My mom told me I had NF when I was really young, probably 5 or 6 years old (just turned 29 4-14-12). She explained I had NF when I asked why I was sooo freckly. She also has NF and a lot of freckling, but many of her fibromas are external. Nothing was ever said about it for years.
When I was 8 or 9 there was a fire down the street, and being kids, we all ran to check it out, and on my way running to the scene, I skid my toe on the road, obseved my pitiful cut and that's when I noticed a big bump on my toe for the first time. Didn't think anything of it, t hought I hurt it, but it never went away. Just thought 'whatever'.
When I was 13 or so, I was at the doctor's office with my older brother. He was sick. My mom and I were in the examination room with him. (He was maybe 15). The doctor came in and gasped to my bro and me "YOU HAVE NEUROFIBROMATOSIS!" that was the first time I heard about it since my mom told me I had it. Whatever...so I had this neurofibromatosis. I thought the only characteristic was the freckling and maybe 'outer bumps' as I called it then.
OK so then when I was 14, I woke up in the most excruciating pain I've ever been in. I felt a huge tightness on my neck and my entire right arm was tight. It was maybe 2 am, and I picked up my CoverGirl compact makeup thingy that had a mirror so I can look to see what was wrong with my neck. Two problems:
1) I couldn't see the mirror I had in front of me because my neck was twisted so badly and
2) Moving my arm made my neck hurt worse.
It was more than having a 'crick' in my neck- I couldn't move my fingers on my right hand. I couldn't move my arm. I of course couldn't move my neck. I stayed home from school for a couple of days, and when I slowly got better, my neck has never been the same. I still think it's a tiny little bit twisted!
That's when my neck pains started. I always needed my neck rubbed, and this has continued. I mean, when people rubbed it (or I should say 'massage' it), it wasn't just a rub, in order for me to feel ANY relief from this discomfort (and it still remains this way TO THIS DAY), people have to GRAB the nape of my neck, like really pull the skin away from my neck. People's hands would hurt rubbing because even GRABBING this skin did not provide me much relief.
It got worse about a year later, my freshman year in high school when my face started to hurt as well, especially in my jaw. I remember coming home from school with the worst migraines. I remember having deep pains on the right side of my head, especially around my temple. And then my jaw started hurting REALLY BADLY.
Thought I had a bad toothache. I went to the dentist and had an x ray. My wisdom teeth were impacted to they suggested oral surgery. I went for a consultation, and I guess the dentist saw something weird in the x-ray they did, because he sent me to one of his partners on the opposite end of town to get a second opinion. He sent me to their OTHER partner for a THIRD opinion. They were unanimous- something was weird, get a CT scan.
I was in 10th grade by this time. I had a CT scan. I remember this day. It sucked. I had to lay on my chin for about 30 minutes. Very uncomfortable. The CT scan showed something abdnormal, so I had to get an MRI. And that's when I learned what NF really meant.
So the reason for my jaw pain was neurofibromatosis. But as much as I was told about it, I was still pretty uninformed. It was my understanding there was one on my brain, one under my eye, affecting my upper jaw and temple, one on my lower jaw, under my ear. I'll explain where they really are later. But no oral surgeon would do the surgery because they were afraid the tumor would grow out of my mouth and cause problems even if they cut what they could out. It's a plexiform NFma, so they grow back- makes sense.
Had an MRI a year later to make sure there was no major difference- there wasn't and so all was forgotten.
But I still had headaches- major headaches, I still had jaw problems. So I thought it was normal. Never saw a neurologist again.
I thought I again had a toothache my first year in college, 2 years had passed since my last MRI by then, and I went to a DIFFERENT oral surgeon office because I thought a tooth needed to be pulled. Turned out, my impacted wisdom teeth were bad, so without preparation, the dentist wanted to take all 5 out that day- thought I was just going for a consultation, he told me not to bother to "just get it overwith"- so I did, but I was worried since the other doctors wouldn't do it. He said he knew how to deal with it if the tumor 'grew out of my mouth'
After the surgery, as loopy as I was, I ASKED about my tumor and he said that some DID grow out of my mouth, but he took care of it. TOOK ME FOREVER TO RECOVER from this surgery. I couldn't eat for a month. It was bad. Anyway, still no talk about NF or the tumors I had.
My lower abdominal pains began in 2004 or so, and I was told it was probably a cyst in my ovary, and when the pains continued and no cyst was found again, my gyno doc suggested MAYBE it was from NF, but no referral for a followup...
I didn't think about NF at all, even though I still had NF headaches, lower abdominal pains that may or may not be NF, etc. I Graduated from college in '05, got engaged, lived in China for a year, abdominal pains still bad, blah blah blah
Came home from China, moved to SC with my fiance. I hadn't had my eyes checked in years, so I went to the Wal Mart optometrist to get my eyes examined. The doctor was a bit freaked out abotu waht she saw during the examination and recommended I see a neurologist. I didn't have health insurance, and told her I knew I had a tumor on my brain,but I'd see one as soon as I got insurance. Oh and by the way- my abdominal pains were still pretty bad. Life went on in good ol South Carolina.
That was November 2007- getting insurance didn't happen til August (same year) when we got married and moved to Boston. My husband found a neurologist at Mass Gen that SPECIALIZED in NF- how lucky! Got an appointment for December. And that's when I finally learned everything:
My facial tumor(s) were NOT under my eye, under my jaw, under my ear etc. It was ONE single tumor mass that wrapped around my entire facial cavity, and even slightly around my neck (which explains my neck incident from when I was 14). It is a mass with about 20 or so spider like legs. I thought the tumor part under my eye affected my vision, no, it was the one on my brain (though that that's a duh but I wasn't a med major). My facial tumor wraps around my sinuses, my upper nasal area, my temple, my jaw, neck, etc. One mass. And my brain tumor? Try brain TUMORS. One is an optical glioma that puts pressure on my nerve. One is Optic atrophy- that is EATING my optic nerve.
I get MRIs every 2 years now to monitor the optic atrophy- but the last few I had, there have been no difference. I see a neuroopthamologist for the optic tumors and get tests to make sure nothing in my vision has changed. I am partly afraid of these appointments because he has to dig around near my eyes and well, I have severe, involuntary spasms when anybody goes near my eyes.
Last year I was told I lost a chunk of field of vision at my 2011 appt but they would not confirm or deny it- it could have been the way the test was done or it could have been something else. I still do not know what is goign on with that but will definitely keep everybody posted.
Anyway, I also learned my bump on my toe is a tumor (I had since named him Bob) and many other 'Bobs' grew since- I'll explain in another blog where they are.
I also learned NF is the reason why I AM SO DAMN SHORT- just under 5 foot tall. It sucks. I hate being short :)
I don't have hearing issues, though I do have tinnitis. I don't have scoliosis.
Since I've been in grad school (started in September this year) I've noticed I'm slow at a lot of things (well I felt that way in high school and college but ignored it) and soon I will be tested for NF related learning disabilities. HS was not easy for me, and I did REALLY REALLY well in college- I think it's because my learning environment was better- I fucking hated the school system I went through before college (minus a few teachers I loved and still love).
My abdominal pains have also NOT gone away. In 2009 I had a few tests to figure out why, no answer, but they DID find cancer in my upper stomach area- that was taken care of with surgery, which is a whole other story, but my pains have been progressively worse since June. Had several MRIs, a PET scan, etc- long story short I have a tumor in my retroperitoneum (which explains all the lower left ab pains!) and a couple in my right abdominal wall. Hoping I can get the retroperitoneum one removed- process will be complicated. But it has been annoyign for me because since these pains were in my lower abdomen, I kept going to my gynecologist who didn't see anything and told me it could be stress, and I went to a gastroenterologist who told me nothing was there so I most likely had IBS. It's definitely all BS now since I have physical evidence of a TUMOR causing the pain and the pain has been so bad it has constricted my leg muscles (on the left side) to the point where I need physical therapy!
Anyway-
Now there's so much info online, but when I was a teenager, I knew nothing! Anyway, that's my story of how I found out, and how I'm still learning about its affects now.
(added October 5, 2011)
My retroperitoneal tumor WAS removed, and aside from some sensory nerve damage, the pain on that side is GONE. Not celebrating since I still have pain on my right side. i wrote the above story (part 1 and 2) in February when I was first told the tumor was found, and since then, especially in April, pain commenced on my right side. I was told this was referred pain from my left tumor and that the pain would go away after surgery. Welll, it has not gone away. Later, I was vindicated when a tumor was found in my right piriformis muscle. More than likely, when my body gets ready to ovulate, the pressure of ovulation on my ovaries and uterus presses down on the troubled nerve tumor, causing the pain.
When I was 8 or 9 there was a fire down the street, and being kids, we all ran to check it out, and on my way running to the scene, I skid my toe on the road, obseved my pitiful cut and that's when I noticed a big bump on my toe for the first time. Didn't think anything of it, t hought I hurt it, but it never went away. Just thought 'whatever'.
When I was 13 or so, I was at the doctor's office with my older brother. He was sick. My mom and I were in the examination room with him. (He was maybe 15). The doctor came in and gasped to my bro and me "YOU HAVE NEUROFIBROMATOSIS!" that was the first time I heard about it since my mom told me I had it. Whatever...so I had this neurofibromatosis. I thought the only characteristic was the freckling and maybe 'outer bumps' as I called it then.
OK so then when I was 14, I woke up in the most excruciating pain I've ever been in. I felt a huge tightness on my neck and my entire right arm was tight. It was maybe 2 am, and I picked up my CoverGirl compact makeup thingy that had a mirror so I can look to see what was wrong with my neck. Two problems:
1) I couldn't see the mirror I had in front of me because my neck was twisted so badly and
2) Moving my arm made my neck hurt worse.
It was more than having a 'crick' in my neck- I couldn't move my fingers on my right hand. I couldn't move my arm. I of course couldn't move my neck. I stayed home from school for a couple of days, and when I slowly got better, my neck has never been the same. I still think it's a tiny little bit twisted!
That's when my neck pains started. I always needed my neck rubbed, and this has continued. I mean, when people rubbed it (or I should say 'massage' it), it wasn't just a rub, in order for me to feel ANY relief from this discomfort (and it still remains this way TO THIS DAY), people have to GRAB the nape of my neck, like really pull the skin away from my neck. People's hands would hurt rubbing because even GRABBING this skin did not provide me much relief.
It got worse about a year later, my freshman year in high school when my face started to hurt as well, especially in my jaw. I remember coming home from school with the worst migraines. I remember having deep pains on the right side of my head, especially around my temple. And then my jaw started hurting REALLY BADLY.
Thought I had a bad toothache. I went to the dentist and had an x ray. My wisdom teeth were impacted to they suggested oral surgery. I went for a consultation, and I guess the dentist saw something weird in the x-ray they did, because he sent me to one of his partners on the opposite end of town to get a second opinion. He sent me to their OTHER partner for a THIRD opinion. They were unanimous- something was weird, get a CT scan.
I was in 10th grade by this time. I had a CT scan. I remember this day. It sucked. I had to lay on my chin for about 30 minutes. Very uncomfortable. The CT scan showed something abdnormal, so I had to get an MRI. And that's when I learned what NF really meant.
So the reason for my jaw pain was neurofibromatosis. But as much as I was told about it, I was still pretty uninformed. It was my understanding there was one on my brain, one under my eye, affecting my upper jaw and temple, one on my lower jaw, under my ear. I'll explain where they really are later. But no oral surgeon would do the surgery because they were afraid the tumor would grow out of my mouth and cause problems even if they cut what they could out. It's a plexiform NFma, so they grow back- makes sense.
Had an MRI a year later to make sure there was no major difference- there wasn't and so all was forgotten.
But I still had headaches- major headaches, I still had jaw problems. So I thought it was normal. Never saw a neurologist again.
I thought I again had a toothache my first year in college, 2 years had passed since my last MRI by then, and I went to a DIFFERENT oral surgeon office because I thought a tooth needed to be pulled. Turned out, my impacted wisdom teeth were bad, so without preparation, the dentist wanted to take all 5 out that day- thought I was just going for a consultation, he told me not to bother to "just get it overwith"- so I did, but I was worried since the other doctors wouldn't do it. He said he knew how to deal with it if the tumor 'grew out of my mouth'
After the surgery, as loopy as I was, I ASKED about my tumor and he said that some DID grow out of my mouth, but he took care of it. TOOK ME FOREVER TO RECOVER from this surgery. I couldn't eat for a month. It was bad. Anyway, still no talk about NF or the tumors I had.
My lower abdominal pains began in 2004 or so, and I was told it was probably a cyst in my ovary, and when the pains continued and no cyst was found again, my gyno doc suggested MAYBE it was from NF, but no referral for a followup...
I didn't think about NF at all, even though I still had NF headaches, lower abdominal pains that may or may not be NF, etc. I Graduated from college in '05, got engaged, lived in China for a year, abdominal pains still bad, blah blah blah
Came home from China, moved to SC with my fiance. I hadn't had my eyes checked in years, so I went to the Wal Mart optometrist to get my eyes examined. The doctor was a bit freaked out abotu waht she saw during the examination and recommended I see a neurologist. I didn't have health insurance, and told her I knew I had a tumor on my brain,but I'd see one as soon as I got insurance. Oh and by the way- my abdominal pains were still pretty bad. Life went on in good ol South Carolina.
That was November 2007- getting insurance didn't happen til August (same year) when we got married and moved to Boston. My husband found a neurologist at Mass Gen that SPECIALIZED in NF- how lucky! Got an appointment for December. And that's when I finally learned everything:
My facial tumor(s) were NOT under my eye, under my jaw, under my ear etc. It was ONE single tumor mass that wrapped around my entire facial cavity, and even slightly around my neck (which explains my neck incident from when I was 14). It is a mass with about 20 or so spider like legs. I thought the tumor part under my eye affected my vision, no, it was the one on my brain (though that that's a duh but I wasn't a med major). My facial tumor wraps around my sinuses, my upper nasal area, my temple, my jaw, neck, etc. One mass. And my brain tumor? Try brain TUMORS. One is an optical glioma that puts pressure on my nerve. One is Optic atrophy- that is EATING my optic nerve.
I get MRIs every 2 years now to monitor the optic atrophy- but the last few I had, there have been no difference. I see a neuroopthamologist for the optic tumors and get tests to make sure nothing in my vision has changed. I am partly afraid of these appointments because he has to dig around near my eyes and well, I have severe, involuntary spasms when anybody goes near my eyes.
Last year I was told I lost a chunk of field of vision at my 2011 appt but they would not confirm or deny it- it could have been the way the test was done or it could have been something else. I still do not know what is goign on with that but will definitely keep everybody posted.
Anyway, I also learned my bump on my toe is a tumor (I had since named him Bob) and many other 'Bobs' grew since- I'll explain in another blog where they are.
I also learned NF is the reason why I AM SO DAMN SHORT- just under 5 foot tall. It sucks. I hate being short :)
I don't have hearing issues, though I do have tinnitis. I don't have scoliosis.
Since I've been in grad school (started in September this year) I've noticed I'm slow at a lot of things (well I felt that way in high school and college but ignored it) and soon I will be tested for NF related learning disabilities. HS was not easy for me, and I did REALLY REALLY well in college- I think it's because my learning environment was better- I fucking hated the school system I went through before college (minus a few teachers I loved and still love).
My abdominal pains have also NOT gone away. In 2009 I had a few tests to figure out why, no answer, but they DID find cancer in my upper stomach area- that was taken care of with surgery, which is a whole other story, but my pains have been progressively worse since June. Had several MRIs, a PET scan, etc- long story short I have a tumor in my retroperitoneum (which explains all the lower left ab pains!) and a couple in my right abdominal wall. Hoping I can get the retroperitoneum one removed- process will be complicated. But it has been annoyign for me because since these pains were in my lower abdomen, I kept going to my gynecologist who didn't see anything and told me it could be stress, and I went to a gastroenterologist who told me nothing was there so I most likely had IBS. It's definitely all BS now since I have physical evidence of a TUMOR causing the pain and the pain has been so bad it has constricted my leg muscles (on the left side) to the point where I need physical therapy!
Anyway-
Now there's so much info online, but when I was a teenager, I knew nothing! Anyway, that's my story of how I found out, and how I'm still learning about its affects now.
(added October 5, 2011)
My retroperitoneal tumor WAS removed, and aside from some sensory nerve damage, the pain on that side is GONE. Not celebrating since I still have pain on my right side. i wrote the above story (part 1 and 2) in February when I was first told the tumor was found, and since then, especially in April, pain commenced on my right side. I was told this was referred pain from my left tumor and that the pain would go away after surgery. Welll, it has not gone away. Later, I was vindicated when a tumor was found in my right piriformis muscle. More than likely, when my body gets ready to ovulate, the pressure of ovulation on my ovaries and uterus presses down on the troubled nerve tumor, causing the pain.