AN & Spinal tumors

[Mary 117]

I just read the thread on NF2 and saw a few comments relating to spinal tumors. I may be really paranoid but can anyone tell me what the spinal tumors look/feel like? I had AN surgery 5/24/05 and have recovered really well. Last summer I noticed a lump on my lower spine. I asked my internist at my regular "let's check your blood pressure" exam,  and she said don't worry it's just a little lump. Well, I was told for a year that the pain in my head was just stress and I should get a massage, so I might just be a little nervous. It seems to be growing slowly and I can feel it when I press on my spine. Anyone have any ideas?

Thanks for everyone who takes time to post on this site. I don't respond often but it sure makes me feel so not alone. It's like comfort food for my thoughts.

Mary
2cm Middle fossa Dr Brackmann 5/24/05

[tony]

I understand your worries
firstly there is no clear reason to suspect you are NF2 - only "might be" at this stage
It could just be a cyst or similar
NF2 lumps start small and grow out of nerve tissue
- there is a skin lump version but it is VERY rare
(a skin type lump is unlikely to cause a headache)
A clue might be in your body complextion
- if you have many coffee type spots - 50 plus
about the size of a finger nail - then maybe
There are two ways at this stage to check
An experianced NF2 type doc or nurse can do a full body examination
checking the feelings/strengths/responses for all the main limbs etc
a weakness or lack of sensation may warrant further investigation
The other way is to get a full spinal MRI -
the normal MRI stops at the neck
you have to ask for full spine the next time they are doing it
If symptoms persist and the doc seems not to understand
it maybe worthwhile finding a doc that has direct NF2 experiance
its so rare - many are just quoting from med school
My suggestion is to keep an eye on things
maybe move to an annual check up with someone
who knows what to look for
Best Regards
Tony

[Dealy]

I am an NF2 so I will chime in with your concern-also Tony gave some good advice. These tumors do not usually cause lumps as Tony says. If you are worried too the point of wanting some medical answers-if your insurance will pay-you may want too ask for a nerve conduction test. This is very simple and not that expensive. Like Tony said-most likely a cyst. My wife has one on her back that is the size of an egg. Does not hurt-and too our knowledge she does not have an Acoustic Neuroma. However-it may be prudent too keep watch. Better safe then sorry. Best Wishes_ron

[Mary 117]

Thanks for the advice. I wasn't all that worried before and your posts make it pretty clear that it isn't related to the AN tumor. I go for my 2 year post-op checkup in a couple of months so will ask the Dr at that time.
Thanks for the help.

Mary
2cm Middle fossa Dr Brackmann 5/24/05

[hgtvqueen]

We found our daughter's spinal cord tumors before her AN's were discovered.  In fact, had it not been the SC tumors giving her backaches, we might never have found the AN.  Her hearing is still good in both ears.  Had the smaller AN removed at House a couple of months ago.  Have an MRI  for peace of mind.

[Omaschwannoma]

Reading this thread as "spinal tumors" caught my eye.  Is it possible an x-ray showing cervical bone spur might be mistaken for a spinal tumor?  I had AN surgery in 2005 and was diagnosed with cervical bone spur many years prior.  I do have considerable weakness, tingling in my left (dominant hand) arm and hand.  I do understand "anything is possible", but I am wondering if a spinal tumor can be mistaken for bone spur.  I am due for follow-up MRI end of this year and thought I might mention they do MRI also of my spine if warranted.

[Timjk]

  I have NF2.. I am 52 years old and was just diagnosed this past November. One major symptom that hasn't been mentioned here for NF2 is the AN tumors are bilateral.. both sides.. I was first diagnosed in November due to a lumbar MRI for sciatic pain. I have 3 large tumors on my lower spine (3 CM up to 4.5 CM ).. The AN's were found thru a brain MRI in December. If you only have the AN on one side, chances are you do not have NF2...

Tim

[Mark H]

I'm another. 53, with the AN's diagnosed last year. Very small, about 2mm on each side. I also have bilateral neurofibromas at the C1-2 level extending to the spinal canal, but so far causing no problems. I just keep an eye on things and don't worry about what might happen in the future, 'cause who knows? Everything might just stay nice and small and I'll never have to do anything about it. The tinnitus and balance problems I do have don't bother me too much 'cause they've been around for years and I'm kinda used to them.
Mark

[Windsong]

I'm having  a full spinal mri next week, to check what's going on since my last one and also this time including the lumbar area which wasn't done first time around, so I'm crossing my fingers nothing new will show up....and there will be no sign of nf2 or anything more than i already know about....cord compression, a benign tumour and buncha other stuff...

[Sue]

My son has had several "fatty tumor/lumps removed from his back and his legs.  He is a slender man and they show up on him and bother him.  One was right near his spine in his lower back.  They are quite common and many people have them but don't know they have them if they are built bigger/fatter than my son is. I don't know what you have, but it may be something simple and benign as this. I don't know what they are called in medical language...but they just are clumps of fat.

Sue in Vancouver WA USA

[Mark]

Sue,

The fatty tumors I believe are known as Lipoma's and are typically harmless, I've had a couple of them removed over the years.

Mark

[NF-2er]

 Hi;

   I have the spinal tumors associated with NF-2. There are 10 little 'BB' size spots showing in the lower portion ( cauda equina ) of the spine on MRI. They are not external as the fatty tumors at all.
   Of one concern is not the size of the individual spinal tumor but the total amount of spinal fluid which is blocked.
   The internal spinal, NF-2 type schwannomas need be watched closely!
   Were always on the look out for "cauda equina syndorome". Of course if the internal tumors are higher, then something else could potentially be affected.
   Best wishes!

[barbjo]

NF2 has been thrown out alot around me, but no doctors have given me a definate one way or the other.  Ten years ago I had a sizeable spinal tumor removed, taking me 7 months to learn to walk unassisted.  Three years ago I had a acoutic neuroma removed.  What are the test for NF2?  I am worried, as I feel the "other shoe" will drop on me again.
Thanks!  Barb