Author Topic: "heavy" head?  (Read 12031 times)

alex69

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"heavy" head?
« on: August 25, 2010, 03:55:55 am »
Hello,

First of all thank you all so much for a great forum! I was diagnosed with a 2cm AN (can't remember the exact measurements) in the beginning of July this year. The info I got from the doctors was very technical and in search for more detailed info I found this forum, don't know what I would have done without it!
I have been reading posts for a few weeks now and have found that I have all the usual symtoms that you all have experienced: hearingloss, tinnitus, headaches, numbness of the face and tongue but haven't read anything about having a "Heavy" head. Have any of you experienced this? According to the doctors the AN is pressing slightly on the brainstem so I'm assuming that what I am experiencing is pressure. For the past 4 weeks I haven't been able to work or do much of anything really. If I am up and about for more than ½ an hour my head feels so heavy I have to lie down (by then I'm also so nauseous I don't have a choice) As long as I lie down I feel quite alright. Luckily I have a wonderful and understanding husband who has taken over most of my share of the household chores!
I'll probably be put on cortisone after some more tests while waiting for surgery. Have any of you been on this? Did it help at all? I already take codeine tablets for the headaches which make me quite flimsy and wonder how that would combine with cortisone. Is it unusual to feel like this before the op? It seems like so many can carry on working right up to surgery day with only minor symptoms, even with much larger tumors!
Thanks for listening!

nanramone

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Re: "heavy" head?
« Reply #1 on: August 25, 2010, 05:40:52 am »
Hi - What I have experienced is better described as "light headed", instead of "heavy headed"....I'm not sure I understand what it is you're describing. I'm sorry I can't be helpful with this one.

Lizard

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Re: "heavy" head?
« Reply #2 on: August 25, 2010, 07:29:27 am »
Alex,
I have had the heavy head feeling, but mostly after surgery when my balance and wonkiness was in full throttle.  I wouldn't be too concerned and it should get better after surgery.  Perhaps your non-AN side is having a hard time compensating for the loss on your AN side.  Hopefully your surgery is soon, then you can begin the recovery phase.  Although I'm not a doctor this seems pretty normal, but just to be sure you might want to call your Neuro.

Hang in there, you'll be in postie land before you know it!
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Mickey

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Re: "heavy" head?
« Reply #3 on: August 25, 2010, 08:16:39 am »
With a AN so much depends on size and location. A small AN in a bad location can cause many unfavorable  symptoms. It seems that we are dealing with such a small area between bad symptoms and hardly any symptoms. Thats also why symptoms are so diversified between one person to another. Each case seems to be a little different although having alot in common. This is also why every choice we make for treatment depends on each individual case. One thing for sure is we all got to come up with that choice and move on to get feeling better. Best wishes, Mickey

Karen4639

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Re: "heavy" head?
« Reply #4 on: August 25, 2010, 10:52:32 am »
"heavy head" is exactly how I would describe how I feel ever since my translab, but not before. Sometimes it feels as though it's all I can do to keep my head centered on my shoulders.
Karen
translab 7/13/10
2.5cm AN removed
facial paralysis on AN side and balance issues

bell

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Re: "heavy" head?
« Reply #5 on: August 25, 2010, 10:55:09 am »
I never experienced any symptoms before surgery, but I have heavy and throbbing head 1 1/2 years later.
bell

Jim Scott

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Re: "heavy" head?
« Reply #6 on: August 25, 2010, 12:41:03 pm »
Hello - and welcome, Alex ~

Thanks for posting! 

I don't exactly recall the 'heavy head' sensations you describe but apparently they're another symptom of a growing acoustic neuroma. I trust this feeling will dissipate once the pressure inside your skull has been relieved.  My large AN was taking up so much room in that tiny space that when the neurosurgeon 'opened' my skull, he said the CSF 'gushed out' from being under pressure!  Fortunately, I had no complications from the surgery and recovered nicely, as I hope you will. 

I'm sure our members would appreciate knowing what your treatment plan is (surgery, radiation?) and as many details as you care to share.  Thanks, in advance.

Jim

4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Lizard

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Re: "heavy" head?
« Reply #7 on: August 25, 2010, 02:10:11 pm »
Hello - and welcome, Alex ~

My large AN was taking up so much room in that tiny space that when the neurosurgeon 'opened' my skull, he said the CSF 'gushed out' from being under pressure!  Fortunately, I had no complications from the surgery and recovered nicely, as I hope you will. 


Jim



Jim,
Thanks for the visual, love the description and I can only imagine how bad that CSF wanted more space  :)
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

iluuvpups

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Re: "heavy" head?
« Reply #8 on: August 25, 2010, 02:22:08 pm »
Hello - and welcome, Alex ~

My large AN was taking up so much room in that tiny space that when the neurosurgeon 'opened' my skull, he said the CSF 'gushed out' from being under pressure!  Fortunately, I had no complications from the surgery and recovered nicely, as I hope you will.


Jim



Jim,
Thanks for the visual, love the description and I can only imagine how bad that CSF wanted more space


I thought my surgeon had an interesting way of describing the same thing.  He said it was like a nerf ball that was squished into a small space and when the space opened up, it expanded.

By the way, how do you "quote" someone from a previous response - inside the little box?  The only thing I could find to do was to copy/paste the text of the previous response and to change its color.
Original 1.75cm left-side AN diagnosed Feb 2010
Translab surgery May 27, 2010 with Drs. Kartush and Pieper of MEI
SSD on left side, some facial weakness, tear duct doesn't work
Found I actually had a facial neuroma during translab
Remaining 6mm facial neuroma - watch and wait

Jim Scott

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Re: "heavy" head?
« Reply #9 on: August 25, 2010, 02:26:35 pm »

By the way, how do you "quote" someone from a previous response - inside the little box?  The only thing I could find to do was to copy/paste the text of the previous response and to change its color.

Carol Ann ~

There are 4 small, rectangular 'boxes' on the upper-right-hand side of the post you're reading.  The first one is labeled 'quote'.  Right-click on that box and the reply box will come up with the quote in place.  As you can see, you can edit the quote.  I hope this helps.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

iluuvpups

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Re: "heavy" head?
« Reply #10 on: August 25, 2010, 02:29:26 pm »

By the way, how do you "quote" someone from a previous response - inside the little box?  The only thing I could find to do was to copy/paste the text of the previous response and to change its color.

Carol Ann ~

There are 4 small, rectangular 'boxes' on the upper-right-hand side of the post you're reading.  The first one is labeled 'quote'.  Right-click on that box and the reply box will come up with the quote in place.  As you can see, you can edit the quote.  I hope this helps.

Jim

Hey Jim.  I never noticed that little button before.  Thank you!  --Carol Ann
Original 1.75cm left-side AN diagnosed Feb 2010
Translab surgery May 27, 2010 with Drs. Kartush and Pieper of MEI
SSD on left side, some facial weakness, tear duct doesn't work
Found I actually had a facial neuroma during translab
Remaining 6mm facial neuroma - watch and wait

leapyrtwins

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Re: "heavy" head?
« Reply #11 on: August 25, 2010, 06:47:08 pm »
Alex -

I never had a heavy head either pre or post op, so unfortunately I can't help you there.

However, you mention in your post that the info you got from your doctors (about ANs) was all very technical.

You should contact the ANA - if you haven't already - and ask them for their informational brochures.  The brochures are very easy to understand - not written in "medical speak".  I highly recommend them.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Shan1014

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Re: "heavy" head?
« Reply #12 on: August 27, 2010, 07:17:54 am »
Hi,

Not sure if this is the same.  But I really felt like I had "cobwebs" in my brain.  Kind of like I couldn't think clearly all the time.  And for about the first 4 months after surgery I would totally crash and sleep for 2-3 hours every day.  I started back to work a few weeks ago and by the third  day of the week, I come home and sleep for an hour or so after work.  Not sure if it is the same.

Hope everything goes well for you.  Take care
Shannon
4.1cm AN 85% de-bulked on 3/09/10
Dr. Willis & Dr. Macias- Phoenix Banner Hospital
July 2010 MRI shows fast re-growth
(FSR) Stereotactic Radiation Novalis Tx 9/27/10 5 days
Hearing loss and slight Bells Palsy Left side
Experiencing balance, facial numbness, double vision, headaches, & fatigue

kathleen anna

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Re: "heavy" head?
« Reply #13 on: August 27, 2010, 05:39:09 pm »
Hello,

First of all thank you all so much for a great forum! I was diagnosed with a 2cm AN (can't remember the exact measurements) in the beginning of July this year. The info I got from the doctors was very technical and in search for more detailed info I found this forum, don't know what I would have done without it!
I have been reading posts for a few weeks now and have found that I have all the usual symtoms that you all have experienced: hearingloss, tinnitus, headaches, numbness of the face and tongue but haven't read anything about having a "Heavy" head. Have any of you experienced this? According to the doctors the AN is pressing slightly on the brainstem so I'm assuming that what I am experiencing is pressure. For the past 4 weeks I haven't been able to work or do much of anything really. If I am up and about for more than ½ an hour my head feels so heavy I have to lie down (by then I'm also so nauseous I don't have a choice) As long as I lie down I feel quite alright. Luckily I have a wonderful and understanding husband who has taken over most of my share of the household chores!
I'll probably be put on cortisone after some more tests while waiting for surgery. Have any of you been on this? Did it help at all? I already take codeine tablets for the headaches which make me quite flimsy and wonder how that would combine with cortisone. Is it unusual to feel like this before the op? It seems like so many can carry on working right up to surgery day with only minor symptoms, even with much larger tumors!
Thanks for listening!

kathleen anna

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Re: "heavy" head?
« Reply #14 on: August 27, 2010, 05:52:18 pm »
Hi.....I have all the symptoms that you are describing.  I also have slight pressure on the brain stem.  I don't feel as a heavy head, but the way I describe it is that it feels like a wave of pressure in the back of my head, then over my eyes and forehead then nauseous.  I also feel better in the morning, but as the day at work wears on, it really, really bothers me.  I have a really stressful office job and by the end of the day, all I want to do is come home and lay down.  And it makes me extemely cranky!  I do not take any medication for this, my surgery is Sept. 15th.  Do you have a date yet?