Author Topic: headaches  (Read 4907 times)

nanlt124

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headaches
« on: September 19, 2010, 08:51:09 am »
i am still new at this and have another question    i realize from reading that post op headaches are normal    however, i have suffered from headaches as long as i can remember  ( i also have htn issues and chf )    my doctors tell me that my headaches are not related to my AN but, i feel like they might be - as well as my blurred vision    has anyone else experienced headaches that they feel were instigated by the AN     again, mine is 1.9cm x1.67cm right side and i have constant noise and sudden hearing loss as of 08/10/10   hope i'm not a pest with silly questions    don't know who else to ask      still reeling from the news   
thanks  nancy from clearwater

cin605

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Re: headaches
« Reply #1 on: September 19, 2010, 09:24:11 am »
Are you talkng about the feel like you have been hit w/ a baseball bat in the back of your head head aches?
i had those pre op and continue to have them now.
Do not hesitate to ask any questions here....we may not have answeres but most of the time can assure you your not alone w/ all the "crappy crap" that goes along w/ having an AN.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Cheryl R

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Re: headaches
« Reply #2 on: September 19, 2010, 09:39:41 am »
Not everyone has post op headaches.     I am not sure what the percentage is though.       I have had 4 surgeries due to NF2 and no headaches.     I have had some neck pain for a short time due to the head positioning during surgery.        The answer to the headaches you have now is maybe.   I have heard of some who had them and they went away post op and some do not and make them more prone to the post op ones.                I think some drs do not always know the way ANs affect many both pre and post op and what symptoms affect ANers even though they say that a symptom is not related.          
Keep asking all the questions you want here.             Someone has an answer to about anything.  
                                                        Cheryl R                        
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

nanlt124

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Re: headaches
« Reply #3 on: September 19, 2010, 09:42:45 am »
thank you    i feel like, at least some of my headaches must be caused by this thing in my head    i have had a series of "strange" things going on this last year and(even though my doctor says most likely not caused by AN)  couldn't this shift ever so slightly and push on areas of the brain to affect other things?  i don't want to sound silly but, my issues have been things that could have been neurological - pins and needles down my right arm, fingers cramping, and leg numbness - all on the right side    the pins and needles went on for 3-4 months and suddenly stopped     i was sent to a spinal surgeon and then pain management but, never really had any treatment to make it go away    so, who knows what is going on   i'd like to blame it on this dumb AN     ok  i am rambling so i will go for now    thanks again   
nancy from clearwater

leapyrtwins

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Re: headaches
« Reply #4 on: September 19, 2010, 10:06:35 am »
Cheryl R is right.  Not everyone has post op headaches.  I had retrosigmoid - supposedly known for post op headaches - but I thankfully don't suffer from them.

It's possible that your headaches are caused by your AN; I don't think anyone can reasonably rule that out.  But it's also possible that the headaches are being caused by the stress of being diagnosed, the stress of trying to make a treatment decision, etc.

I'm not sure that "pins and needles" down your arm, could be AN related.  If you have "pins and needles" on your face, it could be the AN affecting your facial nerve.
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

moe

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Re: headaches
« Reply #5 on: September 19, 2010, 10:59:10 am »
Hi Nancy,
Just a HI and a welcome to the forum.
I do not suffer from headaches, so can't be of much help (I have my share of other problems though :o )
But I'm sure others will chime in. No question, concern is too silly for us. This is a great support group. Are you looking at options at this point: surgery vs. radiation?
We can surely help you get through the muck of all of this. >:(
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

nanlt124

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Re: headaches
« Reply #6 on: September 19, 2010, 12:03:15 pm »
thanks again for your input       i am seriously considering surgery   i do not want this thing in my head   however, i have insurance issues that i addressed in the insurance forum   so i am not sure what will happen    i meet with my 2 surgeons on tuesday and have some kind of testing      if i have it, my surgery will be at tampa general with dr chris darren and dr agazzi (neurosurgeon - we have not yet met)    i guess i will let you know more when i know                         n

FLsunshine

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Re: headaches
« Reply #7 on: October 17, 2010, 08:24:13 pm »
I'm in same boat as you.... small 4mm AN and doc says the debilitating headaches are not from AN.  But they are constant and as someone on this post already said... like a bat hit you in the back of your head.  Lots of other people on this forum have said headaches pre-op were the norm for them too.  So I really think there is a correlation. 
3mm AN diagnosed in 2006
w&w with escalating symptoms
slow growth - at 4mm in 2010

jerseyboy

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Re: headaches
« Reply #8 on: October 31, 2010, 02:22:36 pm »
Yes, pre-op, the doctors say an AN should not cause headaches.  But. I also have had lots of headaches and a wonky head, like a fullness feeling.
I changed my high blood pressure medication, and lowered the dosage, and my headaches went away.  Now, with my wonky head, I'm realizng that
coffee stimulates the wonky head, so I'm cutting way back on coffee, and it's helping a lot.  It's complicated.
Jeff
Watch and wait since May 2009.

Lizard

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Re: headaches
« Reply #9 on: November 01, 2010, 10:49:23 am »
Hey,
Guess I missed this one, but I'll try to add my experience...
I had horrible headaches that were classic migraines prior to surgery and I also had nasty sinus problems as well and therefore had some mixed headaches.  Where the sinus pressure caused the migraine.  I went on a taper of steroids in the summer of 2008 because the headache went on for a week, but had no real success so I was sent for an MRI and that's were they found the booger.  The Dr's also tell me that pre-op headaches weren't related to the AN but personally I think that is asinine!  My headaches increased in severity and duration prior to the discovery of my AN, I'm sorry but this is no coincidence. 

My 2 cents,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Kathleen_Mc

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Re: headaches
« Reply #10 on: November 01, 2010, 10:01:41 pm »
Hi:
I suffered major headaches for a few years pre-diagnosis, in fact that was my major problem, I was on major pain killers.
I too experienced inter mittant numbness, pins and needles in my arm and leg and eventually in my face.....all on the same side as the AN was found to be.
Like yourself and many others I was told these were not related to the AN but I beg to differ......except for the headaches all these other things went away once the AN was removed and the headaches themselves are a different type than I experienced pre-op.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

nanlt124

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Re: headaches
« Reply #11 on: November 02, 2010, 12:03:09 pm »
hi   thanks for your input   never too late     i too still have headaches since my surgery but, they are different and not as debillitating as prior to surgery     i will always believe they and other issues were caused by my little friend because most all of these symptoms have stopped      staying positive   nancy