Schwannoma/Neuroma

[Linda Thomas]

I would appreciate information about the following:
What is the difference between a neuroma and a Schannoma?  If a person is experiencing neuropathy in the peroneal nerve which is likely caused by a neuroma or a Schwannoma, what is the recommended treatment?  Also, if surgery is the recommended treatment, what risks are entailed in operating on the peroneal nerve?  
Thank you for your assistance.

[Nancy Knowlton]

I need info on schwannomas.  About 18 years ago, I had a schwannoma excised from under my tongue.  I seem to have it again, this time on the left side.  It hurts and irritates my left ear.  I can't locate the doc I saw; he may have retired.  Can you tell me if this is really a schwannoma, or what.

About five or six years ago, the roof of my mouth erupted in blisters.  That lasted about one month, and was treated with a numbing medicine I rinsed my mouth out with.  Can these two things be related?

I'd appreciate any info.

Thanks.

[Christine Jenkins to NJK]

Dear NJK,

I think I may be able to clear things up a bit.  As I have said before, I am not a physician, just someone who has been dealing with schwannoma for years and years.

First, schwannoma can grow pretty much just about anywhere.  Why?  Because they are created by your own schwann cells and schwann cells are what your myelin sheath is all about.  Without them, your nerves wouldn't have any protection at all.  In the case of the stupid schwannoma, those cells zeroed in on a spot and conglomerated, so to speak.   Some are merely isolated and solitary, while others are networks of various sizes and lengths.

If a schwannoma is growing in or about your ear, it will itch... and itch for years because the nature of the tumor is that it grows s-l-o-w-l-y.  You can feel them in the tissue between the skin and bone.  They usually don't hurt until they press against larger nerves because the cells either spindle around the nerve or adhere as a bump on the side of it.  In either case, you have a tumor no matter what.  And they are benign unless they are threatening vital stuff like carotid arteries and such.

I hope this clears up your questions.  Like I said in previous posts... I'm not a physician, just a patient who has a strong belief in plenty of "educational understanding".  Good luck.  My email address is ***@**** if you want to clear up any more questions regarding schwannoma.

Sincerely,

Christine Jenkins

[njk]

I have been trying to find out info on schwannomas for some time.  About 18 years ago, I had a tumor under my tongue.  The oncologist said that it was a schwannoma and benign.  After surgery to excise it, the doctor told me there was a good chance that it would return.

About a month ago, I noticed another growth, this time on the side of my tongue.  I have an up-coming doctor's appt., but, like I said, I wanted to do more research on my own.

I guess my question is this:  from the info I have read, schwannomas usually occur in the brain.  I have also read accounts of them in the ear, but nothing about it showing up on tongues.  Was the doctor wrong?  This growth does seem to have a direct connection to my left ear (also the side of the tongue affected), which has been giving me problems (mostly itching) for years.  

Is there anyone out there that can help?  Thanks.  njk

[nancy]

Four years ago I had major Septoplasty. After the surgery the whole roof of my mouth was numb.  Two months later I felt a funny vibrating sensation in the right side of my septum.  I complained of the sensation, something felt like it had to come out.  Three months later he cauterized the right side, inside of my nose.  One week later I developed a strange sensation in my mouth behind my two front teeth, more on the right side of the papilla area.  As the months went by it developed into burning pain, constant.  Touching the roof of my mouth when I spoke made the problem worse.  The sensation went up into the right side of my septum.  I have been living with this horrible sensation and pain for almost 4 years. I have tried every med there is.  Effexor seems to work somewhat.  I do not want to be on this med, the side effects hit me hard. In all this time there has been little improvement if any. The vibration sensation is gone and some of the burning pain.  But it is very sore behind my two front teeth, I can't touch it.  It makes it very difficult to speak and eat.  This continues up to the septum. And I feel like there is still something in there that has to come out.

A couple of ENT doctors seem to think it may be a neuroma.  They want to cut the septum and see what happens.  There is a small area on the septum that is projecting out, there is a white spot on that cartilage.  When you touch it, it feels sharp or rough, not smooth, but it does not hurt.

My pain Dr. injected nerve blocks, into the septum area, but the pain persisted.  

My question is have you ever heard of this?  Do you think this surgery can fix my problem?  Can it make my problem worse?

Do you have any suggestions or know where I can turn.  I will go to the ends of the earth to find someone who can help me.  This is very hideous, very depressing, like a slow death. I have been to all kinds of Drs. and had mri's. But as you know it is hard to see this small area.
It is the naso-palatine nerve that hurts.  The mri's show no inflammation.

Please help.
Desperate
Nancy

[bari klirsfeld]

i have a schwannomanext to the 7th vertibre at the level of the kidney.  I have a burning sensation up and down my back going into my head.  Its almost like a sensation that is hard to describe.  Does this sound like the tumor is causing this symptom?  do you recommend removal?

[nancy]

Hi Doctor,
For almost 4 years I have been suffering from constant pain in the papilla area in the roof of my mouth, behind my two front teeth, on the right side.
It goes up to the right side of my septum. It's hard to speak or eat.  The more I speak the worse it feels.  It's maddening. I had surgery on my nose.
Septoplasty.  It happened after this.

I cannot be on meds any longer, I have tried everything, you name it.
I am considering Septoplasty again, to possibly fix the problem, some ENT's say it may be a neuroma on my septum.  I am afraid that this problem may become worse, with the surgery.   In my spetum I feel a small rough edge, that feels like it has to come out, I blow my nose all the time because of this sensation, but of course nothing is there. The more I try to get rid of the feeling in my nose the worse the pain in my mouth is.  Ever heard of this?  Do you think surgery can correct this?  Is my nasoplatine nerve going to die because I have been living with this problem for so long.
Thank you
Nancy