Author Topic: Hearing deterating  (Read 1256 times)

k8

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Hearing deterating
« on: February 17, 2017, 07:49:55 pm »
Hi all
I am 31 and was diagnosed with a 4mm x 2mm AN just over a year ago.
One ENT told me "dont worry it's a tumour not cancer" - wow gee that's encouraging NOT - I no longer see him.
I'm currently in the W & W group of things.
Symptoms: tinnitus daily in L ear, intermittent sharp ear pain (can last a days or just be a few minutes), on and off fatigue, hearing loss in L ear.
Recent recheck of my hearing last week shows dramatic drop in hearing in my L ear but still perfect in R.
Scheduled for my 6 monthly MRI next week.
Part of me always hopes this stupid thing will grow so i can just get it cut out.
I think my ENT was very shocked when hes like you can do RT and I said no.
I'm a veterinarian and get exposed to radiation daily so I dont need anymore that what I'm currently getting
Plus when I spoke to the radiologist (just to make them all happy - including family he said given my age and size of tumour yeah no.
Just  makes me wonder how far do they let your symptoms go before they decide the surgery benefits outweigh the risks..?

rupert

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Re: Hearing deterating
« Reply #1 on: February 19, 2017, 08:14:25 am »
  How long will they let symptoms go?  Unless your life is in danger that's pretty much up to you.  I can tell you that things usually don't get better over time.  They may stay the same for a while or get worse.  Sometimes much worse.  I've always considered watch and wait just a period of time to research all the options and find a good team of doctors.   Then get the thing treated.  The long time watch and wait group  are a brave resilient group I admit but, most will end up doing treatment as  their AN has gotten bigger or symptoms become too much.
  I would not rule out Gamma Knife.  I see your reasons but,  I would suggest consulting with neurosurgeons who specialize in Gamma Knife.  There are world class docs out there that I believe can help you no matter your treatment choice.  I don't believe age or profession would preclude you from any treatment regardless.  As we always say here,  better outcomes come with the most experienced teams of doctors.  Seek them out for opinions. Dr. Lundsford at UPMC in Pittsburgh comes to my mind.  :)

ANSydney

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Re: Hearing deterating
« Reply #2 on: February 19, 2017, 04:39:50 pm »
k8, if your symptoms are tolerable, watch and wait is probably the best strategy.

In Denmark, 95% of patients with a tumor less than 20 mm are put on watch and wait. ( http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf )

No matter what you do, your hearing is likely to decline. If you want to minimize the decline, watch and wait has the best results. ( https://pdfs.semanticscholar.org/2cef/abe8e8eef1ae32cab8bcf3c71dd75f53387c.pdf ) In particular, "In the literature, to our knowledge, there have been no reports of the hearing preservation after 10 years or more after hearing preservation surgery or radiotherapy. In the present study [no active treatment], 95 patients had been observed for 10 years or more. According to the AAO classification, 46% maintained good hearing after 10 years or more compared with 45% using the WRS classification and 75% of patients with 100% speech discrimination at diagnosis."

If treatment is required, Gamma Knife has better outcomes than surgery. A simple examination of published papers will confirm this.

The statement, "The long time watch and wait group  are a brave resilient group I admit but, most will end up doing treatment as their AN has gotten bigger or symptoms become too much" is unsubstantiated. In https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1502035/ only 7.3% of the watch and wait proceeded to intervention (it would have been 6.8% except "1 patient elected to proceed to surgery although there was no tumor growth or new symptoms"). This success rate is consistent with other papers.

In summary, if your tumor is tumor is less than 20 mm, watch and wait appears to be the best strategy; you will retain hearing for longer and you've only got about a 10% change of requiring intervention.

ANSydney

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Re: Hearing deterating
« Reply #3 on: February 19, 2017, 04:52:31 pm »
k8, how long have you had symptoms? That's a very important question to know the answer to.