Help me find a doctor who will remove a cyst
September 10, 2017 7:18 AM   Subscribe

Where can I find a doctor (otolaryngology, dentist, neck or oral surgeon) who is willing to remove a painful but probably otherwise benign cyst that is in my throat or lower jaw or ear region (not sure exactly where it is located, but somewhere around there). I am a female who has seen countless doctors about the pain and discomfort and they all ignore my complaints and send me away without treating me. I live in Ohio. I want this cyst removed, either by surgery or if it's possible to lance it or dissolve it with drugs... it's driving me crazy and causes me earaches, neck and jaw pain.

So far I've seen several ENT and otolaryngologists, a swallow specialist, audiologists (it hasn't technically caused deafness but at times I hear fluttering or partial blockage), gastroenterologist, allergist, dentists, oral surgeons, even a thyroid/endocrinology person, and somehow in modern US healthcare it's acceptable to just ignore a patient's complaints and send them away without treatment. I have an MRI showing the cyst, but the doctors in my insurance plan seem willing to do nothing. So, I'm asking Metafilter if anyone knows a competent and effective doctor who will treat me and remove it, and I can possibly deal with my insurance and doctors for potential insurance reimbursement later.

However, for now I would really just like a doctor who can and will remove this internal neck/throat or possibly ear/jaw cyst (I imagine the cyst is what is causing my ear/throat symptoms).

Can anyone recommend a good doctor in Northeast Ohio? Or not further South than mid-Ohio. Please don't recommend a generic health system or hospital, I am looking for a doctor who will perform and rid me of this cyst. Even if it's non life threatening, it is uncomfortable enough that I want it gone. Thanks.
posted by anonymous to Health & Fitness (6 answers total) 3 users marked this as a favorite
I had a cyst-like thing in my ear and had to have it removed by a neurotologist. It was difficult to find one who would accept my insurance. I had to do a lot of work phoning the insurance company and doctors before I finally found one 90 miles away. Sometimes I talked to people who were so-called professionals but couldn't help me. But I did finally find people who did try to help me. So, keep trying and ask to talk to a person's supervisor if you feel someone's apathetic. First thing I'd do is obtain your medical records. You want to see exactly what type specialist is needed. Second, look on your insurance web site to see which of these specialists will take your insurance and are accepting new patients. Also to know, if no one is your area accepts your insurance and you need a certain specialist, insurance companies are required to give you info for a special allowance to be made so they can cover it (forgot what this clause is called). I don't know Ohio at all but I do know that with what you have not just any primary care physician will help you. You'll need a specialist. There were times I wanted to cry and give up during my process trying to get medical care, but I urge you not to give up! Lean on your friends when you get too fed up with "the system".
posted by DixieBaby at 9:07 AM on September 10, 2017

Are they saying they won't do the surgery, or that it's not covered by your insurance?
posted by corb at 9:51 AM on September 10, 2017 [1 favorite]

I have something like this and I get treated by a head and neck oncologist. He's done one tricky surgery on lymph nodes in my neck and monitors me for other ones. Maybe the Cleveland Clinic?
posted by yes I said yes I will Yes at 10:31 AM on September 10, 2017

I think for something in your neck/ear area you may need a really excellent head and neck surgeon. They are not thick on the ground because they are some of the most specialized surgeons there are. This area of the body is packed with delicate structures, nerves, veins and arteries and is extremely challenging for surgeons. The Cleveland Clinic would be a good choice, and I don't think it's likely to even find a head and neck surgeon outside of an academic medical center, nor would I consider having surgery anywhere else.

Agree that you should take all scans/xrays and whatever else you have already had with you, and sometimes the surgeon will want to review them before meeting with you. A referral from a doctor you trust would probably help, especially if your trusted doctor emphasizes how many specialists you've gone to in your quest for a solution. Make sure you get the scans themselves, usually on disc, not just the reports, but your new provider may need new ones done to make sure they haven't grown or changed. I would check with your insurer to see what head and neck surgeon is in their system and start there for simplicity, and there might even be a website where specialists are listed. They do work closely with oncologists because of head and neck cancers, but not always. There are many non-cancerous conditions that are addressed by surgery. Keep in mind that if this cyst, or whatever it is, is in a really delicate place, even an excellent surgeon might hesitate to perform surgery because of the risks because of disturbing other structures the neck. This is a conversation you and the surgeon should have. I wish you luck!
posted by citygirl at 2:20 PM on September 10, 2017 [4 favorites]

I'm a doctor.

1) Consider starting with your family physician

Family physicians can diagnose and treat most skin disorders.

Diagnosis can usually be made on the basis of history and clinical examination. When these diagnostic tools are insufficient, advanced imaging and fine needle aspiration, followed by excision biopsy, are used. These require technology generally found only in hospitals, as well the expertise of a radiologist and pathologist. Referrals will be made on your behalf.

Treatment by family physicians generally encompasses a range of first- and second-line interventions. For benign epidermoid cysts (that's the medical term for the lesions you say you have), the treatment of choice is excision, generally done in-office by the family physician herself.

Starting with a family physician is a very good idea. Another option is to start with a specialist

2) Behold the dermatologist

Succinctly: dermatologists know everything about diagnosing and treating skin problems. If you want to hit the ground running, if you want the best medical advice and immediate answers and solutions, see a dermatologist ASAP. End of.
posted by BadgerDoctor at 4:34 PM on September 10, 2017 [2 favorites]

I had an apocrine cystadenoma removed from my jawline 6 months ago. It took: a GP; a derm who attempted to remove the thing unsuccessfully and sewed my face back shut in an outpatient situation; a plastic surgeon who turned me down flat, and finally an ENT. As BadgerDoctor says, I had advanced imaging and fine needle aspiration done prior to surgery.

I had to keep pushing for referrals and treatment because my issue was considered benign, even though it was large enough to disfigure my face at the end. Be persistent and I wish you good hunting.
posted by Deodand at 7:16 PM on September 10, 2017 [1 favorite]

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