Stumped Doctors (for a second time)

For 5 years I had this horrible pain in my right ear. I went to several different doctors, including 2 different ENTs. I was told that I had chronic otitis externa or swimmer's ear. I was prescribed antibiotics and prednisone. It would get better for a couple of weeks then it would be back again. After a couple of years of this, I started experiencing right sided headaches and tiredness. After 4 years the ear canal began closing. I had 4 different doctors do an ear wick which caused the most extreme pain you can imagine, so I had them removed. After 5 years, I got yet another doctor who ordered a CAT scan which showed inflammation in the right ear canal. He referred me to yet another ENT. He too did a wick, but this time giving me morphine for the pain for the duration of the wick. (the morphine cut the sharpness of the pain, but did not control it) After a week of the ear wick, the ENT removed it, and asked that I come back after 2 weeks. I did, and after two weeks the ear canal was again closed. At this time he opted to do a biopsy. It came back as Adenoid Cystic Carcinoma.

In August 2007, I had an MRI which confirmed the Adenoid Cystic Carcinoma in the right ear canal as well as in the right parotid gland and some lymph nodes. That same month I underwent a 12 hour surgery. They did a temporal bone resection, removed my right ear canal and eustacean tube, several lymph nodes and my right parotid gland. During surgery there was a CSF leakage which they quickly repaired. They got clean margins everywhere but the dura. They decided not to go any further and allow radiation to remove the rest of the cancer.

I got the maximum amout of radiation, 5 days a week over 8 weeks. During radiation, my right ear became necrotic and a hole formed where the ear canal used to be. They assured me that the benefits outweighed the cost and finished the radiation. Eventually my right ear fell off. I finished radiation on November 1, 2007.

I still have an open wound to my right ear, which has never healed. The pain to the right side of my head is far worse than it was during the 5 years before the diagnosis and I have horrible nausea and vomiting. I am on a cocktail of medications to try to control the pain and nausea and vomiting, but they don't work well enough to allow me to have any real quality of life.

Since the completion of the radiation, I have had:
2 MRIs-both negative
CAT scan of the abdomen - cyst on the right ovary
2 CBCs and Chem 7 - both WNL
Complete White Blood Cell Scan - Normal

I am following up with my radiologist who assures me that my symptoms are not radiation related. My oncologist thinks it is radiation related, and my primary has no idea.

Current Meds:
Duragesic patch 75mcg/hr
Lorcet 10/650 - 1-2q4h prn
Lyrica 75mg Bid
Zofran 8mg Bid
Reglan 10mg QID
Phenegren Supp 25mg prn
Zoloft 100mg QD

Could all this pain and nausea and vomiting be radiation related? If so, is there anything in the literature explaining how long this will last (it's been almost a year already)?

Most of all... where can I go for help? Is there anything that could increase my quality of life.

[DrNoopurMD]

Hi,

How are you?
It is quite possible that the side effects that you are experiencing right now like headache and nausea and vomiting are due to side effects of radiotherapy.

Radiation therapy to the brain for prolonged periods can affect brain function and can cause nausea and headaches. Take care!

[Mobraco]

Thank you Dr. Noopur for your help. I am still doing the same. Can the radiation I recieved cause pain, nausea and vomiting permanently? As I said before, I'm coming up on my year anniversary of finishing radiation, and we keep having to increase my meds rather than decrease them.

I really appreciate your input on this.

[DrNoopurMD]

Hi,

The effects of radiation induced nausea and vomiting can last anywhere from few weeks to even up to 6 months after the cessation of treatment.
According to recent studies 5HT3 antagonists have shown a favorable effect in management of radiation induced nausea and vomiting.
http://linkinghub.elsevier.com/retrieve/pii/S095980490400098X
You can discuss this with your doctor, I am sorry this may mean more drugs but that’s the only option right now.
Please let me know if you need more information. Take care!