ANA Discussion Forum
General Category => Inquiries => Topic started by: MAlegant on January 31, 2009, 01:51:38 pm
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Mine does. I seem to have plateaued at 6 months in terms of pain and numbness, and now it's coming and going, and moving from place to place. Gums, tongue, teeth, side of face, etc.,. I guess I might cope better if it just stopped or at least I felt there was a forward motion. Some days it's better, some days it sucks. It's that roller coaster thing. Id like my trigeminal nerve to tell me EXACLTY what it's doing so I can understand.
Thanks,
Marci
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Marci:
I took the liberty of moving this post to the Inquiry forum where I thought it more appropriate.
Jim
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Thanks Jim, you're a peach!
:D
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Marci,
My numbness and burning sensation move all over also. Only after 1 year and 3 months it diminished in area and intensity so I could actually forget about it and go on with my daily business. Before that, the fluctuations were wild and I could not predict what could happen from moment to moment. Now this numbness diminished even further and burning sensation is almost gone. It rears its ugly head only when I did not sleep or am overly tired. Hang in there, Marci! I am sure good things will happen to you, too over time.
Eve
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Thanks Eve--your progress gives me great hope. I am hanging in okay but have the occasional frustrating day or two. Thanks again.
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And your description is EXACTLY right. I am grateful that you "get it". It's impossible to explain to anyone else.
M
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Marci,
I actually get it... and not sure why. Jumps around my head ... sometimes sharp (like knife jabs)... sometimes dull (achy, but not a full on headache). Since I have 2 head diagnosis, sometimes it is difficult for me to recognize which may be causing the nerve pain (and face numbness, etc). I can usually recognize when the Chairi does, but as for the nerve pain, intermittent for me...... drives me nuts... and I have yet to figure a way to get it under control.
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Hi Marci,
My numbness comes and goes and moves all over my head and even sometimes down my neck and the right side of the front of my tongue, no pain though. I guess it's just part of the healing process -- I haven't been too concerned.
Wendy
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I wish my nerve pain would just get up and go >:( It never seems to leave me. If I wasn't on the Neurontin I would be in the the looney bin. I've been told by my disability coordinator that the anti depressant I am on is also good for treating nerve pain. I take my meds, look forward to the spring and summer and patiently wait for the day I have no more pain.
Eternally Optimistic,
Anne Marie
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I feel like I have 'stuck' on recovery for weeks now - nothing appears to be any better - I look better and am so very grateful for that - but I think because I look better people jsut assume that I AM better ..... I still have numbness and burning sensation on my tongue and side of mouth - - my nose, and eye still do not 'match' quite yet, still no tears and more balance issues since starting back to work........ and the numbness on the back of my head is starting to feel like ......... that feeling if you wear you hair in a poneytail and then let it down - it feels like it 'hurts' like it is all bent the wrong way - KWIM? I also have sore spots on AN side eye socket and chin .....
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So, it seems that nerve pain DOES come and go, and move around. Here's hoping we all recover eventually. Thanks for your responses.
M
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Hi,
I have been getting pain in my face and head for about 4 months now, in fact I reached my 12 month mile stone thinking all was well when all of a sudden things started to change, I started to get terrible headaches and my face really hurt, since then the symptoms have just bounced around from my head to my face, sometimes my teeth and gums hurt, my nose is constantly dry and sore, my jaw and my cheeks ache and also around my eye socket and forehead.
Its driving me insaine I never feel normal what ever that is, ::) I think I've forgotten.
I don't understand how I could feel fine for 12 months then suddenly have all of this pain and aching. ???
Has anyone else experienced this, what kind of meds can help, is there a name for it???
Cheryl XxX :-*
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Yes Cheryl there are meds to help. I feel your pain because I too experience the same type of pain. I'm on Neurontin 3 x 300 mgs a day and Toradol one every 6 hrs. I also take Effexor, an antidepressant and Ativan before bed, to help me sleep.
Good luck,
Anne Marie
PS If I wasn't on the meds I would be insane. They really do help to take the edge off most days.
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Cheryl,
Well, after 6 months some of the symptoms I had a couple of months ago (thought they had gone away) have returned. I've decided that nerves are unpredictable (non-medical diagnosis). Pain and numbness jump around; it's enough to drive you crazy. Anne Marie has a good list of meds; I'm still experimenting with drugs. ;D
Marci
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Thanks for sharing that with me, I was beginning to think it was just me, also I guess that at the back of mind is the worry of any re growth, I know its rare but when you know you have a bit of tumour still left in there, well, it does leave you wondering what’s happening inside your head, after all the only time you get to see it is when you have a scan, (which funnily enough I recieved an appointment for yesterday, its due on 17th March) but lets face it if you have a lump anywhere on your body you can watch it and see if it changes, we just can't do that, so your just left hoping, wishing, praying that everything is ok.
I am at the specialists on Thursday so I will make sure I tell them everything, My aches and pains, my anxiety and my heightened emotions which have gradually been getting worse for the last month or so, I don’t know if I’m slightly depressed or just emotional, I’ve never suffered with any sort of depression before so to be honest I don’t really know how that feels, I just know one minute I’m up, up, up and the next I’m down, down, down. In fact today I shouted at my daughter for creasing her clothes that I had only just ironed, I know that doesn’t sound to strange but my behaviour was, I took the school shirt and shouted “why do I bother, lets just crumple it up some more shall we� and with that I screwed it up and threw it on the floor “there� I said “that’s much better now, isn’t it� I walked away in tears but I was laughing at how ridiculous it seemed and how I got so worked up over something so trivial, my husband saw me crying and laughing uncontrollably and asked me firstly if I was alright and secondly was I loosing the plot, which says it all really.
I now realise that I should be getting this sorted out and soon, I shall mention everything that has been said regarding these posts and hopefully I will soon be
n.o.r.m.a.l again.
here's hoping
Cheryl XxX :-*
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Cheryl,
Many of us on the forum experienced depression after surgery so I think it's a normal reaction to a frightening experience. I re-visited my therapist and continued with low dose anti-depressants for a while. Fortunately the depression is gone.
Yeah, I wonder about re-growth also but since it is rare and since I have no control over this, I try to keep this one on the back burner.
Marci
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Hi Marci, I am coming up on 90 days. My right lower jaw, teeth and tongue are still numb and tingly. My oddity is my surgical area. Once in a while it just seems to want me to know that it is still there. It causes no pain, pressure or tingle. My best description would be like when your hand falls alseep. To look at me there is no outward sign of surgery, however I now slur my words a little and my smile is gone. All and all, I am good to go. My next step in life is Wednesday I go to surgery for a torn rotator cuff. Comparing recoveries, I would rather have another tumor surgery. My Harley rides just got stopped for a few months. I can't really complain. I am 67 and still alive. This will my 6th surgery since 1999. I give God all the credit. For whatever reason he still wants me alive. Larry