Author Topic: Is it likely I have NF2?  (Read 8569 times)

Louise UK

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Is it likely I have NF2?
« on: August 22, 2016, 01:45:57 am »
I haven't been on this forum for a few years now, as I wanted to try and move on with my life. Basically, I had partial resection of a large AN and the remainder GK'd. Both were done in 2009. I've had annual MRI's since, to check if the remaining bit is stable, which it has been. My most recent MRI was back in March this year, still all fine. The reason I've come back to this forum is I've had problems with my upper left shoulder blade area on my back for years, approximately 7-10. Very achy, and I've had decreased sensation in that area for years too. In the last 6 months or so, I've started to have a pins and needles, crawling, tingly sensation there, which makes its way down the side of my body. It has started to creep over to the right side too. I've been to see an orthopaedic surgeon, who said it sounds postural. He did refer on to a neurologist, to be thorough. I saw the neurologist, who I told about my AN etc. He did say it is probably postural but NF2 is potentially a possibility! So he will want an MRI of my spine. Thing is I was worried about NF2 years ago and wrote to my neurosurgeon, who put my mind at rest as he said it was highly unlikely that I have NF2. As I only have one AN and no family history. Could another AN take years to appear though? Plus do people have two AN's first and then spinal tumours appear? Can anyone offer any advice. Also my arms sometimes feet tingly, I don't know if that is anxiety though, as I am such a worrier.
Sorry for the long post,
Louise x

Louise UK

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Re: Is it likely I have NF2?
« Reply #1 on: August 22, 2016, 01:20:33 pm »


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Re: Is it likely I have NF2?
« Reply #2 on: August 23, 2016, 04:34:06 pm »
Probably unlikely but I really have no idea. I don't have your symptoms but I have wondered the same thing. Maybe go to an NF2 site?
12/2013 5mmx4mmx4mm left
tinnitus, w&w
5/2015 7mm-louder tinnitus, occasional dizziness
retro sigmoid 11/2015

Susan A

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Re: Is it likely I have NF2?
« Reply #3 on: August 27, 2016, 08:43:27 pm »
Hi Louise! Looking back through your older posts, it looks as though you were pretty young to be diagnosed with an AN and that's why NF2 was mentioned in the first place as a possibility.

I don't want to worry you, but if you have the opportunity for a spinal MRI, I'd say do it. Yes, it can take years for a second AN to develop, if it ever does. I've heard of cases where the second AN appeared 10 to 15 years after the first one was found. In 'mosaic' cases of NF2 (not in every cell in the body) there is sometimes only 1 AN. I have only 1 AN, discovered in 2011 when I was 50 , with no signs of another. A year later they found a tiny spinal meningioma - barely 1 mm. Now, 4 years on, it is 5mm, but not bothering me at all. This year they also found multiple tiny (1mm) lesions at the base of my spine (also not bothering me.) I had one meningioma when I was first diagnosed. It was removed last year, but I have 3 others that have appeared since 2011.

The chances are good that you DON'T have NF2, but if the doctor suspects it, let them do as thorough a workup as possible to eliminate that as a possibility! If you do have it, there is a really good chance that it's mosaic, which is good. IF you do have it, you need to make sure that you get referred to one of the NF2 centers in the UK.
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA