Author Topic: NF1?  (Read 4872 times)

DizzyMamaIL

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NF1?
« on: March 04, 2016, 01:11:48 pm »
I am curious if anyone has experience with NF1? I have bumps on my left shoulder and in my left armpit and have for way longer than I've had the dx of my AN on my left side as well. The bumps were diagnosed as fatty cysts by family practice doctors multiple times over the years. I mentioned them to the neurologist mainly because I thought they might be related to holding my cell phone to my left ear with my left shoulder all the time before the hearing loss. He started asking about cafe su lait spots, which I don't have. I didn't know what he was looking for until later Internet research. My 5-year-old son has an osteochondroma just above his knee. I see abnormal bone growth is also a symptom of nf1. Does it seem possible that I have nf1 with no presentation until adulthood? I will ask my doctors (and my son's doctors), of course, but curious if anyone else has any experience with this.
February 2012 - first doctor visit for vertigo
January 2015 - sudden hearing loss
January 2016 - dx AN 1.1 cm x 2 cm
May 2016 - radiation; June 2016 to present - headaches, vertigo; October 2016 - one episode of facial paralysis

Cheryl R

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Re: NF1?
« Reply #1 on: March 05, 2016, 08:57:32 am »
I have NF2 but can tell you that you do not have NF1.        I am not the best on explaining it.   A good place for info is
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

DizzyMamaIL

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Re: NF1?
« Reply #2 on: March 05, 2016, 11:53:55 am »
Link must be missing. I have googled it and there are many criteria that don't fit, but when the neurologist told me the bump on my shoulder was almost certainly a subcutaneous neuroma and asked me about cafe au lait spots, that is obviously what he was looking for, at a possibility of nf1. I still think it might be more likely that cell phones and cordless phones have something to do with it...but that doesn't explain my son's osteochondroma.
February 2012 - first doctor visit for vertigo
January 2015 - sudden hearing loss
January 2016 - dx AN 1.1 cm x 2 cm
May 2016 - radiation; June 2016 to present - headaches, vertigo; October 2016 - one episode of facial paralysis

CHD63

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Re: NF1?
« Reply #3 on: March 05, 2016, 02:16:41 pm »
Hi there .....

Sometimes links will drop off if you type something else after it.  Not sure why.  I think this may be the link she was trying to post (Children's Tumor Foundation):

http://www.ctf.org/

Hope this helps.  Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

kellyaus

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Re: NF1?
« Reply #4 on: July 31, 2016, 12:39:38 am »
Hello - i have NF1 - was diagnosed a few years ago, i was 31. It has not affected my life in any way. i have numerous large cafe a lait marks and over time, a few neurofibroma's. Was never really sure what they were, Dr's just passed them off as nothing to worry about. It wasn't until i fell pregnant & having changes in my hormones that more showed up. Particular on my lower back & bottom. There is no family history of this condition in my family until now, lucky me! Sadly i have passed this onto my children as well but they are seeing an eye specialist and pediatrician yearly. My eldest son has just started school he is 5 1/2 and i am monitoring his learning, particularly his motor skills as everything else seems to be fine.
I too am wondering if NF1 is at all related to AN - did you have an AN? Have you been tested for NF1? My Dr told me you need to have these cafe a lait markings as that is a main diagnosing factor.  From the information i have read, NF1 & NF2 are not really related at all despite the name!

Director

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Re: NF1?
« Reply #5 on: August 01, 2016, 01:25:16 pm »
Hi Kellyaus,

 I was on this website last week and it gives some clear explanations about NF: http://www.nfmidatlantic.org/.
Best,
Allison Feldman
CEO, ANA

kellyaus

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Re: NF1?
« Reply #6 on: August 01, 2016, 05:29:53 pm »
Thanks Allison - i am pretty up to speed with the NF1 side of things as far as the issues surrounding it. My question was more relating to whether anyone with NF1 was having hearing issues (or AN), it could be completely coincidental that i have NF & hearing problems. I realise a lot of people can have an AN with out NF2. Thanks for the info.

DizzyMamaIL

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Re: NF1?
« Reply #7 on: November 03, 2016, 08:48:39 pm »
My concerns about NF1 have sort of been pushed to a back burner due to all the problems my AN is giving me. I don't have the marks, but I've read they can be so light you can't see them. After my main problems are dealt with, the doc plans to remove the lump on my shoulder to see what it is for sure. Sorry I haven't been visiting the forum for awhile. I wanted to be a success story.
February 2012 - first doctor visit for vertigo
January 2015 - sudden hearing loss
January 2016 - dx AN 1.1 cm x 2 cm
May 2016 - radiation; June 2016 to present - headaches, vertigo; October 2016 - one episode of facial paralysis

Susan A

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Re: NF1?
« Reply #8 on: November 11, 2016, 01:47:17 pm »
Thanks for the update DizzyMama!
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

 


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