Neurofibromatosis on spinal cord

I always thought I only had NF1 from a look a few years ago on the internet. Never really looked more into it as I really didnt have an issue apart from 'Coffee spots' and the odd lump.

Recently had a lot of back pain so had an MRI and it appears I have Neurofibromatosis in my spin so I started to look more into it. I do have ringing in my ears that comes and goes, I always through I had Tinnus as well. Does anyone know if you can get a mixture of NF1/2

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Anyone else has a lump on their spinal cord?

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Yes.

I have NF-1 and have or had:
2 tumors in C-1
2 tumorrs in C-2
1 tumor in C-3
4 scattered through the "T"'s
2 in L-4
2 in L-5

Is it possible to have NF-1 and NF-2, but it would be profondly rare ... almost impossible, I'd say.

NF1 is the more common, occurring in 1 of every 4,000 births and is caused by a mutation of chromosome 17. NF-2 is rarer, seen in 1 in 50,000 births, caused by a mutation of chromosome 22. I couldn't begin to calculate the odds of contracting both, but I think it's safe to say you have a better chance of hitting the lottery while being struck my a meteor three days in a row than having both 17 AND 22 mutate at the same time.

Remember, there is a bit of overlap of symptoms of the 3 forms of NF.

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Spinal tumors in NF1 are incredibly common with some stats reporting that they occur in 60% of cases. CALS do occur in NF2 but not generally in the numbers that we see in NF1. People with NF2 do not have typically have axillary freckling. As Artie has said there are overlaps with the two disorders which have no doubt led some inexperienced doctors to misdiagnose their patient with both conditions. This has caused some confusion for patients in the past. However, now that genetic testing is widely available we know that people almost always have one OR the other.

There is nothing in your post at this time that would lead me to think that you've been misdiagnosed or that you even remotely meet criteria for NF2. However, if you have specific questions about your diagnosis then you should probably make an app't to see a Geneticist. If you haven't had a brain MRI you may want to do that.


Diagnosis of Neurofibromatosis Type 1 (NF1)
Six or more café au lait macules over 5 mm in greatest diameter in prepubertal individuals and over 15 mm in greatest diameter in postpubertal individuals
Two or more neurofibromas of any type or one plexiform neurofibroma
Freckling in the axillary or inguinal regions (Crowe´s sign)
Optic glioma
Two or more Lisch nodules (iris harmartomas)
A distinctive osseous lesion such as sphenoid dysplasia or thinning of long bone cortex with or without pseudoarthrosis
A first-degree relative (parent, sibling, or offspring) with NF1 by the above criteria
The criteria are met in an individual if two or more of the features listed are present.

Diagnosis of Neurofibromatosis Type 2 (NF2)
Bilateral masses of the eighth cranial nerve seen with appropriate imaging techniques (e.g., CT or MRI)
A first-degree with NF2 and either:
a) Unilaterial mass of the eighth cranial nerve, or
b) Two of the following:
· Neurofibroma
· Meningioma
· Glioma
· Schwannoma
· Juvenile posterior subcapsular lenticular opacity

The criteria are met by an individual who satisfies condition 1 or 2.

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i have a tumor on every nerve of my spine

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My son also has many tumors on his spinal cord. He has had two surgeries in his neck area and both provided improvement in his walking and pain. I would suggest that you make sure the medical people you are working with are knowledgeable about NF tumors. Many of the tumors, they just leave alone if they are not causing problems.

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I also have tinnius and dizzyness/balance issues
Is it possible they are not linked to my nf1?

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Yes I have Spinal Cords tumors,just had surgery behind my neck back in Oct,and have some in the lower back too.

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I just spoke to my doctor
It's not a lump on my spin. It's enlarged nureves which is inoperable

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I have tumors on all nerves in spine,3 inside spinal cord 1 very large one on back neck by hair line that streches to my shoulder,it as big as a poped basket ball streached frm mid neck to top shoulder,I cant find a doctor CLOSE ENOUGH TO TRAVEL to help me.All in kansas are afraid when I tell them its neurofibromatosis. Thay dont want to remove cause they think it will come back bigger.I just want the pain gone it keeps getting worse and now i cant quit falling.

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