ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: lholl36233 on July 11, 2008, 03:46:55 pm
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I arrived at 10:45 for an 11:00 appointment. Dr. Moser was running behind.
It was 12:30 before I saw him. At that point, he acknowledged he received
the MRI and CT from Boston. Dr. Moser knew he had looked at them but since
it wasn't recent, he didn't remember the details. He didn't have the CD
with this information. He left for another 20 minutes in an unsuccessful
attempt to locate it.
He wants me to call Boston to have another copy sent but only if they'll do
it without charge. If they want to charge for it, he said I should call his office
to let them deal with it.
Once Dr. Moser reviews the MRI and CT again, he is going to call me to save
me a trip to the office.
Since I felt my hearing was better while I was on the prednisone, he gave
me another presciption. If I feel again my hearing has improved, Dr. Moser
wants me to call his office and he'll setup an appointment with the
audiologist for more hearing tests. Dr. Moser is a surgeon, not an ear,
nose and throat doctor like Dr. Lee who I saw 5/23. I think Dr. Lee should
have sent me for more hearing tests on that day when I told him I thought
my hearing was better because of the prednisone.
It was a frustrating day. :(
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I received this in the mail 1.from Mass Eye and Ear.
CT: Expansile primarily lytic lesion with mixed mineralization extending into the IAC or Alternatively causing upward displacement of the floor of the Internal Auditory Canal resulting in moderate to severe narrowing. This appearance is most consistent with a benign vascular lesion such as an ossifying hemangioma.
MRI: There is a T1/T2 heterogeneously hyperintense lesion that does demonstrate contract enhancement within the left petroux apex measuring 1.4x1.3x1.3 cm resulting in upward, expansile deviation of the IAC significantly narrowing the canal but not completely occluding it. Thiere is no significant edema surrounding the bone. The remaining temporal bone structures appear unremarkable. There is no association of this mass with adjacent vessels.
There are multiple subcortial and deep white matter hypertensities including a single focus within the genu of the corpus collosum which are very prominent give the patien'ts age. The ventricles are normal in size. The orbits are unremarkable. The visualized paranasal sinsuses are clear. The flow voids are normal.
Can anyone help me translate? ???
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(I removed the duplicate posting)
I in my "MRI's for dummies" translation ... they dont say AN .. but they do see something in the IAC (Auditory Canal). Small and not in adjacent vessels.. thats good news!
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Thanks for the opinion joef.
I am calling the doctor this morning to see when he wants me to come in with the cd and radiology report so he can review it. I didn't trust another copy to go directly to the office after the last time.
I'm under the impression the IAC is normal. The mass is obstructing the canal but not completely.
The good news is any reference to my right side was unremarkable which is my code for normal. :)
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Dr. Moser just called me. He found the original CD from Boston. He has
ruled out the AN the ENT assured me I had in May. He called it a
bone lesion in the temporal bone. Dr. Moser wants to talk to an expert on
the temporal bone before we do anything further. I'll call back next
Friday if I don't hear from Dr. Moser by then.
I am also going to setup an audiologist appointment to see if there is any
change from 5/2. I believe there will be improvement. I'm encouraged.
Has this happened to anyone else?
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Hi Laura,
I am new to this site and have read your messages with interest. After experiencing hearing loss, facial paralysis and vertigo for 11 years and multiple MRI and CT scans that were read as normal, I was diagnosed with an intraosseous hemangioma(1.4cm x1.5 cmx1.5 cm) that involves petrous apex of the temporal bone, cochlea and vestibule. Interestingly, I had this physician review all of the previous scans (I had at another Boston hospital )and he could see the lesion on all of these previous scans!
I have been on a few bursts of prednisone which have greatly helped my vertigo.
Hemangiomas of the temporal bone are extremely rare; I have not been successful locating a physician who is an expert in temporal bone lesions.
Good luck with your follow up- and if you learn who this temporal bone expert is- please share the name!
Take Care
Stacey
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Hi Stacey,
Dr. Moser told me the temporal bone expert was Dr. Glaser. Of course, I got that over the phone so Glaser could be spelled any number of ways. I'm not even sure he is with the same hospital but Dr. Moser said Dr. Glaser has written books on the subject but is currently on vacation.
I'll give it 2 weeks before I call Dr. Moser for an update. I'll have more information on Dr. Glaser by then. I expect a call Monday with an audiology appointment.
By no stretch do I feel like my troubles are over but I'm encouraged...
Laura
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Two weeks to the day and here I am with an update.
I have an appointment with Dr. Richard Gacek on 8/22. He is at UMASS in Worcester. He is an ENT Dr. Moser calls a temporal bone expert. If you google Dr. Gacek, you'll see he has written a book called Ear Surgery.
According to Dr. Moser's email, Dr. Gacek review my study from Boston and feels there is a reasonable operative solution.
I'll be back with an update 8/22...
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Laura-
We'll all be waiting. Meanwhile, many good thoughts for you!
Debbi
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Thank you for the good thoughts Debbi.
I've followed your posts. You are truly an inspiration.
I feel ,like everyone else here, it's important to share our experiences.
If it helps one person down the road, it will be worth it.
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Hello,
I keep posting on this thread for the benefit of anyone who doesn't already have my backstory.
I went to the audiologist today. On 5/1, I had moderate to severe hearing loss in the left ear. Today, the left ear was normal. On 5/1, speech discrimination was 78%. Today, it was 100%. Before the tests, the audiologist expected the results to be the same from 5/1. She was surprised.
Whether or not it will last or if it is the result of the last round of
prednisone remains to be seen. Still, I am encouraged...
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I saw Dr. Gacek today. There isn't a name for what I have, like acoustic neuroma. I basically have new bone putting pressure on the hearing nerve. It made sense to Dr. Gacek the prednisone would help that. He doesn't want to rush into surgery on this. It wouldn't be a simple procedure much like the surgery so many of you have gone through. Even though it's not an AN, it is in the same area. There is no option for radiation because this isn't a tumor. Dr. Gacek wants to see me in 6 months after I've had another MRI and CT to see if anything has changed. As I posted, my hearing in the affected left ear is now normal. If I feel in the future it is getting worse, Dr. Gacek said I should call audiology directly for a hearing test.
So, if nothing changes, this might be my last post for 6 months. I will be checking the site often to monitor everyone's progress. Good luck to everyone.
Laura
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Hi Laura,
It sounds like you have a diagnosis and plan now, even if it doesn't have a name. Watch and wait sounds like a good first step, I guess.
I hope you will feel free to continue to participate in the forum as much as you like. There is no requirement that you have an AN, especially if you have something medical going on in your head near your ear. We'd be happy to have you.
Best wishes,
Steve
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Thanks Steve,
I kind of felt like i didn't belong here anymore because I don't have an AN.
I will have surgery if Dr. Gacek recommends it. He is the expert. I do think watch and wait is the best option for me at the moment since my hearing is normal.
Can you imagine new bone forming at 35 years old?
Laura
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Laura,
There are several members who have meningiomas, Meniere's disease, or other "wonky head" diagnoses besides AN. Since you have several similar symptoms, you may find some useful things on the forum. Plus, if you do end up having the surgery, I suspect you will go through some of the same issues, since you would be having surgery in the same area.
A year ago I would have said "what, new bone forming your ear? how can that be?" Now I tend to say that nothing really surprises me anymore, this particular area of the head seems to have all sorts of odd things that can happen. Once passed 35, I am pretty sure that anything that starts growing is not a good thing. :-\
Take care,
Steve
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Hello,
It's been awhile. I noticed the hearing in my left ear was not as loud as the hearing in my right so I made an appointment with my ENT, Dr. Gacek. That was today.
Based on the hearing test, it dropped slightly in the left ear. As anyone in MA knows, we had a big ice storm. Dr. Gacek couldn't make it because a tree was down in his driveway so I saw another ENT Dr. Shao. Poor Dr. Shao didn't have the backstory Dr. Gacek and the neurosurgeon Dr. Moser do. I filled him in as best I could. He brought up surgery. He said he's done it before with great success and that due to my young age of 36 (that's funny), I could bounce back quickly. Dr. Shao said that even though it's not an AN, a hemangioma is still a tumor and the surgery would still be similar to what many of you have gone through.
I'm on another round of prednisone but we'll see what happens when Dr. Shao talks to Dr. Gacek and Dr. Moser....
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Thanks for the update, Laura. It'll be interesting to see what the 3 docs decide; please let us know.
Surgery, while not a really pleasant experience, isn't all that bad - I can say that in hindsight. And, God forbid I had to do it again, I would.
I'd take 36 again - sounds young to me ;D I've got 11 years on you. As Lori would say "Now that's old" :o LOL
Jan
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Hi,
I had a follow up appointment with Dr. Gacek today. On 12/12, their was a slight drop in the hearing in the left ear. After a megadose of prednisone, the hearing didn't change. Dr. Gacek said that means there was no swelling for the prednisone to bring down this time. That makes sense to me.
Because I have no symptoms other than the tinnitus and hearing loss, Dr. Gacek doesn't want to rush into surgery. I'm having another MRI and CT scheduled which I"m sure will be in the next few weeks once insurance approves it. We'll see what Dr. Gacek says when he sees those results...
Laura
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Hi,
Dr. Gacek gave me the results of the MRI and CT today. The first thing he said walking through the door was, "There was no change since the last MRI and CT." That says to me he looked at the tests before he saw me. That is better than Dr. Lee did.
He called my tumor a chondroma. That is a new one on me.
I got an education is reading the CT scan from Dr. Gacek. He said the tumor is surrounded by bone which he believes would keep it from expanding to the brain stem. I thought that was interesting.
So, if the hearing doesn't get worse and I don't develop balance issues or facial weakness, I'll see him in six months.
If you're in central MA and need an ENT, I would highly recommend Dr. Richard Gacek at UMASS in Worcester. He is a brilliant doctor and very nice man. :)
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Hi, Laura. Was curious (or anyone who might know, please feel free to respond), Dr. Shao's name came up in a conversation I had with another ENT as a potential referral, but he described him as a neurotologist, which I thought is what is needed for treating AN's. I just checked the UMASS website and he's listed as an ENT but has "clincial interests" in neurotology, with a Fellowship from Paparella Ear Institute (Otology/Neurotology). Does anyone know if Dr. Shao's credentials appropriately equip him for seeing patient's with ANs? I'm wondering if I should be seeing him (or not).
Here's the page I found ...
http://www.umassmemorial.org/medicalcenterIP.cfm?xyzpdqabc=0&id=1377&action=detail&ref=1781
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CF,
I took a quick look and it would seem that Dr. Shao is Board Certified in Otolaryngology. So, to be sure, I looked up that word and found:
"Otolaryngology or ENT (ear, nose and throat) is the branch of medicine that specializes in the diagnosis and treatment of ear, nose, throat, and head and neck disorders. The full name of the specialty is otolaryngology-head and neck surgery. Practitioners are called otolaryngologists-head and neck surgeons, or sometimes otorhinolaryngologists (ORL). " Found here: http://en.wikipedia.org/wiki/Otolaryngology (http://en.wikipedia.org/wiki/Otolaryngology).
It's also listed as one of his adult specialties. Based on that, I would say that he's suffiently qualified to treat people with AN's. If I am not mistaken, one of my treating doctors was a Otolaryngologist also (had a neurosurgeon that worked with him as well).
Sure sounds like you're in the right place.
Regards,
Brian
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Thank you very much Brian! What a relief!!!
FYI Your post prompted me to search further and I found this Q&A below
:) :)
(from http://www.houseearclinic.com/acousticneuromaFAQ.htm )
What type of doctor should I be consulting about my acoustic neuroma?
Ideally, a neurosurgeon or neuro-otologic surgeon who has experience with the treatment of acoustic neuromas should be consulted. Many specialized teams exist at several centers around the country who have the necessary experience and frequently treat patients with acoustic neuromas. These are difficult problems that are best handled by an experienced, multidisciplinary team in order to provide the best chance for a good outcome. It is important to find out the level of experience of the physician that is consulted. Patients should not be bashful in asking how many acoustic neuromas the doctor has treated within the past year, or in the past five to ten years, and what the results of that treatment were. Patients should expect to receive specific answers based on a review of the physician's own personal data. It is important to find out the physician's personal results with preservation of facial nerve function, hearing preservation, and the incidence of other major complications with either surgery or radiosurgery. Patients should probably be wary if a surgeon does not have easily produced statistical results (this usually means that he/she does not frequently treat these tumors). Likewise, patients should be wary of being treated by a physician who only occasionally treats this complicated problem.
Is this a tumor that any general neurosurgeon or otolaryngologist should be treating?
Again, the experience of the surgeon and sub-specialty training influences outcome to a tremendous degree. Patients should seek out an experienced team who frequently treats these tumors and can give sound advice based upon adequate experience.
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The neurotologist at Univ of Iowa is the head of the Otolaryngology dept. So there is a connection.
Cheryl R