Author Topic: fullness in the head  (Read 4366 times)

jerseyboy

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fullness in the head
« on: November 18, 2010, 01:59:46 pm »
I just received the results of my annual MRI, and my tiny 4mm AN has not grown at all.  I'm delighted but confused, as my symptoms have gotten much worse.   I can no longer walk quickly without a severe fullness developing in my head, where it feels like my head will explode.  If I slow down a lot the pressure goes away.  Has anyone else experienced this?
Jeff
Watch and wait since May 2009.

TJ

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  • 1.2 cm AN right side, CK November 2010
Re: fullness in the head
« Reply #1 on: November 18, 2010, 04:09:24 pm »
Jeff

Good to hear that the AN has not grown.  I think a lot of us get the fullness in the head feeling.  You can ask your doctor there are many different supplements that help some folks.  And of course some people get no benefit from them.  I have posted a few times and I take Lipo-Flavinoid Plus which is a supplement and for me it works eliminating the fullness in the head.  As with most supplements you have to take them for a long time to get the benefits.  For sure you should ask you doctor.

Good Luck
TJ

Tumbleweed

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Re: fullness in the head
« Reply #2 on: November 18, 2010, 06:36:01 pm »
I just received the results of my annual MRI, and my tiny 4mm AN has not grown at all.  I'm delighted but confused, as my symptoms have gotten much worse.   

Hi, Jeff:

The fullness sensation is a very common symptom (in the affected ear, at least) for those who have an AN. As for your symptoms getting much worse, unfortunately that happens to a lot of people even when their AN is still very small. That is, tumor size doesn't always correlate proportionally to severity and number of symptoms.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
13x8x6 mm, Sep. 2013; shrank >70% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

FLsunshine

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Re: fullness in the head
« Reply #3 on: November 18, 2010, 06:59:16 pm »
Same thing here with my "tiny" AN.... lots of escalating symptoms that aren't typical but, hey, they are there.  Best thing you can do is keep log of your symptoms and sensations, share them with your doctor, and have really open conversations with your doctor about how the symptoms are affecting the quality of your life.  I pushed hard with mine and we went through various tests as a process of elimination to find best solutions.  Right now, combination of anti-inflamatory meds and myofacial release PT is working for me.

Good luck!
3mm AN diagnosed in 2006
w&w but escalating symptoms
slow growth - at 4mm in 2010

luvzmutt

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Re: fullness in the head
« Reply #4 on: November 18, 2010, 07:40:38 pm »
Same here as well.  My AN, (aka Jusitn Bieber,named by my daughter because he is really annoying and we just want him to go away), was asymptomatic, but found on an MRI as followup for the optic glioma (I have NF-1).  I would get an occasional ringing in my ear that would last about 10 - 15 seconds but never though anything of it.  Now I know I can thank "the Bieber" for the noise.

Last Thursday I had my first real dizzy spell, and since then, the buzzing in my ear, and the fullness has been going on almost non-stop.  I went to the ENT on Monday, and he prescribed a Medrol dose pak.  I have two more days after today, and still no real relief.  Tried Mucinex and Sudafed, but it hasn't really helped.
Right side AN diagnosed 7/10 - 6.1 mm x 7.8 mm
1st follow-up MRI 1/10/11 - 0.9 x 0.3 x 0.4 cm
2nd follow-up MRI 7/11/11 - 1.0 x 0.7 x 0.6 cm
Follow-Up 12/20/11 - no noticeable change
MRI 11/26/12 - .5x1.0x.6 cm
MRI 10//21/13 - 0.8 x 1.0 x 0.7
Some hearing loss AN side and tinnitus
NF1 & optic glioma

questions?586

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Re: fullness in the head
« Reply #5 on: November 18, 2010, 10:48:38 pm »
My docs all said the size of the tumor and symptoms don't necessarily correlate.  That makes this all the more confusing.  Arg.  Keep in touch with your doctors and evaluate your options.  It's a pain but we've all got to do it.  I'm preaching to myself here.   ;D  Starr
AN 1.4 cm x 1.7 cm x 1.0 cm
fair amount of hearing loss right ear
diagnosed 7/29/10

I'm a fun and reasonable RN, now living far from appropriate medical care. Feeling overwhelmed!

nftwoed

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Re: fullness in the head
« Reply #6 on: November 19, 2010, 01:32:58 am »
Jeff;
   An AN need not grow to produce symptoms. Also, MRI has an inherrant error factor of + or - 1 to 2 mm.
   Any hearing change, or tinnitus?

Mickey

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Re: fullness in the head
« Reply #7 on: November 19, 2010, 09:22:35 am »
Been diognosed over 3 years now but have actually had some type of symptoms for around 30 years. My AN demensions are around .12x.06 and stable since diognosed.  I`ve put my health in high gear with supplements, exercise, arouma theropy, prayer and meditation, and more which I have explained in other W+W posts. During the course of all this I have been thru very many symptoms over many years. Over the last 3 years my symptoms have been greatly stabelized to tinnitus and pretty much bareable where as I could live fine like this. At 62 I`m hoping I will not ever need intervention. Best wishes, Mickey

TOM101

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Re: fullness in the head
« Reply #8 on: November 19, 2010, 11:44:10 pm »
WHAT IS .12X.O6 ? I SEE SO MANY VARIATIONS OF MEASUREMENTS. I HAVE A 1.5CM X 0.9 X 0.9. FOUND 5/06 LOST LEFT EAR HEARING ABOUT A YEAR BEFORE. STARTED AT 1.3 X 0.6 X 0.6. STILL WATCH & WAIT BUT HAD A VERTIGO EXPERIENCE IN THE MIDDLE OF THE NIGHT A FEW WKS AGO AND GOT SPOOKED. HAVE CONTACTED SKULL BASE INSTITUTE FOR SURGERY AND CHANG AT STANFORD FOR CK. ONLY PEOPLE I WOULD TRUST. BUT AS YOU KNOW WOULD STILL LIKE TO W&W.

TOM101

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Re: fullness in the head
« Reply #9 on: November 19, 2010, 11:54:39 pm »
"SORRY"  POOR CHOICE OF WORDS WHEN I SAID ONLY ONES I TRUST. I TRUST THE DOCTORS AT HOUSE. WHAT I MEANT IS THAT I WANT THE LEAST INVASIVE MOST UP TO DATE PROCEDURES, I.E CYBERKNIFE OR MINIMALLY INVASIVE SURGERY AT SKULL BASE.

Mickey

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Re: fullness in the head
« Reply #10 on: November 20, 2010, 08:33:13 am »
In actual size its about 1cm long by half that. What the important part is that its been stable. If you do notice growth along with increased symptoms especially if your younger you may want to act on advice of your doctors. Most important it the best treatment whatever it may be for each of our individual AN problems. Best wishes, Mickey

jerseyboy

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Re: fullness in the head
« Reply #11 on: November 22, 2010, 07:31:32 am »
Thank you to all who posted.  I always learn on this site.  Over the next few weeks I'll be meeting with doctors Choe and Roland in NYC to see what they think of the fullness and pressure in my head.  It feels like a blood vessel thing.  Oddly, I was in Florida for three days and didn't feel a thing, and now I'm back in the cold weather of NYC and could barely get to work this morning.
Jeff
Watch and wait since May 2009.

jerseyboy

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Re: fullness in the head
« Reply #12 on: November 24, 2010, 07:13:59 am »
I figured out a partial, astonishing answer.  The pressure in my head, when it was the worst and became unbearable, was when I was commuting to work in the morning, and doing a 20 minute walk after the train and ferry.  I've wondered why the head fullness and pressure was worst during this walk.  I finally figured it out!  I"ve always listened to the radio during this walk, with earphones in my ears.  Never anywhere else do I have earphones in my ears.  So, isolated, I stopped doing that and, eureka, I can now walk to work without any head pressure.  It's gone!  Amazing!  (I still occasionally have a slight issue there, but now it's very modest.)
Jeff
Watch and wait since May 2009.

 


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