Watching and waiting 2.5cm

[Guitarmn50]

This is approximately my fifth year of watching and waiting. The growth of the AN has now reached 2.5 cm. my recent MRI has indicated that it is now pressing on the brain. My latest Audigram has indicated that my left ear has lost approximately 40% of what was recorded just two ears ago for the last Audiogram.  I think that I am now starting to have some headache and neck problems associated with the AN; however, it could also be related to my job as a transit bus driver.  I frequently drive extended hours, and the drivers seat is not always the greatest...if you know what I mean!

Personal question here: I am age 53 currently, and cannot get my pension in any way (I've checked) until age 56.  I am also a caretaker for my mother who has dementia, and that's a fulltime job in itself! I realize no one has a crystal ball here, but is it I feasible to watch and wait until age 56?  At the rate of yearly growth, the AN would be approximately 2.8 cm or slightly greater by then.  I am strongly thinking of CK, though getting CK now could quite possibly end my commercial driving career and possibly become an equally debilitating detriment if I'm incompacitated and not able to function as a caretaker for my mom. 

I do realize that I could be in an even worse position in 3 years or earlier!  Then again, perhaps not! 

This is basically my situation.   Comments are welcome.

[Jim Scott]

Guitarmn ~

As you know, we're not medical professionals and cannot offer medical advice.  However, AN patient-to-AN patient, at this point, with the tumor showing real growth, I would start to seriously consider addressing your AN sooner rather than later.  Frankly, if the growth continues, it will likely impact your hearing ability and facial nerve response.  As you know, radiation is generally limited to tumors under 3 cm - and yours is getting close to that point.  Of course, a physician would have to determine whether radiation is feasible in your case but the window for it to even be possible is shrinking. 

Your caretaker role and inability to claim your pension before 2016 is definitely problematic.  Have you looked into whether you can claim long-term disability if radiation (or surgery, if it comes to that) negatively impacts your ability to drive the bus?  To be honest, should possible post-radiation issues incapacitate you for long and no other relatives can or will step up, you may be forced by circumstances to place your mother in a long-term care facility.  Not what you want, I'm sure, but you have to be realistic.  In any case, these are all worst-case scenarios that you will have to consider.  That aside, procrastinating treatment for another 3 years seems to be risky.  If you do chose to keep watching and waiting, try to get semi-annual MRI scans so that you'll know that much sooner if the AN is continuing to grow and, if so, act accordingly.  I wish you the best as you grapple with these vexing issues. 

Jim

[Guitarmn50]

Thank you Mr. Scott for your thoughtful insight into this matter of mine.  It is a vexing issue to be sure, and I do understand fully that I'm on a slippery slope here to be sure!  There are serious… possibly even grave risks associated with hesitation...which I do realize.  I hate to sound foolhardy here, but if I were to procrastinate on this for the duration of approximately three years is it not relatively feasible that an AN with a radius of 2.8 or 2.9cm not be of such deleterious proportions that would be "Life threatening"? Of course, that's a highly speculative question but considering my situation I do have to consider it. 

I won't say I've made up my mind on all of this… I still have to speak with the surgeon which will be on the 31st of January. I plan on taking the information that I've gleaned over time with me, and hopefully make a balanced decision.

Regarding my mother, yes I will be realistic about this. I can see that it could eventually turn into a worse-case scenario.  Regarding long-term disability: "Yes", I would qualify for long-term disability. LTD is not bad, but it's not sustainable for a "retirement"...though, a modest pension could be available for me next year with LTD which would be feasible. However, a full pension is what I am really looking at...after 22 years of a career of driving a bus and being this close...

Thanks Jim for the help...

Walter

[PaulW]

Making a decision about how to manage an AN is difficult enough without adding additional considerations.
As Jim said we are not doctors, but maybe this might help with your treatment decision.

Some people report minimal side effects from GK or CK. Others get more side effects.

I drove straight after CK. I felt confident about driving myself, in a car, but driving a bus is a lot more demanding.

I have driven 30 seater buses and I would have to say I would not have been confident of driving a vehicle that size for about 6 months post CK. Turning the head, looking at mirrors, looking at your speed, knowing where you are on the road, all became more challenging. Driving on unlit roads at night was also challenging. Wandering 12" this way or that in a car is fine, but not in a bus in crowded city streets.

The problems that I had all seemed to be related to my balance nerve and its lack of function post CK.

So my Question.
Is it worth getting your balance evaluated?
If your balance nerve is already 100% dead you may have already compensated for your loss and side effects from CK maybe minimal.
If your balance nerve is still functioning it may predict a longer recovery..

Just a thought..



 

[Guitarmn50]

Paul, that is an interesting possibility... I don't know!  My hearing has dwindled to approximately 10%. I can know longer extrapolate telephone conversations with my left ear.  I do know from the onset of this: It was a gradual loss of hearing just like most people who have AN.  I do remember a bit of unsteadiness on my feet from the beginning. It never did affect my driving the bus-not in any way--even to this day.   You could be quite right about this, Paul: My balance nerve might in effect, be dead! How would I go about finding out if this is no longer 100% functional? BTW For those who are unaware the California DMV knows fully about AN: The DMV considers it something akin to "high blood pressure".  I merely come in yearly for my DMV physical as opposed to the "standard" two year cycle.

Thank you Paul you may have just given me another chance in all of this… 

Walter

[mk]

Your situation reminds me in many ways of mine, although under different circumstances. When I was diagnosed, with an AN that my initial report said was 2.4 cm (which afterwards I realized was underestimated), I was 37, I had a 4 year old and a 1 year old. Just back from maternity leave to a very demanding job, no help from extended family, husband very busy at work too. Living in a medium-size town, which does have a hospital, but no surgeon specializing  in ANs (which is of course important) meant that I would have to travel out of town, at least 3 hours for the closest centre for consultations and for surgery. I must also say that I was asymptomatic (my AN was found because of mild facial numbness). At that point in time I thought that it was impossible to have surgery, so I decided to have GK.
I did have GK about 6 months afterwards (by that time the MRI showed that the AN was about 2.8-2.9 cm). The treatment was uneventful, I had basically no side effects, took a week off work (could have taken less). As you will see in my signature the treatment eventually failed, and I did need surgery after 3 years. But it did slow down the growth, and bought me time. After 3 years I was in a better position at work, my mother in law had retired and was able to stay with us to help etc.

I probably took a risky decision to have GK for an AN of this size, and I should have done it earlier, when the AN was a bit smaller. Looking back though, I still think that although it was not the best option for my AN, it was the only thing that I could do back then, due to my personal circumstances, and certainly better than no treatment at all. If you are considering radiation, I would suggest you consult a good specialist sooner rather than later and get their opinion about the feasibility of radiation in your specific case,  risks to the brain stem etc - every AN is different depending on the location etc. As you probably already know most centres will refuse to treat an AN with radiation when it reaches the 3 cm limit, so may loose this option if you wait too long.

I don't think that having CK or GK will necessarily end your driving carrier, of course everybody responds differently, but most people do quite well and can go back to their jobs after a while. Perhaps taking some sick leave from work for a couple of weeks would be feasible.

A last point is that above else, your health comes first. If the AN grows too much, it may cause all sorts of problems, risk of hydrocephalus etc. Before I eventually had surgery I was told that I was close to developing hydrocephalus and should do something urgently - reaching this sense of urgency is no fun at all.

Anyway, some food for thought, I would be happy to give you more information if you would like to PM me.

Marianna

[Guitarmn50]

Hi Marianna, Yours was, indeed, quite a similar situation to mine. Your story and Paul's have given me quite a bit of insight into how I should proceed to the next stage of all of this.  Many thanks Marianna...I will PM you for any additional info...

Walter

[leapyrtwins]

My two cents - and like Jim, I'm not a doctor either.

2.5 cms isn't small and if you wait any longer and your AN grows faster than you anticipate (it can happen; happened to me) you may no longer be a candidate for radiation.  Most docs won't radiate an AN once it gets to 3 cms.

The side-effects of radiation usually aren't as debilitating as those of surgery. 

Also losing 40% of your hearing isn't insignificant; take it from someone who is SSD.  You are risking losing more hearing by waiting for treatment.  Are you sure it's worth it?

Jan

[Guitarmn50]

Thanks Jan,  I'm beginning to have second thoughts after reading Paul and Marianna's account, though, as I mentioned to Jim, my situation is complex.  If I could have this Cyberknife procedure, and be up and about after treatment...and ultimately be in reasonably good condition to drive a commercial vehicle in around 8 months maximum...I will go ahead and follow through. If not, I would have no alternative...I would have to wait three years. 

Regarding SSD from what I've read here on this board am I correct in assuming that my remaining hearing will basically be completely cut-out after radiation? It is basically gone now...I imagine that I won't miss it at this stage. All I can hear is the Tinnitus hiss anyway.

Walter

[mk]

Walter,

I have responded to your PM. What I wanted to add here is that unfortunately there is no crystal ball and there is no way for anyone (including the most experienced doctors) to tell (or guarantee) what the outcome will be following treatment. Also, as Jan pointed out, there is no guarantee that the rate of growth will remain the same, and that there is not going to be some sort of growth spurt.

Generally, one thing that I have observed statistically on the forum (and I am not a doctor, nor will I say that this is scientifically proven), is that the less symptoms you have going into treatment, the less you have going out. This is also true for hearing - generally people who had good hearing when treated with radiation had better outcome. You said that your hearing is mostly gone, so most likely you are already adjusting to SSD. It is more of a shock when people with full hearing lose it suddenly after surgery.

As I mentioned in my PM, I think that it would be a good idea to contact a couple of reputable centres (Stanford and UPMC come to mind), to consult with them about the feasibility of radiation in your case. You don't need to go there in person, they will consult with you remotely once you send them your scans.

Marianna

[Chances3]

Hi Walter,

First let me say - God Bless you for being a caregiver.  My mother suffered a stroke many years ago, she has dementia and my brother has lived with her and cared for he.  It takes a special person to do this.

You have a potential health decision that has implications on your finances, which puts you in a spot to make health and financial decisions.  As for mom, please check what programs are available in your state through medicaid.  Once we exhausted my mom's money, we became eligible for a state program where they send us some money to hire aids for her.  Crazy as it is, it is cheaper for states to keep the elderly in their homes than it is to have them in a nursing home and just just accept their social security as payments.

As for your own medical situation, I would seek out financial advice so that you can get all your financial options on the table, hopefully it might make your health decisions easier to decide.  For example, talk to your HR department at work, contact your local Social Security office etc.  I know your financial objective is to get that pension, so see how that is feasible.

You have some difficult choices to make, I hope it all turns out good for you.

God bless you !

[Guitarmn50]

Thank you again Marianna, all your points are well taken, and I am now feeling a bit more...let me just say rational in my decision of going through with CK. Of course, I have to talk to the doctor, and get the full input from him, but the essential gist that I see that you've pointed out, and others, is that I will most likely fair through this thing okay. Of course, there is a risk.  The next step would be to talk to the surgeon Dr. Tse At Redwood City.

[Guitarmn50]

Thank you Chances3 I really appreciate your input on this. Yes, I haven't yet explored much of the aspects of bringing in Medicaid for my mother.  I'm not sure that she would qualify right now: I don't think we're at a level of income which would warrant them contributing to her home care. I'm pretty well fluent on how to get through this with work. My utmost concern is being disabled for a length greater than nine months; for which, I would loose my healthcare and go on COBRA. From what I've gathered here, is that it would be nowhere near that length of incapacitation, anyway.   

Of course I'll know more once I talked to Dr. Tse at the Redwood City Facility.    Thank you kindly 

[PaulW]

There are a number of tests that they can do to evaluate the condition of your balance nerve.
There is the infamous caloric test where the syringe warm and then cold water into your ear and see how dizzy you get.
There are other tests too... cant remember what they are. But you will have probes stuck on you.
The fact that your hearing is mostly gone may also indicate your balance nerve is mostly gone or gone already too.
Your ENT should be able to order them.

If your balance nerve is already gone, you have probably compensated already.

If you do decide to get treatment, I think it will be very important to do vestibular exercises, and to challenge your balance system everyday.

I found walking to be very helpful. If you want to get back to driving ASAP I think you will need to take your recovery seriously. While sitting around resting seems to be what you feel like doing when you have a wonky head, getting up getting moving and getting your head wonkier is what will get you back on track faster. You may want to consider having some sort of mentor to ensure you do everything you can everyday to get that vestibular system compensated as soon as possible.

Will you by able to rock up for work in 8 months and drive a bus, I am sure you will be able to.
The real question will be, will you feel safe driving a bus?

You may also find that you can drive a bus safely for a few hours, but after that fatigue may set in. So driving maybe OK for 4 hours but not for any longer.

As for your remaining hearing, radiation may save it.
I believe Stanfords 5 year hearing preservation rate is 76% at 5 years.
Although larger tumours this preservation rate is lower.

[Guitarmn50]

I can't tell you enough how reassured I feel now after reading those key bits of information here, Paul.

I think I might be able to handle that... Especially getting myself motivated and walking around.  Love to walk so that shouldn't be much of a problem!

I won't be able to stipulate four hours of driving only with the company, though. With them, It's either drive the route...the run or don't work. Basically there's no desk job, so I'll have to deal with the endurance factor at that time.  If I can shake any after effects of all of this within the eight-month time frame that should be okay.

As long as I'm not dizzy, I can do it.

Thanks Paul

Walter