Another MRI yesterday

[CMC]

6 years watch and wait has been very stressful. Why? Because it is so difficult to tell the difference between anxiety symptoms and tumor symptoms. Anxiety and depression very much mimic tumor symptoms so it's hard to trust my own judgement. Headaches. Neck pain. Brain fog. Memory loss. Various nerve pain and numbness in my face and jaw. Joint pain. Arm and leg movement weird at times, weak. Fatigue. Tinnitus is at times disabling! Everyday life is overall harder. I can't remember what normal feels like anymore. Every other test has come back negative. Therefore, I decided to have another MRI.

You see my tumor size hasn't changed size in 6 yrs. My hearing is pretty good and up until the last 6 months I have been able to handle the daily symptoms. I was put on 2 yr MRI plan. Because I have been having progressing problems decided not to wait. What is stupid is that I want justification for my symptoms. I would rather have a growing tumor than be called crazy! That is sad right?

What came first, the chicken or the egg? Are tumor symptoms making me anxious and depressed? Or is anxiety and depression making me believe my tumor symptoms are worse? Either way I take antidepressant and anti-anxiety meds to help me cope. Still my body feels less and less able to keep up. At 44 I feel old! It is so weird and so difficult to explain to people who can't possibly understand. I look fine because I am always trying to be fine. I don't ever want to be perceived as a sickly complainer. Ugh but I shouldn't have to try so hard right? So yep that's it...

So next week I will get the report. I am trying really hard to keep myself from popping this CD into my computer. I done enough research that I'm sure I could find the bugger and see if it's bigger. The last picture the doctor showed me is permanently etched in my memory:/

Wish me luck...whatever that means lol......Tina

[rupert]

Tina,  pretty easy for me to say but,  maybe it's time.  Looking at the size of your tumor you have all options.  That's a good thing.  The watch and wait group are a brave sort but,  speaking for myself I couldn't wait to get it treated.  I suffered a lot of those anxiety issues and it just wasn't worth it.  I'm so much better now.  Good luck to you.

[CMC]

Thanks Rupert.  I want to feel better too. My fear is that I won't feel better or even worse after treatment.  I wish  I could fast forward. I'm glad to hear from someone that gives me hope.

[arizonajack]

Hi, Tina.

I've looked over your previous posts and it appears that you have never provided the dimensions of your tumor. Please share.

As for popping the CD into the computer, I do that the minute I get it home. 

[CHD63]

Hi Tina .....

So sorry you are in a stressful watch and wait situation.  I'm with rupert that maybe it is time to seek treatment.

One of the ANA webinar doctors pointed out that an acoustic neuroma may not appear to grow from one MRI to another, but it can be changing the interior make-up or shape, which can cause a change in symptoms.

If you are experiencing an extreme level of stress over this and/or your symptoms are much worse, your quality of life is being affected greatly.

As for being worse post-treatment, the likelihood is rather small if you carefully choose physicians who are very experienced with ANs for treatment.  The goal is to see improvement, of course, but getting worse is not the usual result.

Many thoughts and prayers.

Clarice

[CMC]

ArizonaJack

The last dimensions I was told were 11mm/9mm/8mm. Small compared to others so I can't imagine it growing so big in one year to cause all these problems.  It mushrooms out of the IAC and is right up against my brainstem. I was told it hasn't changed from 5 previous MRI but it does make sense to me that it may be becoming more solid, Clarice. I wanna know if it is big enough to mess with other nerves. Could explain alot. I intend to send my CD out to one of the big guns like House or Keck once I find out the report results. Hopefully I will have results by Tuesday. I will report back.

Thanks for replying. Certainly interested in hearing from others with similar waiting symptoms too. This forum has been a great help keeping my thoughts straight:)

[PaulW]

Having met quite a few AN'ers, and from my own experience of watch and wait. There appears to be quite a bit of anxiety over this little bugger... I have said to many that I don't think doctors take into consideration our psychological needs. I am naturally a pretty upbeat person, however being on watch and wait I could feel that optimism being tarnished.
One of my reasons for choosing treatment early was my mental well being.
Before radiation every symptom that was unusual for the day, was in my mind the tumour growing.
Once radiation was completed, every symptom was a bump in the road towards healing.
Mentally this was very powerful and kept me positive throughout
5 years later and life goes on as it did before...

[arizonajack]

ArizonaJack

The last dimensions I was told were 11mm/9mm/8mm. Small compared to others so I can't imagine it growing so big in one year to cause all these problems.  It mushrooms out of the IAC and is right up against my brainstem.

When mine was first diagnosed with the MRI it was 9mm x 4mm x 3mm and had already rendered my completely deaf in that ear. 6 months later it had grown 20% and I opted to have it zapped.

So, yes, it's possible that it could take a sudden spurt in growth in a year. Even if it didn't grow, ANs are insidious and can do damage even when small.

[Derek]

... Even if it didn't grow, ANs are insidious and can do damage even when small.
[/quote]

The aspect of stable small acoustic neuromas allegedly being 'insidious' and causing 'damage' was discussed on this forum 2 years ago and as previously stated I raised the matter with a respected US based expert in the treatment of ANs who was emphatic that apart from possible resulting hearing impairment, a small untreated stable acoustic neuroma will NOT cause any long term damage.

[ANGuy]

... Even if it didn't grow, ANs are insidious and can do damage even when small.

The aspect of stable small acoustic neuromas allegedly being 'insidious' and causing 'damage' was discussed on this forum 2 years ago and as previously stated I raised the matter with a respected US based expert in the treatment of ANs who was emphatic that apart from possible resulting hearing impairment, a small untreated stable acoustic neuroma will NOT cause any long term damage.
[/quote]

Agreed.  And, cutting them out, or irradiating them, can be insidious and damaging too.

[alabamajane]

Tina,
Sorry your symptoms are so debilitating. I remember after w&w for 3 yrs and being told my 2.7 CM tumor was " not showing growth" for most of that time,,, how absolutely terrible I felt by the time I opted for surgery. Don't let size be your only  determining factor. It is but one variable and not the most important.

You mention that yours has mushroomed out of IAC into the CPA and is up against the brainstem. That in itself says volumes about why your symptoms have worsened and what the tumor is "doing inside". Mine grew just as yours has, although I was told it was " not changing size" ,, and eventually was indenting my brainstem to the point I was unable to function very well most days. I remember feeling much the same way you describe,, VERY fatigued, not able to preform daily tasks as I once did and wondering what was going on. Once it gets to the brainstem and grows ANY to indent it, you have fewer options as w&w is gone and radiation is usually not advised due to swelling associated with it.

I hope you get some results tomorrow but more importantly,, I hope you send your MRI CD out to house and or Keck and get a second or third opinion. I don't know who your present Dr is, but if he is not highly experienced with ANs,, you may not be getting really quality advice as I came to find out I was not for 3 yrs.

Please let us know how you get and what your report says. I was glad once I finally changed Drs that I was able to get MRI results same day as test with new Dr.. That is a big relief.
Best wishes are with you!
Jane

[CMC]

Well I haven't seen the report myself yet but dimensions haven't changed. I do plan to send the cd out to House and Keck FOR SURE.

I also had MRI of my neck and unfortunately I have to go back for another xray for that because they found a spot in my bone marrow....great now what? While I am there I am going to try and get the radiologist to show me what he sees to help she'd some light on this..

Thanks for your support  everyone.     Tina

[mcrue]

As I recall, the entire point behind "Watch & Wait" is to avoid the potential complications from treatment (microsurgery and radiation).  Obviously, if there were no complications from treatment, then almost every doctor would simply say "Oh you have an Acoustic Neuroma, we have surgery for that." Since there are no guarantees with surgery/radiation, this is why most doctors place patients who have small AN's with relatively few symptoms on "Watch & Wait"

Let's not sugarcoat it. It's easy for people to "cheer lead" a particular form of treatment that may have worked well for them in their individual case; however, at the end of the day it's YOU who has to live with the potential consequences. God forbid you get "talked into" having treatment and end up with facial paralysis. Then you might be kicking yourself for the rest of your life saying "I knew I should have continued 'Watch & Wait.'"

Treatment is a very personal decision, and undergoing it may or may not relieve your present symptoms. As mentioned earlier, most doctors, surgeons,  and patients (including myself) have a bias as to what is the "best treatment" based on what they personally practice.

At the end of the day, you're the one who is going to have to make the final decision.

Best wishes.

[CHD63]

As I recall, the entire point behind "Watch & Wait" is to avoid the potential complications from treatment (microsurgery and radiation).  Obviously, if there were no complications from treatment, then almost every doctor would simply say "Oh you have an Acoustic Neuroma, we have surgery for that." Since there are no guarantees with surgery/radiation, this is why most doctors place patients who have small AN's with relatively few symptoms on "Watch & Wait"

A tiny bit of clarification here:  I am rather certain doctors put patients with small ANs on watch and wait because on average, many ANs are very slow growing or indeed, non-growing.  This gives the patient (and treating physician) the chance to observe the growth or non-growth pattern.  This especially true if the AN discovery was an incidental finding and a patient is symptom-free or at least, minimal symptoms.  There are many, many treated patients who never have had complications, other than some hearing loss.

Just want to be sure newly diagnosed patients whose doctors have recommended watch and wait are not thinking "I need to avoid complications" by treating my AN.

Clarice

[mcrue]

A tiny bit of clarification here:  I am rather certain doctors put patients with small ANs on watch and wait because on average, many ANs are very slow growing or indeed, non-growing.  This gives the patient (and treating physician) the chance to observe the growth or non-growth pattern.  This especially true if the AN discovery was an incidental finding and a patient is symptom-free or at least, minimal symptoms.  There are many, many treated patients who never have had complications, other than some hearing loss.

Just want to be sure newly diagnosed patients whose doctors have recommended watch and wait are not thinking "I need to avoid complications" by treating my AN.

Clarice

My understanding is that's exactly what they need to be thinking. Why else would they be on "Watch & Wait?"?

The doctor and patient are "watching and waiting" in hopes that the AN doesn't grow, and they can avoid surgery and it's complications. If there were no complications from treatment then most everyone who be advised to have surgery or radiation. If the AN gets to a point where it does grow, then they have to decide what treatment is best at that time.

There are many treated patients who also have major complications (just look at all the "Post-Treatment" categories on this website!). Treatment is a gamble to be avoided for some patients, especially who's doctors have placed them on "watch & wait" and are fortunate to only have small tumors and mild symptoms.

While I certainly wish everyone the very best of outcomes, I tend to be realistic and shy away from sugar-coating outcomes or having a "polyana" view on everything AN. Even the most experienced surgeons who are routinely mentioned on this website will tell you they have patients who occasional suffer facial paralysis, eye problems, etc. at their hands. Surgery is not absolute, and the reason many doctors place their patients on "Watch & Wait."