Crazy Health History + Losing my Hair

Discussion in 'Looking For Advice (my story)' started by deafsinger, Aug 29, 2009.

  1. deafsinger

    deafsinger New Member

    :( My crazy mixed up history is below. I Hate having to Face it all.
    I also feel a HUGE amount of guilt for missing my hair .
    I feel like if I do not have cancer & am losing my hair that
    for some reason I should have nothing to complain about.


    My history is quite complicated. I have Lupus , and it likes to "jump around" from one area to another on my body. I have undergone bladder biopsies & laser ablation for scarring , uterine biopsies with cervical ablation , I had scarring over several of my knuckles that looked like warts but were not , they itched broke open & bled , even getting so large as to prevent the thumb & 1 finger from bending. I also had sudden permanent deafness in my right ear about 16 yrs ago. Approx 10 years ago I became blind in my left eye & remained blind for over 3 years. I also had a heart attack around 10 yrs ago.

    I had a small cyst on the back middle part of my scalp that appeared after nose surgery that lasted approx 6 hours. The cyst itched & would get to be the size of a grape then would re-absorb & disappear. the itch never disappeared , but the lesion would. My scalp would always get hot there if I walked outside , & would begin to sweat profusely & break out in hives. All of this with my scalp began when I was in my late 20's & I am now 52.
    What I now have on my scalp is a Giant Cyst / Lipoma/mixed tumor & it is at least the size of a boiled egg , or kiwi fruit. The top layers of it are hard , tough & leathery & feels like a callous. The skin on the sides of the sore are softer , tight due to the skin stretching , and have some hair. the new hair growth that comes in there is ingrown & sore .
    The hair loss around the cyst /lipoma /mixed tumor extends up to the crown of the back of my head & to the backs of both ears.
    What hair that I do have on my head would not be enough for a baby to make a ponytail with. There is some on the top of my head & a scant bit on the sides.
    I look sort of like Driving Miss Daisy did at the end of the movie when she let down her hair on the staircase.

    This tumor has been removed twice under general anesthesia. The 2nd time , I bled profusely & the surgery was more complicated than had been expected. It was not just a simple cyst , or a simple fatty tumor. It had a little bit of everything thrown into it. After the last surgery , it stayed somewhat raised over the area, & the surgeon told me that it would need a revision somewhere down the road , as some of my hair would be growing in underneath the suture. It stayed about the same size for years until I had oral surgery , my head flat on the back of a chair for a few hours & it became large again. It's very slow growing , but has gotten larger.

    It needs to be removed & I have had it scheduled 3 times , but twice due to my blood work it had to be cancelled for a later date. the first cancellation was because my ex-husband cancelled my health insurance policy.
    I was ready to re-schedule and my husband was fired from his job & we had to cobra. But then he got hired by another scompany within 3 weeks , so we did not Cobra.
    Problem ...this last company kept telling him we were covered under their group policy. We had paperwork , etc. But they were not paying their premiums , & the insurance company told us yes you have a policy , but no you cannot use it until it is paid up . His boss assured him it would be paid up by Christmas.
    It was not , It was cancelled & then he was fired.

    So I have no insurance. I have just about lost all of my hair , and I feel mostly because this tumor is now so large .

    I went to 2 dermatologists years ago here , and 1 froze off the sores on my knuckles told me it would throb a few mins. , but they throbbed for hours , sending my BP sky high to stroke level sending me to the ER It was nearly to the bone, you could see the nerves "Pulsing" . On a scale of 1 to 10 the pain was at a 10+
    He denied any wrongdoings & said I was "seeking drugs".

    I saw another dermatologist who said my problem with my skin over my knuckles & my cyst/ lipoma / mixed tumor were due to my "obsessive picking at the skin"
    He said that my hair loss was due to my obsession with picking at my skin & pulling out my hair. I quickly told him how Wrong he was & he totally dismissed me & wanted to give me tranquilizers.
    Oh , by the way , I took in some hair in a ziploc thinking they might want to see how much I had lost , or to view it under a microscope ... I was asked "How long have you been collecting your hair in baggies". he wanted to know how many baggies of hair I had at home !!!! SO he thought I sat at home , picked at my skin , and pulled iout my hair collecting it in baggies. Lord , that visit was a HUGE letdown.

    I saw a Rheumatologist when I was having a period of NOT having a flareup. For years with my Lupus , I did not look sick , so as a result , I was told I was not sick.
    The doc I was sent to for Lupus , when I showed him my scalp & tumor , he just said that's just a tiny cyst no big deal. When I asked about my hairloss , to him it was nothing significant. It has totally changed now though since it's nearly all gone.

    Since I do not have insurance I cannot afford to go to lots of doctor visits.
    I had to see 13 (yes THIRTEEN) Opthalmologists before I located the asst head of the Corneal Division at UAB in Birmingham,AL. Finally he diagnosed me correctly & now I can see again.

    No one ever knows what to do with my weird "orphan " like symptoms & problems.
    I am afraid of going to a surgeon who says not to worry about the scar because I won't ever have hair growing back there again. Well I do have new hair growth in spots , & as a woman every little bit means something!

    Well I feel as if I have written my whole health history here in a jumbled up fashion.
    I Hate talking about it , I hate explaining it , and I hate being embarassed by it.

    Anyway , there , it's out in the open here. My husband knows. My 2 girls know.
    And now y'all know.
    I am ashamed & I am embarassed by this.
    I hide this from all of my friends, I have cut myself off from others, I now am just unavailable most of the time.
    I am ashamed & embarassed. :(
  2. deafsinger

    deafsinger New Member

    I also wanted to add that with my eye problem , I became septic , nearly died and was placed on IV Rocephin twice daily for 5 days. Can large doses of Rocephen ,cause hair loss?
    These were massive doses, but needed to save my life.