Please Read!! Scared and Need Support!! New to site! THANKS FOR RESPONSES

[Jwh]

Hi all,

I'm a 33 year old female who had AN surgery 5 years ago.  Tumor was 1.2 cm and had it removed at NYU.  The drs. said they removed it all.  I missed my first year mri because I was pregnant and went a year later and was told the mri showed scar tissue.  Went back last year and again was told I had scar tissue.  (Apparently the head of radiology said there were no characteristics of a tumor).

 I was supposed to go back for my follow up mri this past sept. but again was pregnant. A few weeks before I gave birth I noticed that my hearing and tinnitus was fluctuating and still notice it 5 weeks post pregnancy.  In an attempt to schedule my mri, I called my doctor who has since retired (dr. Cohen) and was referred to another doctor who wants to see me before he will send me for an mri.  I am SOOO SCARED that it is a regrowth and not just scare tissue.

I just gave birth to a beautiful baby boy and I want to enjoy him but I can't stop thinking about the possibility that my tumor came back!  It's not fair - I already went through brain surgery and I'm so afraid that I'll have to face this again.  I just want to enjoy my children and husband....

Please someone send my some positive thoughts...

Thank you,
Jen

[Boppie]

Remain calm for the sake of your whole family, your own health and immunity.  Stress and fear harm us.  You can face your MRI and we will be here to listen.  Yes, and regardless of the news on your MRI you will still be able to enjoy your babies.  Remember that Ans are benign.  We know that hormones are more abundant during pregnancy and sometimes cause changes in the body.  Other posters here can fill you in on this part of your issue.  You are going to get through this waiting time.  You can vent here any time.  What a lucky Mom you are and what a hero you are to your children.  I will keep you in my prayers. 

[macintosh]

A few thoughts--

Fluctuating tinnitus is very common; ANs that return after surgery are extremely rare. I have tinnitus, and it varies all the time based on how tired I am, how recently I ate etc. If you've been pregnant, I think it would be amazing if your tinnitus didn't fluctuate.

My experience with tinnitus is that I usually don't think about it, but if I do think of it, then it becomes more difficult to ignore. So if you're stressed and worrying, this probably makes it difficult for you to forget about the tinnitus, and it may well seem like it's changed more than it really has.

Nothing in this world is 100% guaranteed, but the chances of a recurrence are statistically very low (esp. on a 1.2 cm AN, which is small). The change in your hearing doesn't really indicate anything.

Expect good news from the MRI. I would take a lot of comfort from the report from the radiology guy who said he saw nothing to worry about. If it was dead tissue then, it's dead tissue now. But don't be surprised if your hearing and tinnitus keeps shifting. I think that's a common symptom for many of us who are post-AN treatment.

[Brendalu]

Jen,
Welcome to the forum, and try to relax and enjoy your babies!  I think the new doctor is wise in wanting to see you before the MRI.  That was he can get some history from you and not just charts.  I think some doctors want to build a rapport with patients before testing starts.  I would never allow a doctor I hadn't had an appointment with first order a test, even if it is one I had before or needed each year.  I'm just quirky like that.  You're in my thoughts and prayers.  Enjoy those babies
Hugs,
Brendalu

[Jwh]

Thank you for those who have responded to my post.  It does help to find a forum of people who understand AN's and the struggles that people go through.

Has anyone else who has had surgery noticed a shift in hearing and tinnitus?  I would notice  my hearing would decrease when I am sick but recently I've noticed it fluctuating for no reason. (Wondering if the changes can be due to the recent pregnancy and hormones)??  It does eventually restore back to its normal hearing.  I do have a deficit in that ear and just wondering if I would be more prone to changes???

All the "what if's" are making me crazy.  I got March 7th to meet with Dr. Lalwani at NYU.

Thanks everyone!!
Jen

[Lorenzo]

Hi Jen,

As far as i know tinnitus doesn't necessarily stay the same all the time. Mine fluctuates on a regular basis, especially if I'm tired, or stressed or sick. Changes are inevitable, might be related to your recent pregnancies or not. Hearing can also change for me, although not enough for me to be aware of it constantly. I know other people have changing hearing too, but theirs is at times due to some fluid build up behind the eardrum. So, there might well be other reasons for the changes you're experiencing.

Seeing a new doctor is a good idea, and I would also rather meet him first before he ordered some tests. Seems logical to build up a raport with a patient.

Try to relax (easy said, I know) and indeed do enjoy you children! 

Ciao, Lorenzo

[jerseygirl]

Jen,

I also had surgery at NYU for a huge acoustic neuroma 18 years ago. My doctors were Dr. Benjamin and Dr. Cohen. 10 years after the surgery my MRI showed enhancement which a couple of years later became a small tumor. I have been in wait and watch mode all these years and will have surgery in June at SBI (endoscopic). My tumor is no longer small.

I totally understand how you are feeling because but really have to agree with everyone here that your symptoms do not necessarily mean the tumor has returned. I learned over the years that in many ways I am no longer functioning smoothly and my damaged systems have trouble adjusting to new demands and sometimes just plain changes in the environmment. You are still post-partum and your body is undergowing major changes, so it might be it. Another thing is that stress is deadly and I read an article that AN tumors have cortisol receptors. Cortisol is a hormone that is released during stress, so theoretically, stress should make them grow more. In fact, my tumor all of a sudden had a growth spurt for the past two years when I had an unbelievable amount of stress (too long and depressing to describe). When I was really good with my diet, sleep and exercise, the tumor barely grew. Now it needs to be taken out; I really thought I had a few more years before it needs to be done.

Correct me if I am wrong but my understanding is that you had retrosigmoid approach and your hearing has been preserved, at least partially. Now the question is , where exactly is enhancement: internal auditory canal or perhaps brainstem? Retrosigmoid approach is known to very rarely cause regrowth if your hearing has been preserved because there just might be a few cells left there. Brainstem is another thing. There used to be a tendency to take out a tumor but leave a capsule shell on the brainstem which sometimes led to the tumor regrowth. Now the doctors rarely do it because the technology is so much better so they can take the tumor capsule off the brainstem safely. It would be interesting to compare notes regarding our enhancements.

I wish you the best of luck and hopefully, it is a scar tissue and nothing else. Let me know if there is anything at all i can do for you.

                                 Eve

                                                               

[Denise]

Jen,
Sorry you are scared.  I am sure everything will be alright. I agree with Boppie and Bruce. Relax enjoy your babies and if you need to vent, you know where to find us.
 
Take care,
Denise

P.S. Worrying gives you grey hair! (At least thats what my grandma always said....) And I think you are too young for grey hair.

[Jwh]

What a great site - I have tons of questions and it's great to get responses from all of you!!!

Do you know if it's common to have scar tissue after AN surgery??? 

Thanks,
Jen

[krbonner]

Hi, Jen! 

I lost my hearing and developed tinnitus, literally overnight, about halfway through my second pregnancy.  I was diagnosed with the AN when that baby was four months old, and I remember being devastated.  I also remember that my symptoms (including balance issues) flucutated widely while I was pregnant and swollen - the swelling and extra fluid seemed to affect even my IAC.  If you're only five weeks post-partum, your body is still readjusting fluid, horomones, and other things that could definitely make your symptoms fluctuate. 

And while I'm nowhere near being a medical professional, I'd be surprised if any AN surgical patient didn't have scar tissue.

I'm glad you have an appt next month - that's the best way to put your concerns to rest. 

Keep us updated!
Katie

[Lorenzo]

Hi Jen,

Any surgery (and cutting yourself with a kitchen knife while chopping vegetables or any such activity that involves injury with sharp objects) will give you a scar tissue. Even radiosurgery will give some scaring around the tumour. Perfectly normal. Nothing to worry about.

Glad you have found the site, and hopefully we can keep answering the tons of questions you have! 

Ciao, Lorenzo

[matti]

Hi Jen,

First of all, congratulations on the beautiful baby boy!!! Don't worry about all this, relax and please enjoy your babies
 
Scar tissue is normal and it's the bodies way of healing and protecting itself. It constantly breaks down and rebuilds itself. Please don't worry about it. I just had a follow-up MRI and was looking at my films last night and can see the outline of scar tissue.

While I can't relate to pregnancy issues and AN, as I am in the next phase of my life....menopause . I have definitely noticed an increase in some of my post op issues as well as other medical issues due to the fluctuation of my hormone levels. Several of my doctors agree that there is a correlation. I am almost 9 years post op and during the last year my tinnitus has increased and the hot flashes aggravate the AN side of my head and face.

I know how scared you are feeling and everytime I sense some new or strange thing, my first thought is, my AN is back. I think we all go through that, it's normal.

Take care and give the little ones a kiss from me!

Hugs,
Cheryl

[Joef]

Katie and crew are right .. everyone gets some scar tissue .. and "T" can change a lot ..varies with blood presure, salt intake , loads of things ... .

My "T" was very low while in the hospital on Mophine and stayied low once I got home... and then jumped back to normal my first day at work .. ugg....

[ppearl214]

Jen,

Just wanted to say hello, welcome to the site and please... hang in there. You got a gorgeous new addition to your family that needs mom feeling great... so, hang in there... and know, as you can see, we are all here for you.

Phyllis

[Jim Scott]

Jwh (Jen):

Welcome to our discussion forums.  The thread title you posted certainly got my attention!

Previous posters have answered most of your questions and/or addressed your fears but I wanted to acknowledge your post and add my voice to the chorus that is attempting to reassure you that, in all probability, you don't have a regrowth of your AN, although only an MRI can confirm that, as you well know.  As has been suggested, your post-partum physical condition likely is causing some of symptoms you indicated.  Unfortunately, while we can - and do - have our AN removed, the effects of once having it seem to linger for a very long time.  That includes tinnitus and yes, scar tissue from the surgery, both of which are normal for a post-op AN patient, as most of us here are - or will be, eventually. 

If it turns out that you actually do have a regrowth, non-invasive radiation treatment will probably be an option for you.  If this is the case, disregard the myths about radiation  I had 26 FSR treatments last year (following retrosigmoid surgery) with no ill effects, other than some tumor swelling, which is normal. 

I believe you'll be O.K. and definitely be around to watch your children grow.   AN tumors are benign and treatable.  Please remember that.

I wish you well, Jen and hope to see more of your posts in the future.   

Jim