NF2 - Advice

[tony]

This is one of all the NF2`s on the list.
The suggestion is that it might be a good idea to be on a regular check up
Say 12-24 months apart. Within this checkup procedure it would be a good idea to have a full spinal MRI - two years apart (?) and if, not a decent physical exam where someone else independently checks your body responses and strengths left side vs right side.
Why
Most on this list understand ANs on the hearing/facial/balance nerves
But with NF2 it is also possible to get them elsewhere – perhaps the spinal column area being the most likely (though still quite rare).
The actual speed at which any version of NF2 will affect you is very hard to predict and no two cases are ever quite identical.
If you have the regular checkups – a qualified third party can make an independent assessment- better safe than sorry ?
Just a suggestion
stay well and stay lucky
Best regards
Tony

[Dealy]

Tony- I have you there. I do not know if you saw one of my latest posts or not. If you remember my feet have been going numb and I urinate constantly. Went to my local doctor (if you can call him that) and he said it was caused by the AN firing unspecified nerves. Institituition where I got my FSR says no way. So I seen a Uriologist this past week (had to start somewhere) he orders a back scan and Ultrasound on bladder-kidneys etc. Test results-said I have Spinal Stenosis from a previous back injury. Man my wife and I both thought it was a NF2 tumor on my spine. The only trouble in our small town-Doctors no nothing about AN's and especially NF2's. I actually have to tell my doctor what to look for and do when it comes to my AN. He says they were never trained in medical school. Felt like saying-well would you not like to learn something-but I am not a smart aleck. I did tell my ENT that I  learn more on this group then I do from him or other doctors. So I will take your advice and get yearly check-ups. The trouble is-from who. Thanks for the input though. Ron-(ANOTHER NF2).

[tony]

Hope its OK for you - generally its best with NF2 to deal with those
who know - a specialist NF2 clinic for example
(also the neck/spine ones are very hard to spot - they missed mine 1st time)
To give you some idea just how rare - I met a jnr Doc who had been
running NF2 clinics for 2 yrs - I was his 30th(?) patient....
Its quite possible to meet quite senoir medical people
who have never met an NF2 - Let alone treated one...
(a junior tried to offer advice - when I was the first patient they had ever seen
- I walked out in about 90 secs and didnt go back....)
If you are USA side - you might checkout the "NF2 Crew" online
they may have some suggestions
(any issues, drop me a private note - I know one of the organisers)
best regards
tony

[Jeff]

Your advice is great Tony. I recently had a full spinal MRI and unfortunately many spinal tumors were found where none were 2 1/2 years ago. Currently most are very small and may never be a problem, but I will certainly have periodic scans to check them. I would echo your advice for NF2 patients to have regular checks.
Jeff

[tony]

Yes - sorry to hear of your troubles
the spinal ones can usually be left some while
- and may never actually cause a problem
(and a debulk is much easier there than in the skull etc)
meantime a good idea to keep fit - and regular check ups
best regards
tony

[antoinette]

Hi Tony.
Keeping fit should be for everyone even if the disease is only time passing faster than we pay attention.
Where else can NF2 tumors elect to sprout? Is there some predilection to be along the most important nerves?
So the cranium and the spine would be first to grow them.
Is it possible to confuse these tumors with other ailments
Thanks for a good start-up in NF2 info.
antoinette

[tony]

Welcome back antionette !
One should be careful with NF2 - the condition is so varied
"gardener vs wishart" etc that being too definate can be misleading
In the case of NF2 theroetically a tumour can start anywhere
where the are nerve sheath cells "schwanova cells"
However the accoustic type are easily the most common
(if "common" is the right term where 1 in 40,000 get the condition ?)
with spinal tumours in second place
After this some get skin type tumours (but very rare)
others have problems in other key nerve areas
In all it, most depends on the speed/growth rate of your own
condition as to how many you might see
Some folks in the 70`s number 2-3 only
while I know of  30 something in the states with 20 tumours
in the one skull (in-operable doesnt cover it really...)
I wonder at the value of a medical term that is so wide one case to another
Anyhow, thats why close a regular inspection makes sense
best regards
tony