About 1 year ago I started having pain and hearing problems in the left ear. It felt a bit like swimmers ear so, I set up an appointment with my HMO Primary Care Physician - PCP (took 3 weeks to get in to see.) At the exam Dr did not see an infection and gave me a hearing test that verified that I had lost about 50% of my hearing in my left ear. I was set up with an appointment with an ENT (took about 8 weeks to see.)
About a week before the appointment came up with the ENT the pain stopped and the hearing came back. The hearing test showed that I have lost about 10% of my hearing in my left ear. ENT did find nasal plops and prescribed nasal steroids. I was told to call if the pain and hearing problem came back.
About 10 days after my appointment the hearing loss came back and the pain was greater than before. I called and got back to see the same ENT a week later. A hearing test showed that I had a great deal of hearing loss in the left ear. ENT did not know what could be the cause. He set me up with an MRI test two weeks later and prescribed a 10 high (60mg) dosage of a steroid as he felt that it may be an auto-immune issue attacking the ear nerve.
It was a very hard 10 days during which the pain increased greatly to involve not only the ear by also very sharp pain and some swelling behind the left jaw radiating pain and a numb feeling into the neck and face. The pain got quite bad and I called the ENT office and get in to see the doctor who was not able to find anything new. I asked about the potential that it is an infection and he said there was no chance that it was that due to no fluid back up in the ear nor a high white blood count and, to wait to see what the MRI showed. I set up a follow up appointment about 4 week later.
The MRI test came back a couple days later with nothing found. The ENT didn’t find anything or prescribe anything for the pain and sent me on my way with “I’m sorry, you are losing your hearing and there is nothing we can do about it.” This Dr did not have the best of bedside manner, greatly eroding my confidence in him.
A few days later the pain became very scary so I went to my local Urgent Care. They felt that I was an infection and prescribed Amoxicillin. Over the 14 day course the pain ended and the hearing came back.
A week later the pain started to come back in my ear, jaw and neck. One night the pain in my jaw became extreme and involved also my left arm along with rapid heartbeats and pain in the chest. So, not knowing what was going on I went to the ER thinking maybe this was something with my heart. Fortunately tests showed no heart problem but did have a high heart beat and high blood pressure (which I have not had before.) I explained the pain in my neck and behind the left ear to the ER doctor who then diagnosed the issue as neuropathy and directed me to see my PCP to get to a neurologist.
My PCP started me on Gabapentin for the pain and set me up with an appointment to see the neurologist. And also advised me to check with my dentist to make sure it was not a tooth issue. My Dentist did not find anything but a reduction in saliva coming from my left salivary gland. He asked me to see an Oral surgeon to check to make sure I was not having problems with that. He found nothing
In the meantime I was going though testing by the neurologist. Just about every test possible was done over a four month period including another MRI of my full neck and a Lumbar Puncture. No problems was found.
The pain continued in my ear, jaw, and neck this entire time. I also had some bad side effects from the Gabapentin. The experience which is a whole another story I will not tell here.
I asked my PCP set me up to see a different ENT to get a second set of eyes on the problem. That is Dr KO at Henry Ford Hospital downtown Detroit. He ran hearing test and looked me over and said that maybe this is just TMJ but, he mentioned that there was some cross symptoms that I was having that could point to a rare occurrence being a calcification of the Styloid ligament. That it would take a CT with an injection of die solution to see, did I want to do that? Having gone through the ringer and been in pain for over last 8 months now, I said let’s do it.
I had the CT done at Henry Ford West Bloomfield. It came back with the report of significant ossification of the right and left styloid ligament. Also that there was no mass effect on adjacent structures. I had a conversation with Dr. Ko about it who prescribed some pain meds and set up follow up visit with him 2 weeks later.
In the visit he explained what the surgery would involve for this problem in detail, showed me my CT and talked about Eagle’s syndrome. At the end of his discussion he said that he felt that it was not a good idea that we go for a surgery just yet. He discussed this with his colleagues there at Henry Ford and his feeling is that we should watch this and manage the pain for a year and see if it gets worse or better. He referred me to the Pain Clinic with the instructions that If things get worst to contact him and if so, we would see what to do from there.
I had an appointment with the pain clinic 3 weeks ago and with the lead doctor and his intern. He explained that a very small percentage (about 4%) of the people that have the calcified ligament actually have trouble with it. The symptoms I have is also potentially trigeminal neuralgia. He prescribed Lyrica for the pain which, the insurance company has denied to cover as being just like Gabapentin that I had so much trouble with. So, back to the pain clinic again after Thanksgiving to see what else they can do.
It’s a long story and thank you if you made it all the way through. Right now my PCP has me taking Tramadol which seems to be doing the job of pain reduction fairly well. This month work had our new year’s sign up for insurance coverage. I’m boosting it to the higher level so that I have more options of doctors or facilities to see. My current only allows me to use only one health system and with this issue now I really need to have more flexibility.