Wonky head feeling...

[Jwh]

Hi all,

Over the past couple of days, I've had that wonky head feeling.  You know that not so "right" feeling.  I've had two AN surgeries.  My most recent was 2 years ago this month.  I was told a few cells were left behind from the first surgery which produced my other AN battle.  Thus two surgeries later....

I had my last follow up MRI May 2010.  Doctor said it was completely clear.

So my concerns....why this wonky head almost feels like slight vertigo feeling?  I had some congestion over the weekend.  Wondering if that can be a byproduct?  Of course my real concern is what "if" there is something growing???  Before my second confirmation of the regrowth,
I had a bad case of vertigo (spinning) fell to the floor vertigo.  This is nothing like that but I'm still nervous.  Should I be or should I chill?  I've been anxious lately too maybe from that?

Please chime in.....

Thanks,
Jen

[CHD63]

Hi Jen .....

Not being a doctor, I would not venture to give a medical explanation.  However, I frequently experience the wonky head feeling ..... especially when I am overly tired, stressed, or drink too much caffeine.  Somehow those things trigger misfires in my brain on vestibular requests.  My case is a bit different with tests showing no vestibular function evident on either side.

The wonky head feeling seems to stem from the vestibular system giving mixed signals to the brain.

IMO, if your MRI in May was completely clear, it seems unlikely that 8 months later any regrowth would be the cause of your symptoms.  Again, I am not a doctor and I would most certainly contact your doctor if this does not clear up soon.  He/she may want to order another MRI just for reassurance.

Many thoughts .....

Clarice

[james e]

An old medical school saying is "If you hear hooves, think horses not zebras." With your back ground, I would probably think zebras, but with such a recent MRI w/contrast and it was clean, it's probably horses. I think, but don't know for sure, translab is the most likely method used to get 100% of the tumor, and your second surgery was translab. Vertigo is a very common complaint and can be caused by so many things. If I was in your shoes, I'd probably want another MRI...that's my $0.02.

[JAndrews]

I had my translab surgery almost 2 years ago. I still get a wonky head feeling a few times per week. Probably nothing for you to worry about:) It happens more often when I'm tired, like at the end of the day.

[Crazycat]

If by saying "wonky" and you mean lightheaded, I'd say it just goes with the territory. I started feeling "lightheaded" in January, 2002. This eventually led to double vision and then total equilibrium failure. My diagnosis and surgeries didn't happen until 8 and 9/2005. The lightheadedness and double vision never went away (in fact it worsened)
but my equilibrium improved. I began losing my hearing in 1999.

I live with lightheadness, double vision, roaring tinnitus and left-side deafness every day. In AN world, some things never really go away although they may improve somewhat. After all, we have sustained neurological damage.

[Jwh]

Thank you everyone for your responses!!!

Now I'm waiting for the next episode so I'm sure I'll bring it on by anxiety.  Ever since my first symptom 13 years ago I've never been the same.  Between worrying between MRI's and just dealing with the new "norm" it has been a long tough road.  I hope one day I can close this chapter of my life and move on.  It just seems that it always lingers and is just part of my life now.

Being only 37 years old it truly sucks!  I've already worried a lot of my life away. 

I have my next MRI in May and hope that everything is just fine.  I;ll try not to let that evil AN thought creep in and ruin the next few months.  I'll assume that the wonky head feelings are from stress, lack of sleep something less sinister then a regrowth of an AN!!!!

[Joseph]

Hi Jen,
          Sorry to hear about your wonky head and it sounds like you too have had a difficult decade+ dealing with the AN. I too have had a difficult and long journey. I am 34 years young and developed my first symptom at 22. I think the age of AN patients should be adjusted on the ANA homepage as it turns out many of us have been affected not just 30+ but rather 20+. I think you were 24 when you had your first surgery. Is this correct?
 I just wanted to let you know your not alone in this world. I take relief in knowing this and being grateful knowing it could always be worse. You are strong, you are special and unique, and most importantly not alone...

                                                                        Your friend Joseph
                                                               

[Jwh]

Thank you Joseph for your kind words.  I always find comfort coming back to this ANA forum because people understand all your trials and tribulations.  I hope your feeling well and things are going smoothly for you.

Jennifer

[wendysig]

Hi Jen,

I'm sorry to hear you've been feeling wonky-headed, but hopefully it is from the congestion you've had with your cold.  My surgery was almost 2 1/2 years ago (it doesn't feel that long ago) and I still have bouts of wonky head occasionally.  I think it's just a by-product of the AN for some of us.  I'm not a doctor, but since you had a clear MRI in May,  I would guess it will soon pass.   If it continues for a long time get it checked out, if only for your own peace of mind.

Best wishes,
Wendy

[allisjbh]

Hi Jen,

It's been over a year since my AN surgery, and I still get the wonky feeling (I use the same word to describe it too -haha). I've mostly noticed it when I go to a large store like Walmart, and also in very humid weather. I have sinus problems too so I never know what is the new normal any more.

[wcrimi]

Thank you everyone for your responses!!!

Now I'm waiting for the next episode so I'm sure I'll bring it on by anxiety.  Ever since my first symptom 13 years ago I've never been the same.  Between worrying between MRI's and just dealing with the new "norm" it has been a long tough road.  I hope one day I can close this chapter of my life and move on.  It just seems that it always lingers and is just part of my life now.

Being only 37 years old it truly sucks!  I've already worried a lot of my life away.  

I have my next MRI in May and hope that everything is just fine.  I;ll try not to let that evil AN thought creep in and ruin the next few months.  I'll assume that the wonky head feelings are from stress, lack of sleep something less sinister then a regrowth of an AN!!!!

Did you know after the first surgery that they left a little behind or is that just what they told you after you had regrowth?

Who was your surgeon the first time?   2nd time?

I've had wonky head since my surgery, but the intensity has diminished with time.