First Symptoms and FREAKING!

[alibauer]

Hi All,

Back when I wasn't sure whether I had an AN, I thought my common dizzy spells were tumor related. Turns out, my tumor is a bit too low to be an AN, and threatens sensation and motor function in my left arm and upper back. The dizzy spells were caused by blood pressure issues. I always run a little on the low side and sometimes it gets a little on the ridiculously low side.

Up until last weekend I'd only had symptoms for a couple hours on one day, which made me think it was all in my head. Last weekend I had actual pain and numbness. The pain was in the tumor site, in my arm and fingers, and in my upper back, left side. It was so strange because the pain actually moved around. It would be intense in one spot for a short time, then become dull. The numbness was strange as well. You know that needles and pins feeling that you get when you lay on your arm for a while? You know the cold feeling that comes over it before it gets the needles and pins? That's what it feels like. This has become constant, though the degree varies a bit. The pain is constant now as well, to varying degrees and jumping about from place to place.

My question is this - does your numbness and pain act anything like mine? I have a peripheral nerve tumor in my neck, and not an AN, but they are both nerve tumors and both exceedingly rare. Just wondering if anyone has had a similar experience.

Thanks,

Ali

[jamie]

Hey Ali, since most of the people on this board have AN's, they probably won't have many of the same symptoms you have. I think mine is closest to what you have, it's a lower cranial nerve schwannoma in the jugular fossa. You said your doc told you yours was a neurofibroma, did he say how he came to that conclusion based on images alone being as schwannomas and neurofibromas are so much alike other than the presence of a few other cell types? Also, neurofibromas are rare in people without NF-1, but they do occur sometimes. But back to the symptoms, the only symptom I have had is otalgia (earache) off and on, a feeling of stuffiness, no hearing loss, but stuffiness in my ear, and what seems like muscle pain in the back of my head on the tumor side. Because ot it's location, my radiosurgeon suspects these symptoms may be caused by something else entirely unrelated, like inner ear fluid build-up, and when I take decongestants, it seems to help. I'm gonna see an ENT for that after I nuke this stupid tumor. It may just be referred pain from the nerve, but that wouldn't explain the stuffiness. One thing I have noticed though, is when I forget about the tumor, I seem to have no pain at all, but when I start thinking about it again, I get shooting pains in my ear and neck, and the neck pains didn't start until after I found out about it a couple weeks ago, so I honestly feel alot of my pain is mental and due to the fact I know something's there. I'm not saying that's what is going on with you, but I'm a strong believer that the mind is very powerful, and it can work for or against you.   

[matti]

Hi Ali - I know you met with your surgeon last week, do you have a surgery date yet? My biggest symptom was the numbness on the left side of my face. Mine wasn't a tingley feeling, but rather felt like someone was brushing the side of my face with a feather or a hair and I also had quite a bit of lower jaw pain. When I flossed on my AN side, I could not feel anything. That freaked me out!

Take care,
matti

[alibauer]

Hi Jamie,

Unfortunately, I don't think my pain is in my head - at least not completely. Often times I'll be at work, just doing my thing and not thinking of my tumor at all, and I'll get a shooting pain in my neck or arm, etc. In fact, the first time I noticed that the symptoms were getting constant and worse, I was blow drying my hair and noticed the finger tip of my left pinky really hurt. That being said, I'm sure knowing the tumor is there makes the symptoms worse.

As for the tumor, it was diagnosed, by my surgeon and the other NYU guy I saw as a neurofibroma. They distinguished this from a schwannoma because one section looked cystic, a common neurofibroma trait. That cystic area may also be old blood from when the tumor made the adjacent tissue bleed, or bled itself. The other half was more dense. The surgeon also conceded that it may be a schwannoma after all. They won't know until it's removed. Both the NYU guys said that they are almost 100% sure I don't have NF, considering my entire brain and neck were scanned and there was only one tumor. Someone my age would almost always have several if they had either form of NF. I'm 26. It could also be a muscle tumor, such as a soft tissue sarcoma.

Hey, Matti. No, no surgery date yet. They are still trying to work out the insurance stuff for me. Should be able to schedule by tomorrow or the next day, depending. I'll keep the forum posted, of course. Numbness is really freaky. Thank goodness I still have some sensation in my left arm. I hope it doesn't get worse.

Well, that's it. Thanks again, guys.

Ali

[Jeff]

Hi Ali,

My name is Jeff. I have read some of your posts and seen your interesting story. I am the lucky owner of 2 acoustic neuromas (I have NF2). This Spring I noticed some difficulties in my swallowing, leading doctors to add a scan of my neck to my regular MRI. Well, I got the report Friday, and I have a tumor in the left neck at the c6-c7 level that is "likely a neurofibroma." I have an appointment with a neurologist next week. At this point, I want to determine whether this tumor is the cause of my swallowing issues. I don't seem to have any other symptoms right now. So.. there is someone around with a tumor that may be similar to yours, although our symptoms are different. Personally, having had 2 AN surgeries already, I am in no hurry to have another. I'll ust see what the doctors say. Best wishes on your upcoming surgery.

Jeff

[alibauer]

Hi Jeff,

Wow. That is really horrible. Thanks so much for sharing and best of luck with the new stinker.

Your story raises some questions. What was the placement of the tumors that you had removed? How long was the recovery? Would you recommend that I request a full spinal cord scan if this turns out to be a neurofibroma when they complete the pathology? Do you you still suffer some effects from your surgeries? What are they? Did your tumors ever bleed like mine may have? The bleeding is kinda freaky to me and it makes me grateful this thing is in my neck and not closer to my brain or in it.

Thanks so much and take care. Keep us posted on your new situation. You're in my thoughs.

Ali

[Jeff]

Your story raises some questions. What was the placement of the tumors that you had removed? How long was the recovery? Would you recommend that I request a full spinal cord scan if this turns out to be a neurofibroma when they complete the pathology? Do you you still suffer some effects from your surgeries? What are they? Did your tumors ever bleed like mine may have? The bleeding is kinda freaky to me and it makes me grateful this thing is in my neck and not closer to my brain or in it.

Thanks so much and take care. Keep us posted on your new situation. You're in my thoughs.

Ali

I had surgery on the same AN twice. When I was diagnosed, it was large and cystic, which my doctor says is not unusual for these tumors. The first surgery was to relieve the pressure on my brain and attempt to preserve my hearing (unsuccessful). The second was to remove the remainder of the tumor and put in a hearing device called an auditory brainstem implant. I also have an acoustic neroma on my left side that is 3.3 cm. Both tumors extend(ed) from the internal auditory canal into the cp angle...pretty much your averages AN's.

In terms of effects from surgery,  I have much to be thankful for. I did lose my hearing on the right as a result of my surgeries, but I have no facial nerve damage at all. My right eye is very dry, but that is bearable. The only other problem that I have at this point is poor balance, and I understand that it will not improve much.

I'll let you know what I find out from the doc next week.

I hope I have helped to answer your questions. Thank you for the kind words.

Jeff