Is it my AN or am I hypersensitive or both?

[MissMolly]

Hi all,

I feel like my symptoms are getting worse since my diagnosis.  I wake up in the morning and feel WAY off balance.  My head feels full, like a really bad sinus infection, and I wobble to the bathroom.  Sleep seems to help and I don't feel this as much when I'm well rested.  Sometimes it hits me in the middle of the day.  I'm missing work as a result.  I am also feeling a 'pulling' on my left cheek (the side of the AN).

Am I hypersensitive now because I'm aware of the AN?  Are these real symptoms?  What's going on??? Anybody else have this happen?   

Molly

[msmaggie]

I didn't have any balance issues, but I was definitely more aware of my body after the diagnosis.  I had never isolated the noise in my ear as tinnutis or realized that the fullness and pressure in my ear was always there and was not in the other ear.  So, I can't tell you if you are getting worse, but you are certainly more tuned in to what is going on in your body!

Priscilla

[heyct]

Hi Molly,

I'm recently diagnosed also & definitely feel like my symptoms have gotten worse since it was made official. Maybe we are just noticing it more. I feel tingling on around my eye on my AN side, almost like it's going into a spasm & my facial spasms seem more frequent during exercise--that I know I'm not imagining. Luckily, I don't have vertigo, headaches or dizziness.

I am also a bit in denial about my hearing loss. All the docs say it's not worth saving. I don't hear mid-range "words", & have no acoustic reflex. I swear I can still hear some things!

I've been told I'm not watch & wait status, and currently weighing the options. I'll be greatly relieved once my treatment is decided upon.
Carolyn

[macintosh]

Here's my own personal interpretation of why the questions Molly raises are so confusing.

We're all dealing with a situation where our symptoms are caused both by something directly physiological (a tumor) and by the way the brain interprets the information it receives. The result is that when you have an AN and it affects hearing and balance, parts of the brain that had learned to work automatically before now need conscious attention. This means your brain is working harder to do things that used to be automatic.

Possibly as a result of this, one of the most commonly reported symptoms of ANs that is very hard to pin down is something that could be called "loss of intellectual stamina." After my radiation treatment two years ago, I could only put in a few hours a day of high intensity work, where before I could do a lot more. This is all very hard to be certain about--it's not like something that's just physical, where either your knee hurts or it doesn't.

I would say I feel better now than I did just after treatment. But it's hard to say whether I've gotten back to normal, or I've adjusted to a new normal. In any event, I don't worry about it anymore. I just do what I do.

Mac

[Jim Scott]

Molly ~

Without going through a lot of specialized tests, I doubt if anyone could tell you - definitively - whether or not your symptoms are growing more intense.  I wouldn't be surprised if they are but these are highly personalized, subjective judgments.   My contention is that we know our own bodies and we definitely know when things aren't 'right', whatever the cause.  I think our friend Mac ('macintosh') offered some astute observations regarding the way our brains have to process, now, and the problems our AN-generated deficits present.  You probably already realize that if these symptoms continue to intensify and intrude on your lifestyle (missing work - and what else?) your AN may have to be addressed sooner rather than later.  Unfortunately, this happens fairly often with some AN patients.  My symptoms grew much worse over a 6-month period and by the time of my surgery, I was almost happy to have the surgery.  (I said, 'almost').  Happily, my surgery was successful and the symptoms; severe fatigue, loss of taste, stabbing (internal) pain at the AN site, all disappeared following my subtotal resection (tumor de-bulking).  My longstanding, unilateral hearing loss remained, as expected.  I trust that, whatever option you choose, your symptoms will also dissipate and your surgery/radiation will be highly successful. 

Jim

[leapyrtwins]

Miss Molly -

IMO, it could be a combination of both these factors. 

Jan

[Kathy M]

Hi Molly!

I can relate so much to what you're going through!  The time between my diagnosis in Nov and my surgery in January was the longest time ever.  During that time, I just knew that my AN was growing faster than any other in modern history and I felt facial tingling, tongue numbness, headaches, ringing in the ears, and vision issues more every day.

For me, looking back, I really think that I was more in tune with my body and was much more aware of the symptoms that I had ignored before due to work, hectic life, and having fun.  That time spent in listening to my body and learning about my AN was a really scary time for me, but I don't think, now, that I was really becoming increasingly more symptomatic.  But then, these symptoms whether they are new or you're just more in tune with them now, make it so important to do what you need to do to take care of yourself and pursue the best possible option on getting better!

Take good care and don't be too hard on yourself!!!

Kathy

[MissMolly]

Thank you everybody.  I have really been feeling like I'm losing my mind.  I feel exhausted from worrying about it.  Because of this, I have moved up my consultation with the surgeon to April 22... just before I go on vacation for a week.  Then I can have some of my questions answered.  Thanks so much for your thoughts.

Molly

[OTO]

MissMolly.

Once you make a treatment decision, W&W, surgery or radiation, you'll feel better too...  Once I made my decision, I felt a calmness and put my mental energy into getting better...  I think I could then push some of the symptons into the background... although they were still there....   Positive energy and good thoughts always help....

[leapyrtwins]

MissMolly.

Once you make a treatment decision, W&W, surgery or radiation, you'll feel better too...  Once I made my decision, I felt a calmness and put my mental energy into getting better...  I think I could then push some of the symptons into the background... although they were still there....   Positive energy and good thoughts always help....

Very good advice.  I developed a sense of calmness a few weeks before my surgery and it definitely helped.  A good attitude just adds to the mix.

Jan

[arkansasfarmgirl]

In my case, my symptoms did get worse between diagnosis and surgery, because the tumor was growing during that time and I wasn't getting much sleep with a newborn to care for (like you, I was better when I was well rested).  Others noticed that I was having balance issues that I was not having at the time of diagnosis.  Like somebody else said, it's probably a little of both for you.

Vonda

[Keeping Up]

Hey there

I agree with the rest of the gang - a bit of both. 

I had all kinds of mysterious symptoms right after diagnosis - I subsequently decided those symptoms were almost exclusively anxiety related.  I vowed myself to stop being so anxious and all symptoms disappeared - nausea was the main complaint.

Fast forward four months - and despite being in a much better place, I am pretty certain I am having additional symptoms - most of which my doctors said I should have (or at least didn't alert me to them), save hearing loss.

I am interested to see come MRI and hearing test in May whether it is anxiety related or whether I do have progressive symptoms - more than just minor hearing loss and balance/dizzy issues.  I am pretty certain they are real because the dizzy happens when I am mid-stride deep concentration at work - not just sitting quietly contemplating the AN progression.

I am comfortable with my place - my ENT and the radiosurgeon said it was small and just go on doing what I do with life - and so I shall.  It isn't like I could either get an appointment with my ENT or another MRI without some truly serious turn of events so I plan to ignore for 2 months then get the picture and decide the next step.

[However, did tell my husband about my finger/hand weakness and he even suggested I follow up with my GP  - so, if my husband doesn't think I am over-reacting, I guess I will call it in.]

[Crazycat]

It's different for everybody. I had been afflicted with hearing loss, lightheadedness, fatigue and double vision the year before and after my diagnosis and up to my surgery.
My equilibrium had become so bad I thought I might have M.S or Lou Gehrig's disease.

In spite of the worsening symptoms, I remained fully functional up until a month  before my surgery. For some reason, I never had any facial problems with either paralysis or pain before or after surgery whereas other people with growths less than half the size I had have been afflicted with constant headaches and facial nerve problems.

If you are alluding to "hypersensitive" as in overreacting, no, you're not being hypersensitive. You're body knows that something is amiss and you're reacting to that awareness on all levels. It's a scary place to be.

Paul

[MissMolly]

Thank you, Paul.  And everybody.  I just feel like I'm losing my mind some days!!  I'm trying to keep symptoms in the background so I can get through the day.  I still get really tired,though. 

BTW, Paul.  You're self portrait looks familiar.  You look like someone I've seen before.  Can't think who.....   

Molly

[bpham]

Yes, I experienced your symptoms before the surgery.