Just a update

General
1

Hi everyone.

Sorry i disappeared after announced my diagnosis and that i was getting booked in for surgery.

It's been nearly year now that i've been waiting on the public geelong hospital list. It's been a nightmare trying to hassle them to be quick, while dealing with my progressive symptoms.

I've had to put my job on leave and provide medical certificates monthly and go on the government payments here. I wish Eagle Syndrome wasn't such a rare thing that i could go anywhere for the surgery, but i took what i got with that ENT surgeon Roy Nicholson.

He said he would do it, but i didn't know i would be waiting this long. I just got a appointment which is on April 11th, which i hope is a Pre-op. I lost the willpower to constantly ring them, so my father has been doing that for me.

They said they will for sure tell me the surgery date on that day. The worst symptoms for me is the throat, ear and neck pain. Who knows how much i've spent on the Myotherapist to massage it. Over $500 for sure.

Has anyone here seen this? http://www.dailymail.co.uk/health/article-2347329/Father-forced-Google-symptoms-150-GP-appointments-failed-correctly-diagnose-rare-throat-syndrome.html

The only article i've seen exposing Eagle Syndrome. He quoted:

"For those of you experiencing the same issues, do a search for chronic sore throat mood virus. I think this was the trigger from a holiday or indeed something that is now in our ecosystem - maybe a 'morphed super virus"

When i was younger i went overseas and i got really sick there, not sure it's related. I was around 7 years old, so it's hard to be fully concious of whats normal.

Just a thought I was also thinking about a possible cause to the calcification of the styloid. It could be the fluoride that we have ingested in our waters and products. Fluoride causes calcification of the Pineal Gland, if no one has heard of that, search it up.

It could be how some react to it, a rare sort of reaction. Similar how people will get side effects from medications or vaccines. If you have too much fluoride you can get a problem with your teeth called "Dental fluorosis". Just putting my thoughts out there, as like everyone who has ES, we really want to know what causes it.

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Ken, thanks for checking in. I am sorry you have been waiting a whole year for surgery -- that seems really extreme. I'm glad your father is still doing the ringing in for you. I hope April 11 is a day of meaningful progress for you and brings you closer to relief.

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Ken,

Good luck, I also have "Pineal Gland Calcification" found on first MRI, stay away from any more MRI's with contrast, check all my posts on subject. I have high amounts still in me very sick possibly a non-nephrogenic systemic fibrosis! more soon, very sick with infection now seeing neuro tom for other issues as well.

BTW for the first time while swallowing i got the stuck/pierced under jaw feeling leaning to side while uplifting from pillow and trying to swallow swig of water, other than that I'd get it when I raised arms up to shelves and turned head. My CT shows elongation!

Cathy

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Ken D

Thanks for your note. Hopefully you will find peace. This is not like some pains which can be deadened. I just wish mor drs. were proactive in helping find solutions, even if they don't know what is going on. Eagle's has been around since the 1930's. Having a good support system is so important. Let us know.

I have been fortunate here, although I had to do the calling to find a surgeon. At least my ENT and FP did say I had Eagle's Syndrome, abeit not one that is too long, but calcified. I know it has been creating difficulties for years. But I had to go thru the SCDS discoveries and surgeries to peel back the layers. Along with a dozen other complications. However, once I found my surgeon in Feb., it was the fast track. Even though I have to drive a few hundred miles over the mountains, I do it. My surgery is coming up in April. I don't know what I will do if this does not take care of the pain. I try to work thru it, but when it keeps me awake, then I get bothered.

I, too, have wondered about the ideas you give. Something created a weakness, which was aggravated by whatever. I know drs. always asked me when I had my tonsils removed - never. I just know I always have bad throats (strep?, allergies?) as a young child. I also had neck trauma, including a choke hold and whiplash.

Your comment on why the calcification. I know my body has always had a tendency to heal too fast. It encapsulates whatever foreign body it doesn't like and either pushes it out eventually, builds bone/cartilage/scar tissue. It doesn't readily absorb the absorbable stitches. I have had stitches work their way out and explode in a cyst-like mess. One stitch from my SCDS surgery worked it's way from above my right ear back to where it came our just above the nape of my neck at the hairline just to the right of my spine. It was thick and pinkish; I had to put duct tape on it to make it come out; 1/4" long. Freaked me out. After foot surgery, a pin was put in a joint; my body decided to build extra bone around it. The dr. had to go in an chisel it out, my toes wouldn't bend.

We didn't have fluoride, we had a well, but dental fluoride treatments make me sick. I was a guinea pig for the polio virus shots. I also am prone to having an acidic metabolism. I was born with weird kidneys and had problems with them all of my life. So, I think that is the main culprit, with outside influences allowing problems to occur.

Well, enough. But I agree with you.

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Thanks for the replies everyone.

@dancermom: thanks for your blessings

@Cat: The reason why i brought up the pineal gland calcification is because, if fluoride can cause calcification to the pineal gland, i thought why not to the styloid. Could be how some people react to it, therefore making eagle syndrome rare. Like there were a few cases of people getting vaccines and actually getting harmful side effects, even paralysis.

@Ladygw: I'm same like you. I've never had my tonsils removed. All i can remember is having a few car accidents, hitting my head a few times from falls. Getting very sick overseas when i was young. I had some weird condition called early tonsillitis when i was around 10-11.

At what age Ladygw did you notice these symptoms come? Because for me it's hard because i was very young.

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All the best KenD! I will mark April 11th and pray that the outcome will be everything you have hoped for. I am so thankful that I had private health cover, found a great surgeon and could have my surgery soon afterwards.

Keep us posted :)

Bubbles

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@Bubbles

Thanks for your blessing.

I wish i had more money, because nothing is worth more than your health. If only i wasn't as young having this, because i've had no chance to work, from eagles preventing me doing so.

I'm always wearing a jumper everyday now for my neck, to keep the heat in. Plus i always use a wheat bag for my neck. It's a constant nightmare. If only the people around me could understand what i'm going through.

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Ken;

I have always worn a scarf, etc., to keep my neck warm; however, it can not be too tight or I feel like I am choking. My chest and around my kidneys also need to be kept warm. My Reynaud's syndrome affects me, too.

I just wish I could find someone who looked at all of my systemic problems and weaknesses. I know that many of them are connected, but why?

I was very young, also. But, the problems were always there. I know in the winter they were much worse, but we lived in a tiny house and had only wood to heat and cook with. When I started school, I had problems all of the time.

I wonder if these problems caused me to have early dental problems or vice versa. I also could not digest milk. My first surgery was when I was barely one year; hemangioma removed from my forehead. Perhaps the antibotics, etc., distressed my system and I never recovered from that.

AT my age, I wonder if I will have any years left with no medical issues. I can only hope this surgery in April will provide relief. I know I am better after SCDS, but sometimes I am so jealous of those who have not had 67 years of problems.

I am so looking forward to warm spring weather and quiet breezes.

9

Just another disappointing update.

Went to the appointment today to find out when my surgery would be. I spoke to one of the hospital ENT surgeons that would be assisting Roy Nicholson in the operation.

He started out by saying we haven't forgot you yet, but the category 1 patients with cancers... etc, have more priority over you as some more came in with life threatening illnesses. He also then said that you're looking to be waiting another 6 weeks.

I then told him the man on the phone said that they would be telling me the operation date today, but then he told me the man on the phone wasn't aware that Roy Nicholson is actually on holidays...

Just as soon as i get excited, i get disappointing news once again. If only i had the money to just pay and get it over and done with.

I just hate how they give me an appointment to basically tell me nothing, can't tell me over the phone eh...

Oh boy, here we go another 6 weeks.

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Very frustrating indeed, Ken. I am sorry to hear of another delay. I sincerely hope your turn is coming soon.

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Thankyou.

I'm planning on getting my case investigated by a Health Ombudsman in Geelong.