12mm to 14mm in 3 months

[sissyn]

I’ve been waiting and watch since October 24.  I have now lost hearing according to Audiologist, my balance is horrible even had a couple of falls. I see my neurosurgeon on 5/19 to discuss next steps and this morning my face is tingling.  I know I haven’t endured this for long but now I just want it out.  Anyone else have removal with same type of situation?  Any feedback good or bad is appreciated

[MarlaB]

Symptoms can change without changes in the AN size/location, and tumor growth can happen with no changes in symptoms.
And sadly, treatment does not always result in a lessening of symptoms.
I'm guessing from your post your diagnosis was October 24?  And a repeat MRI is scheduled? You'll know more after your May 19 appt.
Wishing you the best.
Marla B

[sissyn]

Thanks Marla-yes, 10/24 was diagnosed have my next MRI 5/12 before I see the neurosurgeon. I swear I feel like this consumes my every thought.  My family are supportive but I get “it’s benign, what’s the big deal”…makes me sad and I just am over it all

[MarlaB]

You are not alone. Many of us have experienced various levels of support from our friends and family. Be patient with your circle...
In the meantime, we are all here for each other.

[Mark F.]

I can relate.   Mine started at 10 when first diagnosed and by the time it hit 12 I am legally deaf in my left ear, have fallen off ladders as I work construction, and have had numerous other symptoms.  After discussion with my neurosurgeon we decided it's time to end the waiting.  My surgery is scheduled for the 13th of this month, and I can tell you that I have wanted this thing out since the day I found out about it, but now only 8 days away from surgery I am a bit of a nervous wreck.   Never had a major surgery before.  But even as nervous as I am I know that this is the right thing to do for me.   If you know that you are done with it both physically and mentally, because it takes a toll on your mental health sometimes even more than the physical symptoms, then I would push the doctors to get you out of watch and wait.   With the growth and the symptom changes they shouldn't really fight you on that.   For me all I had to do was mention the falling and balance issues were interfering with my work, and he just immediately starting informing me of the risks because he had to do that, and then began setting up the schedule for surgery.  I don't know your location, but I only live a little over an hour from John's Hopkins and they have been excellent to work with.   I'll admit the location isn't the best in downtown Baltimore, but so far I would recommend them to anyone who is in this area.   Do your research if you haven't already, and make sure you are comfortable with your doctor, doesn't hurt to get a second or third opinion.   I knew I was going to the best place around me and I still went somewhere else for a second opinion before committing to Hopkins.

[sissyn]

Hi Mark - I'm in Southern California and going though my health plan (Kaiser Permanente).  I am happy to hear you are getting yours evicted next week, I will be sending good vibes and prayers your way and hopefully on the 19th I will be heading in your same direction.  I am so over this and the impact it is having on my life.

[Mark F.]

Thank you.  I forgot to mention about how other people have been.   You mentioned people with the "what's the big deal it's benign" attitude, and I did run into that same thing from some people.  But the overwhelming majority were the exact opposite which to me personally is worse.    I am so tired of being the half deaf brain tumor guy that everyone seems to look at with pity.    You walk up and try to have a normal conversation and you get that sad eye look followed with a " how are you doing are you holding up ok?".  Some days it made me so angry that am being treated differently.  But you can't  blame people for it.  It actually makes me wonder if I ever did the same thing to anyone I knew was battling health issues.  I know people were just being curious and genuinely concerned about my health, but honestly I just wanted to be treated like everyone else.   It is like everyone else's concern for you makes it impossible for you to have any time to just forget about it for a while and live a normal life.

[DanFouratt]

Mark,

Many years ago when my son had cancer we told very few for a period of time.  Internal processing.  It then became public, no hair will do that. During his treatment and well after most everyone asked how he was.  I got so sick of that question I thought about hitting the person. Then I sat back and looked at it from their point of view.  They were trying to reach out and support me. I learned to accept that as a form of caring.

Fast forward to today.  I am SSD. I am treated differently and I appreciate it. I still get the question about health which I answer.  (I get two because of OHS 6 months later.)  I accept it as caring and realize I do that to others. I am a lot more aware of it but still do it. An ex colleague's wife had cancer and knee replacement. we get together monthly for a lunch and I ask every time about her as he does about my health.

After the question the fun begins.   My wife and I have dropped in to a pattern where she is on the right.  If we start off with her on the left we just switch without talking. I get to set seating arrangement, have not had a bad seat in a year. They understand the difficultly of us with SSD in loud open situations.  They adjust to me if I ignore them as they know it was not intentional. Other actions by people help me live a normal life. I am thankful for the support I get.

I embrace the support I get from others.

[Mark F.]

Dan,
I understand.  And I do know the questions are usually genuine concern, and caring.

I really think that what makes me upset isn't as much the questions as it is the look in their eyes.   I have always been more on the introverted side and try to keep my feelings to myself and show a strong front.  When someone looks at me with the sad face and you can really see the pity in their eyes, it feels like all the effort I've put in to keep everything hidden as much as possible was wasted. 

It's a me problem I know.   A mental health issue that I need to work on.   I am glad people are concerned, but I also am tired of it being the #1 focus.

Like most people I have good days and bad days.  I don't mind the looks and questions as much on the bad days when it's obvious I'm struggling.   I tend to mind it the most on the good days, when I'm trying to live life like I'm a normal person, and I don't want reminded that it's temporary and bad days could literally be just hours away.

[Drlld]

I HOPE YOU FIND ENCOURAGEMENT FROM THSES POSTS.

I am post op 6 month for total removal.of AN and transplant of a nerve. I chose to go into this on my terms.with a possative outlook. I chose to dye my hair blue and cut it short with a undercut shave so they didn't shave my head. Not only were.my doctors surprised the day if surgery but over the last 6 months it has been a mixed blessing I wouldn't change. I wanted a possative outlook. It causes.co.plete strangers to talk to me and lets.me explain why I did it on my terms. It has provided me with overwhelming support.

Initially my tumor was miss diagnosed and it got.larger over time.while putting together the right team.of doctors to perform the surgery. I'm now learning g many things prior to my dx may have been relat3d to it. Some of which has resolved. Some are ongoing. But I am.convinced that a possative look on what is a long road to recovery is the best way.to go. What ever you do to make that happen make it on your terms.be proud of what you are accomplishing. This is not an easy or quick fix and you have to keep posative for the long haul. My nerves prevented me from sleeping for about a month prior to surgery. The news was full of reports you could see the northern lights in my area. After a.month in Alaska and no northern lights, a pilot told me you see them.better by taking a picture. I spent most nights at 2 am standing in my back yard taking pictures of the Black sky. But once I looked at those pictures and could see the green and pink show up n my back yard. I suddenly had the idea someone higher up was looking out for me. I'm not an overly religious person but accepted any prayer anyone offered.me no.matter what they believed in and today I'm so glad I did. My Dr's were wonderful. I spend only one night in the hospital and things keep getting better. I am now on a journey to help.people feel good about what they are going through. I had a woman come up to me and tell me her story of her AN 15 yrs.prior and it was the best 15 min I could of asked for. If you need a pick.me up reach out and ask.for it. There are.people.out there who.want.to give suport and just don't know how. Best of luck and prayers for a.speedy recovery.

[Kamama62]

sissyn

How did the MRI go?