ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: pjb on October 10, 2009, 02:11:25 pm
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hi, everyone i am new on this i had my surgery for left sided AN and having numerous issues but the main one i have not seen discussed is a fullness that feels like half the side of your head is going to explode.............. please help....... this is happening even being on medication....
Went for my 3 month check up tumor completely gone now developing scar tissue, still severe fullness, some hearing came back and now have noises in the ear. I asked the Neurosurgeon about the fullness and he said ask the ENT surgeon that is his part of the surgery, I asked the ENT and he said ask the Neurosurgeon that is his part of the surgery ?????? Okay everyone do you feel the same as I do I did not get an answer and both are avoiding the issue ????? I trust and value opinions from my fellow AN's did your doctors give you an answer to our fullness ???
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Hi! How long ago was your surgery, by the way?
I had a VERY full feeling for a good while after surgery. It involved the entire half of my head and was especially worse at the ear. I have no idea if it's typical or not and I don't remember just how long it lasted, but "fullness" is a great word to describe it.
I didn't hesitate to phone my neurosurgeon's office with any question I had about how things were feeling or looking. They were great and maybe yours is the same? I'm sure others will chime in here soon. I'm glad you found us and I hope your recovery goes very well. We are all on this AN cruise ship together, and are here to offer anything we can to make the voyage as good as possibly can be! Please post anything else you wish. Chances are excellent that someone or many someones can directly relate to your situation!!!!
Take care,
Kathy
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I consider the full feeling part of the 'wonky head' we all know about ! It is unbelievable - mine felt like it was my whole head, not just one side.
I agree with Kathy, call your doctor for piece of mind. I still have a feeling of 'fullness', but much much less - & I find if I start getting dehydrated it gets worse.
Always good thoughts, Nancy
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I had the full head felling for a very long time along w/draining noise cluckin popping.I still sometimes feel like i am underwater.
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Thank you for all your responses at least this validates the way I feel and it is difficult when everyone says you look good but yet internally you feel like your head is about to explode....
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pbjork .....
Welcome to this Forum of caring, supportive people!
I, also, wonder how long ago your surgery was and whether you are now SSD (single side deaf). Although I still have about 20% hearing remaining in my AN ear, the left side of my head (the AN side) feels "full" most of the time. I attribute it to the hearing and tinnitus (noise in my head) issues.
As others have already stated, it would be good to mention it to your AN doctor for clarification on the cause in your case.
Best wishes and keep posting.
Clarice
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Again I would like to say I am so happy I have found this site. I had my surgery done in July of this year and have explained to my doctors and do not get me wrong I am grateful that they have removed all of the tumor I believe 1cm., but as far as the side effects I had mentioned they were not very concerned or was given any information just a wait and be patient. I am going for a follow-up next week having a MRI so I guess that would give us some further information I was told if the metal plate I have that has been very painful after 3 months if it is still giving me problems possibly they will have to remove it ???? I would like to respond to being on the AN cruise I love that statement I think I much rather be on the Carnival or Royal Caribbean heard their rates are cheap.... thank you all for your support.... in my journey.... again we have to be thankful that it was not cancerous....and remember the people who are less fortunate...
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pbjork
Like you are finding, I found this site soooo helpful- especially post op. Anytime I had pain or discomfort I came to this forum and always found that others had similar issues. It always eased my anxiety that something was wrong beacuse I too did not have much warning about after effects of treatment. I also had the full feeling exactly as you and others have described. If it makes you feel better, that feeling is mostly gone for me now. I can't really remember when it went away but it only happens every once in a while to me now. With that said, aways seek out your Dr about anything you have concerns about. Good luck and I hope that things smooth out for you soon!
Erin
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I remember someone on the forum had the titanium stuff removed, can't remember who it was....
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I wish I found this site before the surgery but then again I might not have went through with the surgery.. I found my regular doctor was very helpful..... I am hoping that this is not permanent some people I heard is still experiencing some sort of difficulty. I went back to work after 3 months and I find it so difficult with sitting and standing it was much better when I was home laying down... did anyone else find it difficult outdoors, stores and noisy areas... I guess I have to look at the bright side I did not buy anymore shoes....
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pbork
Yes, outdoors, noisy places and stores were awful at first! But, little by little as I exposed myself to those situations, it started to get better. I still don't love being in loud places but it is less uncomfortable now....sometimes I would still like to lay down a take a nice nap-like I did today ;D Give it some time and listen to what your body needs. If I find myself feeling overwhelmed in a loud place, I leave. Keep reading this forum and if you have the oppurtunity go to a local ANA meeting-they are a great place to meet others who are going thru or have gone thru what you are going thru now. I found it hard when I was a few months post op because I didn't know anyone else who really knew what I was dealing with. It was hard to feel alone and deal with all of this. But, that's what this site is for.....you are not alone!Take Care!
Erin
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Hello and welcome, pbjork ~
I'm sorry you had an acoustic neuroma, surgery and now, the dreaded post-op fullness feeling but I hope and will pray that this situation resolves, soon. Glad to see your posts and thanks for the kind words about our forums. I think you'll learn much here and you'll always have the full support of AN patients who know what you're dealing with, even if others don't.
Jim
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I had the full head felling for a very long time along w/draining noise cluckin popping.I still sometimes feel like i am underwater.
I had the same thing for about a month and a half.
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Thanks I have to look into the ANA meetings I am afraid if I continue to be dependent on my medications I will have to attend a different kind of meeting..... thank you everyone for your prayers keep them coming we need all we can get and I will do the same....
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Hi! How long ago was your surgery, by the way?
I had a VERY full feeling for a good while after surgery. It involved the entire half of my head and was especially worse at the ear. I have no idea if it's typical or not and I don't remember just how long it lasted, but "fullness" is a great word to describe it.
I didn't hesitate to phone my neurosurgeon's office with any question I had about how things were feeling or looking. They were great and maybe yours is the same? I'm sure others will chime in here soon. I'm glad you found us and I hope your recovery goes very well. We are all on this AN cruise ship together, and are here to offer anything we can to make the voyage as good as possibly can be! Please post anything else you wish. Chances are excellent that someone or many someones can directly relate to your situation!!!!
Take care,
How are you doing?? You have gone through so much my issues seem trivial to yours... you sound like a very strong person... hope things get better for you...
Pat
Kathy
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Hi PB and welcome. :) I cannot add to the conversation about "fullness" but did want to peek in, say hello and welcome and good to have you here. Hoping you find answers you seek... and that sharing of your AN journey will help those newly-diagnosed in their research processes.
again, welcome.
Phyl
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I'm having some fullness right now, too. I've had a cold, so part of me wonders if it's related to that -- I'm also starting to tentatively sleep on my surgery side for the first time, so am wondering if some fluid is pooling in a different place now that I'm doing that...
It's always good to come on here and find that these things are common, at least.
I hope it dissipates for us both! ;)
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Thanks I have to look into the ANA meetings I am afraid if I continue to be dependent on my medications I will have to attend a different kind of meeting.....
pbjork
Great sense of humor...use it often! It will help you thru the rough times!
Erin
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Thank you everyone for your feedback it helps so much.. I am just so grateful that the surgeons did not remove my sense of humor that would be very hard for me to handle...we have to remember to laugh .....
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I'm having some fullness right now, too. I've had a cold, so part of me wonders if it's related to that -- I'm also starting to tentatively sleep on my surgery side for the first time, so am wondering if some fluid is pooling in a different place now that I'm doing that...
It's always good to come on here and find that these things are common, at least.
I hope it dissipates for us both! ;)
I hope yours is from a cold and will disappear so far mine has been since surgery and it is 3 months now so I just hope it is not permanent. This is so good to talk to others I am just now sleeping occasionally on the surgery side it does help that we are not alone and could talk to people that know exactly what we are going through. My friends and family look at me and say I look good but it bothers me because they do not see just how much we are hurting on the inside.. Hope you will be feeling better each day....
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Hi PB and welcome. :) I cannot add to the conversation about "fullness" but did want to peek in, say hello and welcome and good to have you here. Hoping you find answers you seek... and that sharing of your AN journey will help those newly-diagnosed in their research processes.
again, welcome.
Phyl
Thank you and I am finding so many answers and do not feel alone anymore...
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yes, it feels like a brick balloon stuffed in one side of my head. However, it does seem like it has a very very slowwwww leak! ;)
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yes, it feels like a brick balloon stuffed in one side of my head. However, it does seem like it has a very very slowwwww leak! ;)
brick balloon i like that i also said it feels like a balloon that is about to explode but your definition is much better...the leak i didn't get there yet....