A place to vent

[mbnolde]

I realized that we don't have a place to just vent.  We have a place to post and receive feedback, but not just a place to type how we feel at the moment.  So...here it is. 

OK...I'll start it off...

TINITUS, I'm so @!#$%^& tired of the ringing. I tried to talk to my wife the other day about it (because it was louder than normal), and she said:  "Ohh...I thought you didn't have that anymore because you never talk about it"

I understand that people without these issues cannot understand them, but me not talking about them doesn't mean that they are GONE!   There...I feel a little better already...

Gary

Gary, I notice from your post that you had GK at U.Va. Hospital....when did you have this?...who did you see (Dr. Hashisaki?)...who did your surgery?  My diagnosis was made there in Dec. 2007 and I am gathering any and all information re: U.Va. and any docs there.  Thank you in advance for any information you can send.  I am in the watch and wait mode since my tumor is very, very small.  My only symptom is tinnitis at this point. 

MB

[GM]

I had my Gamma Knife (GK) Radiosurgery at UVA by Dr. Steiner, here is his link at UVA:

 http://www.healthsystem.virginia.edu/internet/neurosurgery/faculty/steiner2.cfm

I had GK in November of 2003...  The team there is great.  You didn't say where you were from but there is another GK in Hampton Roads Virginia at Riverside...they are working with UVA...

http://www.riverside-online.com/rrmc/radiosurgery_center/index.cfm

I hope this helped.

Gary

[mbnolde]

I had my Gamma Knife (GK) Radiosurgery at UVA by Dr. Steiner, here is his link at UVA:

 http://www.healthsystem.virginia.edu/internet/neurosurgery/faculty/steiner2.cfm

I had GK in November of 2003...  The team there is great.  You didn't say where you were from but there is another GK in Hampton Roads Virginia at Riverside...they are working with UVA...

http://www.riverside-online.com/rrmc/radiosurgery_center/index.cfm

I hope this helped.

Gary


THANKS GARY, FOR THIS INFORMATION.  I LIVE IN THE SHENANDOAH VALLEY NEAR HARRISONBURG...ABOUT AN HOUR FROM U.VA., SO HAMPTON ROADS IS TOO FAR FOR ME.   Did you see Dr. Hashisaki, or only the GK team?  I am wondering about getting a 2nd opinion and am gathering information toward that end.  Who made your diagnosis, if I may ask?  Thanks again for responding to my question.....

MB

[GM]

I was diagnosed by Langley Air Force Base Hospital and Naval Medical Hosital Portsmouth...I failed a annual hearing test (three times in a row), then did some digging and found the AN...I was active duty Air Force at the time.  I wasn't discharged because it didn't affect my work as I wasn't working on the flight line around helicopters anymore...so the loss of hearing was not an issue. 

As for my team at UVA it was Dr. Steiner and his team at UVA...I would suggets calling UVA and talking to them.

Gary

[GM]

I HATE MY ANNUAL MRI's THEY STRESS ME OUT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!   

I have the CD, and it looks the same to me... I go on Monday to see the Doc... and have my hearing test.

There I feel better now. 

GM

[leapyrtwins]

GM -

glad you got that off your chest 

I hope your MRI results and your hearing test results are both positive.

Good luck on Monday.

Jan

[Debbi]

GM-

Lots of good luck on Monday.  Meanwhile, try to relax a bit over the weekend, if you can.

Debbi

[marg]

GM..
     I totally understand.  I had my   1 year MRI follow up last Tusday (after meeting with Hospice care for my 90 year old mother-in-law that morning).   I don't see the doctor until July 16th (unless i can get in sooner- I could have seen him this week but we were supposed to go on our vacation - instead we moved my mother-in-law to an adult family group home....and moved everything out of her apartment ... and still don't know if she will be ok - so we will stay here)  The only good thing about all the hard stuff for mom was that I didn't have time to worry too much about the MRI.
     I plan to go get the written   report from the MRI center and read it myself.  I have the other 2 and at least this time I will not be going into the doctors office totally "cold" about what he might say.
   I hope your results are good !
marg

[Soundy]

I don't know if I am venting or whining ...maybe both

My one year anniversary is Wednesday...hard to believe it has been a year...doesn't seem that
long ago... mainly because it is far from over...

At last appointment things were fine according to surgeon... he told me I should not be having headaches
and to relax and they would go away... I do get stressed sometimes and get a head aches but I am not going
around 24/7 stressed out ... but I always have a head ache,  ranging from a dull ache to stabbing /light flashing
before the eyes pain that puts me in bed or on the couch...

my mouth and eye are no longer dry but taste is still not right...ringing in deaf ear drives me to tears sometimes ..
the Doctor told me give it a year before deciding something was wrong needing follow up or that anything was
permanannt... and that after a year most all symptoms should be resolved... When I told him a sneeze could bring
on a killer headache he told me to avoid sneezing ... 

I honestly don't think he understands ... he got the tumor out and it should be over ...for him yes ... but for me that
was the beginning ... I had some dizziness and hearing loss before surgery but functioned well... had the thing
not took a growth spurt it would still be in my head... I was fine with watch and wait mode even though my
family wanted me to have surgery right off
 
and no one around me understnads... I put a travel alarm clock in the brim of a knit cap and put it on my husbands
head and told him he could not remove it til the battery ran down... he didn't last 10 minutes because
"it's driving me nuts" yet when I have on the TV or radio at night to try to drown out the ringing he
complains...I go to the living room and watch TV or read so as not to disturb him and it does because he is used to me
being next to him and my absence wakes him... I want to scream and yell at him to leave me alone, to get comfortable
as best I can and deal with my absence or TV noise or just shut up ... but don't ... he is great and takes up slack as far
as getting done any housework I miss and has never said a thing about the farm work I used to do but can't at all now
because of safety reasons... we are out my income and he has never said a thing ...we do alright but when I am
paying bills I miss my little check ... it paid for little extras and went to saving for trips or unexpected things that
might come up ... he has said little things about it being almost a year now ...he listened to the doctor say in a year
things will be back to normal and believed it ... I kinda did til about the 8 month mark or so ...last few month
I knew that at the year mark unless some miracle happened things were still going to be rough




I am kinda mad at the world right now and have felt it coming on for several weeks ... I want to call the doctors
office Wednesday morning and say OK start looking for someone to find me answers... I have to have referrals and
he better give them to me ...unless the magic AN recovery fairy is going to fly over and wave a wand making the
headaches go away...


I called the doctor last week... I told him I was having an increase in head pain and he renewed hydrocodone ...said
we would go over things at next appointment in August... also told him that after awhile the pain was moving into my
jaw ... he tells me to use cold presses and go through my range of motion exercises 3 or 4 times a day... I had
already been doing that because if I don't the tendons tighten up from shoulder up side of neck and head to the
point they are visible to people ... he mailed me an little info packet of things to help... number 5 made me laugh
so hard I choked ...

#5 when talking on phone alternate ears so as to relieve strain to neck . When listening to TV,music or in a group
turn your head and use both side to listen . People unconsciously tighten neck muscles by tilting the head to hear
better causing strain that can lead to TMJ pain and headaches.

OK...seeing I only have one ear that hears and this is impossible I know it isn't really funny,  but hit me that way...
ended up with a head ache laying on the porch watching the kids swim....

I avoid watching TV with my family ... I watch with close captions and it bothers them... well big whoopdy dooo...
having one deaf ear and one that is not working right bothers me and there is not a darn thing I can do about it ...

Has anyone tried swimming ... I can't swim with head underwater without getting a crushing feeling to my
head and a headache... swimming with face up makes neck and head hurt so settle for floating around on my
back ... luckily I float really good ...it's  extra fat I have gained since surgery 


I guess I am done ...just feeling down and mad and frustrated... got new insurance cards in mail today... no book to
tell us what is what so not sure how things are going to be ... but I plan on starting calling tomorrow to see if they
have a headache or pain specialist on their list they will pay so I can get something done... I am not banking on
the doctors belief that after a year things would be normal or that the AN recovery fairy and her/his magic wand
are coming my way...

Grumpy in Tennesssee

[marg]

Hi Soundy,
    I understand.... I am 1 year 1 month and  17 days - post surgery.  I still have some facial paralysis, still have times when 'taste' isn't  right .... and the ringing in my ear ...never lets up.  I get some migraine headaches (mainly from stress) too.  The truth is ...... unless someone deals with what we deal with - they can't understand.   They can't see our multiple handicaps ( or challenges as I call them)so they forget we have them -or think they "can't be that bad".  It sounds like your doctor totally does NOT understand (I'm going to my neurosurgeon tomorrow and I don't expect much help either- because surgeons just take the tumor out they don't have any way to help us with the problems after surgery).
     Do you have a local AN group where you live to meet with other AN people or have other AN people to talk to on the phone?   Feel free to personal message me and I will call you .... if you would like.  but know that I am praying for you.  By the time you read this -it will be your 1st anniversary.   Hitting the 1 year anniversary is stressfull and upsetting to most of us .... it was for me.  Hang in there -  you are not alone - and we understand.
marg

[Soundy]

Well the sun came up this morning and I let my kids eat Bunny Track and Double Chocolate Fudge ice cream
for breakfast because that is what they wanted... 

Have been mentally counting down all day the events of the Big Day... still have an hour before I was out of
surgery and about 3 hours til I was awake enough to know it...

I am stuck in recovery where I was at about 8 months out... face functions even though I still get the feeling that
something is touching the side of my face and a little eye twitch ... taste is in the toilet ... grilled salmon for lunch ...
smelled great and tasted awful... the kids finished mine off gladly... can't hear half of what is going on around me
and my head feels like it has squirrels running around in it

I have been lazy for the most part of the day... thinking about ways to get back on track... I think with lack of
improvement and no real help from doctor with his wait out the full year is up attitude I just let every little thing
bog me down ... insurance changes and BAHA battle ... the headaches and no good treatment for those...
I am thinking have a trapped nerve due to fact many headaches start as pain between the tip of my shoulder and
neck before attacking head...will have to wait and see what I can get done if I get the needed referral to go to
headache specialist... called new insurance yesterday and asked for a copy of the book with lists of doctors they
have pre-approved...

Marg... there may be a support group in Nashville or maybe Huntsville Alabama which is closer to me ...don't really know ...
I have a great doctor here in town that called me this morning and told me "happy birthday" ... asked if it should be
happy anniversary and he said no cause I was reborn a new improved version... don't feel improved but as he was
quick to point out and my kids always tell me ... but you are breathing ...
he isn't even in the office on Wednesday ... he knows me and has been more help with headaches and such than my
surgeon... I saw him two weeks ago for other problems and he said he knew I was down even though I said I was fine...


Need to do a little house work...moved furniture Monday and little stuff is still out of place as I fine tune my nest... and
reflecting on what was last year and what is now isn't getting the place straightened out... told my husband that if I finish
he has to either cook or take us all out for anniversary dinner ... dofus said our anniversary isn't til the 18th ...
wonder if he will figure out by the time he gets home what day it is ... or if it is only important to me

Still grumbly but feeling better... so thankful I am still here to watch my two youngest kids grow up
and being human , a bit pissed that I don't feel better... but more thankful than pissed today

[GM]

Soundy,

I’m so sorry that your recovery process is talking so long…I pray that you see improvement soon.

Gary

[GM]

I met with the Doc and got my MRI results and they are….I don’t really know!!

My hearing test and speech recognition (72%) are the same as last year.  I measured my tumor (on the CD-ROM) and it looks the same to me.  I don’t have any new problems other than paying attention to my tinnitus at the moment...

My ENT Doc (military hospital, head of the ENT department), feels that there must have been an error in the MRI measurement because of the sizable difference.  He measured it himself and feels that the tumor is stable for this MRI check.  He pointed out to me that these MRI’s are measured remotely and he felt that there must have been some error in the measurement.

Now for the confusing part, the MRI was read remotely (by the same doc that read it last year), but…this year he DID NOT compare it to last years results. 

One of his measurements showed an increase in size from last year’s MRI…

Last years measurements:  1.9  x 1.6 (in the axial plane) x 1.7
This years measurements: 1.8 x 2.3 (in the axial plane) x 1.7

I am waiting for University of Virginia to reply with their measurements…they measured it last year as 2.10 cm3 (cubed).

So now I feel like a “Zapper� (radiation patient) who is now in watch and wait mode…

Here are the two measurements...May 2007 (left pic) & June 2008 (right pic)

Gary

[marg]

How frustrating for you.  Hope you get the  correct info you need soon.
marg

[Soundy]

Hope you get correct information soon ...