Surgery Decision

[Just Wondering]

I had an appointment yesterday with an ENT that was scheduled by my Internist.  I had mentioned that my positional vertigo was still recurring occasionally and asked if the ringing in my right ear might be related.  All of this started about four weeks ago.  The ENT did a positional test, hearing evaluation and the test where cold air is blown in the ear.  After all the tests he came in the room and told me about BPV and said there were exercises for this that his tech would describe.  Then he showed me the results of my hearing test which while in the normal range for both ears did show a 15 decibel hearing loss in the right ear.  He then did what I considered dropping a bombshell.  He wanted me to get an MRI because of the possibility of an acoustic neuroma.  When I stated I was not sure I wanted to pursue that, he stated that he thought I really should schedule the MRI.  I told him that brain surgery was not something I wanted and he said that he did not want to discuss anything until after the MRI.

I went to the imaging center where I am scheduled for April 8 to be sure I knew the location and to double check insurance coverage.  The person at the reception desk told me they had already verified coverage and gave me the information.  They then gave me some paperwork to fill out and bring back for the appointment.  The release form for the Gadolinium enhancement really frightened me; permanent disability and death are possible!  I called the ENT and left a message that I did not want any Gadolinium.

In the late afternoon I received a call from my Internist because the ENT had called his office and mentioned that I seemed upset while at my appointment earlier and had left the message about the Gadolinium.  I have been with my Internist for 15+ years and he knows how anxious I can get about health issues, so he was calling to encourage me to keep the MRI appointment even without the Gadolinium.  I stated that I was not really sure that I wanted to know if I had a neuroma or not.  He restated what he has always told me; he knows me and how I react to health issues and his job is to get me through this journey called life in the best possible way he can.  I am grateful to have him.

After reading posts on this forum about facial paralysis, inability to close eyes, balance problems, headaches, inability to eat properly, fatigue, let alone strokes I am curious to know why people choose to have surgery or radiation.  Right now all I am dealing with is occasional vertigo and tinnitus; I have not really noticed the hearing difference so all of the resultant problems seem very overwhelming and I can’t imagine going through treatment so I can experience all of that.  I certainly give kudos to all of you who speak so positively in the face of what seem to be major problems to me but not to those of you experiencing them.  As you can probably discern by now I am not a very positive person and am somewhat fatalistic.  Most posts here seem to have a spouse, significant other, children or support of some kind.  I live alone and have none of the previous and no close friendships.  I cannot imagine how a 54 year old female living alone would cope.  Therefore I am considering calling Monday to cancel the MRI and consider ignorance to be bliss if and until major symptoms occur.

I have spent all of the time since I got up today online researching this not even getting out of my pajamas or eating.  I am going to shower and put on new pajamas and call it a night since it is now officially tomorrow here in Kansas.  Has anyone else ever been this obsessed?

[leapyrtwins]

Wow, very interesting perspective Just Wondering    May I respectfully say that your attitude quite frankly scares me?  Acoustic neuromas aren't generally life threatening - and neither is gadolinium.  In fact, if you have to have a brain tumor, an AN is the one to have.  99.9% of them are benign.     

Not to be boastful, but not all of us on the forum who have had surgery - or radiation - have "big issues".  My surgery was almost 2 years ago and I don't have facial paralysis, the inability to close my eyes, the inability to eat properly, headaches, etc.  - and I'm not alone.  And those on the forum who do have some issues typically don't live a life any less enjoyable or normal than mine.

If you've ever taken a Rx medication and read about the possible side-effects, you'll realize that lots of things in life can bring on unpleasant things or yes, even kill you.  But everything in life has risks - and death is inevitable at some point in time.  Death from the treatment of an AN is very, very rare - you have a bigger chance of dying from not treating one. 

Yes, the forum has some "frightening stories", but it also has numerous ones that aren't frightening.  And most of the "frightening" ones have silver linings.  It's important to remember that we are all unique and we all have different experiences - in our AN journeys and in our lives outside of our ANs.

It sounds like your internist definitely has your best interests in mind and in my opinion, you should trust him and get the MRI.  The gadolinium would be the best way to detect an AN, but sometimes they are seen without the use of it.

I am single and 47 - I have children, but I take care of them, they don't take care of me.  I was luckly enough to have family members who helped me through the recovery from my surgery.  If I didn't have family members I could have had friends or hired nursing care to help me through post op for the short period of time that I felt I absolutely had to have someone with me - in reality only about 1 or 2 weeks.

At this point in time you seem focused on surgery and how you'd handle it.  Do you realize that ANs are also treated with radiation? and if you have an AN and that's an option for you, it's completely different than surgery.  It might be something you'd be more comfortable with.    But we're both jumping the gun here - you may not even have an AN. 

Most of us (AN or not) are stronger than we think and can get through just about anything we set our minds to - you aren't any different.  Believe you can deal with this and you'll find you can.

Best of luck.  Please go for the MRI.

Jan   

 

[Lilan]

JW: I identify with what you're going through. It's such a shock at first. Here is my advice which of course you can ignore 

1. Gadolinium=It is very unlikely to harm you. Make sure they test your kidneys first (I believe this is routine now, tiny blood test), and drink plenty of water when you get home. That's it!

2. Denial=You're going to have to "man up" (or "woman up" if you prefer) and get over it. Just don't even view that as an option. Save your waffling for the decisions you'll have to make later. Do not endanger your life and health, nor further jeopardize your outcomes, by delaying and denying.

3. After reading posts on this forum about facial paralysis, inability to close eyes, balance problems, headaches, inability to eat properly, fatigue, let alone strokes I am curious to know why people choose to have surgery or radiation.  Right now all I am dealing with is occasional vertigo and tinnitus; I have not really noticed the hearing difference so all of the resultant problems seem very overwhelming and I can’t imagine going through treatment so I can experience all of that.

Now this part is where my sympathy does kick in.    I felt the same way last summer.

It is possible if you have minor symptoms that you WILL be able to avoid or delay treatment. You may be a candidate for much simpler radiation -- but ONLY IF YOU FIND OUT WHILE IT'S SMALL ENOUGH! 

Should your symptoms progress, you don't want to be starting from ground zero at that point -- you want to have had some time to digest all the options and come up with a plan and, most importantly, some emotional acceptance of what's happening.

Personally, I have found that my reason to avoid surgery was that I felt so normal, why would I voluntarily go through all that? Same as you. But now I'm realizing how limited I am by my dizziness and by the overriding stress of having an unaddressed major health concern and I am actually, believe it or not, starting to envy those who have had surgery or at least have it on the calendar! At some point the balance does tip. (Pun definitely not intended.)

Best of luck with your test -- hopefully this will all be a moot point in the end and you won't even have one --but if you do, this is the place to be.



 

[Kaybo]

Very well said, Jan!

Just Wondering~
The 1st thing that jumped out to me was what a wonderful ENT to call your Dr. to let him know that he thought that you were less than comfortable with the outcome of your appointment with him - WOW - you just don't find that very often.  AND even though you have been with your regular Dr. for a long time, KUDOS to him for following up...you just don't find that a lot anymore!  That being said, sounds like these two wonderful and CARING physicians would not have you do something unless they felt that it was TRULY necessary.  Everything has risks - crossing the street can be a potential life-threatening occurance!  In the medical field, they just seem to have more written down about it so that you can sign a release to help free them from later lawsuits IF something strange were to go wrong.  Size & location play a HUGE role in acoustic neuromas (& you might not even have one) - many people DO choose to "watch & wait" but a lot of times the smaller ones can be treated before they grow and cause problems and usually the smaller ones don't cause the side effects - especially if treated with radiation.  However, if allowed to grow, they can cause LOTS of problems and even though they are benign, can eventually lead to death if NEVER treated.  Most of the people here were not "excited" about what "might" happen, but the size of the tumor (or placement) deemed it necessary to go ahead with treatment.  I am one of those people - my tumor was VERY large before it was found and my brain stem was completely displaced to the left side of my head - I was one of those very few who had act right away!  So to me, it is incomprehensible that someone would not act immediately and find out what they are dealing with so that maybe it can be treated when it is smaller and you have more options!

K

[Cheryl R]

Hello.    Finding out about having a AN is a scary time for anyone.     One can think it is the end of the world.       There are some who do end up with some problems which seem  terrible.       Many of us do have a time of having to recover and we go on with life very well.         This is from someone who has had ANs on both sides which is a condition called NF2 and only 5% of ANs end up with.            If you look at my profile I don't look too bad.                 I have had 4 surgeries including 3 with facial paralysis.       I have never headaches or been dizzy.              My first surgery was in 2001 so I do have some long term experience with it all.     yes, for a time past surgery you don't feel real well and can be tired.     You do improve.                      There are many who have posted here for a time and then get better and leave.                       I know many now who have the surgery where I do at Univ of Iowa who has a super neurologist who does ANs on a weekly basis.                Several are on the forum yet.
I have many MRIs and was never given even a permit to sign about the gadolinium.          I only know of one here who said she felt light headed later and wondered  if that was why.                I am now a retired nurse so was around many patients who get the variious kinds of MRIs and never saw a problem.                 There can be some problem in people with kidney disease.      
If you would chose to have surgery in time,make sure you are going to a surgeon who does ANs on regular basis.            Some have long term problems due to a non experienced dr.  Also tumor size and location can play a part in it all.              Radiation is an option also as you have heard.     Many of the post op problems are temporary.          It does sound scary to hear of some who do have a long term issue.                   That is possible with any type of health problem.                  
I would go ahead and do the MRI.      The contrast is needed for the best view of one.      If being in a tube such as one is,then asked for some relaxing medicine before.            I have always done ok with out any.      
    Please keep us informed on how you are doing.       You will be better off checking it all checked out and knowing.    
                                                     Cheryl R

[Tamara]

JW -
  It is important that you follow through with the MRI.  KNOWLEDGE IS POWER.  I chose treatment for my AN (surgery) and had some significant, though not earth-shattering, issues following it.  Still have some minor problems in fact.  Would I do it again?  Absolutely. 
  No matter what treatment you choose, the facts are that your AN (should you have one) will never be smaller, and you will never be younger (and theoretically better able to tolerate treatment). 
  Be proactive here...it's important.

Best wishes,
Tamara

[nteeman]

Just Wondering,

I would recommend that you get the MRI with gadolinium and then you will know one way or the other if you have an AN. That said, you also have to consider that reading the posts here you will read more about the people with issues rather than those without as the nature of this forum is to enable us to support and help each other. Those of us who went through treatment without any major aftereffects do not constantly remind the others of this by posting 'still no problems today' everyday as that would not be helpful or supportive of those who do need our help and support. So coming here and reading posts cold might make it seem like everyone who has been treated has major problems after treatment but this is not so. Many of us have went through surgery and/or radiotherapy with little or no complications. 

First find out if you do have an AN. Then if you do, the size, location, and your age will help you determine what course you need take. Remember that the more information you get will help you chose the right course of action for you.

Neal

[EJTampa]

Just Wondering,
 
Ok, so we have established that you are a worrier .  Some people fret over the "what if's" more than others.  That doesn't make you less of a person, it is just who you are.
 
That said, I think you might be able to see the wisdom in going through with the MRI.  Imagine if you decide to ignore the ENT and don't get the MRI.  Each time you have a bit of pain, perhaps a bit of dizziness, maybe some extra ringing or hearing loss, you'll be wondering if something might be growing up there.  But you won't know.  You will be left wondering, If I do have a tumor growing, how big is it now?  Is it pressing on my brain stem now?  Is my life beginning to be threatened?  You won't know.  You will go through years of wondering and worrying.
 
Now lets look at it if you were to have the MRI with contrast.  Two possibilities, both better than the hypothetical one above.
 
1)  Your ENT calls you in for your appointment.  Good news, there is no sign of a tumor and your symptoms are just the result of your BPV.  You are going to be fine
 
2)  Your ENT calls you in for your appointment.  We found an Acoustic Neuroma measuring x.x by x.x cm, or maybe xx by xx mm.  With the placement and size of your AN, I recommend you...
 
Now the recommendation can be 1) watch and wait,  2)  Surgical removal,  3)  Radiation.  The important thing at this point is that you have a frame of reference.  You would no longer be worrying about what's causing the symptoms, and how close to the point of no return am I?  You would know exactly where you stand.  You can choose watch and wait for as long as you want, regardless of the recommendation you get.  Sure, hearing would eventually diminish as the tumor grows.  Balance would eventually be compromised, and tinnitus can become more of an issue, but you can watch and wait right up until the brain begins to become compromised.  In many people, that never happens.
 
The point I want to get across though, is that it's better to know than to not know.  You will find peace in knowing either way.  You will worry yourself to death with each new symptom if you don't find out.  I know I would.
 
Ernie

[Mickey]

I think it would be wise to take the tests. Its really not that complicated. I go for open MRI`s with contrast. Take a valium or xanax. The chances of reaction to something is so minute that my place never really encountered anything serious. They do a few an hour every day for many years. This should relieve your mind one way or the other. Best Wishes, Mickey

[microsoftfree]

Just Wondering...

I just found out that I DON"T have an AN. However, I like others are really concerned that you might ignore this situation and allow a POSSIBLE tumor to get so big that you will end up with all the worse case scenarios. My situation is similar to yours in that I have a slight hearing loss and dizziness and tinnitus. No headaches, no facial symptoms. My neurologist told me also, that the symptoms I have mimic pre-stroke conditions. I had already had numerous tests done to rule out heart blockage, etc. and when I all of a sudden ended up in the emergency room because the dizziness rendered me unable to function, I signed up for the MRI to check for both an AN and artery blockage.

 I also researched the effects of gadolinium on the internet, but was also careful to do a right-click on those pages choosing "page info" to see when it was last updated. I found that the majority of "scary" info was out of date. As has been suggested, a simple test of your kidneys will help to ease your mind. I have to do a yearly kidney test just to see if the only thing that helps my knee (waiting for a replacement taking Mobic) is affecting them. Without the Mobic, I would not be able to walk at all.

These people here can be a great asset for you as they have been through it all and, as you can see, are all still alive to help others like you and like me. I didn't talk about my fears as much as you have because that's who I am, but I don't know how I would have made it w/o them. I, too, live alone but also wanted to be alive to continue to live alone. Take a deep breth, as many as you need, and trust our doctors as they sound like they will really walk through all of this with you. You may not have an AN.

Becky

[Just Wondering]

Thanks to all of you who have so graciously responded to my inquiry.  Right now I feel that I will keep the appointment next Wednesday for the MRI.  I am still on the fence about the Gadolinium.  The suggestion about having kidney function tested may help since I have not had a workup since my last thorough physical in June 2008.  Jan and Neal your responses about after effects of surgery mentioned on this forum helped me put some perspective into the posts I have been reading.  It is very true that if you had few effects from surgery it is not something you would continue to emphasize while others are dealing with their problems as best they can. The support through this forum is amazing!

[sgerrard]

Still no problems today for me. 

Neal is right, we don't say that enough, and it can seem like problems are all we have, since it almost all we talk about, except when we talk about marathons and chocolate and stuff.

I think there were 10 or 15 cases of kidney issues related to gadolinium, and some law suit about it, which has prompted the extra precautions about using it as a contrast agent. If you don't have any kidney problems, it is not an issue. You and your doctor would know if you had any kidney problems. I love it when the TV ads for a new drug say things like "tell your doctor about any heart conditions you have," as if your own doctor wouldn't already know about them?

I'm glad you're going to have the MRI. I hope it comes back clean as a whistle.

Steve

[nteeman]

...
Neal is right, ...

Steve

Does that qualify me to get on the list for one of your hats?

 

Neal

[Kaybo]

No problems for me today either!    Life is still good - even though I did have AN surgery!

K

[Jim Scott]

Just Wondering ~

All the really good advice has already been offered so I'll just reiterate it and express my relief that you've decided to have the MRI scan, which may show nothing at all!  The gadolinium contrast agent is practically harmless.  I've had 6 or 7 MRI scans in the past few years, all with gadolinium, and never the slightest problem.  The release forms are written by attorneys and meant to shield the hospital from lawsuits.  They have to cover every possible contingency, even if the chance of 'kidney damage' is 1 in 10,000.  It's called 'informed consent' and is made necessary by people who look for the slightest provocation to sue a hospital and/or doctor, who usually are well-insured.  Your caution is not unreasonable, but probably unfounded and, as has been stated, the gadolinium contrast agent makes a (possible) tumor more visible on the scan. 

I also have to echo the comments that rightly point out that this is a support site and the forums are intended to inform and support AN patients.  The majority of AN patients that post here have some problems they're dealing with and need that information and especially, the support.   However, many AN patients post here, then have surgery or radiation treatment and do very well, with few, if any, complications.  These folks generally move on with their lives and cease posting, as they no longer require information or support.  Some of us with good outcomes and few or no problems following surgery or radiation hang around to help others and share our experience.  A few even become moderators, like Phyl (ppearl214), Joe (Joef), Steve (sgerrard) and me (Jim Scott).  We do it because we know this is a relatively rare condition and that our good outcomes and the knowledge gained from our AN experience can benefit others now facing what we faced, some time ago.  This would be folks like you. 

Your initial post indicated that you're being cared for by some excellent, caring and compassionate doctors, with your best interests at heart.  Unfortunately, that isn't always the case, so you are fortunate.  I fear that your admittedly fatalistic attitude could be a hindrance to your well-being, in this case.  I hope you can surmount it and realize that pretending nothing is wrong is imprudent, at best, and does not serve you well.  I was relieved to see (in a later post) that you've decided to have the MRI scan, after all.  I trust it will not show a tumor, but if it does, you'll undoubtedly have great support from your doctors and the folks that frequent these forums.  We know what you're dealing with and we want to help in any way we can.

Jim