1 year MRI and scared

[Lainie181818]

Hi everyone.
I have my 1 year post op MRI on Monday at House cllinic. I am getting very stressed and feel that my dizziness and headaches are getting so much worse. With all this talk of recurrance, I am starting to freak out. I am hoping that my symptoms are caused by stress and not " Harry" [ my name for AN ] rearing its ugly head again. Dr Brackman told me recurrance happens in about 1%, has anyone else heard that ?
Many thanks
Lainie.

[Mark]

Lainie,

Actually reoccurrence after surgery is probably more on the order of about 5% if you look at most studies, but I would suspect that numbers specific to HEI are lower given their level of experience. I would doubt that you have to worry about "harry" returning and would guess that the anxiety of the upcoming MRI accounts for the increase in some of your other symptoms. I would bet everything will be fine on Monday

Mark

[ppearl214]

Lainie, I'm placing my bet on stress, not a potential twin to Harry........ hang in there, try to enjoy the weekend and let's see what the MRI says

Phyl

[Obita]

Hi Lainie:

I ended up on this forum while stressing out, waiting for my 2 year MRI results, almost 1 year ago.  I shall be joining you in stress and misery in about a month.  My 3 year is comming up. 

I invented all of my pre-surgery symptoms.  I even touched my cornea with a Q-Tip to make sure I felt it.  Ouch, I felt it alright.  I was sure I felt "pressure".  I was positive my face was twitching more than the normal nerve regeneration twitch. 

It was a miracle.  The day I received the ALL CLEAR letter, my symptoms were gone. 

I am going to TRY harder this year to put it out of my mind.  My guess is that I will be posting something like your post and you and others will be telling me to relax. 

Good luck to you on Monday.  Kathy

PS:  my 1 year stress was much worse than the 2 year.............

[Pembo]

I'm up for my 3 year MRI in a month or so. I'm already having dreams, nightmares really. Last week I dreamed that the tumor came back and no one believed me.

I skipped my 2 yr MRI, I wanted a year with no worries so now I'm doubly nervous for this year.

The doc is still saying the chance of recurrence is 1% if they got it all and he swears they did.

We need a separate thread just for all of us facing that dreaded MRI.....

[Jeanlea]

I'm on a slightly different schedule.  I had my first post-surgery MRI at 6 months.  It was fine.  I just had my 18 month MRI.  I pick them up on Monday to take to my doctor.  I figure they must be fine too.  I'll worry about a recurrence if I should ever get one.  I want to enjoy the "good" days now.

Jean

[matti]

I recently had my 8th follow-up MRI and yet again, the week before, I was a nervous wreck and a total delight to live with    Stress will indeed magnify symptoms and sometimes create new ones, I agree with Obita, as soon as I get the all clear, ALL of my pre-MRI symptoms disapear, I'm a happy girl and the household can let out a sigh of relief for another year until the pre-MRI jitters hit again.

 I'll be thinking of you on Monday and don't worry, everything will be fine!

hugs,
Cheryl

[Jim Scott]

Lainie:

Please try not to allow fears of the unknown (your upcoming MRI results) to stress you out. That will not help anything and if you are in the overwhelming percentage of those who have had AN surgery with no re-growth, it's all for nothing, anyway.  In fact, even if your worst fears (regrowth) ever became a reality, all the stressing and worrying would not have prevented it from happening, so what's the point? I think it's pretty normal for a post-surgery AN patient to have some anxiety over their annual MRI scan, as re-growth is always going to be the 'bogyman' in our metaphorical closet.  We just have to choose to push that fear and it's accompanying anxiety aside, for our own good.

I have an MRI scheduled for the end of April.  It's been 4 months since my last one.  The last scan showed the beginnings of tumor necrosis (I had surgery and FSR).  I have little fear about the next MRI and trust that the remaining tumor will continue to show necrosis.   If I ever do have a re-growth, I'll be upset, naturally, but until that happens - which it probably never will - I refuse to worry about it.   Life is too short and worry accomplishes absolutely nothing that can benefit me in any way.

Jim

[GM]

Great advice Jim!

I think we all can relate to the stress in waiting for the MRI...then waiting for the results...

Here's to a great MRI result!!     

Gary

[okiesandy]

I am glad I am not the only one that stresses over these MRI follow-ups. The week-end before my MRI's I am a total mess. Poor husband. I have every symptom. Dry eye, dizzy, facial pain and I can almost feel it growing by the minute. I prepare myself for the worst. How very strange. For 175 days between MRI's I don't give "Ivan" my tumor's name, a lot of my time. Never worry about it at all in fact. I have often wondered how long it takes to become confident enough with our treatment choice to not worry about regrowth?

Sandy

[nannettesea]

Lainie-
What approach did you have for surgery?  I'm curious also about the dizziness.

I'm almost 2 yrs post-op and plagued with terrible dizziness, but no tumor regrowth.

Nan

[Lainie181818]

Hi Nan,
I had middle fossa surgery at the House clinic April 2006. My Tumor was 1.7cm and other than complete hearing loss and the facial stuff there were no other complications. Headaches and dizziness are pretty bad, I take tylenol or acetaminophen on a daily basis. As far as the dizziness is concerned, on a good day I feel like I have had 2 glasses of wine, and on a bad " the whole bottle " I teach kids how to cook, I returned back to work 2 months after surgery and it was very difficult. My work days are very busy and I would come home and literally go straight to bed. However the longer I did the classes the less dizzy I felt. I told Dr Brackman this and he said the busier you are, the better the dizziness is to manage. My classes are fairly spread out, in the summer I do 2 classes a day 5 days a week, This equates to an 8 hour day. In the winter I do classes for a school district so I get a lot of time off. That is not a good thing, the intensity of the dizziness increases, and I have come to the conclusion to manage and get on top of this you have to be fairly regimented with exercises and some kind of movement daily. It can be a real vicious cycle as the more you do the worse you feel, but it does get better. I dont think my dizziness will go away completely, I just think it will have to be a lifelong management thing. This weekend i drove from Santa Barbara to Redondo Beach [ just under 3 hrs as the traffic was bad ] I felt great and my confidence was at a pre surgery high. The next day I  could barely put 1 foot in front of the other. I put it down to too much stimulus and it was probably the equivalent of a 3 hour vestibular class. But boy it did a lot for my confidence, my husband was with me so he was ready to take over the wheel. However I did not need it. I have been driving daily for about 6 months now, but I still take one day at a time. I had a "clean" MRI last week and that does wonders too. I actually think I am finally starting to resurface from this crazy ride. I have had 3 crashes with depression and I take medication but right now even though I still mourn the old me, I think I am starting to accept the new me.