I liked this post from a long time Lurker so much...It needed its own Post and Ramblings of...

I've been very ill for over a year due to a botched sinus surgery Feb 2011. It left me with Bilateral Trigeminal Neuropathic Pain - that means facial pain 24/7 around the 7-8 level (scale of 10). I've become somewhat of a recluse as I can no longer work (I was a successful software developer with clients such as Boeing, Microsoft, etc.) due to this disease, so my cognitive functioning has taken a heavy hit. I've seen over 20+ specialists in the last year just to get a diagnosis and hopefully treatment. Neurosurgeons, neurologists, neuropsychologist, multiple ENT's, holistic medicine, you name it. One brain MRI, 4 CT scans, 4 sets of blood work, x-rays, 10+ hours of cognitive functional testing...

There is no cure and there is no surgery for me because it is bilateral (there IS brain surgery for unilateral patients).  I've tried just about everything that should work - and it either doesn't work, or I am allergic to it. One drug (Lamictal - look up the side effects and Stevens-Johnson syndrome) landed me in the ER. They said if I had waited any longer to get there that they would have had to medevac me to Harbor View Burn Center. That's IF I lived.  Although at the ER, they stuck a large needle with steroids in my stomach and my husband had to tell them "Not the left side! She has a lapband!" Needless to say, I got off that drug. Tried some more, but am allergic to them. Opioids  no longer work (stuff like Percocet).

The pain NEVER goes away. Because my sinus surgery was bilateral, so is the pain. All of my upper teeth feel like I have a bad toothache. My sinus areas are always in pain. Sometimes it feels like someone is stabbing me behind the eyes. And sometimes my forehead hurts like a hammer is pounding it. This is not a headache (I saw a headache specialist who confirmed that) and my pain moves around those areas on my face and is rarely less than a 7, usually an 8, and on bad days, it gets up to a 9.  That brings me to my knees in agonizing pain. Otherwise, I have learned to live with the pain. But I sleep 12-15 hours each night because my sleep is not restful, even with the Xanax I take, because oftentimes the pain breaks through my sleep.

I had a follow-up sinus surgery 2 months after the February surgery because a CT scan showed I had a large cyst behind my eye. Fortunately it was just a bone fragment, but by the time they took me seriously (I had 7 post op visits complaining of daily fever, pain, etc.) and taken care of this right away, I probably would not have this disease. It's part of a family of diseases (Trigeminal Neuralgia) that is nicknamed the suicide disease.  I can only walk 1/2 hour each day (doctor's orders) because I get roughly an hour of energy and concentration a day. I can't concentrate to even watch TV. If I try to read, I forget what I just read (and I've been a speed reader since I was a child). 

So, life has its ups and downs. But not with the band. Even with all the steroids and antibiotics I had been on for weeks on end (plus multiple other meds), I've done just fine with my lapband.  I only told a few of my doctors about my lapband. Only my husband knows, not even my family or any friends. And I was only telling doctors if I felt they needed to know (like before surgery). Now that it is part of my medical record, I list it as one of my surgeries.  the only problem I EVER had with the band was after a car accident where my car was totaled. I had a total unfill, gained back some weight, then gradual refills until November 2007. I have never needed another fill since then.  I swear by the lapband as it has been a miracle for me. 

But I am a private person and that was one reason I never joined this board.  Another reason was how terrible some of you treat each other. That's why in my first post, I tried to make it clear that even the lapband haters have something to say, and I respect their experiences. I never said the lapband is for everyone because NO one surgery is for everyone. Not one.  Because I went to a highly qualified surgeon from a center of excellence (who has a great bedside manner as well), I can only say great things about MY experience and MY surgeon.

Over the years, I have been absolutely appalled at how Naomi (and some others) has been treated. I found her posts interesting, and it caught my eye early on that she was also a software developer.  Her advice is solid. Keep your band loose and see your surgeon if you have problems.  Yes, sometimes the lapband doesn't work for various reasons. Sometimes it doesn't work because the person will not comply with the rules. But I've had a lot of years with tremendous lapband success (in spite of being an emotional eater), and I know that if I can make it through this last year, I can continue to be successful. And a FREE fluoroscopy fill for life awaits me should I ever need it.

I am exhausted, so I will update my profile with photos tomorrow for those who doubt I am real. And hopefully I will be able to make it to the April lapband meeting in Fife (if someone can tell me what date/time - I do know where the Poodle Dog restaurant is, if that's where you hold it each month). Then one of those members can report back that yes, I do exist and yes, I am very thin.

Be kind to each other.  It's not a war, it's not a contest, this is a support board. Tell YOUR experience because each person's experience, be it good or bad, is important. As I have read countless (hundreds and hundreds) times over the years, do your research, and discuss w ith your surgeon which surgery is right for YOU. 

As you can see, I just joined a few days ago. It takes me a long time to get anything done because of my medical condition. I did post my photos on my profile and I did put them in a separate post to prove I am real.

I haven't had much to say, but then I just joined. So it is a little premature to state I have nothing to say.  When I do have something to say, I will say it. I try to use the most gentle terms possible to avoid being flamed, and also because who am I to judge any of you?

My entire life has changed this past year, and I tend to look at life very differently from before. You have all these plans for when you retire (or get older) and then something happens that just steals away your life. I do the best I can, and I joined so that I could share that there are others just like me (and Naomi, and Bette, and others) who are out there. And many more successful banders who have never heard of this message board, or don't have time to post (or care to post).  But in spite of it all, I AM a true lapband success (most of the thanks goes to my surgeon and my lapband) and I can only tell MY story. I do not presume to judge anyone else's experience.  I just ask for the same courtesy.

 If this was a fb post I would definitely hit the like button. !

Cathy, thank you. I feel much better. I knew better than to get my feelings hurt by being flamed. But I am in a very fragile state right now, and those unkind words were hurtful. Things I could easily roll off my back before this disease now seem so painful.  So, I appreciate your positive comments.  BTW, my name is Linda (don't know how to change my user name once I joined), and I was hoping to kind of stay annoymous. But such is life, huh?  Anyway, thank you. It's past my bedtime (and I do need so much sleep, but it is truly the only way I can function), but your post put a smile on my face, and that is something I am thankful for.

I am really glad to meet you. I am very sorry about your situation. Sending prayers for you.