% were grade IV, 4.2%, were grade V and 4.5%, grade VI. The vast majority of the poor facial nerve outcomes occurred in larger (greater than 4 cm) tumors. When comparing the risk of facial nerve paralysis in comparable tumors (<3.0 cm), the surgical risks in our hands are only a few percent greater when compared to the most recent gamma knife reports cited above.
4. Actually, I thought that these statistics were promising to those needing surgery after radiosurgery. I am an advocate of "One Size Does Not Fit All".To me the larger question is what are the short and long term outcomes related to treatments and how does that match up with a person's age, location, size etc... (see Guide to the decision making process)? For example, with surgical patients, hearing levels are typically known in the short term; in radiosurgery, the hearing levels can deteriorate over several years because the radiation effects take longer.
I actually didn't interpret it as an antiradiation spin...It documented results with 12 (small number) patients. To me, the interpretation is left to the reader. It is what it is....the results are what they are
Kate
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Actually, I thought that these statistics were promising to those needing surgery after radiosurgery.
Kate, I agree with that, and I think it is useful for Elise, or anyone in a similar situation. I only wish this kind of result was limited to that purpose.
However, it is not. It is often cited not only by patients, but by surgeons and doctors, as a reason not to do radiation in the first place. That interpretation of this result is bad science, bad math, and bad medicine. A 1% chance of facial nerve damage as a result of failed radiation plus complications in follow up surgery is not a good reason to avoid radiation as an initial treatment. If that argument is to be made, it must be based on a fair comparison of apples to apples.
That is why I react to it the way I do. It is not these researchers' fault, or yours, but rather the fault of those doctors who take this kind of result out of its specific context, and use it as a scare tactic with patients who are trusting them to give good advice.
Steve
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Actually, I thought that these statistics were promising to those needing surgery after radiosurgery.
Kate, I agree with that, and I think it is useful for Elise, or anyone in a similar situation. I only wish this kind of result was limited to that purpose....................
That is why I react to it the way I do. It is not these researchers' fault, or yours, but rather the fault of those doctors who take this kind of result out of its specific context, and use it as a scare tactic with patients who are trusting them to give good advice.
Steve
Steve,
As patients the result is our lives...our health... (no matter which treatment and no matter the caring or compassion demonstrated by a physician), for doctors it is really their livelihood( their job). The medical profession uses information to make their own cases to persuade us that it is the right choice. Unfortunately, there are surgeons who do that and there are radiosurgeons who use surgery outcomes the same way. Goodness, surgeons have a preference for certain surgical procedures. Recently on youtube, I watched an FSR doctor from NY discuss his procedure to a group in Paris. The statistics used for surgery were old and outdated. It was the "fear of surgery outcome" factor that was used to persuade people that this treatment was correct. The reason should be his explanation of how the fractionated treatment works and his data. I think you'll agree, the "fear" factor goes both ways.
Yet the researchers and peer reviewed medicine are critical to improvements in the field. Take GK for example. The have lowered the dosage due to their studies of patients.
The only thing we have as patients is the research to know the outcomes. Just because I had a positive outcome with middle fossa surgery, it may not generalize to a larger population. That is where the NUMBERS do become important. They show the result for groups of people using a treatment and with varying attributes (age, size, location) Just because you had a positive outcome with cyberknife, doesn't mean it can be generalized to the masses. It is the research that shows the results for groups of people and there are generalizations that exist even with the uniqueness of these darn tumors. So while I agree with you that they should not be used as scare tactics. I do believe there is great value in sharing data.
Patients get only one first best chance at treatment. After that it is trying to correct a side affect (including regrowth)-with either treatment. We do believe our doctors. There is no doubt that you have to have total trust in your doctor..after all you are placing your future outcome in their hands.
My attempt continues to be for patients to become an informed patient so that they are fully aware of the "norm" for a typical tumor in a certain location, with a certain size etc... My avenue since 2001 has been to provide patients with a "toolbox of information" including the decison making process guide, the question guide, the AN Chart,the ANWorld website,...
I was a person with AN. I continue to try to Pay if Forward by being an advocate for patients through tools that help them make an informed decision.
I appreciate the intellectual banter.
All the best,
Kate
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again, all... and as noted... it is all based on personal preference as well as skill of treatment physicians. Please know that radiosurgery techniques (ie: CK and GK) are being redone and have proven sucessful, if necessary, as the failure count is small in numbers (low % of failures that even warrent a re-treat) for both protocols (we tend to hear about them more since the www is readily at our fingers and people note them here more, but please keep in mind the numbers/% across the board for those that don't post here... % are still relatively low of the failures) . An article will be noted in the upcoming ANA newsletter that is going to final print now, as shared with me and JoeF by the ANA.
Yes, surgical removal after a failed radio-process can be tricky..... and I have faith in everyone to work closely with their treatment team to find what works best for their individual situations.
*sits back with popcorn and martini*
Carry on. I love a lively debate! :D
Phyl
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I still want to know the answer to this question:
Is surgical removal after a failed surgery tricky? My contention is that it is, due to formation of scar tissue from the first surgery. In fact, I believe that surgical removal after any failed first treatment is more difficult, because of the trauma from the first treatment.
I cannot understand why the medical community does not address this question in a direct manner. It is absolutely relevant to understanding the meaning of published reports such as the one cited in this thread. Is the result specific to radiation treatment, or is it a general consequence of any first treatment? Only a side-by-side comparison will tell, and no one to my knowledge has been forth coming with that comparison, despite having the opportunity to do so.
Steve
PS: I don't suggest that radiation is the cat's meow of treatment, or the best for everyone, but I do think it deserves to start out with equal footing, and be evaluated for each case with fair and reasonable comparisons. And I also appreciate having a lively discussion...
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Steve -
not to stir up the lively discussion, but can anyone really answer this question?
I'm thinking it falls along the lines of "everyone is different". Couldn't the medical professionals tell us their opinion(s), but not be 100% sure ???
Could it be more difficult for some patients, but not for others ???
Just a thought,
Jan
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Oh go ahead, stir up the lively discussion. :)
I'm sure everyone is different, and a second surgery would be more difficult in some cases than in others.
My point is just that evaluating second surgeries after both radiation and first surgery would give a better picture of whether having radiation or surgery first makes any difference. You would still have to document how often, and how much, the second surgery was more difficult, since it won't be the same in every case.
Fortunately, the regrowth rates are low for both radiation and surgery, so it should not in my opinion be a major factor anyway. Still, I would like to know if there is any difference, but you can't answer that by just documenting one of them.
Steve
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Just to point out there was a similar study by Drs. Pollock, Lunsford, Kondziolka, et. al., from Mayo Clinic and UPMC that concluded, "No clear relationship was demonstrated between the use of radiosurgery and the subsequent ease or difficulty of delayed microsurgery." www.jnsonline.org/jns/issues/v89n6/pdf/n0890949.pdf (http://www.jnsonline.org/jns/issues/v89n6/pdf/n0890949.pdf)
This issue is also addressed in the "AN Myths" section of the AN Archive website. http://www.anarchive.org/myths.htm (http://www.anarchive.org/myths.htm)
They note, as did Phyl, that the skill and experience of the surgeon is critical with these procedures due to the different texture of the irradiated tumor.
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Thanks jb for sharing this Mayo article. Interesting, to me, that the study only noted GK patients (understandably so) and the failure rate noted was less than 3% and much of the microsurgical was, for the most part, successful. Another good reference.... thanks again,
(btw, the popcorn bowl is now empty, if I make more, anyone want any?) :)
Phyl
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JB,
I have always respected UPMC because they undergo peer review prior to publishing the research.
I find the conclusion interesting in light of the fact that they found 8 of the 13 more difficult, 4 the same, and one actually easier. Actually this article answers some of Steve's earlier questions too. Later in the article there is reference to scarring. The surgical cases in themselves have a variety of elements surrounding them.
I guess that second bag of popcorn is needed:-)
Here is part of the abstract:
Methods. During a 10-year interval, 452 patients with unilateral vestibular schwannomas underwent gamma knife radiosurgery. Thirteen patients (2.9%) underwent delayed microsurgery at a median of 27 months (range 7–72 months) after they had undergone radiosurgery. Six of the 13 patients had undergone one or more microsurgical procedures before they underwent radiosurgery. The indications for surgery were tumor enlargement with stable
symptoms in five patients, tumor enlargement with new or increased symptoms in five patients, and increased symptoms without evidence of tumor growth in three patients. Gross-total resection was achieved in seven patients and near-gross-total resection in four patients. The surgery was described as more difficult than that typically performed for schwannoma in eight patients, no different in four patients, and easier in one patient. At the last follow-up evaluation, three patients had normal or near-normal facial function, three patients had moderate facial dysfunction, and seven had facial palsies. Three patients were incapable of caring for themselves, and one patient died of progression
of a malignant triton tumor.
Conclusions. Failed radiosurgery in cases of vestibular schwannoma was rare. No clear relationship was demonstrated
between the use of radiosurgery and the subsequent ease or difficulty of delayed microsurgery.
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*starts popping new bag of popcorn*
Kate, to me... the remaining part of the "conclusion" is more of the key....
"Because some patients have temporary enlargement of their tumor after radiosurgery, the need for surgical resection after
radiosurgery should be reviewed with the neurosurgeon who performed the radiosurgery and should be delayed
until sustained tumor growth is confirmed. A subtotal tumor resection should be considered for patients who require
surgical resection of their tumor after vestibular schwannoma radiosurgery."
just my opinion.... no biggie
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Pass the popcorn, please. :)
I followed jb's link to the AN Archive, to find these two statements:
"Dr. Chang at Stanford performs both traditional surgery and radiosurgery (Cyberknife) on acoustic neuromas. He said it is false that it is more difficult to perform surgery after radiation." That's my guy. :)
"Note that the same issue exists for repeat surgery, since the first surgery usually leaves behind scar tissue with different texture. It is well known that repeat surgeries can be more difficult because of this scar tissue." This is not attributed to anyone in particular, but it is the point I am making.
Treatment after regrowth is more difficult. Whether you had radiation or surgery the first time. Whether you have radiation or surgery the second time. But not much more difficult in any event.
Plan A) Don't have regrowth.
Plan B) Talk to a surgeon and an oncologist, and treat it again if you have to.
Steve
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Steve,
You always seem to have the words of wisdom! I had the regrowth and also found out that the scar tissue is the problem after the first surgery. My first tumor was huge and the scar tissue was very extensive. Interestingly, different neurosurgeons were afraid of the scar tissue at different sites. For some, it is at the entry point but not so much at the brainstem, for others, it is at the brainstem but not at the entry point. There were also very competent neurosurgeons who refused me by saying that they don't want to deal with any scar tissue the second time around and if they operated, I would have been guaranteed a poor outcome!
I investigated GK only so I cannot make any claims regarding CK. One of the neurosurgeons who does both radio- and micro- told me that GK can be done again and the surgery after GK is NOT more difficult. His criteria was no growth after two years and surgery if there continued growth after two years. I suspect that time after the radiosurgery might be an issue. The change in tumor texture is probably not instantaneous and happens over a period of years, so it becomes more difficult to operate seven years after the radiotherapy than two.
I wish I could follow your plan A!
Eve
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I can't turn down free popcorn! :)
Similar to the Japanese study, some of the patients (6 of 13) in the Mayo/UPMC study had undergone microsurgery prior to their treatment with GK. In the body of the paper, the results were broken out along those lines:
Of note, five (83%) of the six patients who had
undergone prior microsurgery were believed to have tumors
more difficult to resect, compared with three (43%)
of seven patients who had not undergone prior surgical
resection.
I think this addresses some of Steve's prior questions pretty directly and explains why the Mayo/UPMC researchers reported no direct link between GK (alone) and difficulty of follow-up surgery.
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*passes popcorn down the line*
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Steve -
thanks for the clarification and the wise words of Dr. Chang.
I'm ending my participation in this livey discussion for now - mainly because I don't have a dog in this fight; and hopefully never will.
As far as I know, my AN has not returned. I won't know for sure until May or June when I have my 1st annual MRI though, so I'll keep this post handy.
Phyl, thanks for the new bag of popcorn; glad you made it. You might want to pop another; this topic has the potential of being discussed for quite a while ;D
Jan
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Boy this popcorn tastes great ;D
After rereading (yes, I've read it twice) there was a really important piece of information buried in all of that detail.
<Radiation related cranial neuropathies (facial nerve) occur in less than 10% of patients. They seem to appear between 6 months to 18 months after radiosurgery. Operations after radiosurgery should be avoided during that time following radiosurgery as that is when the cranial nerves and the brainstem are at their maximum point of injury secondary to radiation treatment.>
Also, they mentioned that the original radiosurgeon should be in communication with the surgeon. In the first case study on an elderly woman, her surgery may have been unnecessary.
When I read all of this information, it reminds me how tricky these tumors become as they grow larger.
Who wants the popcorn next? Please pass the pop as well.
Kate
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As far as I know, my AN has not returned. I won't know for sure until May or June when I have my 1st annual MRI though, so I'll keep this post handy.
Jan, for some reason, I thought you were further along than that. The first annual MRI will be a nice milestone to reach. I'm betting yours will be whistling clean. ;) And you can always stick around for the snacks, even if you don't have a dog in the fight. :D
Radiation related cranial neuropathies (facial nerve) occur in less than 10% of patients. They seem to appear between 6 months to 18 months after radiosurgery. Operations after radiosurgery should be avoided during that time following radiosurgery as that is when the cranial nerves and the brainstem are at their maximum point of injury secondary to radiation treatment.
Kate, that is a really good point. It makes sense, since radiation treatment does take a while to take full effect (drums fingers on desk...). You really need to wait two years before deciding if you have regrowth, and certainly before doing anything further. I think these tumors are tricky whatever size they are.
Okay, enough popcorn, got any peanuts? :P
Steve
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*passes bag of trail mix with peanuts, raisins, cashews and M&M's.......... sits back to see the ongoing (and I commend you all, highly respected) debate!* :)
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Ah, now Phyl's bringing out the chocolate ;D Maybe, as Steve suggested, I should stick around for the snacks LOL
Thanks for the kind thoughts re my 1st MRI Steve; I'm fairly confident it won't show regrowth, but never say never. Only time will tell.
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The title question is a tough one to answer that's for sure. From my own reading over the years I guess the answer in my inexperienced mind would be yes and no. Maybe 75/25 being harder or 80/20. My guess would be that the 75-80% of tumors that are harder to remove post radiation are medium to large and the better outcomes were likely with the smaller tumors??? Rick Friedman from House has a powerpoint presentation posted on the net done around 2004. It showed a tumor prior to first time surgery and a tumor prior to microsurgery following radiation. The tumor that was NOT radiated was clearly defined whereas the radiated tumor was splayed and less defined making it more challenging to remove. Scar tissue is a problem and common following both surgery and radiation so to what extent does this affect the outcome?? I don't know! My gut feeling tells me that if one doesn't work try the other. For instance, if you have a failed surgery try radiation and vice versa. There are many fine institutions that can handle these tumors the first time but when dealing with a regrowth from either surgery or radiation then I suggest the best in both fields. However, that is not always the case. Another one size doesn't fit all situation. I'm sure there are patients that are willing to give both treatments a second chance. On a recently purchased cd from last years symposium Dr. Brackman did state that hearing is not possible to save following radiation and the facial outcome was good but not as good as first time surgery and the larger tumors tend to fall a grade on the scale. That's what I gathered.
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Gee - this is better than watching Hillary and Obama - oops, hope this doesn't get into a political debate!! :o
Sheryl (6 year wait and watcher)
Larry (CK on meningioma regrowth 10/1/07)
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I wanted to thank jb for posting that quote from the Mayo/UPMC article. Its good to see there are some reports that acknowledge that scar tissue forms with either kind of treatment. I also like FlyersFan68's answer to the title question: "yes and no", which pretty much sums it up. I suppose another way to say it would be "what, did you think it would be easier?"
It just got a little closer to home for me, since I just made the appointments for my 6 month MRI and hearing test in March. Hopefully plan A - no regrowth - will apply to me. Actually it's the hearing test that I like the least. Although my hearing doesn't seem to be any worse, I'm pretty sure the ENT is going to suggest a hearing aid for my left ear. If this topic runs out of steam, maybe we can discuss whether "use it or lose it" really applies to partial hearing loss...
Thanks for the change in snacks, Phyl. :) Hey, who picked out all the cashews already?
Steve
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It wasn't me; but I did pick out the M&Ms ;D
Chocolate gets me every time ;D
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Time for another handful of popcorn and trail mix (this is a fine bunch in that all the M and M's and cashews are gone). Dibs on the almonds.
....I posted this same lead question on the Cyberknife forum and I am appreciative for the quick response from Dr. Medbury.
"THere is a lot of prejudice but precious little data. One obvious problem is that it is very difficult to quantify "more difficult". Another problem is that radiosurgery failures are sufficiently infrequent that there are not many cases requiring surgery after radiosurgery. We have had only a single AN failure, and it was operated on without difficulty. THe surgeon said it was no more difficult than usual. Given the success rate of radiosurgery (95-98%), I'm not sure it is even a pertinent discussion. You don't make today's choice based on a 2-5% chance of failure."
I will keep looking for info...
Kate
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It just got a little closer to home for me, since I just made the appointments for my 6 month MRI and hearing test in March. Hopefully plan A - no regrowth - will apply to me. Actually it's the hearing test that I like the least. Although my hearing doesn't seem to be any worse, I'm pretty sure the ENT is going to suggest a hearing aid for my left ear. If this topic runs out of steam, maybe we can discuss whether "use it or lose it" really applies to partial hearing loss...
Steve,
When is your date for your MRI?
Kate
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Tuesday, March 12, 2008. 8:45 am. PST. :)
It seems to me that everyone I encounter who has tried hearing aids (not talking BAHA or TransEar here) complains about them - things like noise, feedback, echoes. Maybe I will just make do with what I have, I seemed to be getting pretty used to it now.
Eh, what was that?
Steve
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Maybe I will just make do with what I have, I seemed to be getting pretty used to it now.
Steve
Steve -
I wonder if that's because you have partial hearing loss as opposed to total hearing loss. Does that make a difference ???
It's good to hear (no pun intended) that you are used to your hearing loss. I totally hate mine, which I guess is what is leading me to the BAHA. Not hearing anything from one ear makes me feel VERY old :( Plus, I'm tired of saying "What?" It's gotten to the point where my children get tired of repeatingly themselves, so they just give up and don't tell me what they originally said, which is very frustrating for me.
Here's hoping that your MRI follows "Plan A"; I'll keep my fingers crossed.
Best of luck,
Jan
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I've enjoyed the discussion so far. I am trying to decide what to do about my 7mm AN. The dr I met with is recommending surgery in part because of the subject posted here. I am going to call my friendly neighborhood CK center tomorrow and schedule an appointment and see what they have to say. I have the feeling that the surgeons are going to recommend surgery and the CK guy is going to recommend CK. Hmm. I do think that even if I have regrowth following CK, the surgery would not be too much worse since it is very small (relatively) at this point - meaning even if CK is a total failure, I'd likely still have an AN of much less than 1 cm in a year or two.
Off subject: I've had a hearing problem since about 1988, though noticably and progressively worse in about the past 10 years. Does that mean that my 7 mm AN has been growing for 20 years?? What do you think?
Thanks for all the links and statistics - there's a lot to think about.
Tamara
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I have the feeling that the surgeons are going to recommend surgery and the CK guy is going to recommend CK.
Tamara, I think you are catching on now. ;) Yes, that will probably be the case, leaving the final decision up to you, the person with no prior experience or training in AN. Isn't it a great system we have? :D
I think your view of possible regrowth after CK is very sensible, a small regrowing AN should not be a huge challenge surgically. I think someone posted elsewhere (Kate, maybe?) a quote from Dr. Medbery, saying in effect "you don't make a treatment decision today based on a 1 or 2% possible outcome", which I think is also very sound advice.
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Jan, I'm sure you are right, having some hearing on the left side makes it much better than having none. I was just at a Portland ANA group meeting, and while I was talking and looking elsewhere, someone asked if I still had directional hearing. They all laughed as I scanned around the room, trying to work out who had asked that. It is not fully functional, and I do say "What?" a lot, but it is not as disorienting as SSD.
Who knows? Despite all my grumbling about it, I may end up trying some sort of hearing aid or listening device anyway. Maybe they have a good one now...
Steve
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Did you notice that Phyl didn't offer any of the martini? Hmmmmm?
Well, I tried to follow all of this and all I know is this: When I go to see my doctor this coming Friday and he tells me that maybe it failed and we have to do something else, I'm not going to be a happy camper. But I don't anticipate that to be the case.
Carry on..
Sue in Vancouver
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Sue,
I did notice that the martinis,okay cosmopolitans, ran dry... :)
Phyl, must be off the cruise ship and at a port...
I hope for the best for you on Friday.
Steve: yes it was my post from Dr. Medbury.
Tamara: I remember being very confused by the same thing (being the ideal candidate for all treatments). That is why I wrote the guide through the decision making process. http://anausa.org/forum/index.php?topic=5786.0 It helps you prioritize what is really important to you... For example, if getting it out of your head is important, it eliminates certain treatments. If size is a factor, it might eliminate others. You will be surprised, but one day you will all of the sudden know what you need to do...All the best.
Kate
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Hi Everyone - Been following this interesting topic as my husband had CK on 10/1/07 for another type of benign tumor called a meningioma. He had surgery first in 2004 to remove the tumor and was told "they got it all"!! Well, unfortunately, the regrowth was found in November, 2006 - we were told there was a small percentage that could grow back. He refused another surgery and went the CK route. It is now almost five months and because of problems, which may just be from the CK treatment, the recommendation may be "surgery". We will find out more in the next week with local followup along with a package of MRI's and records sent to Dr. Medbery and Dr. Chang for their input.
Tamara - check the CK board and write to Dr. Chang - he would give an unbiased answer as he is a neurosurgeon who also advises and uses CK when he thinks it would be best. He voluntarily will look at your MRI's and records.
Sheryl (Wait and Watcher for 9th cranial nerve schwannoma)
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Hi Sheryl, I remember your husband, he hits six months post CK on April 1st - not a great day for a doctor visit. :)
I believe his case could raise the question "Is Surgery after Radiation after Surgery more difficult?", which should send all of us reaching for that martini shaker or something.
I'm glad to hear you are contacting the "big guns", i.e. Medbery and Chang, I would want their opinion if I were in your shoes. I'm hoping they come back with a diagnosis of swelling, and a prognosis that all will be well soon. Maybe that's wishful thinking, but it seems like there is a chance.
Best wishes, Steve
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Hi Steve (and others) - Always get a chuckle out of your answers - thanks.
Got a call from our local neuroradiologist (and friend of ours) who was away last week when latest MRI was done. He reviewed it and said that everything looked stable from the last on 12/26/07 (when hubby was hospitalized with focal/partial seizure) and also back to MRI's since CK. Even though not a radiation oncologist, he is familiar with CK and felt that what he was seeing could still be effect from the treatment (swelling). Also had visit today with neurologist who said "don't make appt. for surgery just yet". He felt comfortable decreasing the Decadron very slowly and checking hubby out in two months as long as he is stable with no events. The Decadron is causing terrible side effects - increased appetite, severe swelling of face, hands, feet, and ankles, up at 3:00 a.m. for the day, and memory issues.
Will be awaiting word from the "big guns" - meanwhile I think I'll go for the high caloric, creamy drinks like a frozen mudslide sitting on my back lanai with the thermometer reading 82 degrees (and humid) here in S.W. Florida!!!
Sheryl
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82 degrees seems like a distant memory here in Chicago.. We are getting yet another snowstorm. I must admit, the big puffy flakes are beautiful tonight as they fall from the sky. Now the grey icy stuff on the ground is another story..
That was a great first report today...Swelling is what you want to hear right now.
*Shoot*, I am keeping my fingers crossed for the report from the *Big Guns*....
Back to my latte..
Kate
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82 degrees seems like a distant memory here in Chicago.. We are getting yet another snowstorm.
Kate -
Snow is what makes Chicago Chicago - it wouldn't truly be winter without it ;D
Sheryl -
swelling sounds like positive news, let's be cautiously optimistic.
Jan
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Ah, Chicago in winter, -20 chill factors in January, those were the days...
Sheryl, that's great news. I can sympathize a little on the steroid, I had two weeks of prednisone, which was more than enough for me. It was back before diagnosis, when the the theory of the week was maybe I had a viral infection. Just that amount was driving me nuts, though fortunately I never got as far as swelling up. I feel for him; I hope the doctors will let him wind it down soon.
82 degrees in sunny Florida, now you're talking. 8)
Steve
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Ah, Chicago in winter, -20 chill factors in January, those were the days...
Steve
You sound like the voice of experience..Pretell were you from the Chicago area?
It has turned into a winter wonderland out there...Hmm..wondering if school will be called off this morning...
Kate
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Steve -
you sound like you don't miss shoveling the white stuff at all.
Guess that will be my next task - school is on, better grab my shovel.
I have to say though that it's a beautiful sight when I look out my window;
wonder if I'll feel the same after I'm done clearing the driveway ;D
Jan
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Steve, Kate, and Jan - Thanks so much for your thoughts and concern. I guess swelling is a positive thing. Unfortunately we are 1500 miles away from where the CK was done and their last comment after viewing MRI that I sent up there from 12/26/07, was "surgery should be done". It was kind of disconcerting coming from CK professionals so we're hoping that the word from the "big guns" is better - maybe hang on a little while longer so CK can do its thing.
Having been a New Englander most of my life, I've had my share of shoveling, slipping, sliding, and skidding. It is beautiful though watching Mother Nature cover everything in pure white. We do go back and forth now (thus the nickname of "snowbird") and enjoy summers on Cape Cod (where we lived originally) and winters in Florida.
Well, off to the pool !!!
Sheryl
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I grew up in St. Louis MO, then went to college in Chicago (U of C), and worked there afterwards another 3 years or so. I did actually like it, although I have a few memories of bitter cold in January that I don't miss. I have been back once or twice, in April I think, and it looked really good. I used to ride the L down from Wicker Park to work in a lab at U of C on the south side, and ride it home again late at night. I can't imagine how I did that as long as I did, I wouldn't last a week at it now. I'm getting older, I guess. :)
Steve
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Got a call from Stanford (Dr. Chang's office) today. Quite good news - he feels tumor has not changed and all is stable since the MRI done before CK. He also feels that as long as we are finally decreasing the Decadron, if no symptoms develop such as before (loss of speech which was a focal/partial seizure) that hubby can continue on without surgery necessary at this time!! We were quite pleased considering that being a neurosurgeon and a doc who would recommend CK, his opinion is unbiased. The nurse (?) who called - Ami - was wonderful and very informative, taking the time to answer questions and encouraged us to e-mail or call back if we needed. Even gave recommendation that follow-up MRI in three months would be the choice of Dr. Chang as long as hubby remains symptom free. Given that we are 1500 miles away from where we would want surgery done, this is a relief too that we don't have to get on the phone and call the airlines.
So, Steve, it looks like April Fool's Day MRI/follow-up will be put off ;)
Sheryl
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Very cool! 8)
I hope he feels better soon, and that he can continue to reduce the Decadron, or lose it all together. The report from Dr. Chang that he thinks the tumor is stable and unchanged is really good news, I think the first six months are the big hurdle. Yay for no surgery!
Enjoy your balmy warm weather. The daffodils are up here now, so I hereby declare it Spring.
Steve
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Got a call from Stanford (Dr. Chang's office) today. Quite good news - he feels tumor has not changed and all is stable since the MRI done before CK. He also feels that as long as we are finally decreasing the Decadron, if no symptoms develop such as before (loss of speech which was a focal/partial seizure) that hubby can continue on without surgery necessary at this time!!
Sheryl
Awesome news from the Big Gun!