I don't have an AN?

[alibauer]

Hi All,

Thought that subject would get you reading! 

I have a tumor, no doubt. It's a nerve sheath tumor; no doubt about that either. However, since this is a rare condition, my ENT was a bit baffled in his diagnosis (though he tried to play it off). I'm grateful that he ordered the tests to find and then further deliniate the tumor (though he'd been looking for salivary gland abnormalities). After doing my own research though, and being given my own MRI and CT Scan films and reports and reviewing them, I realized a couple things:

First, I realized that my doctor is far below par in the quality of care department. Every single thing he said about the tumor was pulled directly from the MRI/CT Scan reports. This is not a good sign as far as his experience. He left out a lot of detail from the reports, giving me the impression that he only skimmed them and I suspect that was only when I was sitting in the room with him (he glanced at them before beginning to speak each time). I do not appreciate that level of care. Were I in his shoes, I would have read the films and reports on my own time, and looked up the tumors that the radiologist had proposed as possible culprits. Then I would be honest with my patient that I am not really all that familiar with his/her condition, and proceed to tell them what I do know and what I've recently found. He is not going to have any part in my surgery.

Second, I discovered that although he'd initially told me I had a cranial nerve schwannoma just off of C4, the MRI said probable schwannoma in the C4-C5 region. Then, the CT Scan didn't mention a schwannoma, but a probable neurofibroma, which is also a nerve sheath tumor. It's location? In the C5-C6 region. My doctor didn't even COMMENT on the CT results until my husband and I asked him if it had done anything to further deliniate the tumor. He said no. Did he even read the report? I could say almost definitely not, considering the differential diagnosis and the slight difference in position that it found!

No more about him, he is irrelevant. Let's talk about the tumor. I have discovered, though I was confused as to whether I had one before, that I definitely don't have an AN. My tumor is too low and couldn't affect my hearing or facial nerve. For this, I am grateful. I've discovered through my own reserach that C4 and C5 cranial nerves control the diaphram, and that if they are compressed or destroyed, spontaneous breathing is not possible ! The C6 cranial nerve has something to do with arm and back muscle function. Damage to that area would be awful, but I would survive! Not to worried about it anyway. If one scan said C4-C5 and the other C5-C6, I'm willing to bet the thing is pretty flush on C5, but we will see as I go for multiple consults with neurosurgeons.

Anyhow, the sucker has to come out. I can't wait. I know the surgery is delicate, but I have a feeling that a neurosurgeon will be very careful when tinkering with a nerve whose damage could affect/end my breathing! I think sometimes doctors get lazy or feel like they can't save hearing or the facial nerve so they just cut on through! I'm hoping this ups my odds of limited complications.

So guys, I don't have an AN. I am a fraud and a phony. These spinal cord nerve tumors are so rare though, and they are like cousins. I choose to stay in the group. You guys are great and helpful. Maybe my eventual surgery story will help someone with Neurofibromatosis. I hope so.

Ali

[wanderer]

Rarely will a doctor comment about something outside his specialty.   It is not surprising he didn't tell you much.    I am sure he tried to tell you just enough to get you out of his office and to a specialist.

My ent called me about my AN.  told me I had a tumor called an AN.   that he was sorry and that he would make an appointment with a specialist and they would be calling me to schedule with me.

Nothing about possible glioma or anything like that.     even the neurotologist didn't think the spot (possible glioma) was worth mentioning.   3 of them said it wasn't worth worry about.   Somewhere along the line somebody started worrying and sent me to a different neurosurgeon he said it was something but wasn't sure whether it was worth worrying.

you definitely need to force them to give you the information.  Ask lots of questions and take notes.

[alibauer]

hmmm...

First of all, wanderer, thanks for the very sound advice. It was my plan all along to seek at least 3 opinions from neurosurgeons and more if there seems to be little agreement. Also, I plan to ask a lot of questions, and now I know from your experience that it is absolutely 100% essential. My one fear is that I'll freeze like a dear in headlights when I'm in with the doctors.

Anyhow, I would have no problem if my ENT simply referred me out. He didn't though. He wanted me to see the neurologist that he works with, and then he wants to do the surgery with the help of the neurologist. I know this is done all the time, but I can tell my ENT has no clue what he's talking about with this disease. I don't know why he just wouldn't be honest about his experience and send me to someone that knows CNS nerve tumors.

Oh well. At least I have the sense to get other opinions.

Thanks again!

[jamie]

I wouldn't worry too much about possible nerve damage causing you to not be able to breath, I believe the damage would have to be bilateral (on both sides) to cause that, the other side compensates. People have strokes and lose every nerve on one side and live. I too have a lower cranial nerve tumor, although mine is a schwannoma according to the radiologist, two neurosurgeons, and my radiation oncologist. Mine is in the glossopharyngeal area (swallowing and voice), but they say it's hard to tell exactly which nerve it's on. I found it because I was having earaches that would radiate to a slight headache, my primary doctor found my ears to be clear as far as he could see and thought a CT would be a good idea just to be safe, I thought it was a bit excessive but oh well. Then the imagng facility said I should have an MRI because they found an area of density, I thought they were just trying to make the area of density their bank, but I was a bit concerned after reading about headaches being caused by tumors and went along with it, just to assure myself there wasn't one and move on. Then I got the call form my doctor, he said I had a brain mass, that was the scariest moment I have experienced in my 28 years of life. Luckily I got into Barrow Neurological the same day and was assured it was almost certainly benign, that it was a almost certainly a schwannoma 2.3 cm (however without biopsy, nothing is 100%, but it's close enough for me). I felt better, but it still sucks. Since my tumor is still in size range, I am going to nuke it with the cyberknife in a couple weeks, complete surgical removal is pretty much impossible without sacrificing the nerve, so that is a last resort in the event radiosurgery doesn't control it, but my radiation oncologist says the middle is already dead, there is a very large area of central necrosis already so I shouldn't have any swelling. I guess the tumor has a poor blood supply, I have an idea why but I'll leave it at that.  ;)  Turns out my earache is likely unrelated, my doc says the tumor is too low and shouldn't really be causing those symptoms, he is sending me to an ENT as he thinks there may be fluid build up in my inner ear causing pressure in my eustachian tube and I may need antihistamines to clear it up, go figure, the tumor may have been discovered accidentally. Good luck with your surgery. You'll do fine.

[wanderer]

Do your research.

Write out your questions a head of time.   Make sure you go over them point by point so that you have answers.  If you have to email the questions and make them answer them in a return email.    After diagnosis I was told that I did not need to see an ENT again.   I was off to Otologists and  Neurotologists as well as one neurosurgeon.

All 3 of my Neurotologists agreed on approach,  all but one advised against radiation due to my age and size of tumor.

good luck I know how tough it is to get straight answers out of doctors.  I'm sure everything will work out fine.

Even with all the problems I've had I can say it hasn't been all that bad.  Just inconvienient. 

[russ]

Ali;
  How many C-5 nerves are there which control the diaphragm? A 'worst case' scenario?
  Can they Gamma Knife this thing? And, what is the difference between a neurofibroma and a schwannoma?
  I have 10 spinal tumors in the cauda equina. They are related to my having NF-2. Are they schwannomas or neurofibromas?
  Best wishes in this most delicate of areas!
  Russ

[jamie]

Russ, I think neurofibromas are more common in people with NF1, and rarely occur in NF2 from what I've read.

[Goldineye]

Jamie, Your tumer can cause earaches, stuffiness in the ear, hearing loss and I was also told I had problems with my eustachain tube. I was having problems with my left ear for over 2 years. It turned out it was all from my AN. So I just wanted to let you know it most likely is from your tumer. These tumers put pressure on alot of things. Good Luck  Golineye

[matti]

Hi Ali - At least you are finally getting a diagnosis and ruling out other possibilities. It sometimes amazes me, how we are able to do our own medical research and also become medical slueths. We are so lucky to have a wealth of information at our fingertips. Please keep us posted and you better not be leaving this forum!!!!

Try and enjoy the weekend, please don't worry too much.

matti

[alibauer]

Hey All,

Thanks for always being so responsive! Where do I begin?

How many C-5 nerves are there which control the diaphragm? A 'worst case' scenario?
 Can they Gamma Knife this thing? And, what is the difference between a neurofibroma and a schwannoma?
 I have 10 spinal tumors in the cauda equina. They are related to my having NF-2. Are they schwannomas or neurofibromas?
 Best wishes in this most delicate of areas!

Russ,

Wow, I really can't answer most of those questions. Hopefully as I visit neurosurgeons my condition will become clearer. I can answer this question to some degree: What is the difference between a neurofibroma and a schwannoma? Schwannomas originate from schwan cells, and typically contain a large amount of fluid. They are encapsulated tumors, meaning that they do not invade other structures. They are only destructive when they grow and effectively squish things. Schwannomas are malignant about 10% of the time. The prognosis for a malignant schwannoma is grave.  Neurofibromas contain some schwan cells as well, along with other cell types. They are denser than schwannomas, with less fluid. Unlike a schwannoma, they are not encapsulated. Though they are also highly benign, about 10% of benign neurofibromas undergo malignant transformation. When this occurs, or they are malignant to begin with, the prognosis, like that of a malignant schwannoma, is very grave.**

**Please keep in mind that all of this information was found through my own internet research, on sites considered reputable such as EMedicine.

After diagnosis I was told that I did not need to see an ENT again. I was off to Otologists and Neurotologists as well as one neurosurgeon.

Wanderer,

No kidding! My ENT (who can't even tell me the FIRST thing about my condition) wants to do the surgery himself! I think he should have looked at my scans more closely and realized that I had a normal sized brain with no tumors that affect my intelligence or judgment before suggesting such a ludacris treatment scenario!

I think our patient styles are pretty much the same. Kudos on being as proactive and educated as you can!

I wouldn't worry too much about possible nerve damage causing you to not be able to breath, I believe the damage would have to be bilateral (on both sides) to cause that, the other side compensates. People have strokes and lose every nerve on one side and live. 

Jamie,

Thanks a ton for the encourgement and hope.

Please keep us posted and you better not be leaving this forum!!!!

Try and enjoy the weekend, please don't worry too much.

Matti,

No way am I leaving this forum! I'd have to be nuts!

Actually, I have found some real peace about my condition lately. Not freaking anymore. It feels good to not be so insane, at least for a while! I'm starting to enjoy life again, thank God!


Thanks again, everyone!

Ali

[russ]

Hi Ali!
  "Grave"?
  I have NF-2. It is said those type ANs can impact and grow within the nerves. It is metastatic and referred by some as a benign cancer until ( gulp ) grave? 10% chance on the emedicine article huh. Guess I'll look it up.
  Have a nice day.
  Russ

[jamie]

Ali, fortunately I think you may have misread about 10% of schwannomas/neurofibromas being malignant. Rather 10% of soft tissue sarcomas (malignant tumors) are MPNST (malignant peripheral nerve sheath tumor) and those rarely arise intracranially, mostly thoracic, from what I've read. Here's a quote to make you feel better: "Malignant peripheral nerve sheath tumours (MPNST) are uncommon primary malignant tumours of peripheral nerves. Intracranial examples are rare with only 7 documented cases." http://path.upmc.edu/cases/case112/dx.html


 

[jamie]

Russ, in my research I found 50% of malignant schwannomas/neurofibromas are associated with NF-1, not NF-2, they are completely different conditions, I wouldn't worry at this point.

[jamie]

Goldineye, I agree that AN's can cause earaches and are notorious for the full ear feeling. However, my tumor is not an AN, it's much lower and not pressing on my eustachain tube. My MRI report noted sinus inflamation, yesterday I decided to get some Drixoral antihistamine/decongestant, my earache is gone and the stuffiness in my ear is 90% better. My tumor may be having some effect, but just one dose of the medicine (without any painkillers) made me feel much better. I guess I'll have to wait and see what the ENT has to say about it.   

[alibauer]

Hi Guys,

Don't know if I read the 10% stat on EMedicine or not. Just offering that as an example of the type of websites where I do my research. Plus, when I said the diagnosis was grave, I meant grave as in not good - not grave as in the place that a person is buried  ! What I write is not necessarily the best. I'm not a doctor. It's from my own web research. Please continue to correct me if I'm wrong though, since I find lots of scary stuff.

Ali