Author Topic: Is No News Good News?  (Read 5283 times)

yesterdaysmom

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Is No News Good News?
« on: June 18, 2017, 09:32:13 pm »
Hi! I went to the ER a couple weeks ago for another issue and the doctor did a CT scan on my head. He found a mass on my 7th cranial nerve. I went to the ENT who never looked at the CT scan disk but said it is the 8th cranial nerve. So I am not sure which it is. Anyway, I had an MRI on Thursday on June 15th. My follow up in on the 26th. I was under the impression I would find out the results at that follow up appointment. Anyway, my cousin (whose husband died of a brain tumor) said that if it was a tumor that they would have called me right away. But I have read some posts on this forum that if it is not an emergency then you might not get results back until a week or so later. So now I am trying to figure out if not receiving any calls yet means it was a false positive or if it just means it is not an emergency. I am hoping it means there is nothing there and it was just a false alarm. But I do have symptoms (dizziness, vertigo, ringing in ears, loss of balance, unsteady gait, brain fog, and headaches). I want to believe my cousin is right though that it means nothing is wrong or they would have called me already. What do you think?

ANSydney

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Re: Is No News Good News?
« Reply #1 on: June 18, 2017, 11:25:01 pm »
Hi yesterdaysmom,

From what I can gather, it is not possible to tell which nerve a schwannoma is growing on. If you look at the MRI report, it will say something like "consistent with a vestibular schwannoma". They normally say it's growing on the vestibulocochlear nerve (Cranial nerve VIII) since that is where 95% of them grow. People have gone in for vestibular schwannoma surgery only to have it altered or aborted since it is growing on the facial nerve (Cranial Nerve VII).

The good thing is that schwannomas are slow growing, non-malignant and I have not heard of any case where someone has died from their schwannoma. (About .5% die, usually if infirm, from surgery and an unknown number from doing nothing.) The main thing is that these tumors are slow growing and you have plenty of time to evaluate options (surgery, radiosurgery or observation).

Did they mention how large your tumor is as that affects urgency? Also, how long have you had symptoms?

From what I gather, you have already been diagnosed with a schwannoma, it's just a matter of finding out more. This may result in the ENT not rushing to get back to you. (If it was a new diagnosis, they would have gotten back to you straight away, if my case is  common.)

Your cousin's husband who died from a brain tumor probably had something far more serious such as a glioblastoma, which is malignant brain tumor.

Kathleen_Mc

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Re: Is No News Good News?
« Reply #2 on: June 19, 2017, 02:35:28 am »
I would think if a CT showed a mass and they went to having an MRI you should ensure you get a follow up appointment, the finding of an acoustic neuroma ( or that by any other name) is not necessarily a big deal to the medical professionals
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Patti

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Re: Is No News Good News?
« Reply #3 on: June 19, 2017, 11:02:58 am »
After all these years, I still am in a high state of anxiety after my MRI while I wait for the results.  Just went through it again (seems stable).  You never really can know the results based on doctors' behavior.  This time her office called and said, "the doctor would like to see you in the morning to go over your MRI." My husband and I were so sure it grew. We were wrong! 
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

yesterdaysmom

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Re: Is No News Good News?
« Reply #4 on: June 19, 2017, 11:36:43 pm »
I don't think I have been diagnosed. The MRI was ordered so the ENT could see what was going on. He said he could not read the CT scan disk the ER made. He only read the report and did some testes like hearing, balance, etc. He ordered the MRI but said it could be a false positive.

The ER report says:

"Findings: Possible dense mass in the left internal auditory canal, versus partial volume averaging with the petrous portion of temporal bone. No cortical atrophy noted. The ventricular system is normal in size and configuration. No intra-axial or extra-axial acute hemorrhage. Normal aeration of mastoid and paranasal air cells."

"Impression: Hyperdense mass versus volume averaging artifact in the left internal auditory canal. Side of symptoms is unknown, but impingement on the seventh cranial nerve may be considered. No other acute intracranial change."

The ENT report prior to MRI says:

The following list includes any diagnoses that were discussed at your visit.
1. Neoplasm of brain stem
2. Dizziness
• dizziness: care instructions
3. Dysfunction of eustachian tube
• eustachian tube problems: care instructions
4. Sensorineural hearing loss
• hearing loss: care instructions
Discussion Note
get MRI