Author Topic: Does your nerve pain come and go?  (Read 2478 times)

MAlegant

  • Hero Member
  • *****
  • Posts: 1338
  • 50th birthday party pic
Does your nerve pain come and go?
« on: January 31, 2009, 01:51:38 PM »
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
« Last Edit: January 31, 2009, 02:05:41 PM by MAlegant »
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Jim Scott

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 7316
  • To conquer fear is the beginning of wisdom
Re: Does your nerve pain come and go?
« Reply #1 on: January 31, 2009, 02:27:02 PM »
Marci:

I took the liberty of moving this post to the Inquiry forum where I thought it more appropriate. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

MAlegant

  • Hero Member
  • *****
  • Posts: 1338
  • 50th birthday party pic
Re: Does your nerve pain come and go?
« Reply #2 on: January 31, 2009, 02:29:48 PM »
Thanks Jim, you're a peach!
 :D
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

jerseygirl

  • Hero Member
  • *****
  • Posts: 803
Re: Does your nerve pain come and go?
« Reply #3 on: January 31, 2009, 04:58:12 PM »
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
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

MAlegant

  • Hero Member
  • *****
  • Posts: 1338
  • 50th birthday party pic
Re: Does your nerve pain come and go?
« Reply #4 on: January 31, 2009, 05:26:38 PM »
Thanks Eve--your progress gives me great hope.  I am hanging in okay but have the occasional frustrating day or two.  Thanks again.
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

MAlegant

  • Hero Member
  • *****
  • Posts: 1338
  • 50th birthday party pic
Re: Does your nerve pain come and go?
« Reply #5 on: January 31, 2009, 05:35:47 PM »
And your description is EXACTLY right.  I am grateful that you "get it".  It's impossible to explain to anyone else.
M
« Last Edit: January 31, 2009, 08:06:48 PM by MAlegant »
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7497
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Does your nerve pain come and go?
« Reply #6 on: January 31, 2009, 06:43:22 PM »
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.
1cm x 7mm x 4mm, left IAC AN, w/Chiari I Malform., Cyberknife - Beth Israel/Boston, April, 2006
May 10: Per Dr's, "it's a "Done Deal", Hearing same as pre-treatment

"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

wendysig

  • Hero Member
  • *****
  • Posts: 2015
Re: Does your nerve pain come and go?
« Reply #7 on: January 31, 2009, 07:37:52 PM »
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
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

yardtick

  • Hero Member
  • *****
  • Posts: 1371
  • I have to keep smiling, or else I WILL cry.
Re: Does your nerve pain come and go?
« Reply #8 on: February 01, 2009, 11:34:43 AM »
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
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Denisex2boys

  • Full Member
  • ***
  • Posts: 185
Re: Does your nerve pain come and go?
« Reply #9 on: February 01, 2009, 01:12:26 PM »
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 .....
- Oct. 16/08 - 12 hour 'blob-ectomy' at LHSC in London, ON - Dr. Lownie and Parnes
- Some internal facial numbness (cheek, tongue, eye), SSD, headaches (getting better), dry eye, some balance issues..... but othwise AWESOME!

MAlegant

  • Hero Member
  • *****
  • Posts: 1338
  • 50th birthday party pic
Re: Does your nerve pain come and go?
« Reply #10 on: February 01, 2009, 04:12:41 PM »
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
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

cheza

  • Full Member
  • ***
  • Posts: 119
  • I must be strong, this thing is beating me
    • facebook
Re: Does your nerve pain come and go?
« Reply #11 on: February 07, 2009, 05:11:09 PM »

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  :-*
diagnosed 4th Oct 07 with a 3cm left acoustic neuroma,
surgery 9th Nov 07, age 30 at time of surgery,
total hearing loss to left ear, grade 6 facial palsay (getting better)
latest MRI shows regrowth on facial nerve.

yardtick

  • Hero Member
  • *****
  • Posts: 1371
  • I have to keep smiling, or else I WILL cry.
Re: Does your nerve pain come and go?
« Reply #12 on: February 07, 2009, 10:40:29 PM »
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.
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

MAlegant

  • Hero Member
  • *****
  • Posts: 1338
  • 50th birthday party pic
Re: Does your nerve pain come and go?
« Reply #13 on: February 08, 2009, 10:49:05 AM »
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
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

cheza

  • Full Member
  • ***
  • Posts: 119
  • I must be strong, this thing is beating me
    • facebook
Re: Does your nerve pain come and go?
« Reply #14 on: February 08, 2009, 04:00:17 PM »
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  :-*       
« Last Edit: February 08, 2009, 04:02:12 PM by cheza »
diagnosed 4th Oct 07 with a 3cm left acoustic neuroma,
surgery 9th Nov 07, age 30 at time of surgery,
total hearing loss to left ear, grade 6 facial palsay (getting better)
latest MRI shows regrowth on facial nerve.