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Posted 11/20/2007 9:39 PM (GMT 0)
4 years ago I had surgery for something called a neurofibroma.  The "cyst" grew on the lining over a peripheral nerve in my face that originated from the parotid gland (salivary gland) in my cheek.  I was very lucky because there are two main nerves in your cheek, one for feeling and one for movement.  Before I had the surgery the doctor didn't know which nerve it was on.  There were two concerns, one the PET scan showed it was cancer and the cancer had moved into the parotid gland, and two, which nerve was it on.  Thankfully the "cyst" was on the nerve for feeling.  They had to remove the nerve which means that I no longer have feeling in my ear, part of my cheek, part of my neck.   After the biopsied it they found a benign tumor inside the cyst.  Now here's the kicker ... when I was in last time with my rheumy he insinuated that the neurofibroma was from the lupus. 

Fast forward 1 month, I'm pulling my hair back yesterday and I feel a lump behind my ear on my skull where they cut my skin to do my surgery.  I couldn't make it into the dr that did my facial surgery so today I went to see my regular PCP.  I have a bone tumor.  He's pretty sure it's benign, and he's pretty sure it has nothing to do with the neurofibroma/parotid surgery.  I'm going to have to go see the dr who did my facial surgery and he'll probably run tests.  If they have to do surgery the tumor is so hard they have to chisel it off the skull bone and if it makes a big enough hole you have to have a bone graft.  It just seems like it is one thing after another, after another and I am so tired of medical issues.  sad    

Has anyone had to deal with anything like this?  How do I get through another issue?  I'm already dealing with this flare, possible kidney issues ... now t this :(

Posted 11/20/2007 10:08 PM (GMT 0)

Oh Gidget! I'm so sorry you have to deal with all of this. Just trying to get through a flare is hard enough and than right in the middle of it to be hit with this. Somtimes you just can't win. I will tell you this though. I am absolutely convinced that everyone in this group are among the toughest people in the world. We may get down, we may cry, we may get tired, angry, frustrated but we always seem to bounce back!

I believe most of us has been hit with more than one thing coming at us at a time. I'm sure I have but thankfully I have had  the greatest support right here to help get me through the rough spots. We are going to be here for you too. No matter what.

If you ever feel like talking my email addy is on here. The chatroom is always open too if you post that you'd like to chat with someone and what time.

Hang in there you are not alone, your in my prayers

carol

Posted 11/20/2007 10:16 PM (GMT 0)
Gidget, I am sorry that you have to go though this again. I know how you fell going from one thing to the next. I had to go through surgery last week, this is my 3rd time in 12 months. Been out of work for 3 wks and on like 12 difference meds and creams. I told my wife "I hate to see what happens when I get old". I do get very tried going from one issue to the next.

The best thing we can do is.....DO

Do tell, Do help and Do.....do

Best to you, frank
Posted 11/21/2007 12:01 AM (GMT 0)
I am so sorry this is happening to you. I lost my gallbladder to inflammation which was likely caused by the lupus (my liver occassionally gets inflammed too). I had a breast reduction (size made my back sooo much worse). I have had nerve blocks to periphrial nerves near my right hip/groin area- apparently 2 nerves are damaged. I cannot have a nerve block now because of the pregnancy which means the pain is bad enough I will soon need a walking aid again, it only took more than a year for an effective treatment and reason was figured out. I am facing back surgery eventually. Many of us feel like it is just one thing after another. Heck I have the R A lable along with lupus and sjogrens. I hope that you require the least of the surgeries used for this issue. Just remember at least it doesn't look like cancer. We all must remember we are still alive and find the things in this life that make it worth going on. Good luck on the consult and tests.
Posted 11/21/2007 1:59 AM (GMT 0)
carol, frank and redrose,

You guys are the best ... you bring tears to my eyes.  I was having my own little pitty party.  I had come home and called my niece but she didn't answer her cell phone, nor has she called me back.  Her mother and I aren't speaking right now, couldn't honestly say why, but my sister doesn't seem able to handle that I have lupus, she also has lupus.  Anyhow, I was sitting here thinking, here I've been here for my niece for every single problem she's been through, and have even sent her $600.00 lately because her loser of a husband was arrested for dealing drugs and left her high and dry with three kids and no money to feed them.  I have friends that I can talk to and I have church family, but once in awhile it would be nice to have my family there.  Anyhow no more pitty party thanks to you guys ... you are the very best and thank you for being there.

 

Posted 11/21/2007 3:13 AM (GMT 0)
Gidget,
I am sorry that your sister isn't talking to you. But, family has a way of caming around.

Try and maintain yourself....Have a Great Week!!!!
Posted 11/21/2007 3:43 AM (GMT 0)
(((((((((Gidget))))))))))) Some hot tea for you sis! I also sent you a basket with some cookies and chocolates. Blessings!
Posted 11/21/2007 4:37 AM (GMT 0)
Hey Gidget . . . you pups sound a lot like mine . . . true bed budies. I went up and deleted our little chat above . . . as I just co-authored a reminder to stay on topic. This actually IS on topic because it relates to our comfort . . . but I don't want to set a borderline example. Glad you have your sweet pups to keep you warm at night. Blessings!
Posted 11/22/2007 1:52 AM (GMT 0)
No problem Rosie I understand ... I guess I shouldn't have even started the post because a enchondroma has nothing to do with lupus

Posted 11/22/2007 2:55 AM (GMT 0)
Hi gidget, sorry to hear about your lump. I have had both submandibulars out due to sjogrens. Dx was benign hyperplasia but would have become cancerous, also had infection surrounding the glands in the empty pockets around the chin and neck. Because the lymph nodes were affected and not working, they could not fight infection. Constant infection and inflammation I'm told leads to cancer and these problems. I was also told it was not abnormal for someone with ai disease to have the lymph nodes burn out, which seemed to make sense because they work overtime, and salivary with sjogrens. Also, please know, if you have had any type of head injury, there are well documented cases of people having similar problems to yours and mine 8-10 or more years later from encapsulated infection brewing under our skin in the head and neck areas. I was stabbed in the head 21 years ago which may helped prompt my sjogrens in some way. Take care and hope everything works out.
Posted 11/22/2007 4:30 AM (GMT 0)
Hi Gidget - Sorry about the bone tumor. I had an osteoma [benign bone tumor] removed from my skull in 1982. It was right above my right eye. Most times they leave benign bone tumors unless they are interfering with something else or causing excessive pain. Mine started to cause pain in my eye. They discovered it was growing into the orbit of my eye putting pressure on the eye.

So I had it taken out in a same-day surgery procedure. They cut up several inches from where the actual osteoma was so that they could hide the scar near my eyebrow. They peeled the skin off my skull to get to the osteoma and then chiseled it out. It was the size of a grape. I didn't need any bone grafts or anything like that.

I hope yours is as simple and straight-forward as mine was. Best case scenario they will say leave it alone. Have a happy Thanksgiving!
Posted 11/22/2007 2:00 PM (GMT 0)

Don't feel bad Gidget, most of my problems don't fit the criteria either. confused but I kno it's expensive to keep these sites going.So I understand.

happy turkey day

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