My mom told me I had NF when I was really young, probably 5 or 6 years old (I am 27, 28 in a couple of months). 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 doc suggested MAYBE it was from NF, but no referral for a followup...
...continued on another blog...
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 doc suggested MAYBE it was from NF, but no referral for a followup...
...continued on another blog...
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