Author Topic: Trying to keep my faith....and sanity!  (Read 2031 times)


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Trying to keep my faith....and sanity!
« on: September 08, 2018, 04:43:33 pm »
Hello. I do not have a confirmed diagnosis of AN, but it appears to be AN.
I had septoplasty surgery in August of 2017. Since then I have had what I thought were complications from the surgery. I had several visits to the ER, my PCP, and my ENT. I had no relief with antibiotics and minimal relief with steroids. Finally, in July 2018, my ENT gave me an order for a CT of my sinuses. My CT was negative, showed clear sinuses and ear canals, and the only abnormality was a dental cyst measuring 12mm. My ENT stated the dental cyst was not related, and gave me an order for a series of tests with an audiologist. I did the tests in August 2018. The ECog and ABR showed abnormalities in my right ear, so I was given an order for a MRI. The MRI is scheduled for 9-13-18.
My symptoms are: severe facial pain with occasional numbness around mouth, intense sinus pressure, feeling like I have a wax build up/blockage in rt ear (no wax build noted by docs), dizziness, nausea secondary to dizziness, all of my cervical glands are swollen, heightened sensitivity to sound, heightened sensitivity of immune system (skin rashes, itchiness), clumsiness, random bouts with trouble breathing without doing strenuous activities, fatigue, generalized weakness, confusion at times (ex: losing track of what I was doing or trouble gathering my thoughts), rt side neck pain, rt side facial swelling that comes and goes, vision changes, jaw pain, pain and pressure around teeth, and feeling as if everything around me is surreal. I am 37 years young and in great health.
I only came across AN because it is written on my MRI order as the diagnosis. No "r/o", just Acoustic Neuroma. After looking online for info, I can't help but freak out because the majority of my symptoms fit the criteria for a large tumor.
So I guess my question is did anyone have similar symptoms? Did you also fail those ear function tests? If you had those symptoms, what was the size of your AN?
My hubby thinks I am doing the worst case scenario, but as crazy as it sounds, I can kind of feel a tumors presence now that I know it's a possibility. It makes sense as to why I am having these symptoms. There isn't much on this topic outside of what it is and treatment options. I couldn't find much research on these tests in regards of what else could cause abnormalities outside of hearing loss.
Also, if you had facial and neck pain, what relieved the pain?
Any insight would be helpful and greatly appreciated. Thank you.


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Re: Trying to keep my faith....and sanity!
« Reply #1 on: September 09, 2018, 09:24:16 am »
I understand your anxiety regarding the possibility of having an acoustic neuroma, but as the old saying goes, “ don’t borrow trouble” just yet. If you had a large AN it is likely your CT scan would have shown that. It is the smaller ones that don’t show up on a CT scan. In addition, it is likely your doctor noted AN on your MRI request because that instructs them regarding what to look for or so that your insurance will cover it. MRIs are expensive and insurance companies sometimes balk at covering them, but would realize that an MRI is necessary to diagnose an AN. Finally, while some of your symptoms are consistent with having an AN, some of them are not. Skin rashes and swollen glands would seem to be associated with something else and are not typical of an AN. Many of your symptoms could also be explained by sinusitis, which often affects the ears and causes dizziness. By the way, chronic sinus inflammation  can be detected on an MRI because that was noted on my MRI report, even though I have no symptoms of it.  So try to calm down, as anxiety makes everything so much worse, and wait for the MRI results.