Scared and confused

[Peewee2]

I just found this forum and I hope I can find some answers here.  For the past few years I have been having the sound of what sounds like crackle in my ears and 3 months ago dizzy spells which make me feel like my brain is dizzy... No feeling of vertigo... Just that the room doesn't move but my brain does.  Went to my family doc for the dizziness and she said I had an occluded TM. She gave me a nose spray and NexiumD.  The nose spray made my nose raw and my dizziness a little worse. I had no problems with sinuses at all.  Two weeks later it was still bothering me so she set up an appointment with ENT.  Yesterday I arrived there and had a hearing test done which was normal, talked with the doc and had balance tested again normal, then he told me to hyperventilate myself and tell him when I started feeling dizzy.  He timed me and at 15 seconds I had to stop.  Normal people he said can go 1 full minute.  I have pressure in my head and my ears ring occasionally, but again no sinus problems.  He scheduled me for an MRI in 2 weeks then see him 2 days B4 my vacation starts.  I am sick to my stomach about this especially B4 vacation.  This sounds like AN and I am SCARED...so much so that I feel more dizzy and I know I am allowing my fear to overtake me.  I have read some posts here and right now I don't see where there is actually anyone here who is in a forum that is "Before" the Wait and See forum.  This all looks so crazy to me.... Am I not looking in the right spot?   I'm sorry.....I need to see the toilet, I hate bending over that thing. Please help me anyone?   

[cathyroe]

Hi Peewee,
Just hang on. Have you had an MRI yet? This will tell you if you indeed have an AN or not.... so just wait and see what is really going on. There are many, many of us here in this same club. (the club no one wants to be in... but here we are)
I am a newbie too, just trying to figure it out. But there are a lot of people in this forum that know way more than us. They are so helpful, so just hang on and I'm sure some experienced and wise AN survivors will respond soon!
Cathy

[Imcamodchick88]

Hi peewee,

Being scared is ok. Being so scared that you are making yourself sick, especially when you wont have an answer for two weeks, is not a good idea. I went to three GPs before I was finally sent to an ENT. and then I had my MRI. I was scared too. My boyfriend at the time very often had to listen to me just talk. One thing that helped for me, after I was diagnosed, was I got connected with another lady in my town who had also had an AN, and with an instructor at my school.

Something I learned through my experience is that it is ok to be afraid. It is ok to cry, and ask to be held. To ask someone to just hug you. It's not ok to give up. And its not ok to sit there and analyze all the time. Wait until you have a final answer to have whatever freakout you want to have. Have your freak out, then figure out where to go from there.

My symptoms were simply hearing loss and tinnitus. Then again, Im such a klutz, who would know if I had balance issues. I trip over air.

There are always people here to talk to. But dont make yourself sick over it.

Kristin

[Peewee2]

Thank you Cathy and Kristin for your replies. I was afraid this was the wrong forum. Cathy, my MRI will be done December 2 and I am sure to stop by here often. Kristin, I DO try to get ahold of myself but I find it hard to accomplish.  The reason I am scared is because within the last two years, there have been 8 family members who have passed and I feel like this will make me next. I understand what you are saying, and how my worrying is affecting me. I don't need this trouble right now.  I feel like I'm drowning in fear.  Trying to let the feeling pass is near impossible but I keep trying.

[Derek]

Hi there Peewee2...

A very warm welcome to our Forum and so pleased that you found us. All of the emotions that you describe are perfectly normal at this early stage pre-diagnosis. You have taken positive steps to establish just exactly what is the cause of your symptoms and just as Cathy and Kristin have said, just hang in there and try your best to be calm and rational until you have the results of your MRI scan which will conclusively establish whether or not you have an acoustic neuroma then when you know exactly what the problem is (it may not be AN related) you can take it one stage at a time.

Hoping that your fears will be abated but do let us know how you get on.

Best Wishes

Derek

[Cheryl R]

Peewee, it is scary to find out one has an AN.       How ever the mortality rate for this kind of tumor is very low.       Plus I would say the ones who rarely have had unusual circumstances with the size or location of their tumor.            This is not actually  in the brain and gray matter but outside.      One also on this forum may think everyone has severe problems after surgery but many do not and are on here for a time and then are back to real life.        We may be making some adjustments with hearing loss on one side.     There can be fatigue,balance issues and facial issues most of which are temporary.     So know we are here to help and we have been thru this and know well what is involved.                           Cheryl R

[Peewee2]

Hi Derek and Cheryl, thank you for your input.  I really try not to analyze things but it is hard to break that habit and I dislike that part of me.  I don't have any facial, balance or ear fullness, I have a lot of what sounds like cellophane noise in both ears when I swallow and when I bend over, I get abounding in my head that goes away when I stand erect.  But, it constantly feels like sinus pressure in my neck and the top of my head, without ANY sinus congestion, able to breathe normally through both nostrils.  I do have a little stenosis in my neck.  Does the MRI get the top part of the neck, like where the soft spot at the bottom of the head is.  Doc has ordered an MRI with and without contrast....does it include the neck?   Does anyone just have that pressure only,  or are there other symptoms that accompany an AN? Would there be one on the neck or just strictly the head?  I am upset with myself for not being able to quit this analyzing as I believe asking questions is good here.... But it doesn't make me feel good.  Sometimes ignorance is bliss they say, and sometimes it can go either way.  I feel like I am putting myself and anyone who replies, in a spot. Should I answer her and let her analyze more or would it be better just to not reply. 
See?  I can't stop doing it.  I'm sorry, and I won't take offense if you don't want to be put in that position.  Again, I'm sorry.   

[Derek]

Peewee2...

Feel free to ask whatever concerns you and we will always do our level best to help and support you. We have all been in your situation pre-diagnosis and it so very stressful dealing with the unknown and the what if? etc.

With regard to the matter concerning your neck area, in normal circumstances when a consultant refers you for an MRI scan specifically with regard to a suspected acoustic neuroma the scanned area is usually confined to the actual brain. I am presuming that your ENT consultant has actually discussed the possibility of an acoustic neuroma being the cause of your symptoms albeit you do not mention this in your posts. Just to clarify matters prior to your scan, you could consider contacting the consultant again mentioning the problem with your neck and ascertaining whether the scan should include your neck.

Best Regards

Derek

[Peewee2]

Thank you Derek.  I did ask him about what I read on Web MD about ear problems and that some possibilities could be an anyerusm or a benign tumor.  He told me I should not be reading anything off the Internet,  that in all his years of work,  he had only seen one case of AN, and that it wasn't going to be pretty. He never really discussed if I could have AN.  He told me he thinks it's "just in your head".  I didn't know that that was what he ordered until they gave me my order sheet.   I told him about my neck to which he replied that MRI would be only of the head. 
I know what I feel....the pressure in my head and neck when I bend over and the slight dizziness.  It is real and it is frightening and it has been there for at least three months.

[Derek]

Peewee2...

I am a little surprised that your ENT consultant who has apparently been practicing for a number of years has only come across one case of AN in his entire career. He clearly has not had the opportunity to gain experience in this highly specialised area. However, you are only days away from your MRI scanning procedure so my advice would be to forthwith cease your research until your scan result is known and spend the interim time relaxing and taking your mind away from the situation by absorbing yourself in your favourite hobby or other social activity.

Best wishes and the very best of luck with your scan result.

Derek

[Imcamodchick88]

Peewee,

Here's something about an AN. It is in your head, and no one else can hear your symptoms but you. No one can feel what you feel. Another thing about the ENT, some doctors really haven't seen one in a long time. I still see doctors who haven't seen one since med school, in the small town I go to college in. I went to 3 doctors before my ENT sent me for an MRI. That doesn't mean they don't exist. Although in most cases, I do agree with not reading everything on the Internet, some people think a papercut means cancer nowadays. In this case, education is key.

About worry. I understand the want to worry. If educating yourself will make you worry, then don't do it until you know for sure. You have a few weeks. Enjoy time with your family.

AN is not a death sentence. Most of the people here have an AN and are still here. I did the same thing, and I know how it feels. But you can't focus on that, focus on getting to the MRI and then focus on that outcome.

Kristin

[Peewee2]

Derek, DocB and imacamochick,  thank you. It is so hard to try and relax.   It's something I have to work on, as I wore myself out so much that I slept most of the day yesterday. I went to the mall today to take my mind off it, however, it seemed to me that my hearing was ultrasensative.  I still had the pressure in my head and not too much dizziness. It was good just to get out.  I do have one question, the ENT doc ordered MRI with and without contrast.  I would be charged for 2 MRIs?  Can I tell the doc to skip the WITHOUT contrast and just have the WITH?  Certainly he can tell more from the WITH, what's the point in having both?  Do I have the right to tell him to just do the one with contrast?   

[terisandler]

With and without contrast is one MRI in which the first part is without contrast, then they stop, inject contast dye, and continue the MRI.  Doctors order them this way for a reason. 

[Cheryl R]

Anxiety makes ones symptoms of what ever the cause of the symptoms that much worse.        Most of us here know that  as we have been thru it too.      Some people have a personality that they are anxious easily and that is just how you are.       Even if you find out you do have an AN there is probably no reason you can't have your vacation.       In some ways just knowing can be a relief.          The figuring out what to do next can vary depending on size and tumor location but in most cases you can take your time on that.        There is a normal life for most of us after treatment.     It may or may not take some time to feel really good with recovery but there is life after ANs.       This is from someone with NF2 and has had 3 tumors and 4 surgeries.      One has to really be around me to see that I do live with hearing and balance issues.               This is from someone who just got back 2 weeks ago from another trip to Disney World.       I use a scooter in the parks and had to take a nap a couple days.                   My husband didn't want to go this time so a niece went with me.  She is about my age and we had a wonderful time.                    So hang in there and take it a day at a time.                     Cheryl R

[Derek]

Peewee2...

As per the response of ''teri', it is only the one scan involving the intravenous insertion of gadolinium contrast dye midway during the scanning procedure so being charged for two separate scans is definitely incorrect. The reason for this dual procedure is to ascertain specifically what and where the particular problem is via the visual evidence before and after introduction of the gadolinium. Frequently used in scanning for suspected acoustic neuromas which may be so small that they are often only identified using contrast dye. I have had annual MRI scans for the past 12 years and they are always carried out using this procedure. Suggest you check with your consultant that you are not paying double for this procedure!

Regards

Derek