Author Topic: "heavy" head?  (Read 9677 times)

mysticfem

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Re: "heavy" head?
« Reply #15 on: August 27, 2010, 07:05:12 pm »
   Hi Alex,
       I also have what I describe as a "heavy" head. However, it doesn't feel like that all the time. Some days are better than others. I do feel fatigued quite often now and also have to lie down during the day. The doc's description says that there may be some edema (water) in the peduncle(?) due to compression by the tumour; or it may be from radiation. I'm awaiting surgery on Sept. 27 for a neuroma of about 3cm. which has grown in spite of being irradiated 3 years ago - stereotactic fractionated therapy of 25 days. I'm going back to teaching after labour day and have no idea how I'll manage.  I did have some trigeminal neuralgia after radiation and was on anti-seizure drugs which left me so dopy  that I turned to acupuncture instead. That solved the problem.  Now I have almost constant vertigo, some low-grade nausea, short-term memory and balance problems, and fatigue along with the heavy head feeling you describe. I don't take any kind of meds for my symptoms.
Sylvie :)
« Last Edit: August 27, 2010, 07:47:23 pm by mysticfem »

moe

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Re: "heavy" head?
« Reply #16 on: August 27, 2010, 07:10:48 pm »
Hi Alex and Welcome,
Didn't have the heavy head syndrome, but wanted to say welcome to "the club" and we are here for you through all this.
When is your surgery?
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Crazycat

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Re: "heavy" head?
« Reply #17 on: August 27, 2010, 10:16:59 pm »
Yeah, I have that.

 I've also got chronic double vision and a terrible aversion for bright lights. They drive me insane.

I wanted to add that for a long time after surgery my head felt like a helium balloon on the ceiling. I didn't know what was up or down and couldn't make sense of my surroundings.
« Last Edit: August 27, 2010, 10:23:46 pm by Crazycat »
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

alex69

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Re: "heavy" head?
« Reply #18 on: August 28, 2010, 01:07:42 am »
Hi,
Thank you all for your replies. It feels much better knowing I'm not alone with my "heavy head"
I don't know what my treatment plan is yet but have been told over the phone that they are not keen on radiation as I am young (their words not mine haha!).I was unlucky to have the AN discovered just before the holiday season. I live in Europe, Sweden and here almost everyone is on Holiday mid July to almost end of August which put the whole thing on hold for a while. I had the MRI as well as hearing and balance tests early July by the ENT department here in town and was then referred to a specialist team down south. I am meeting them 8-9 September. The Swedish system is really great. The surgery (if that is what it will be) isn't going to cost me anything, just a symbolic sum, even the hotel I'm staying at on the 8th of September only costs 10 US Dollars, 3 meals a day included. The downside however is that we are limited in our choices here. I feels a bit like everything is decided over ones head. I'll see what they say when I get there!
/Alex

Shan1014

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Re: "heavy" head?
« Reply #19 on: August 29, 2010, 08:37:04 pm »
Hi,

I was reading up on some things associated with AN and I was reading about fatigue on a 2004 newsletter from the Acoustic Neuroma Association and it was describing almost the same thing as you have talked about .  Here is the site:
http://www.ananj.org/2004june.shtm   

It is down where it talks about "How fatigue is defined"  Just thought you may want to read about it.

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

alex69

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Re: "heavy" head?
« Reply #20 on: September 08, 2010, 01:30:45 am »
Thanks for the tip, Shannon! That was a very helpful site :D