Hello. It's been a bit since I was here last. I've had several appointments and all that has come out of it is that I need more tests. At first, my right side of my face hurt. I have slight swelling by my lips on the right side. I have swelling near my ear down my jaw joint and below my jaw and into my neck, just on the right side. My inner ear is so painful. Every tooth in my mouth is screaming. My jaw bone itself is very painful. I also am having tmj on the right side. Initially, my primary doctor sent me to ER. I was in so much pain, but only had blood drawn for infection and checking for amylase levels for stones. No other tests and the PA only poked my face twice. He said I could have shingles and sent me home with Vicodin and Naproxen. I went the next day to walk-in where they promptly said that they wouldn't look at me because they felt the ER dropped the ball and they didn't want to accept any malpractice that could be involved. I saw my Primary the next day and he referred me to an ENT. My new ENT is awesome and doesn't think I have shingles, no tmj because it is just a symptom of the parotid not the cause of the pain. He ordered a hearing test because I am having issues where I don't hear well and then at times everything is so loud. I am also going for an ultrasound to look at parotid. Then, I will have my first meeting with my pain management doctor since I was dx with neuralgia on the right side and it is a long term problem that will need to be managed with meds. He is concerned that my parotid is large and all the glands are hard on that side. He doesn't think that I have a stone or infection.
I'm worried because it seems that the only things left are not good things to have. That's my update. I am currently on Tramadol and cyclobenzaprine a muscle relaxant. They aren't working well anymore. I have been doing wet hot heat, heating pad, crying, imagining techniques, etc. Nothing is cutting it. At times it gets so bad that I sob and rock and want to claw at my jaw and make it stop. I've not experienced such awful pain before and I don't know what to do. I feel helpless.
I would appreciate it if anyone could weigh in with advice and first hand knowledge. Thanks for listening.
Persephone
I've had the neuralgia before.. it is horrible!!! I got back on Cortef and it went away. Have you been given steroids to see if it would help?
HUGS!!!!!
Hi,
My sympathies on your pain. I have had shingles myself (but only skin involvement, in scalp) and know that it is miserable. Getting that kind of pain in a bone would put the pain scale readings up to a 10.
I noticed that you did not mention seeing a dentist. It is possible that you have something (like a cracked root) that kicked the pain off in the beginning, and has now allowed an infection to set in. That infection could be spreading through your jaw bone, causing the pain to spread. While bone infections are hard to treat, they do eventually respond to the appropriate antibiotics. I would see a good dentist, and get a full set of Xrays to look for cracked roots, cavities near the gum line, peridontitis (inflammation of the gums starting from the gum line, that can spread throughout the gums and even into bone) or any other dental problems.
There is one other simple explanation that has a simple solution. If you are unconsciously grinding your teeth during sleep, that can lead to TMJ problems, tooth and tooth root pain, and eventually to inflammatory reactions that will lead to the kind of swelling that you are experiencing. A good dentist can also check for this, as it leaves characteristic wear patterns on the grinding surfaces of the teeth. The solution is a mouth guard that you wear in your sleep. A $2 thermoplastic mouth guard such as most football players use can work. A dentist will try to sell you on a more expensive one that is hard plastic, and involves making molds or your mouth. This type runs for from about $200 up to $1000, depending on the expertise of the dentist involved. This type has some advantages, including that it will reduce or eliminate TMJ pain, and can pull your jaw forward to reduce obstructive apnea, should you have that problem also. Both types are susceptible to being eaten by dogs, if that is a consideration. Also, some people spit them out at night and they get lost in the bedclothes. They are easier to find if they are brightly colored; Walmart sells black athletic ones that work well for my wife and keep them away from our dog pack.
Shingles tends to manifest in one nerve at a time, and in all areas that involve that nerve. If the original problem was shingles, it would have had to be one that innervates the inside of your mouth, and would have been limited to one side. If it is shingles, standard treatment is antivirals (e.g. valcyclovir). Had you been treated at the first ER visit, it would not have spread to the other side of your mouth.
If your parotid glands are involved, there is the possibility of mumps. Mumps in adults is serious (more so in males) and should have been checked for and treated immediately. Again, this is treated with antivirals.
The symptoms all seem to be related to inflammation. If an infection or dental problem is not found, I would think the next step is to try a steroid. I don't know if there are oral topical formulations available - the ENT should know. Topical would be better than systemic, as there are side effects of systemic steroids that include long-term changes in skin that can make getting stitches problematic.
I wish you the best of luck.
Jerry
Sorry that I was not more clear...I'd blame the drugs, but I was scatter brained before this! I am seeing my dentist tomorrow. I got an appointment because the ENT dr said I needed to see if there were any teeth issues that were adding to the problem. While I could have some underlining tooth or gum issue, he doesn't believe that is the whole picture. I could have tmj, but again, it is a symptom of the bigger problem. I also forgot to add that my right side of my face from bottom eye lid to under chin is numblike. At times, it is so tingly and the corner of my mouth drops. Also during that time, swelling is worse and makes my top lip stick out. Since the beginning of my diagnosis in Nov 2012, I have had very firm nodes under chin and then some in the deep cervical region. The ones under my chin and jaw have gotten slightly bigger with this issue.
Hope that add on will help clear my explanation up.
Persephone
Hi
Is it possible it is trigeminal neuralgia? Have they tried steroids? I had that and one side of my face was numb, tingly and PAINFUL. Was awful. I am sorry your going through all this. Sending prayers so hold on tight... Hugs,
Gayle
I have a similar problem although my pain is not as severe as yours. The worse part is putting a phone up by my ear and a too hard of pillow when lying down.
My left parotid area was swollen, had left side neck discomfort, ear felt full,then noticed a lump in front of my left ear.
CT showed parotid OK but have 2 enlarged lymph nodes...why is not known. So, I am having surgery to remove the largest one. My ENT said they could be enlarged for "many reasons or no reasons". They are fickle it seems.
I feel bad that your having such awful pain. My grandmother use to have trigeminal neuralgia and I still remember her holding her face and crying....but she got treatment for it and did well.
Glad you like your ENT.
eye2dry
Still wondering about the steroids....?
Fun fun and more fun. Thank you all for responding. I have new news...I went to my ENT again today. I have a constant pressure type migraine and pain and pressure going down my neck on same side. My ENT is trying to get me into a pain management clinic. There are therapies such a nerve stimulation and massage, etc that may help. Trying to get into him is a whole 'nother crazy in itself. First, your records are sent to the clinic, they are reviewed by all doctors at the clinic. Then, they discuss your case and then take a vote. I was always one of the last kids get picked for teams in PE. I am hoping to have better luck now.
While I am waiting to get approved, my ENT suggested going to a chiropractor, doing acupuncture, etc. All in all, my appointment did nothing to help my current problem. He gave me a prescription for refills on Tramadol and Cytobezaprine so it wasn't a total loss. I have my hearing test tomorrow and I hope that will bring some answers.
I was a little pissed when I learned that the ENT office hadn't scheduled my ultrasound until this morning. It's no skin off their back if I have to wait a week for it. After all, they aren't the ones in pain. I remained calm until I got outside and then had to work thru feelings of 'why did I bother getting up early and driving an hour for this?'
Later on this afternoon, I went to my dentist. He also can do the same things the chiropractor can do and do it cheaper. He was very concerned about my situation, particularly saying that I needed a ct scan and more help than he could do. I have obvious decay and cavities but no infection, abscesses or cracked teeth. None of the cavities or decay was the cause of all of this. He was confident that it is my parotid and sub-mandibular glands and lymph nodes pressing on nerves causing severe trigeminal neuralgia. He is sending me to my oral surgeon because he wanted to try and get me a ct scan. My dentist didn't want to do any dental work, massage therapy, mouth guard for symptomatic tmj, etc. Some potential problems could worsen when a some types of therapy are used. The more and more he talked, the more concerned I got. It seemed obvious to him that not enough had been done and not quick enough. It really made me feel like I was a moron for not pushing doctors when I felt like they weren't doing all they could.
The last piece of news....on xray, my glands were oddly shaped, way bigger than normal and the sub-mandibular gland has a tail growing around the back of my jaw. All in all, I got more stressed out than helped.
So, that's all the crazy I know. Thanks for listening.
Persephone
Hi there. I am sorry to hear u r going through all this! I had similar issues last year.
The right side of my face was in unbelieveable agony. I thought I had a dental abscess or gum disease. That was ruled out. Then the dentist thought it was a neuralgia. Then they said Tmj.
Next thing I knew I had a swollen gland under my jaw. It took an Ent to tell me I had an inflammed submandibular gland. It was eventually removed. Months later..all that discomfort was gone! Not saying this is what u have but sounds like they are on the right track. I hope u get some relief soon!
A couple other thoughts..who read xray? Chiro or Ent?
And...not sure if it is this way in each state, but in mine..tmj is considered medical so I got my nightguard paid for by my health insurance. I know u may not have that but just fyi. No one tells these things so thought I would share.
So sorry to hear that you are in such pain. The worst pain for me was when I had right occipital neuralgia (my head and neck). Nothing would stop the pain and I couldn't sleep.....I had to sit up all night. I tried ice and everything else available but finally a D.O. diagnosed me, did some minor adjustments and put me on Voltaren for at least 3 months. I also went through physical therapy of my neck and shoulders and that helped quite a bit. IT was a long haul and so frightening.....there is nothing worse than nerve pain.....I wonder now if the inflammation that was trapping the nerves was from my Sjogrens. I'd like to once get a clear cut answer from doctors as to what has caused my pain other than "it's all in my mind"!!!!!