I was found to have a lipoma in the midline in the anteriosuperior area of my brain--on the right side, along with some brain atrophy. I requested a brain MRI from a doctor, as I have been having a massive variety of symptoms which include strange lesions on my face/sinuses/scalp and neck which elicit extreme pain converse to their appearance. No physiological cause has been determined and I have been told it's a psychological issue, a picking/scratching disorder, and therefore have not been able to get a physician to address them. A few swabs and biopsies have been done on inactive areas; finding nothing, yet I never see the final reports for what was tested or how. My husband has seen the lesions, bumps, etc. appear and, in the beginning, a painful skull-base cyst which ruptured and seemed to then spread. I also have massive pain behind my eyes and down my neck as well as idiopathic episodes of swelling, rash, flushing and on at least one occasion, cyanosis. I'm experiencing cognitive issues (inability to find words, solve puzzles, remember things, etc) and physical issues (tripping, spilling, dizziness, etc). I have developed sight issues (double vision, difficulty focusing, halos around things, and other troubling symptoms), ear pain & tinnitus (now in both ears), nasal lesions and other symptoms. I am 38, and petite (childlike). The atrophy has not been addressed, other than a dismissive comment that it's possible my brain never grew to fit my skull. I have been recently diagnosed with TMJ disorder in both jaws--degenerated to the point where the discs are completely kaput and it's bone on bone--which I was told could cause my skin issues; though I have yet to find any information on that. Any growth disorders I have found which involve the brain not fully developing mention retardation as a result and I have always been brighter than the average bear. Thus I come to the lipoma, which I have been told not to worry about. Radiologists have only confirmed the presence and have not suggested further diagnostics to determine if it is interfering with any vascular or nerve issues which might explain some of my symptoms. I saw a neurologist yesterday who barely looked at my brain or jaw MRIs and diagnosed me with migraines, of which I have no family or personal history (headaches of any kind). Since the pain inside my face is directly correlated to the lesions that appear, I believe there is a connection, but cannot get any doctor to deal with this or listen. Trigeminal neuralgia does not fit as a diagnosis because of the lesions, although the massive pain seems to shoot through these areas. My questions are, 1. Regarding the lipoma, what is usual treatment regimen: further diagnostics, biopsy, surgery or something else? 2. Regarding lipoma information (which is sparse): lipomas are benign fatty tissue (unless it is a liposarcoma) formed in the womb (thus I've had it all my life) that don't grow new cells (the existing cells expand) and are extremely rare. is that info correct? Why are they so rare? Do they make you susceptible to the more common skin lipomas? Will it keep growing/expanding? 4. What are other causes of brain atrophy other than growth disorder? 5. Is the atrophy something to be concerned about: what symptoms might it be causing, what is the treatment for it and will it continue?
Next time a few paragraph breaks would help - that is hard to read! Yowza!
Sounds like some hormone testing, like IGF-1 would have been needed as a kid. There are a great variety of GHD issues, not all require slowness. I have adult GHD. You may need a good gene guy to get to the bottom of your issue.
1. From what I have read, they leave lipomas unless they grow and interfere, and few grow.
2. I don't think they are related.
4. it has to be a disease of some sort - but growth disorders do not cause atrophy.
5. the disease has to be identified in order to treat it.
It also depends on the extent of the atrophy and if you are having symptoms other than the facial pain (which is bad enough).
Have you tried botox for the pain?
Sorry about the lack of paragraph breaks. My apologies. Thank you for responding. As I am petite, as is my voice, doctors--despite my age--do not see a 38 year old woman; they see a 17 or 20 year old whose voice sounds soft and whiny, even when I am not whining. Therefore it has been near impossible to get care or answers, as I am easy to talk over.
It is incredibly difficult to know you have a brain tumor and live without further testing, even if it's not of the dangerous nature that others on this forum are dealing with. Please tell me more about what you know about GHD. I have Hashimoto's Hypothyroidism already, but do not have an endocrinologist.
I have not tried Botox for the pain. The derms around here refuse to treat me in any way, as their little community has deemed my lesions as self-induced. Where they might have been able to try cortisone or other procedures and they tell me this is not infectious, they refuse to touch it or do ANYthing, because they really don't know what it is. It most definitely has unique earmarks of something very unusual. Have you ever heard of any neuro skin disorder like this on the face and inside the head?
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