Hello,

I am a 42 y.o. female new to the board. I am kind of getting no where with my search for what is wrong, and am kind of trying to figure out what to do next.

I have a primary brain tumor on my brain stem, which was dxed in 2005. Has showed no real growth, and as it is inoperable and unable to be biopsied, I am on a watch and wait plan and have very frequent MRI's.

A few months ago I began to have some discomfort in the area of where I had a root canaled and capped molar. I went to the dentist and they felt it should be pulled. I had it extracted in August. I had been having some facial pain and numbness, and after the tooth got pulled it did not subside. I went back to the oral surgeon and to the general dentist, and both said the site looked great and nothing wrong with nearby teeth.

Since then my bite is off, my gums in the area are very soreand swollen, my lymph nodes are swollen, I am very congested (never was before) and my upper teeth around where the one was taken out are numb, and I feel like crap. Neck and shoulder pain as well. I went to the ENT and they they did a CT scan of my sinuses, which came back fine, and my sinused looked fine in an MRI taken in the ER in late August as well.

Now I can actually feel a small bump on my gum all the way in back above my last molar, face still numb and teeth sensitive to numb in the area. Gums are swollen and hurt. I went back to the dentist 3 days ago and he cleaned the area around the back gum and shot it full of antibiotics and gave me some more (I have taken about 5 courses in the last 4 months before and after pulling the tooth).

I do not know who to go to anymore. My dental ins. is crap, it is just a maintenance program, and they already told me to just go to UCLA or USC, and I am not sure who to contact there or how to. I have no ins. for that. I do have a Blue Shield PPO for medical. Should I just go to another ENT? I am at a loss and so uncomfortable I cannot work very well (I am a teacher of 4 and 5 year olds).

Whenever I had a weird issue in my head I used to pass it off on my tumor, but I know this is not related to that at all. I am concerned for oral cancer as some symtoms seem to point that way, but I don't know of course. I was a 20 year smoker, but quit 5 years ago. Other than the brain tumor I am very healthy, and fairly fit.

What should I do now??? I have so much mouth pain that Vicodin does not work, and no one seems to care!!!!!!!

Thanks in advance for any help. I am in L.A.

xo,

Michelle

Michelle, welcome to OCF. You have come to the right place for help with oral cancer. Only thru a biopsy would you know for sure if its oral cancer. A second opinion is always a smart idea. I would suggest an ENT from what you described. If you are is severe pain ask for some stronger meds, nobody should have to hurt. Hope I was able to help a little. Im also hoping that you dont have oral cancer.

Thank you so much for your reply.

Will an ENT still do a biopsy on my gum area? I am so used to drs. saying it is a dental issue. Dentist says it is a medical one at this point.

After my brain tumor Dx (initially I was given a very poor prognosis, but every time my scan shows no change I am more optimistic, what I have is called a tectal glioma, and usually shunt placement for hydrocephulus is done, but so far I have not needed it) I feel I can deal with anything, but this is more painful than I feel I can stand.

Are gums a usual primary site for oral cancer? Does anyone know if any dentists or dental specialists ever take a medical PPO?? I had an HMO until recently, but my job switched me to a Blue Shield PPO so I do not have to wait for referrals all the time.

I see Christine that you have been through quite an awful ordeal, may you get some relief soon.

Thank you again for your response.

Michelle,

Does your plan cover Cedars-Sinai? If it is a cancer, then it would be a medical issue, not a dental one and would be/should be covered by your insurance. I really liked the care I received at Cedars, not for oral cancer, but they have an excellent Cancer Center there.

- Margaret

I am not sure yet who all takes my insurance, but I am pretty sure that many do take Blue Shield. I know they briefly lost their contract with UCLA (that is where my neuro-surgeon was) but it was restored.

If anyone knows an ENT in the L.A. area that they could recommend I would be most appreciative. The one connected with my HMO barely gave me a glance, and ordered the CT scan of my sinuses. When it came back clean he brushed me off. I did not at that time feel the bump on my gums.

The facial pain and mouth pain I have is excruciating and I would wish it on no one.

I will check out Cedars, I know a physician's assistant who works there, one of my students' parents.

Hi MichelleRenee and welcome to OCF. Congrats on quitting smoking..that is wonderful. I agree with Christine, I would make an appointment with an ENT. As far as insurance is concerned I would call you medical and see what they say. All of my treatment for OC has been covered through medical. Even if you call the ENT's office they should be able to answer those questions also.

Mouth pain is some of the worst pain and you have found a good group of people to help you. Sometimes you have to be persistant so don't give up until you find someone to help you.

Let us know how you are doing.

One more thought....is your ins through your employer? Do they have open enrollment around now, that you can change your medical plan? Do they offer other ins?

I just changed from an HMO to a PPO, bless my employers, my plan is twice the cost (nearly $800/month and my share of cost is only $50) because they have hated to see me deal with the HMO regarding my brain tumor.

I will look into an ENT on the net tonight, I am sure many do take my insurance, and my work has also given me a medical fund as a bonus to draw from until I reach my deductable.

I will not give up, trust me!! It took me about 5 months to get my primary to give me a neuro referral before they found my brain tumor. I hated my HMO and I know my doctor only was going through the protocol. Delay and deny. I am all to familiar with it.

I quit smoking after witnessing the long and awful death of lung to brain cancer of my mother-in-law. Quit cold turkey. And boy, I LOVED smoking.

Thank you for responding. I am trying to figure out how I am going to work from 8am to 10pm tomorrow. First 8 hours teaching kids, and then teaching a college class from 7-10pm!!!!

I took a look at my provider page and it seems I can go to any ENT at UCLA or Cedars, so I will call tomorrow. I am just wondering how long it will take to get an appointment!!!!!

So happy to hear you don't have to deal with an HMO...that is a blessing. And to only pay $50 is great!! Sounds like your ins is a good one so that should make things a little easier for you.

Let us know how you do getting an appointment:)

Wow....that is a long day!!! Good luck

Welcome MichelleRenee,

My husband goes to UCLA Head and Neck Dept. for his checkups. UCLA is a very good CCC so you can't go wrong if you decide to go there. You shouldn't have a problem getting an appointment quickly. Keep us updated OK?

Take care,

Shelley