ANA Discussion Forum
General Category => AN Issues => Topic started by: JeanneR on June 25, 2014, 05:49:42 pm
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Hello AN family,
I was diagnosed by MRI last week with a intracochlear schwannoma. ENT said i needed to see a sub-specialty physician. I managed to move up this appt from July 14th and was seen today.
I was extremely disappointed. This was one of the Drs on the recommended list on this site :-(. I got the definite impression that he had already decided to consider me a W&W. He used the " if it were my wife or daughter" line without a reason why. Use of that line sends up a red flag for me. It is often an excuse to dictate a decision without any discussion or explanation. I expected a good explanation of treatment options. All he wanted to do is send me for a hearing aid.
I'm 62. Will retire in October from the same medical center. I expressed the need to treat this now, before I retire due to:
Progression of tinnitus and balance issues.
The need to improve balance due to osteoporosis. If I fall I will fracture something.
Preference to avoid Radiation treatment as this often requires steroid use. (not good if you have osteoporosis).
I left with an appointment for vestibular testing and the hearing aid clinic. They will try to coordinate an appointment with a neurosurgeon when I return for the results of the vestibular testing.
I am so angry!!!!!!! I went expecting a detailed explanation of "my tumor" and the best treatment options for "my tumor".
Instead of individualized care based on my symptoms and how it's affecting my life, I got the "conservative do nothing protocol" that seems to be increasing in every aspect of medical care.
So much for "the needs of the patient come first".
This physician was positive that no treatment of any kind could improve balance, reduce or alleviate tinnitus, get rid of the plugged pressure feeling in the ear. Is that true?
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You had your first opinion, and should get more. See if all the surgeons give the same advice, to watch and wait. Once you have more than one opinion you will know more and be able to choose what to do.
No one has the same treatment outcomes so it is impossible to know beforehand whether a given symptom will be better or not following treatment. Some people's balance improves, for some people it is the same or worse. My plugged ear "unplugged" before surgery for example and after years of that symptom, never recurred. Others continue to experience the feeling.
Everyone needs some time to get opinions and think about them. You have time.
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hi Jeanne- I agree on getting a second opinion or third or fourth, if necessary- you also want to find a physician that you have confidence in. My ENT referred me to a radiation specialist AND a surgeon to get different points of view. They both recommended Gamma Knife due to my age & tumor being relatively small...did you find out how big yours is? I also have osteoporosis & sympathize with what you're going through- hang in there & keep us posted...-another Jeanne
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Hi JeanneR .....
Have to concur with the previous responders to your post ..... get additional opinions.
Many times a very small AN can cause many symptoms that seriously alter ones quality of life. If you do not have a copy of the CD from your MRI, get one or more and send it, along with your most recent audiogram to other places.
There are many places around the country with experienced physicians in the treatment of ANs who will do free consultations if you send them your MRI and audiogram (if you have one). House Ear Clinic, USC in Los Angeles, Stanford University, University of Pittsburgh Medical Center, etc.
Unpleasant symptoms should be the driving force behind whether to watch and wait or treat. Sometimes you, as a patient, have to be aggressive in asking questions and being honest about how your symptoms are making an impact on your life.
At least with multiple opinions, you have a better look at your options and why. I know, for one, Dr. Friedman at USC will personally call you with 24 hours of receiving your materials to discuss his opinion.
Best wishes and let us know how it goes.
Clarice
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Thank you for the advise everyone.
I truly was hoping that this appointment would go well, because it's my employer and is on the recommended list on this site.
I guess my lunch break tomorrow will be a visit to patient affairs to request a CD of the MRI.
I'm trying to take this journey one step at a time. I just wish one step forward didn't result in steps backwards and sideways to find another path.
Jeanne
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Before you visit another doctor, develop a series of questions you want answered. You said he recommended W&W without any explanation...did you ask him to explain himself? You left without the answer, because you did not ask the follow up question.
My recommendation is to arm your self with a list of questions before you interview another doctor. YOU are in charge. You are interviewing them like they are applying for a job. Follow up all of their answers with more questions about about their previous answer.
I interviewed three doctors and landed on the final one. I got better at asking questions after spending a lot of time on this site. My experience was similar to yours, but I asked the follow up questions. The first two doctors would not fully answer my follow up questions and the last one was right up front with me. I had a great outcome.
James
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Hi Jeanne - I had the exact same experience you had. I wanted to shed a tear when this famous doctor told me 'if you were my family member I would not recommend anything but W&W'. This same person told me that no matter what treatment I would lose my hearing anyway!'. Guess what? This doctor was wrong (I would later figure out the doctors motivation but don't feel it's appropriate to list it here). But I am SO very glad I sought out other doctors. Because leaving this tumor in for me even though there was a small chance of total hearing loss was not an option I felt comfortable with. I am an engineer and I believe in preventable maintenance rather than running something to failure. I had already established a growing AN and knew that with time there would only result in additional neurological damage (in my case). I wanted it out! And based on my research for my particular case, radiation wasn't something I wanted to do either. So I sent MRI's to a different clinic that does many AN's surgery and got their advice. I had the tumor removed and my hearing was saved. Now I still have vestibular balance issues but am recovering. Please seek a physicians that think like you - that you feel comfortable with and don't stop listening to only one place/person for advice. My thoughts are with you. Keep us informed! Craig
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Hi jeanne
First of all I would like to declare that I am not a medical professional and that these views are my own personal opinion and you should always seek medical advice.
Unfortunately I think I understand why your doctor has recommended watch and wait.
Your tumour is an intra cochlear schwannoma. That means its in your cochlear. And is not technically a brain tumour. Tumour removal would mean destroying the cochlear and all hearing and I believe balance on that side. This is why you have been sent for vestibular testing. To measure how much damage has been done to your balance. Many schwannomas do not grow, and if yours did it is not life threatening because it is outside the skull. I imagine what you want is relief from the symptoms.
Surgery maybe one option, but is risky and will make you deaf in that ear.
I believe gentamicin is also used as a treatment for severe balance disorders. It is injected straight into the ear drum.
It will destroy the balance organ and possibly relieve you of your most severe symptoms.
However the loss of the balance organ on one side has its own consequences, and will take you time to adjust.
I think you will find more treatment options will be considered after the vestibular testing.
It's always worth getting more opinions. Currently the consequences of treatment may outweigh the benefits. I would certainly ask about gentamicin as a treatment for your symptoms and whether it is a practical option combined with watch and wait.
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Thank you for the advice Paul.
Unfortunately I'm allergic to all of the "mycins". I don't understand how injecting an antibiotic would help unless there is an infection?
I guess I will have to do some more research.
Hopefully the surgeon will be more helpful on the 23rd.
I see hearing aid person on the 2nd. From what I've read, I may not be able to get one that both transfers sound from bad side to the good side and also masks tinnitus. I need the tinnitus to go away at night so i can sleep. The CROS look like big units, not something a side sleeper could use at night for masking. I doubt that insurance will cover any of the cost, even with a tumor causing the tinnitus and hearing loss. Thanks to Obamacare the reimbursement account from my employer no longer covers hearing aids, only glasses and dental.
I'm trying to stay positive. It's difficult. I'm one of the people who "want it out".
My new coping strategy is bringing boxes home each night and packing 3-4 boxes for the move this fall. Atleast I'll have clean closets :P
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Gentamicin is a powerful antibiotic that is toxic to the cochlear
Its not used for an infection but purely for the side effect rendering the balance part of the cochlear useless. Many balance problems are caused by partial, changing, or wrong signals from the cochlear.
If they kill it off, the signals stop, and your brain eventually gets used to not having it.
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I just looked up Gentamicin (correct spelling) versus Erythromycin... also correct spelling.
They are two very different antibiotics.... they are in a different family of antibiotics.
So it is possible that you may not be allergic to gentamicin
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Hi Jeanne -- others have already stated what I wanted to suggest --namely, if you're uncomfortable with this doctor, seek another opinion, preferably from another practice -- and I mention this because doctors can be reluctant to be perceived as "poaching" patients from someone else in their group (I recently ran into this very situation). I understand you work for a medical center so treatment from another practice may not be feasible, but, as others have mentioned, there are several very good doctors who provide phone consultations. They could at least give you another opinion and answer your questions.
Mostly I just wanted to chime in and offer support and encouragement. Any type of tumor is a scary diagnosis, but hang in there :)