ANA Discussion Forum

General Category => AN Issues => Topic started by: Christa9 on April 27, 2014, 10:58:27 am

Title: Pre - AN Diagnosed Stage
Post by: Christa9 on April 27, 2014, 10:58:27 am

I have not been Diagnosed with an AN as of this time. I do believe that my symptoms are related to the possibility of one. Which of course scares me. My first and foremost problem is that I do not want to have an MRI done as I'm highly claustrophobic so this leads to an even more anxiety as I hear this is the best course of action for diagnoses and also the ultimate course of action for following progression of an AN and treatment. I'm currently starting with a non contrast CT scan in hopes that nothing will be found and that of course sounds contrary to my best interest because from what I read it is likely that nothing will be found unless it's a very big problem. Symptoms: My primary symptom was unilateral tinnitus in October of 2013. I was treated for ear infection, learned to cope with ringing in ear. I was scheduled for a hearing test, came back with some loss but minor. The doctor at that time believed that no further investigation was necessary. several months of dealing with ringing in ear I have had other complications continued fullness feeling in ear, sometimes headaches but most of the time not. Sometimes dizziness but nothing that would stop my activity. (although I do notice that the body can compensate for any dizziness) so feel that this could be my fact. What took me back to the doctor was what I described as an echo in my ear, at times I will have an extra sound after every word that I or someone else says. This of course I suspect prompted the doctor at this time to suspect the possibility of nerve damage and to ultimately investigate with the suggestion of an MRI which I refused. He then suggested a CT Scan which I agreed to. I have been in communication with my ENT for several months during the time I started having Tinnitus and pain in the ear and other symptoms. I'm hoping it is something else but I can only believe that the suggestion of an MRI or CT scan is to rule in or out only one possible outcome. I have looked through the list of other possible diagnoses for my condition but ruled out obvious ones that did not apply to my body. The ENT I had suggested it may be TMJ but I think that was in reservation of my mental well being.

Title: Re: Pre - AN Diagnosed Stage
Post by: john1455 on April 27, 2014, 06:40:19 pm

Tinnitus is a very difficult issue to resolve let alone to determine its cause. Before I retired from dentistry I specialized in the non surgical treatment of TMJ disorders for over 20 years. A competent dentist who knows his/her stuff will be able to tell you if you have a TMJ disorder or not; be aware that not all dentists know how to diagnose and/or treat TMJ disorders. You can self diagnose yourself for TMJ by inserting your pinkies into your ears with the soft portion facing forward and opening wide and closing several times (try not to bang your teeth together). If you feel clicking or popping, then you have a TMJ disorder. Clicking and popping of the jaws is diagnostic of TMJ and the purpose of inserting the pinkies into the ear canals is to better feel the clicking/popping if it is present since some are almost inaudible. From your post, I doubt that TMJ is your problem. Also be aware that tinnitus is the hardest symptom to eliminate in patients with TMJ.

Title: Re: Pre - AN Diagnosed Stage
Post by: Echo on April 28, 2014, 08:45:50 am

When I first started having problems and went to an ENT, he sent me for a CT Scan and an MRI as he suspected an AN.  My CT Scan came back clean, no sign of anything.  The MRI (without contrast) showed a 1.8cm AN! 

If you or your ENT suspect you may have an Acoustic Neuroma, you should absolutely have an MRI to confirm or rule it out.  If you do in fact have an AN it's better to find out, know the size of it and what your options are.  AN's don't go away like a virus and this is not something to ignore based on a fear of having an MRI.

While MRI's are challenging for people with claustrophobic  issues, they are manageable.  You can take Ativan or something similar to help relax you.  I personally do not like confined spaces, so I always have a soft cloth placed over my eyes and request the lights in the machine be dimmed.  I focus on my breathing and try to imagine what the sounds I'm hearing in the machine remind me of.  It helps make the time go quickly.   You have a button to hold in your hand if you need help at any point and you can speak with the technician.   There is nothing in the machine to hurt you and it is totally non invasive, so that should help calm you somewhat. 

Hopefully others will post and give you further info about different types of MRI machines available.   I believe there are some places with "open" MRI machines where you can stand up, but I'm not personally familiar with them.

Best of luck!
Cathie

 

Title: Re: Pre - AN Diagnosed Stage
Post by: arizonajack on April 28, 2014, 10:14:48 am

I'll be a little more blunt here.

You are kidding yourself if you don't have an MRI with contrast.

There are sedatives you can be given to keep away the claustrophobic feeling.

Title: Re: Pre - AN Diagnosed Stage
Post by: Ned on April 28, 2014, 12:35:52 pm

Tell your doctor about the claustrophobia, they can load you up on sedatives that you won't care.  I had to do this. Don't let this keep you from doing the MRI. I know some others that had this issue that used another way to calm them down, but it is illegal in most states.

Title: Re: Pre - AN Diagnosed Stage
Post by: john1455 on April 28, 2014, 12:38:38 pm

I had the same experience as Cathie - a CT scan ordered by my then primary care provider came back normal with no problems found. After I disagreed with the pcp's diagnosis, was I referred to a neurologist, who ordered a MRI. That's when my 1.9cm AN showed up clear as day. Heed arizonajack's warning because once symptoms like hearing loss rears its head, you will not likely be able to reverse it. Treating ANs, whether with open surgery or radiosurgery, is not like having your appendix removed. Symptoms caused by the AN will probably remain even after treatment in most cases.

Title: Re: Pre - AN Diagnosed Stage
Post by: Kathleen_Mc on April 28, 2014, 08:49:02 pm

I can understand not wanting to have the MRI due to claustrophobia, I suffer the same issue. Mt doctor gives me Lorazepam before, I take one about 90- minutes before the test and another about 30-40 minutes before and get it done without much of a problem. Maybe that's something you could look into so you can get the MRI

Title: Re: Pre - AN Diagnosed Stage
Post by: leapyrtwins on May 02, 2014, 10:16:17 am

Tinnitus isn't necessarily a symptom of an AN.  Lots of people with tinnitus don't have an AN.  And lots of people who had/have an AN don't have tinnitus (I am one of many).

Plus tinnitus isn't an "ear problem" - it's all in your head.  Although it's very real, it has nothing to do with your ears.

The only way to definitively diagnose an AN - or rule one out - is an MRI with gadolinium contrast.

As other have said, if you're claustrophobic ask your doc for a sedative to get you through it.  Lots of people have to rely on a sedative.

Good luck and keep us posted,

Jan

Title: Re: Pre - AN Diagnosed Stage
Post by: Pamm659 on May 02, 2014, 03:49:36 pm

Not trying to scare you but the MRI is the least of your worries if you do have an AN. I am 6wks Post Translab for a 1.4cm AN and in looking back, the MRI was the easiest part. I too am claustrophobic and left my feet exposed, did some Pursed Lip Breathing (smell the roses, blow out the candles) and I spent the entire time in the machine convincing myself I HAD to lay still and get through this for my health, my family and MYSELF. Do the MRI. How can healthcare professionals help you if you don't do the necessary tests that will put you with the experts you need? You will waste precious time that can be more constructive if you know for sure. Good Luck...

Title: Re: Pre - AN Diagnosed Stage
Post by: Hokiegal on May 02, 2014, 08:58:54 pm

As others have said, please get the MRI.  Sedatives are available.  Various breathing techniques can also help.  I use a yoga-type breathing where I visualize inflating and deflating a balloon.  Sounds flaky, but I come very close to dozing off in the machine.  The yoga breathing also helped me through some uncomfortable times post-op.  But please get the MRI.  Who knows, maybe it will show NO tumor and you can cross it off the list :)

Title: Re: Pre - AN Diagnosed Stage
Post by: Kat From Indiana on May 03, 2014, 08:52:19 am

I too was sent to my dentist for a splint for my TMJ, which I did not actually have.  ::)

Regarding the MRI:They gave me headphones for my MRI and offered me a choice in music.  I chose something relaxing and then went to one of my "happy places".  In my terribly busy world, it is not often that I find 20 minutes of uninterrupted down time.  I listened to instrumental music, kept my eyes closed and did my relaxing breathing.  I never opened my eyes and I think that helped me to not feel the confinement of the MRI tube.  It's like when I give blood.  I don't mind it, but I never watch them put the needle in my arm.

!Happy Place!HappyPlace!HappyPlace!

Title: Re: Pre - AN Diagnosed Stage
Post by: cagneyd on May 04, 2014, 06:54:59 pm

I was told that I needed an MRI and I had no idea that I was claustrophobic until I was in the MRI. I panicked immediately and they pulled me out. I called the Doctor and said there was no way. They prescribed valium and said to try it again. After thinking about it, I said no way. Doctor said fine but he said he wanted me back for another hearing test after 3 months. I went back and further hearing problems prompted the Doctor to strongly suggest I had the MRI. I asked if he suspected AN and he said that odds were against it.

He had me go to have an Open MRI and prescribed valium. I was able to handle an open MRI fine - no closed in feeling.

Then when it came time for the Gamma Knife, part of that is to have another MRI which they need to do the planning, I went for an appointment with the Radiation Oncologist they had me try their MRI machine - which was a larger bore machine. They had me go in a couple of times as a test and I didn't feel as bad as the regular MRI but certainly felt more anxiety than the Open MRI.

But they worked with me. The nurse who is the manager of the Gamma Knife center said that she would talk to the neurosurgeon  and be my 'advocate'. They were able to have me go to another location in the hospital system where they have a Short bore MRI machine which also has a larger opening and you only go in about up to your elbows. The radiologist there was an angel. She talked with me while she was getting me situated and injecting the contrasting agent that I felt very relaxed. She then placed a wash cloth over my eyes and I had no panic at all. Note - I did have valium again.

I am sure that if you ask, they will work with you to make sure you are comfortable. If not, find someone who will,

Good luck and go ahead and get the MRI. There are options and keep after the ones that make you comfortable.

Title: Re: Pre - AN Diagnosed Stage
Post by: rupert on May 04, 2014, 08:29:16 pm

All you have to do is talk with the fine people at the imaging center and explain your problem.  They deal with these issues everyday and know exactly how to deal with them and still get the job done.   MRI's are a whole lot safer than a CT scan. I hope it's not an AN causing your issues but, if it is you will have many MRI's to come.