Author Topic: tomorrow will be 3 weeks since treatment  (Read 6910 times)

grammyslim

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tomorrow will be 3 weeks since treatment
« on: April 18, 2012, 09:45:12 pm »
I had my 2 wk checkup and all is well.  No headache or other issued that weren't there before.
First MRI after treatment will be scheduled for Dec 2012.  Back at the gym - modified workout a bit but all if good.

Loving life

Grammy slim
« Last Edit: June 18, 2012, 09:34:15 pm by grammyslim »
1.4 cm diagnosed 01/12
significant hearing loss rt side
total balance loss rt side - AN side -
left side already compensated (who knew)
Radiation completed May 2012 - all systems are GO -- so happy I chose radiation near home.

Suu

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Re: headaches??
« Reply #1 on: April 19, 2012, 05:31:17 am »
Good questions!

1. No headaches to the extent of the pressure ones I got from the CSF leaks.  Minor ones now but they don't last long so I think they are just the runofthemill stress headaches.  I've only had one cluster migraine (seeing the halo effect and losing sight) but no headache with it.  I used to get a lot of them with bad migraines pre operative that were fixed with dispirin.  The CSF headaches were a different kettle of fish - 3 days at a time and nothing could stop them so the nurses ended up knocking me out LOL

2. Tinnitus.  OMG! The noises inside my head (glad they aren't voices LMBO) where my hearing used to be can be either tolerable or horrific and to be honest, when it's horrific, with that noise like a bumble bee or electical static, I feel helpless.  My tinnitus is constantly there and I try to take my mind off it by doing something else and running the fan at night.
Writing in my journal about being grateful for the nice things that have happened in any given day helps me a lot.

Is this the type of answer you were after or should I repost and just say no and yes?  ;D ;D ;D

Suu xxoo
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

Cheryl R

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Re: headaches??
« Reply #2 on: April 19, 2012, 07:36:45 am »
Grammy, not everyone gets headaches.       I am a 4 surgery one due to NF2 and I have never had headaches.     There can be some achiness immed post op due to the actual surgery and relieved by a pain pill.     And do take a pain pill.  One does not get addicted with short term use taken due to pain!       One can have an achy neck due to the positioning during surgery                            Tinnitus is a frequent happening and only have heard of a few who did not post op.
The level can vary among people.      Mine is tolerable most of the time and worse by evening and I do get some interesting noises.       I am sure you will hear more here as this all varies with each person.                                    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

Jim Scott

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Re: headaches??
« Reply #3 on: April 19, 2012, 12:25:30 pm »
Grammy ~

Forgive my tardy response but I wanted to assure you that tinnitus and headaches are not preordained with AN surgery.  Like others who have already posted on this thread, I didn't experience headaches before or after my AN surgery - and my AN was large.  I also underwent radiation (FSR).  Again, no headaches.

As for tinnitus, some AN surgery patients do develop it following surgery but it is not inexorable.  I had mild tinnitus prior to my AN surgery and it remains at the same (tolerable) level, today, six years post-surgery and radiation. 

I do have to add the caveat that one - or a dozen - AN patients experience following surgery should not be assumed to be a template for every AN surgical patient.  We are unique and there are a lot of variables involved with this condition and it's removal surgery.  However, I wouldn't presuppose that tinnitus and/or headaches are inevitable with AN surgery.  They are an unavoidable risk you should be aware of but not allow yourself to get stressed over because many AN surgery patients do not have these issues, post-op.

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.

Bonnie B.

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Re: headaches??
« Reply #4 on: April 19, 2012, 06:00:04 pm »
I did not have any headaches until after my GK treatment.  The headaches only lasted for a few weeks.  It is now five weeks post GK and I have no headaches or any other symptoms, thank goodness.  I had no hearing in my left ear prior to GK and my right side has compensated for the balance issues on my left side.

Good luck to you and keep us posted.

1.7 cm AN diagnosed 13/12
GK on 3/15
1.7 cm AN
diagnosed January, 2012 - no hearing L ear
GK surgery done March 15, 2012 at Yale New Haven Hospital, New Haven, Ct.
Dr. Chiang and Dr. Yu

patbiedermann

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Re: headaches??
« Reply #5 on: April 22, 2012, 04:44:43 am »
Grammy,
The only headaches I have is when I am tired or there is going to be a change in the weather (drops in barometric pressure).  I would like to know how do you determine the headache is something else related to the AN and should seek medical attention?

The tinnitus I have had is very occasional.
Translabyrinthine removal on 6/13/11 for a 3-4 cm cerebellopontine angle tumor (vestibular schwannoma) at University Hospital in Syracuse, NY by Dr. Deshaies and Dr. Woods.  10 1/2  hour surgery.  Got 90-95% of tumor. Hospital stay for 10 days. Inpatient Rehab for 7 days.  doing pretty well.

leapyrtwins

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Re: headaches??
« Reply #6 on: April 22, 2012, 02:18:11 pm »
I'm almost 5 years post op and don't get headaches nor do I have tinnitus.

Didn't have either pre op either.

Jan
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

pjb

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Re: headaches??
« Reply #7 on: April 23, 2012, 07:53:42 am »
I'm almost 5 years post op and don't get headaches nor do I have tinnitus.

Didn't have either pre op either.

Jan

It is always good to hear of the great outcomes especially between you, Jim and Phyl good for others to read that not all cases have problems but I strongly feel they have to know and make the right choices and do their research.

Best Wishes,
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Rob85616

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Re: headaches??
« Reply #8 on: June 09, 2012, 07:37:11 am »
I did not have headaches pre or post surgery (12 weeks post now)  but have noticed slight headaches stemming in the forehead region.  I would also be interested in knowing how you know (or can you know?)  if your headache is a "normal " stress/tension headache or a headache from the AN?
I also have what I consider slight tinnitus-both pre and post but since I've never had before this I guess I don't really know how bad is bad?  I notice the ringing but it's more of an annoyance then anything.
cathy
4CM AN Right Side. Retrosig Surgery March 2012. SSD

staypoz

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Re: headaches??
« Reply #9 on: June 11, 2012, 01:23:33 pm »
Rob85616, I think most of us who have had to deal with post-op headaches will tell you that they are unlike any headache you might have endured.  In my experience, there is no mistaking them for a tension or sinus headache.  For people who have had retrosigmoid, many complain that the headaches seem to originate at the incision site.  Of course, the pain can cause you to tense up, making your neck and shoulders tight, thus exacerbating the pain. 

staypoz