ANA Discussion Forum
General Category => AN Issues => Topic started by: cathyW on September 29, 2008, 04:38:16 am
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Hello everyone,
Just a quick introduction, My name is catherine and I am 43 years old, I am from the south coast in England and was diagnosed with a 1.5 cm AN in Jan 08. This was the first site I found, it was a tremendous help. Somtimes I was scared about what I read but mostly I was encouraged. I would like to thank you all for your contributions. It's hard to explain but it's like dipping into a load of friends who don't even know you are there but give you support anyway.
I was worried about what treatment to have, It was if being diagnosed was not enough but having to choose seemed to much. I had decided in my heart on the trans lab approach (hearing loss in AN side and also tinintus kicked in after MRI scan) when I saw the surgeon this was the approach she recommended, so there was no worrying about what to choose as apart from 'wait and watch' there was no other choice. I was so pleased that it had been taken out of my hands.
I was treated with the NHS in a special neurological hospital, the care I received was outstanding and I felt in very safe hands as the surgeons do 70 AN operations a year. In the UK we cannot choose our surgeons or where to get treated. I feel very lucky living only 30 miles from this hospital.
When I came around after the op, I realised I could close my eyes and smile. I felf so sick for 3 days ( this was the anesthetic) The doctors said I had a little weakness in my face. Everyday I checked that I could smile and close my eye. I was in hospital one week, the staples were removed after six days, the removal was painless. The first week home I slept and slept and my husband cared for me. After a week, started going for little walks, and had a huge appetite.
Now it's 5 weeks later :When I now look in the mirror my smile is only a little uneven, and my AN side eye looks bigger than the other, but I can live with that. Also for the last 4 weeks half of my scull has been numb, it's now starting to get feeling back. My balance is not to bad, if I go out on my own I take a stick, to steady me just in case. 2 weeks ago I thought I had a CSF leak, as a clear liquid was only slightly coming out of one nostril, I called the hospital who advised me to come the next day, the doctor did not think it was.
I was just thinking the other day that I was getting through this way to easy, I am on no medication now, apart from the odd paracetoma and ibuprofen and my tinnitus is quieter. But 4 days ago I started to have a new problem ,I have is a terribe pain behind my ear at the top of the neck. It is just awful when I'm in bed and moving my head, it is effecting my sleep, the doctor says it is the muscles they would have had to cut through. Has anybody had this?
I just wanted to share my experience with you all and thank you again. You were and still are great help.
I hope now I can help newbies to.
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Hi cath i am from the uk as well i am also a member of BANA (BRITISH ASS. ACOUSTIC NEUROMA), where did you have your op, i had mine in glasgow for a over 4.5cm, you seem to be doing really well for 5 weeks. Am not sure about your neck pain but am sure someone will answer your question,
anne
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Hi
Glad to hear that your operation went well, I'm a newbie on the "watch and wait", but always reading people's journeys. I'm from the states, Massachusetts the be exact. Hope someone can answer your question about the new "pain" you are experiencing. Like you, I find this forum great and yes even thou the people on this forum do not know you they are like old friends.
LisaP ;D
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Hi Catherine -
thank you for sharing your story with us.
I'm sorry I don't have any input on the pain you are experiencing, but perhaps someone else will.
It sounds like the rest of your recovery is going very smoothly.
Jan
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Welcome Catherine to the best little forum in town. I'm in the W & W mode. So happy ur experience was a positive one with little isde effects. Again Welcome.
JO
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Hi and welcome Cathy.
I'm so pleased to learn that you had a relatively good AN experience. That is, a successful surgery. I trust your current issues will soon be resolved. I'm also quite pleased to learn that you found this website/forums such a help. That makes my day! Thank you so much for your post. :)
Jim
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Hi, Catherine,
I'm another Catherine, from New Jersey, U.S.A. My AN was about the same size as yours and I had trans-lab surgery this past January. I did not experience the behind-the-ear pain near the top of the neck that you describe, nor do I understand the muscle involvement which your doctor mentioned. If the pain continues, I would certainly suggest a prompt visit to your doctor. I think the dripping nostril situation, even if it's ended now, is worth mentioning again to your doctor as well. Best wishes as you continue your recovery! It sounds as though you're coming along just fine, and hopefully this ear/neck pain will be resolved quickly.
Catherine (JerseyGirl2)
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Catherine~
Welcome to our little group - glad you joined us! Sounds like you had outstanding care and are doing well now. I am by no means a Dr., but you mentioned that you have had numbness and are now getting feeling in that area - just a thought, but maybe that is starting to wake up too and so it is giving you trouble. I am sure someone else will have more insight!
K
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Gracious Catherine, you and I could be twins. I was told the pain was, in part from muscles being cut and from my head was twisted to one side for four and a half hours. I never had any headache, just the worst pain in my neck. It will go away, I promise.
As for the face thing, I used to "play" with it. Fill your mouth with water and try to squirt it out in a stream. I'd like to think this helped strengthen muscles around my face.
I just had my one year anniversary 9/25 and I'm doing just fine.
Donna from Charlotte
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Hi Catherine-
I have had ongoing problems with upper neck pain (sugery almost 5 months ago, translab). The neurosurgeon said that it is most likely muscular "damage" from the surgery. I am seeing the neurotologist on Monday and will also discuss it with him. I think it is better than it was a few months ago, but it is a persistent pain and is distracting. I have found that massage and warm compresses help, as does ibuprofin.
I wish I had a quick fix for this, but I think it is a matter of time and patience. Definitely talk to your surgeon/s about it though.
Sending you good wishes from NJ...
Debbi
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Hello Catherine,
Sounds like you are doing really well at 5 weeks. The neck pain was pretty bad for me as too. I like K's explanation that this could be because you are getting feeling back. I am using heat wraps and gentle neck turns to loosen it up when it gets sore and even at 10 weeks there are moments when it acts up. I hope it resolves for you and I also think it's part of the healing process.
Best,
Marci
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Hi Catherine-
I feel your pain!I just got home from my 3 month post op i have pain comojng from head going down neck7 shoulder on the oposit side of my surgery.Neurologist says its nerve damage
& hopefully will go away w/ time.
Cindy
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Hi Cathy
I can easily identify with that neck pain. My neck and shoulder on my AN side were terrible until about 6 months post-op. Finally, one of my doctors suggested that it was probably caused by the trauma of having my head in an exagerated position during surgery for so long. It eventually went away. I'm 10 months post-op and I don't noticed it now. I hope yours goes away sooner.
David
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hello all
thank you, I now do feel reassured regarding the muscle pain. I think you a right Kayboo. Now that all of a sudden the weather has changed from summer to autumn in one day, I am wearing a nice warm lightweight scarf all day around my neck, and last night did a few gentle neck turns.
Thank you again
Catherine
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Welcome Cathy, I am so glad things went so well, it can be so scary not knowing what can happen. I found that when I went for massage it really helped my neck and base of my head pain. I was so happy to have found this site and it is wonderful to be with people who truly understand. You came to the right place. Looking forward to getting to know you.
Michelle ;D
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Hi Catherine,
Welcome to this forum -- the club everyone wishes they didn't need to join but is thankful it is here. I'm glad you've found it to be such a great source of information and support. I'm also glad to hear your surgery went so well and that you are doing so well on a whole. I have had neck pain and pain behind my AN ear, as well as pain in my upper back. My doc said it is all most likely related to the surgerybut should settle down once the swelling from the surgery subsides -- I also know he moved the muscles in my neck rather than cutting them. Heat wraps and ibprophine (spelling?) have been a huge help. I have also been seeing a chiropractor for my back and although she is not allowed to manipulate my neck (the doc says it's too soon for that but gave me his blessing otherwise) it has helped enormously. You don't mention back pain, but if you have it, perhaps a chiropractor would help. I've also heard from another friend on another forum that acupuncture can also help. If your medical coverage will pay for it, it might be worth a try.
Best wishes,
Wendy