ANA Discussion Forum
General Category => AN Issues => Topic started by: alex69 on August 25, 2010, 03:55:55 am
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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!
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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.
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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
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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
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"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.
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I never experienced any symptoms before surgery, but I have heavy and throbbing head 1 1/2 years later.
bell
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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
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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
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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.
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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
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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
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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
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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
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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!
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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?
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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 :)
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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
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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.
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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
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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 (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
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Thanks for the tip, Shannon! That was a very helpful site :D