I am finally replying to the very kind messages. Replying with the new website set up is a little confusing. It appears as though I’m typing two messages at once.
So hubby and myself decided to stay in San Francisco for a couple of days since we had to do the trip. My ENT’s nurse had put together my files. Last I knew she was just going to print everything off and I would sift through the files on the plane. I had colored tabs ready to go - but as it turned out I discovered the sweet nurse decided to do some word associated parameters and so the printed out papers ALL had to do with symptoms. It was about 1 1/2" thick. Here is why it’s taken me so long to update: once I figured out that every paper had to do with Eagle Syndrome, I was shocked. I’ve had three ENT’s who have retired while I’ve been going through this. I’ve been telling ENT’s for 30 years that there is a bone in my throat. So I’ll try to choke this out - upon further realization I was going into ENT’s in what looked like random order with this complaint, as well as ear aches and other classic symptoms ( I’m really shocked about the shoulder pain, it was noted as well). I discovered it wasn’t a random order. It was a timeline of tragedies. Every time I had a hard cry I would be symptomatic. Every loss of loved ones, every flu, abusive work situations, a couple attempted assaults - some really bad stuff all made worse by the symptoms of ES and I would go to my current ENT at the time asking for help. If it wasn’t for the fact that I was in a plane I would have burst into tears from the realization. Each ENT said I had acid re-flux and prescribed pills. The pills gave me acid re-flux from the rebound affect of stopping them - when it wasn’t the problem in the first place. I am a spiritual person and I know God loves me. I know that in my life the good has outweighed the bad. But that file was the bad, every bit of it and it took my breath away.
I met with Dr. Samji and the first thing he said was “I’m not an Eagle Specialist - I am an oncologist!” He was a bit frustrated by all of the attention he’s been getting. I don’t think he realizes how few surgeries the other doctors have done. I don’t think he realizes how much better his outcomes are in comparison as well. My images were workable, but apparently there should have been 64 slices and not 32 that the technicians in WA state had done. Dr. Samji said it was likely the the auto incident that happened 2 years ago ( when my symptoms became really bad) most likely fractured the already elongated styloid with the seat belt. (a mechanic forgot to hook up the U joint and the drive line came out on the freeway. Luckily hubby is an awesome driver and the vehicle didn’t flip) I have two elongated styloids and the left side just feels like a bone in my throat. It’s nearly poking out where my tonsil used to be. The right has done a funny sort of hook and it’s bent and poking as if it will eventually poke through the front of my neck next to my voice box.
Dr. Samji looked at my file and what I did for a living and he actually said “I don’t want to be sued”. I was surprised. He wanted to know if I’ve tried other methods of help to avoid surgery. I eventually understood his extra concern, when it seems surgery is inevitable with the styolid positions. He used to be a tenor saxophonist, and he knew that if I get the lower lip paralysis that it would ruin my woodwind playing career. He encouraged me to go back to playing - but it’s just too painful. (I told my band that it was asking too much to wait for me and that I should be replaced. They sent me a card a couple weeks ago stating that when I’m ready they plan on taking me back. It was very sweet.)
-Back to Dr. Samji, besides being encouraged to go back to playing ( which I can’t do in this condition) I’ve been put on gabapentin and told to wait two months and see if the pain reduces enough to skip surgery all together. Dr. Samji also didn’t like how my voice had been lost and said it didn’t make sense. He didn’t look the files further than the recent tests and didn’t see the years of acid re-lux (ppi) meds that have been issued. It all makes sense to me now. I haven’t lost my voice since weaning off the ppi meds, I do get pain from talking after a little while but it’s not a vocal chord pain, it’s stabbing flaming swords pain, ear pain, painful swallowing and sometimes shoulder pain. He doesn’t think the cyst under my tongue is related or the cronic back tooth pain. He’d like me to “handle” those things with other doctors during this two month waiting period. The doctor was also concerned that I was thinking the surgery would fix the current fibromyalgia. He wanted to make sure I knew the surgery had risks and that it might not fix anything other than the throat pain (oh please fix the throat pain, I thought. I can live with the rest I’ve proven that).Ironically I’ve been on gabapentin before for fibromyalgia and was taken off of it after the car incident because of doctors trying to figure out what was causing my “acid re-flux”. Back then I was feeling quite a bit better on gabapentin before the car incident. I’ve been on it now as well as steady Advil for 2 1/2 weeks. I’m now feeling back to where I was before the doctor felt for my styloids. It basically took 2 weeks to recover from that. It didn’t seem that horrible in the office. it was painful but then it grew like some sort of broken bone pain. Wow it was bad. So typing this now makes me think "Absolutely I have multiple symptoms from the styloids!“
At one point Dr. Samji said “I wasn’t as good as you, I only played in high school and college”. I could’t let that go. Wow, have I heard this too many times. You see I used to own a musical instrument repair shop and I had some amazing clients 5 of which were Grammy winners. I learned that sometimes the difference between a good and great player was simply the instrument being maintenance correctly. I told the doctor that I doubt he wasn’t good with that kind of background and also being a doctor. I’ve heard this story from many great doctors who didn’t get their instrument repaired right. When my husband and I left I put out my hand and said I need to shake your hand. He shook it. I said “It’s always great to meet another member of the SSS”. He looked confused. I said “The Secret Saxophone Society”. He laughed as we left the room. Then he said “Yeah, me and Bill Clinton!”. I said oh NO! You know as well as I- that Bill could only play a D Blues scale and that’s ALL he could do!” Then Dr. Samji laughed hard. He told me to call him in two months.