new to the AN club

[cathyroe]

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

[Derek]

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
 

[Echo]

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.

[cathyroe]

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

[PaulW]

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.

[Derek]

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

[Sheryl]

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

[cathyroe]

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

[Derek]

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

[cathyroe]

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

[MG]

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   

[Alison]

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