Author Topic: So helpless and clueless  (Read 2924 times)

ncdude

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So helpless and clueless
« on: September 13, 2005, 03:53:59 pm »
I have yet to go for an MRI for the Brain/IAC (I'm assuming that IAC stands for something, something, CONTRAST), but here's my story.

I've had some back surgeries including a major cervical surgery at C4/5/6/7 with plates and the whole 9 yards.  My spinal cord is still compressed at C4/5, but that's another reason to see my NS. 

About a year ago, I began to feel something on the outside of my ear, leading to the canal.  Imagine if someone wadded up paper or cotton and put it in there, it was just that feeling of "full" that comes and goes, depending on the phase of the moon and day of the week and other mysterious reasons I have yet to learn.  At first, I thought it might be wax, but cleaning the ear made no difference.

My GP finally let me go to an ENT a few weeks ago.  They did a hearing test and determined that I have asymmetric hearing.  Both of my ears are very good, but I had more difficulty hearing high frequency sounds in my trouble (right) ear.  So far, I can't tell a difference in my ears, and let them know that I couldn't hear some tones because of the sound of my blood coarsing through my brain.

So, I'm seeing my NS concerning a revision surgery on my neck tomorrow, so if he recommends an MRI, I can go and do both together and hopefully save a few dollars for both myself and my insurance company.

I guess I'm just pretty freaked about possibly having an AN.  I don't know if I can handle more than one more surgery.  I'm not even sure if an AN is what I have.  It may be nothing and I can close out membership here.  I hope that is the case.

Another thing that concerns me is that for years, my dad complained of itching ears, which might be construed as this sensation I feel, and in 2002, he died from a Level 4 Glioblastoma Multiforme.  GBM, the mother of all tumors as Saddam would say.

If anyone could offer any hope, or advice, please do.  Thanks.

ncdude

jamie

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Re: So helpless and clueless
« Reply #1 on: September 13, 2005, 05:02:59 pm »
Hello ncdude,

I wouldn't stress it too much until you have your MRI. I assume the IAC you are referring to is the internal auditory canal. If it is an AN, and if it's less than 3 cm, surgery is by far not the only option. And in my opinion as a patient, not a doctor, surgery should be the last resort. There are many threads on this board regarding radiosurgery, a non-invasive procedure, that you should check out if you do have an AN, also feel free to message me if you need guidance as to where to find information about radiosurgery. I just had radiosurgery by CyberKnife two weeks ago.

As far as the GBM, I highly doubt your father's itchy ears were a symptom caused by his GBM. Especially since you state he had that symptom for years. A GBM does not cause symptoms for years, a GBM is usually fatal within a matter of months, as opposed to years. Here's some info about GBM from emedicine:

Quote
The clinical history of patients with GBMs usually is short, spanning less than 3 months in more than 50% of cases, unless the neoplasm developed from a lower-grade astrocytoma.

The most common presentation of patients with glioblastomas is a slowly progressive neurologic deficit, usually motor weakness.

Alternatively, patients may present with generalized symptoms of increased intracranial pressure, including headaches, nausea and vomiting, and cognitive impairment.

Seizures are another common presenting symptom.

http://www.emedicine.com/med/topic2692.htm


I don't think a GBM can be "passed down" from a family member, but some studies find in some cases that those with a family history of renal disease may be at higher risk than others. But the symptoms you describe do not sound like a GBM from the extensive research I've done. If anything, it sounds like an AN, and compared to a GBM, it's a hangnail. Hopefully it's nothing though. Good luck!

CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

ncdude

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Re: So helpless and clueless
« Reply #2 on: September 13, 2005, 07:17:29 pm »
Thanks for the thoughts.  My dad died when he was in his 70's, and the doctors at the hospital were surprised because the GBM usually hits people in their 30's.  I'm hoping my fullness/tightness on the canal of my ear can be explained and not be a tumor.

I was reading where an MRI should be done with contrast (Gadolinium).  Is that the case, or is a normal MRI OK?

ncdude

Monica

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Re: So helpless and clueless
« Reply #3 on: September 13, 2005, 08:14:39 pm »
Hi NCDUDE,
I have had 3 MRIs, one pre-surgery and 2 post surgery (I am 18 months post surgery). The contrast is injected about 2/3 the way through the MRI and , in simplist terms, aluminates the area where the tumor is. My most recent MRI in May showed very little contrast - a good thing. My doctor at Johns Hopkins said that all looked great.  Try not to get too antsy until you hear the results.  I had hearing loss, tones in my ear and balance issues. Three key indicators of an AN.  Good luck. I will check in to read your update.
All the best -
Monica

jamie

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Re: So helpless and clueless
« Reply #4 on: September 13, 2005, 09:24:47 pm »
I was reading where an MRI should be done with contrast (Gadolinium).  Is that the case, or is a normal MRI OK?

Yes, the contrast is what enables diagnosis of a tumor. Certain tumors, like schwannomas (AN's) enhance brightly with contrast and have characteristics that enable a professional to diagnose what kind of tumor it is with a high level of certainty. Because of that technology, a biopsy is generally not required to make the diagnosis.
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma