ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: cathyroe on October 27, 2013, 03:11:09 pm
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Well, as I read someone here say "welcome to the club that nobody wants to be in", I had to finally face the music (that I can still hear) and join the forum. Diagnosed last November with 11mm X 5mm, I have visited Docs from New York to L.A., and the odd thing is how many different answers I get to the same questions.
I have been reading the forum posts a little at a time, it honestly is pretty hard to do. I've had to work my way up to it, I guess.
But now, I think I am ready to make some AN friends and stop feeling so isolated. There is no support group within 3 or 4 hour drive, so.... I hope to join the forum and find support here. So many questions.....
I am currently watch and wait, and obsess constantly (is that my eye twitching? is that an itch on my cheek or is it going numb? you know the mind games...) One doc I talked to said there is no danger to the facial nerve unless you go through treatment, but after reading posts here I get the impression that the good doctor is mistaken. Right?
Actually, it is fatigue that seems the worst. Anyone else feel that way?
My MRI in May (6 months after the first one) reports "no significant change". So, I watch and wait. Another MRI next month.
Yep, this is the club that no one wants to be in, but since we are here....hello and best wishes and prayers to us all.
Thanks for being here, I look forward to making new friends here.
Cathy
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Hi Cathy and a very warm welcome to this 'exclusive' club. It appears par for the course that the professionals each have their own take on which is the best treatment choice therefore whilst time is on your side you must do your maximum research before making the ultimate decision which will be YOUR decision and it will be the right one for you. My advice after almost 12 years in 'watch and wait' would be to stick with that option for as long as possible ensuring that you have annual MRI scans whilst acting upon the advice and guidance of a consultant in whom you have complete trust.
Glad you found us here and we look forward to helping you along your AN journey.
Best Wishes
Derek
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Hi Cathy: You are not alone! We are here to help, support, encourage, and root for you! P.
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Welcome, Cathy.
A word of caution about Watch and Wait.
It has to do with your hearing. Even when the tumor doesn't grow it's still eating away at the acoustic nerve and it often doesn't take very long to lose all serviceable hearing on the AN side.
How has your hearing progressed in the past year?
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I have no wish to be confrontational with fellow contributors to this forum but I have been sceptical of the often stated claim on this forum that an untreated AN will cause the tumour to 'eat away' at the acoustic nerve and result in inevitable hearing loss.
In furtherance I have discussed this claim with a renowned AN consultant who assures me that an untreated AN does NOT continue to 'eat away at the acoustic nerve' and that any degree of hearing loss on the affected side is solely attributable to the increase in the size of the tumour.
I am concerned that such an unfounded statement may cause those newly diagnosed with an acoustic neuroma to be apprehensive about considering 'watch & wait' as a viable and safe treatment option with the added caveat (as always!) that such a decision is always made acting upon the advice and guidance of a consultant in whom you have complete trust and that regular MRI scans are undertaken. Any escalation in symptoms and any increase in tumour size over 2mm should be the prime indicator that it is time to consider other invasive treatment options. Until then 'wait & watch' (in my considered opinion based upon nearly 12 years in 'wait & watch') remains the safest option with lesser risks of morbidity and be aware also that neither of the invasive treatment options carries any guarantees that hearing loss will not develop post treatment.
Regards
Derek
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I have no wish to be confrontational with fellow contributors to this forum but I have been sceptical of the often stated claim on this forum that an untreated AN will cause the tumour to 'eat away' at the acoustic nerve and result in inevitable hearing loss.
Also not to be confrontational, but nobody said "inevitable", only that there was a RISK of further loss of hearing during Watch and Wait and AN victims should take that into consideration because once the hearing is gone, it isn't coming back.
My own hearing went from some to none during my own period of Watch and Wait while my AN grew by about 20%. Even though my hearing was gone I wasn't taking any chances on further AN growth.
Kill the alien when it hatches and you won't have to fight it when it's 10' tall and trying to eat you alive. ::)
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A word of caution about Watch and Wait.
It has to do with your hearing. Even when the tumor doesn't grow it's still eating away at the acoustic nerve and it often doesn't take very long to lose all serviceable hearing on the AN side.
Just to clarify...the above quote appears fairly straightforward in that it commences with a 'caution' about 'watch and wait' then specifically states 'that even when the tumor doesn't grow it's still eating away at the acoustic nerve'. That claim is totally incorrect and the implication is that the incorrect assumption will result in the loss of all serviceable hearing on the AN side which is simply not the case as only enlargement of the tumour can result in hearing loss.
Those who are newly diagnosed and contemplating all of the available treatment options, particularly 'wait and watch' must be furnished with factually accurate data to assist with their all important decision making process.
Regards
Derek
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Those who are newly diagnosed and contemplating all of the available treatment options, particularly 'wait and watch' must be furnished with factually accurate data to assist with their all important decision making process.
We're in agreement on that.
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I stand by DEREK.... In 2007 diognosed I was crushed, especially with who wanted to this and who wanted to do that to me. Thank God there were alternitives like what I found on "The Wait and Watch Brigade" board, in a pro active setting. I`ve followed it ever since adding my own ideas into the mix and have come up to some very good quality of life years. I`m feeling actually better than when first diognosed ALL respects.. It may not be for everybody but in my opinion should be the first step if possible with such a slow moving tumor. Wishing all my AN friends the best! Mickey P.S. Thankyou Derek!
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Welcome Cathy!
I started out on a very similar road as you. I hung around in the background here for many months reading as much as I could prior to joining in. There were times whether reading posts or medical articles that I could not last more than 15 minutes without feeling totally overwhelmed. I can tell you it does get better, and you will meet many wonderful people here to help support you - especially at those times when you feel overwhelmed.
My AN was 1.8cm when diagnosed. My first 6 month MRI report was similar to yours "no significant change". I decided at that point to monitor my symptoms (not obsess) for 6 more months while continuing my research into treatment options. The Dr.s and the literature I read mentioned how slowly AN's grow so I felt I had time Wait and Watch while continuing my research. My next 6 month MRI reported my AN had grown to 2.4cm - so much for AN's growing slow!! My hearing on my AN side went from 70% to 40%. I developed some fairly significant balance issues and decided Wait and Watch was no longer an option for me. I made a decision to move forward with Gamma Knife and have no regrets. I didn't rush my decision and I made sure to get several consults.
As for the exhaustion you asked about, well that goes with the territory. I've struggled with it for the past year and it has increased with my balance issues. Several people told me to listen to my body and get lots of rest. It's good advice! I think in the early stages the exhaustion came more from the stress of living with the AN, learning about it and trying to decide what to do. My exhaustion now comes from my brain working overtime to help correct my balance issues and perhaps from the Gamma Knife treatment. I work full time, and make sure to take 15 - 20 minutes at lunch to find somewhere quiet to sit with my eyes closed and just rest. It makes a huge difference in getting through my day!
Feel free to email me anytime you feel overwhelmed!
Take care,
Cathie
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Welcome Cathy,
How about we'll be your support group! You might get differing views on this forum (already have, though all with good intentions), but you seem to have a pretty good handle on the situation. Trust your own judgment and continue to do your due diligence. W&W is often a perfectly viable course of action for an AN in the 1.1 cm range. See what your next MRI shows and decide then if any further action is needed.
In the meantime, take good care of yourself! A healthy lifestyle goes a long way in dealing with our unique situation. Get plenty of rest, eat a healthy diet, exercise regularly, etc. If you haven't been doing some or all of those things previously, then start now! Keep a positive attitude and don't let this little "bump" in the road keep you from living and enjoying life!
Wishing you all the best!
Petrone
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Welcome ! So sorry you have to join our ranks. I stalked this site for months before I joined. I would become very overwhelmed after reading what everyone had been through. I was frustrated also, because everyone has such a different experience, it would be wonderful if there was one way to go with the same outcomes for everyone, but it just isn't that way. It's tough to be going through this and it helps being able to see what others with the same diagnosis have been through. Take care and welcome !
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Cathy--I'm a few days late replying but welcome to the "club." I had AN surgery last December, lost my right-side hearing (what was left of it) in the process, and the surgeons were not able to get much of the tumor because of the angle of approach and the position of the facial nerve. Since then, I have been debating whether to watch and wait before another surgery or to do another surgery and get it over with (given my age, it's highly likely I'll have to do something at some point). Anyway, just wanted to say that it's completely understandable that you are fatigued by constantly thinking about the tumor--I am as well, which is an important factor for me as I decide whether I can continue to watch and wait. Best of luck to you, whatever decisions you make.
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Thank you SO much, everyone who replied. I have been terribly remiss in answering only because I am so overwhelmed that every time I try, I have to go lay down instead!
Derek, I want to know how did a "self reduction" of your tumor. Meditation? Affirmation? It just happened naturally whether you thought about it or not?
Arizonajack and Derek, I THINK my hearing hasn't gotten to be a lot less in the past year, and Derek, I so much hope you are right when you say you have discussed this with an AN expert and an un-growing tumor does not eat away at the hearing nerve.
But does it eat away at the Facial nerve if it's not growing?
My constant quandary:
If the tumor is NOT growing, will the hearing nerve continue to be damaged?
If the tumor is NOT growing, then is the facial nerve at risk to be damaged?
If the tumor is NOT growing, will the balance nerve still be at risk?
If the tumor is NOT growing, WHY would someone choose to radiate it with GK or CK?
Is Cyber Knife safer or better than Gama Knife?
I feel physically terrible all the time. Tinnitus, yes... blocked full feeling in my ear, yes... but it is the fatigue that feels paralyzing. I sleep 12 hours and can only stay up a few hours after that! TesaxSprinter, thanks for affirming that this is a part of the AN package.
If I the tumor is NOT growing, and I choose GK or CK, is there anyone who can attest to actually feeling better after the radiation?
If you get GK or CK and the tumor swells, won't that deteriorate the hearing and facial nerve because the tumor gets BIGGER?
I know everyone here has asked these same questions. I wonder if there is an answer that all docs agree with... so far, none of the docs I talk to have the same answers.
Mickey, I am encouraged to hear that you are feeling better now than when you were first diagnosed. That sounds hopeful.
How did you do it? Supplements? Meditation?
Cathie, your story gives me a clue as to the fatigue. You had GK not long ago, only in Sept. Are you feeling even better now?
Petrone, you and I are in agreement on the healthy lifestyle. I am vigilant with diet and exercise. I have been a professional dancer all my life, and still (try to) get to ballet and dance classes, still work out everyday and teach dance. I think this is why my balance is still okay.
But my face and my eye.... I keep thinking I feel something tighten or twitch....makes me NUTS. And scared.
Well, I have my 6 month MRI today. So I will have some decisions to make next week. Thank you all so much for being there.
Cathy
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Hi Cathy...
Unfortunately I have no magical panacea as to exactly how my AN has gradually self-reduced from 2.5cm when initially diagnosed aged 58 years in 2002 (when I was advised to have 'early' surgery) to the present 1.3cm as I approach my 70th birthday. But upon diagnosis I did a tremendous amount of thorough research into all of the available treatment options (microsurgery / stereotactic radiosurgery / conservative management) and thereafter made a well informed personal decision that subject to regular MRI scans; no escalation of symptoms and acting upon the advice and guidance of a consultant in whom I had complete trust, I would opt for conservative management (watch & wait) for as long as I could safely do so. My main reasons influencing that decision were that of all the available treatment options, conservative management had the least risk of morbidity /side-effects and these should not be underestimated. Also, advances in treatment are constantly being updated and refined with corresponding reduction in the associated well documented risks associated with invasive treatment be it microsurgery or radiosurgery if I were ever to require such treatment.
This decision together with a rigid overhaul of my general lifestyle including a healthy diet and regular exercise combined with a very positive mental attitude that I was going to be the one in control of the AN and not IT controlling me has stood me in great stead over the ensuing 12 years with the added bonus that I am in far better general health than I was pre diagnosis!
Be assured Cathy that I have it on the good authority of a very well known stateside consultant that a benign acoustic neuroma, particularly one which does not show any evidence of enlarging, does NOT 'eat away' at the acoustic nerve nor any other nerve. If it remains static and there is no escalation of symptoms then it is best left in peace. My maxim has always been that if it behaves itself it can stay. :)
Also remember that whatever treatment option is decided upon whether it be invasive or conservative, a regular MRI scan will always be required for the rest of our lives to ensure that there is no enlargement or re-growth of the tumour so in effect even if an invasive treatment option is selected 'watch and wait' will still be applicable. I appreciate that there are only a few of us on this Forum who are in 'long-term' watch and wait mode but I do believe that this is because far too many of those who are newly diagnosed unnecessarily opt for early invasive treatment.
Also Cathy, the occasional eye 'twitching' etc is often attributable to mental stress and fatigue of which your AN could be a major contributor but this should subside in time.
Best of luck with your MRI scan today and we look forward to some good news from you.
Regards
Derek
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Derek, thank you so much for your reply. I'm so grateful for any positive tid bit. The one thing I envy you is that you found someone that you trust. You mentioned that in both of your posts. I have yet to come upon that.....
My MRI revealed the tumor from 1.1 cm X .5 in May, increased to 1.3. cm X .7, which the report says "appears to be stable to possibly slightly increased". This is what makes me crazy and also nervous about the report, isn't a .2 mm increase in each direction an INCREASE ??? Why would the report say "stable to possibly increased"?
Limbo and confusion. I would think .2 cm in 6 months would be something significant.
I do wonder about symptoms. Has anyone experienced what seems to be fluid and swelling (and almost a bruised feeling) under the eye and above the cheekbone? At first I thought I must have just punched myself in the face in my sleep.... but have woken a few times to this swelling and am beginning to wonder......
I see than many have had GK or CK with smaller tumors than mine. I would so like to stay in the "watch and wait" brigade, though.
I sincerely appreciate any and all insights.
Cathy
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Hi again Cathy...
Do not be over anxious at this early stage re the results of your recent MRI scan and rush perhaps unnecessarily into invasive treatment. The perceived increase in the size of the tumour over your previous scan is within the accepted 2mm tolerance which allows for any discrepancies associated with the MRI scanning procedure whereby factors akin to the complex equipment, positioning within the scanner and radiographer interpretation of the images all have a bearing. That is probably the very reason why with relevance to your scan result, the report indicates 'appears to be stable to possibly slightly increased' Your next scheduled MRI scan may well indicate stability or even a 2mm reduction!
I am not medically qualified Cathy but I am doubtful that the symptoms you describe relevant to the area of your eye and cheekbone are related to your AN. Best get your GP check that out to put your mind at rest.
It is crucial that you do find a consultant in whom you have complete trust particularly so when opting for the conservative management ('watch & wait') treatment mode whereby the correct advice and guidance is a vital aspect. It would be preferable to select a consultant who has an element of impartiality who specialises in both microsurgery and stereotactic radiosurgery and who also has a good record of monitoring those patients considered ideal candidates for conservative management.
Hang on in there Cathy!
Derek
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Hello Cathy,
Yes I am feeling quiet well overall, but it is far to soon to say it relates to the Gamma I had in September. Gamma Knife is not a quick fix procedure. I would say the biggest benefit since having the Gamma treatment for me is the relief I feel in having made a treatment choice and having the treatment now behind me. The stress leading up to making my decision was endless and I am so glad it's now behind me and I'm moving forward in my recovery process. I still struggle with fatigue, balance and some eye issues, but it's nothing I cannot manage on a daily basis. I have learned to pace mayself and not overdo things which is a huge lesson to learn.
I agree 100% with Derek that you must find a specialist who you trust and are comfortable with. I met with several neurosurgeons and an otolaryngologist prior to making my choice. The neurosurgeon I chose to remain with was skilled in both surgery and Gamma Knife, and he was excellent in helping me determine which treatment to choose and when. I wasn't going to rush into anything unless absolutely necessary, but watching my AN grow from 1.8cm to 2.4cm within one year was enough for me to realize W+W was not an option.
Continue with your research, watch your symptoms carefully, and keep getting regular MRI's. You will eventually reach a point where you will know what to do and when.
Take care,
Cathie.
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Cathie and Derek,
Thank you so much for responding.
Derek, you are right... I have been scouring the forum all day and thinking I should hurry up and do something like GK or CK.... I didn't know there was a 2mm tolerance. I thought the doctor doing the report was just being vague or evasive....or I couldn't even imagine what! Now it make sense, thank you!
I know you are right Cathie and Derek, it is crucial to find a consultant in whom I have complete trust. After traveling coast to coast ( L.A., Chicago, Fort Wayne, New York) I still haven't found that person.
I think it's because of the lack of continuity in what they say and or recommend. Cathie I think you are right; I must find someone who does both surgery and GK, so there isn't a bias.
Is it my imagination or is it intentional that people here on the forum don't "name drop" the docs and consultants in whom they find this kind of trust? I do see some encouraging posts about Dr. Chang from Stanford and Dr. Lundsford from Pittsburg.
Has anyone been to the Ear Institute of Chicago? Or to Mayo Clinic? I am checking them out next.
I went to the ANA Symposium in L.A. last August. I talked to a few doctors there and made follow up appointments for consultation. I find that there are very many opinions!
And sometimes overwhelming information. I think I am like a med school student in med school.... you know the type, they get every symptom they study. :) So thank you for helping me keep a lid on it. Cathie, you hit the nail on the head. The stress leading up to a decision is endless.
My deepest thanks for your replies. I feel quite isolated, and you are like a lifeboat !
Cathy
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I have no wish to be confrontational with fellow contributors to this forum but I have been sceptical of the often stated claim on this forum that an untreated AN will cause the tumour to 'eat away' at the acoustic nerve and result in inevitable hearing loss.
In furtherance I have discussed this claim with a renowned AN consultant who assures me that an untreated AN does NOT continue to 'eat away at the acoustic nerve' and that any degree of hearing loss on the affected side is solely attributable to the increase in the size of the tumour.
I am concerned that such an unfounded statement may cause those newly diagnosed with an acoustic neuroma to be apprehensive about considering 'watch & wait' as a viable and safe treatment option with the added caveat (as always!) that such a decision is always made acting upon the advice and guidance of a consultant in whom you have complete trust and that regular MRI scans are undertaken. Any escalation in symptoms and any increase in tumour size over 2mm should be the prime indicator that it is time to consider other invasive treatment options. Until then 'wait & watch' (in my considered opinion based upon nearly 12 years in 'wait & watch') remains the safest option with lesser risks of morbidity and be aware also that neither of the invasive treatment options carries any guarantees that hearing loss will not develop post treatment.
Regards
Derek
Likewise I have no wish to be confrontational, and agree with Derek that Watch and Wait is a very viable option.
Hearing loss in Watch and Wait however is a risk, but so does getting treatment.
Many people will lose their hearing in Watch and Wait without the tumour growing.
http://www.ncbi.nlm.nih.gov/pubmed/19730147
I have found an interesting research paper indicating that the tumour produces Cytokines which are toxic to the cochlear. These cytokines build up in the lymph of the inner ear and are suspected to cause damage to the hair cells of the cochlear causing hearing loss. This may be part of the reason hearing often declines while in Watch and Wait even without the tumour growing.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3302957/
Another interesting thing from this paper
http://www.ncbi.nlm.nih.gov/pubmed/21150682
"Sequential MRI cannot be substituted by audiologic examinations solely because increase in VS volume does not correlate with audiologic deterioration significantly."
Anyway very interesting reading....
I especially like the paper on proteins (Cytokines) stuffing up your cochlear!
This seems to go some way to explain why hearing does decline over time even without tumour growth.
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Many thanks for your research and inputs Paul. However it is a significant fact that invasive treatment whether it be microsurgery or stereotactic radiosurgery offers no guarantee that hearing ability on the affected side will not deteriorate or be entirely lost post treatment. One has also to consider the many other aspects of permanent morbidity / side-effects that can arise post the invasive treatment options and which can be seriously debilitating.
All treatment options have elements of risk attached and from a personal perspective I have absolutely no problem with single-sided hearing loss which I have had for almost 12 years since diagnosis. Just as with the initial balance problems at diagnosis the brain learns to adapt and compensate for such hearing loss and if that is to be my only sacrifice then it is one which I have readily accepted. It is of course entirely feasible that a person choosing conservative management of their AN may never experience any such hearing loss but nonetheless I have absolutely no regrets that I opted for conservative management.
Ultimately the choice is a personal one and the person making it must be fully aware of all the consequences applicable to each treatment option. That is why it is essential that you have complete trust in the selected consultant's advice and guidance prior to the making of such a crucial decision.
Regards
Derek
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Hi Cathy - let me jump into this and tell you that although I do not have an AN on the 8th cranial nerve, I have been on W&W for another benign tumor on my brainstem at the 9th cranial nerve. I have been told that everything in that area is so close together that some of the "schwannoma" may be classified as acoustic. Anyway, I am still ahead of Derek, having watched mine for just over 12 years with very little growth. Yes, there are days when I do not think about it and there are days when under stress and being tired bring out all kinds of symptoms. I still have yearly MRI's and have been told that 1 - 2 mm can be a technical difference. As explained to me - just picture your head in the machine and how easy it would be to be that amount off - check out a ruler and see how small 1 - 2 mm is. A neuroradiologist said that can happen even in the same machine, at the same facility, with the same technician!! As to the wording of radiology reports, they are famous for being "iffy" - you will usually see the words, "probably", "could be", "possibly". This is a cover your a-- maneuver.
Good luck - try to take deep breaths, and keep us posted,
Sheryl
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Thank you Sheryl, I am happy to hear from you.
I actually got the discs, put them in my computer and have been looking and measuring myself! Not that I know what I'm doing....
Yes, you hit the nail on the head, that the "iffy" factor seems suspiciously like a cover your a_ _ maneuver, and I think that is what makes this particularly scary. If you think about it, 2mm in 6 months would seem to mean that one should start to seek treatment for a growing tumor. But the "could just be the technical variance" would have one sit there and think maybe just wait a while longer because maybe it's NOT growing?
With me it is the same machine, the same facility, the same technician. So it's interesting that you mentioned that.
This is a whole new weird and whacky journey, that's for sure.
Thanks for being there.
Cathy
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I have no wish to be confrontational with fellow contributors to this forum but I have been sceptical of the often stated claim on this forum that an untreated AN will cause the tumour to 'eat away' at the acoustic nerve and result in inevitable hearing loss.
In furtherance I have discussed this claim with a renowned AN consultant who assures me that an untreated AN does NOT continue to 'eat away at the acoustic nerve' and that any degree of hearing loss on the affected side is solely attributable to the increase in the size of the tumour.
I am concerned that such an unfounded statement may cause those newly diagnosed with an acoustic neuroma to be apprehensive about considering 'watch & wait' as a viable and safe treatment option with the added caveat (as always!) that such a decision is always made acting upon the advice and guidance of a consultant in whom you have complete trust and that regular MRI scans are undertaken. Any escalation in symptoms and any increase in tumour size over 2mm should be the prime indicator that it is time to consider other invasive treatment options. Until then 'wait & watch' (in my considered opinion based upon nearly 12 years in 'wait & watch') remains the safest option with lesser risks of morbidity and be aware also that neither of the invasive treatment options carries any guarantees that hearing loss will not develop post treatment.
Regards
Derek
Likewise I have no wish to be confrontational, and agree with Derek that Watch and Wait is a very viable option.
Hearing loss in Watch and Wait however is a risk, but so does getting treatment.
Many people will lose their hearing in Watch and Wait without the tumour growing.
http://www.ncbi.nlm.nih.gov/pubmed/19730147
I have found an interesting research paper indicating that the tumour produces Cytokines which are toxic to the cochlear. These cytokines build up in the lymph of the inner ear and are suspected to cause damage to the hair cells of the cochlear causing hearing loss. This may be part of the reason hearing often declines while in Watch and Wait even without the tumour growing.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3302957/
Another interesting thing from this paper
http://www.ncbi.nlm.nih.gov/pubmed/21150682
"Sequential MRI cannot be substituted by audiologic examinations solely because increase in VS volume does not correlate with audiologic deterioration significantly."
Anyway very interesting reading....
I especially like the paper on proteins (Cytokines) stuffing up your cochlear!
This seems to go some way to explain why hearing does decline over time even without tumour growth.
PaulW...
Again with the applied caveat of non-confrontation, I thought it prudent in furtherance of completeness and in the interests of us long-term in the 'watch & wait' mode and those contemplating that option, that expert opinion and clarification be sought with relevance to the three areas of research that you kindly posted. I referred these to the same consultant who had previously advised that only enlargement of a tumour can result in hearing loss and that a stable tumour does not 'eat away' at the nerves. His responses are as follows (quote):-
http://www.ncbi.nlm.nih.gov/pubmed/19730147
This study abstract does not delineate which patients did not have tumour regrowth. In fact the way it is worded is ambiguous as to whether the patients who lost hearing were in the conservatively treated group, although I think that is what they meant. What it does show ( in such a very small study group of patients) is that hearing loss is about as frequent with no treatment as with treatment.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3302957/
This does not answer the question of casuality i.e. are the cochlear changes due to the tumour or are they both due to some underlying problem such as the chemical that causes both hyperthyroidism and thyroid opthalmopathy. Nor does it answer the question as to whether treatment of the tumour would have made a difference.
http://www.ncbi.nlm.nih.gov/pubmed/21150682
This paper simply says that tumour growth and hearing loss are not necessarily related. It does not offer any evidence that the tumour 'eats away' at the nerve.
Therefore having due regard to these expert opinions, I am more than satisfied that there is insufficient evidence to indicate that a stable and untreated acoustic neuroma WILL eventually result in hearing loss. Just wanted to clarify the situation.
Regards
Derek
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Derek, after wading through that last post with all of my brain cells scrambling to keep up, I am going to go with your last statement
and in a nutshell your conclusion:
I am more than satisfied that there is insufficient evidence to indicate that a stable and untreated acoustic neuroma WILL eventually result in hearing loss.
So the ever illusive "bottom line" is, a stable and untreated AN just MIGHT result in further hearing loss, but then again, there is a chance that it may not."
Just like my MRI..... there is a chance that the tumor MIGHT have grown 2mm, but then again, it could be variance in the machine, technician, etc.
This journey is like getting a masters degree in the art of deep breath taking.
Thank you my new friends, for your support and presence and willingness to share what you know. I say a little prayer for all of you and all of us everyday.
Cathy
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Hi Cathy,
My real name is Cathy too but I go by MG , here on the forum. There seems to be a lot of Cathy's! I am new here on the forum and I am on W&W. Before I joined I read many of the stories from all these brave people. My heart goes out to them. They seem so strong to me and I wish I could be too. I worry about every little twitch I feel on my left side of my face. Is it growing,I ask myself every day. ::) Now, I have earaches during the night and have to get up to take a pain pill. Luckily, it goes away quickly. All the questions you asked are the same ones I am wondering about. So we are in this altogether and I am so glad that I am not alone! :)
I hope your Mri is a good one Cathy. Take good care.
MG
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Hi Cathy, Paul and everyone. Paul has provided lots of useful info and links over time and I'm most grateful.
I've just seen this post and thought I'd add my experience. I'm in the UK. I was diagnosed Aug 12, and had SRS linac Dec12. I was told it hadn't grown inbetween but at 15mm x 10mm I wanted it treated before it had the chance. Was I right, who knows? I was and am terrified of surgery, for various reasons, and therefore opted for SRS.
My pre SRS symptoms were imbalance, dizziness, shooting pains, full ear and head like cotton wool, slight tinnitus and no noticeable hearing loss. My post SRS symptoms escalated at 3 months, then again around 6 months, worse again 8 months and even worse now, at almost 12 mths.
The worsening imbalance and tinnitus and full ear feeling are the most life affecting, regarding daily activities and lack of sleep. But regarding hearing, this has been a slow deterioration and I think the tinnitus adds to the difficulty in picking up sound in the AN ear. It seems to vary depending on what TV programme I watch, which is the way I measure hearing, with the good ear plugged.
I had an MRI at 4 months as my GP was concerned and although I asked to know the measurement I was only told "slight enlargement". Well that could mean anything. I got a CD of the MRI but could not find an image that was measurable or comparable to the pre SRS one.
I'm due my one year post SRS MRI in jan 14, so I just have to wait for the outcome. I'm obviously concerned worse symptoms may mean swelling or growth, but am aware from info on this site but its the 2 year scan that is more telling. I'm disappointed to have had no improvement at a year post SRS. If I'd waited would I have seen no growth, who knows. Its a tough decision for you to make Cathy, I know.
all the best Alison x