I added a picture of an MRI that shows the cyst (this MRI was two years ago).
I really want to know if a Tornwalt cyst can be on one side. Everything I've read says it is midline; mine is on the left side.
A little more info:
I also have facial numbness (worse on left side) which is spreading to the back (skull area). Doctors tell me it is too small to cause symptoms.
ENT did extensive tests that prove something is causing tinnitus/hearing problems. My left side hearing is "far worse than right", abnormal BAER study and left side conduction (but I have hypersensitive hearing since onset). I've had 2 EEGs and the last one was "slow". Sometimes I can hear a heartbeat sound in my left ear.
Could this "cyst" be interferring with the 8th cranial nerve? My ears ring louder than usual and change pitch before my headache worsens (a warning sign for me).
Although the pain is worse on the left side, my vision is worse/blurry on the right side (neurologist said that was "interesting").
I have occasional kidney pain and was told "possible kidney stones". Sometimes there is blood in the urine (protein a few times).
I have had no diagnosis confirmed by second opinion (4 neuros with 4 different answers). They say nothing that explains everything; any help/direction is sincerely appreciated.
If I were you I would ask to see a Cancer Oncologist. Have they done the camera up the nasal passage? To me it sounds like this cyst is blocking your ear canal which causes the tinitus in that ear. Myself I was constantly stuffed on the right nostril. My right ear was always plugged , and bad tinitus. I was dizzy, unbalanced, and had bad Sinus pain in the right side. Keep me posted. I had to push to push to get a proper diagnosis.
How big is your mass? I just found a mass on an mri in the sphenoid sinus it is a little over 20mm and shape very funny doc said interesting it was very vascular. Did not know what it was gona have people look at it. I may try to post a picture of it too.
Mine was the size of a Post it Note. 3" x 2" quite large. It was moving itself downward through my upper pallet, and heading right toward my right artery near my ear and was very close to wrapping itself around it. They showed me in the CT Scan. Quite scary.
I have no pic, due to my lawyer having all medical records. If you can post a pic I'll let you know if its similar to mine. Good luck, and I'm praying for you.
Thanks for the reply. It stinks that anyone else shares this type of unrelenting pain. Not many people believe me when I say I've had a headache for 4 1/2 years. Early on, I had one doctor say it was "all in my head"... yeah, the pain hadn't yet spread throughout my entire body. At least we know we're not alone... though I wouldn't wish this on anyone.
Yes, an ENT did the nasal camera. He said it was visible on the left side but I couldn't see the TV. My friend could see a buldge; I think she said it was white. But the doc said it is too small to cause any symptoms (about 11 mm - shaped like a kidney bean). Beau, yours must have filled the nasopharynx area completely. Looking back, did you have minor headache/symptoms before it got bad?
I know something is causing the symptoms and the left side is worse; ear pain/tinnitus, hearing, numbness and headache are worse on my left side (cyst is left side). I also have balance problems and I usually fall to the left. My left ear feels full and I snore so loud sometimes that I wake myself. One ENT ran a bunch of tests and said they match up with the tinnitus... like there truly is physical explanation. I agree that it is blocking or touching the ear nerve. I had a BAER study (like an EEG of the ear nerve) and it was abnormal [slow] on the left side. I feel a lump in my throat and sometimes I wake up gasping for air like my throat closed up or collasped (yes, left side). It is scary and a little freaky; I cough like mad. Doctors say they can't feel the lump and I'm just feeling my carotid artery... I hope my carotid artery isn't this hard thing I feel... that could be bad! Heck, I'd probably be dead. But I can see something on the MRI in the area (the last few frames of the MRI... I'm no radiologist but I can see something that isn't on the right side. I think they focus on the brain too much (I have lesions there). What is odd Beau, is that your was next to your carotid artery... that is just how mine feels.
About 6-8 months after the headaches started I started having other issues. I also have limb and joint pain which involves every joint but again, it is much worse on left the past 3 years. What concerns me is, if a cyst can't cause these symptoms, maybe it isn't a cyst. I don't know how they can be sure what it is w/o a biopsy. Maybe I should ask about an ENT Oncologist (my neurologist suspected paraneoplastic syndrome which is caused by cancer). Now I have a hard lump on the bottom of my foot... doc says it's a fibroma.
Have either of you experienced pain other than the head? I just don't know how it could not be related.
My mri report says it's a Tornwalt cyst. Everything I've read says they are midline but mine isn't. I am disgusted with doctors... each one seems so certain about their diagnosis... MS, fibro, CFS, chronic pain syndrome, encephalitis and meningitis. They can't all be right cause they all think the other is wrong. Regardless, I will keep searching til I solve this thing.
3yearsinpain, Try to post a picture if you can. I couldn't save a picture from the disc so I took a pic of my monitor with my digital camera. What kind of shape? What does your doctor recommend?
I wish you both the best of luck, health and friend/family support. Keep me posted!
The mri picture I posted was from MRI taken 2 years ago.
I did have bad sinus headaches before.This is suppose to be an expert forum. I am wondering why the doctors who are suppose to be answering the questions have not written anything? I look at all the questions and there are no answers from those doctors. Stay tough and don't give up. My thoughts and prayers are with you.
Yes, where are the experts? My question is simple:
Can a Thornwaldt cyst be on one side? Could it be something else?
Ron, After reading your experience, I suppose it could be something else.
My PCP won't refer me to another ENT. He said I had the workup with this one and I need to stick with him. At least the ENT said he will do the surgery. He said we'll know if it's causing a problem if we remove it. I guess I can't argue with that. He is the third ENT I've seen so maybe this third time was the charm. How did the other two ENTs and 3 neurologists miss it? Amazing!
I will ask him about any other possibility before any surgery. And I will make him review all my MRIs because the one he saw doesn't show the area in my throat.
Have you gotten any news about your recurrent symptoms? I sure hope it's good news. It sounds like you've had a horrible time from trying to get rid of the NHL. Stay positive, stay strong. I really appreciate your support.