Author Topic: New here and scared  (Read 1153 times)

domino

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New here and scared
« on: May 07, 2019, 09:42:28 am »
Hi all,

I found this group while googling information on acoustic neuromas and have found the posts to be very helpful.

A few weeks ago I noticed that my left ear felt clogged and since I have had a history of wax buildup (I've been told I have small ear canals, haha) I went to urgent care to see if they needed to be flushed. They did not and I was given Mucinex, A week after that I still felt the plugged up feeling and the ear would not get better no matter how many times I would pop my ears by holding my nose. Went back to a different urgent care and was diagnosed with an outer and middle ear infection (the dr said my out ear was very red) and given antibiotics and some ear drops and told to follow up with an ENT if it wasn't getting better.

I realized I had ringing in that ear so last week I saw an ENT who did a hearing test and told me I have mild hearing loss in my left ear. The high frequency sounds, I believe he said. He put me on Prednisolone twice a day and I will be back there tomorrow for my one week follow up. He explained what an acoustic neuroma is and that I'd need an MRI with contrast, however I told him I was breastfeeding my 5 month old and he said it could wait until I was done (even if it is a year from now) as these things are slow growing. I didn't even know I had hearing loss but I now realize that I do have some slight difficulty hearing people in crowded situations like a restaurant or whatever.

I am currently not taking a HUGE dose of the steroid because of my anxiety. I suffer from debilitating anxiety that went out of control after the birth of my first child 2 years ago and came roaring back after the second 5 months ago. I am currently taking 25ml of Sertraline for this. So the ENT out me on a lower dose of the steroids due to the affect on anxiety they can have. I do feel the anxiety gets MUCH worse about 20 minutes after I take it, though I don't know if it's a direct cause or my overall mental health right now in dealing with this issue.

Anyway, I am TERRIFIED of going for the MRI. It's not necessarily the claustrophobia feelings (I have had two before, though neither was with contrast, so I will probably opt to take some kind of sedative or something) but the fear of the OUTCOME. What I mean is, I am terrified of it being something other than an acoustic neuroma, if that makes sense. I do not know how I will be able to stand the wait to find out what is going on. I have had a few full-on panic attacks this week thinking about cancer (I know ANs are not cancer, but I take things and run with them and go down the rabbit hole.) My mother died of cancer 10 years ago when I was still in my 20s and I was her caretaker. I have PTSD from this, so I have a really hard time with doctors and scans and even simple blood tests.

Has anyone experienced similar feelings? Am I working myself up too much? How do you get through it? I know the ENT said I could wait for an MRI and it's not urgent but I don't know if I can wait that long.
« Last Edit: May 07, 2019, 09:53:07 am by domino »

golfguy49

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Re: New here and scared
« Reply #1 on: May 07, 2019, 01:06:44 pm »
Get checked out.  It's the only way to alleviate your anxiety.  The MRI takes 40 minutes and all you do is lay there as still as possible.  Easy peasy.  Go do it...it could save your life or your hearing or your smile.  Knowing the answer is better than wrapping yourself in anxiety.
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.
October 2019: 14 x 5 x 5mm.  Surgery scheduled for late Jan 2020.
January 2020:  Surgery at NW Hospital in Chicago area done by Drs. Fishman and Brayton

samanthalambert

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Re: New here and scared
« Reply #2 on: May 07, 2019, 06:00:35 pm »
Hi. I feel compelled to reply to you because I know how you feel. Last year I had hearing loss that I put off for several months. My kids (teens) were so busy and I made excuses that my hearing was just allergies, etc. Long story short, I finally made time to go to the ENT and the hearing test showed high frequency hearing loss in my right ear. He said it could be an acoustic neuroma and I needed an MRI. I was absolutely terrified at what the results would show so I put off having the MRI for about a month. My symptoms worsened and I knew that I needed to confront my fears. I had the MRI and, yes, waiting for the result was the worst. My husband came to the ENT with me and the doc showed me the MRI with a large AN in my head. That was in September and in January I had a 10 hour surgery to remove the AN. Today I am doing Great! I do have some facial problems, and I'm deaf in my right ear, but I look at every day as a gift and I'm back to doing everything I did before. Having an AN has given me a new attitude and I try to look at everything with a positive perspective. I have also had terrible anxiety and my OBGYN gave me a rx for Xanax to help me get through the "waiting" between diagnosis and surgery. It is never easy to face our fears but you can do this! The sooner you get the MRI over, the better you will feel. I wish you all the best.
3.2 cm AN (right side) diagnosed in 10/2018
Only symptom: mild hearing loss
TransLab surgery 1/2/19 @MUSC w/ Drs. Lambert & Patel. Sliver of tumor left.
Rt. Side facial paralysis (nerve stretched), tumor was "sticky", SSD, getting platinum weight implant 6/13/19
Doing fine otherwise!

Greece Lover

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Re: New here and scared
« Reply #3 on: May 08, 2019, 09:23:21 am »
All your feelings are totally understandable.  One of the difficulties with this whole process is the toll it can take on one's mental health.  I had some pretty serious problems with anxiety before my surgery and immediately after. Very often, doctors and ENTs are not aware of the mental health side of this stuff.  With help from a therapist the anxiety  has gotten better for me.  But, the anxiety is not an excuse to make sure you make sound health care decisions.  The chances are strongly against you having an AN, but if it is there, it's not the end of the world! 

I wish you peace!

Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

domino

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Re: New here and scared
« Reply #4 on: May 08, 2019, 09:34:14 am »
Thank you so much for your reply. I feel totally lost and afraid of the unknown and I don’t know how to get back into control. I am seeing the doctor in a few hours for a follow up and I think I’m going to ask for the script for an MRI. I know the only way out is to get it done. I’m just so freaked out and scared, I can’t even think straight.

notaclone13

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Re: New here and scared
« Reply #5 on: May 08, 2019, 12:02:32 pm »
Hi Domino,

I know it is easier said than done, especially if you suffer from anxiety, but try not to worry about having an acoustic neuroma until you actually know if you have one.  Mild hearing loss can result from many causes, especially if you have small ear canals and a history of wax build up problems. Tinnitus is a consequence of all types of hearing loss and not necessarily a sign of an acoustic neuroma. As the old saying goes "don't borrow trouble".  In addition, most people with acoustic neuromas have feelings of being off balance or momentary bouts of vertigo.  Your mild hearing loss and ear fullness have a much greater chance of being due to some other cause rather than an acoustic neuroma, which are still relatively rare. For the MRI, try to find a place with open MRI and take the xanax, which will help with the anxiety. Also tell the MRI technician that you suffer from anxiety and they will make a point of talking to you through the procedure which makes it much easier. The place I go to has a newer MRI machine that actually talks to you during the test and tells you when a new phase of the test is starting and how long it will take.  They also provide earphones tuned into whatever radio station you want  to hear.  The MRI only takes about 30 minutes and with the xanax it won't be so bad. 

domino

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Re: New here and scared
« Reply #6 on: May 09, 2019, 08:31:38 am »
Thank you everyone for your replies; I really appreciate them.

I had my follow up with the doctor yesterday and my hearing has returned to normal. The ringing is gone. I still feel like my ear has water or something, I don’t know how else to describe it. The dr did talk me off the ledge and said I can do th MRI whenever I feel comfortable, he just wants to talk to radiology about the contrast and breastfeeding. So I feel a bit calmer now. I had a panic attack as I was going in for the hearing test but the audiologist talked me through it and told me I did much better this time. I’m off the steroids as well which really makes my anxiety become a bit easier to deal with; I feel like the steroids made me feel crazy  within about 20 minutes of them.

The dr was kind enough to answer my giant list of questions and so that helped as well. He reminded me that as an ENT, he and his colleagues refer patients for MRIs and cat scans every single day for all kinds of issues so I shouldn’t get too worked up.

Anxiety is a beast.

jami

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Re: New here and scared
« Reply #7 on: May 09, 2019, 07:59:42 pm »
Chiming in with many wishes of peace. The amazing part of this forum is all the support.  I cant tell you how many times i called doctors during the process to speed up appointments letting them know i was very anxious. And how valuable the support here has been.

So glad your ENT is giving many answers to your many questions. Information is key.

Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm

 


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