Cause of calcification? Inflammation/gluten free?

General
1

styloid.jpg

Hi all,

I've lurked on this website over the last year, when I was diagnosed with Eagle's. My right side is 6.6 and my left 5.8 --- and my face has hurt like he***** for over 2 decades.

I have an appointment at Mayo Clinic, Rochester, on 9/15/14. I've not seen that anyone has been there and I'm hoping to get some good feedback, both on the ES and EDS (which at least 2 doctors have said is 'probable.) The primary (lead) doctor I'll be seeing is a neurologist so hoping to also find out about trigeminal neuralgia.

I was wondering if anyone knows the cause of the calcification?

Also, I would imagine things are inflamed in that area because of the bones, but wondering about 'overall inflammation' of the body?? My father has read 'Grain Brain' and is pushing me to try a gluten free diet (this particular book goes even further and says white carbs are a no no.)

I kind of feel like I've given up enough, due to this illness. I resist giving up my bagels too!

Has anyone tried a gluten free diet, and if so did it help?

Thanks so much, and will keep you updated re: Mayo Clinic,

Hopeful

2

I had calcified left styloid three months ago taken out along with thyroid cancer, thyroid may cause issues with calcium uptake, I have issues with high calcium in bllod now and had to stop calcium supplements. Being worked up heart issues as well.

I also followed for some time, gluten free which I feel helped I may have to go back to it, but I lost so much weight on it, for background, I'd been diagnosed as "fibromyalgia" thrown on many drugs, bedridden 4 yrs gained massive weight, 80 lbs on 5'1" body, when I threw all those drugs away I developed thyroid issues then cancer I had dropped to 92 lbs (currently at 109 in process) I recently found out too that I have high amounts off Gadolinium in me from mdi contrast and ido NOT have kidney disease so no one can tell me why? issues upon issues.

Cognetti did my surgery I am 3 months post op (tom) will do right side another time, I had swallowing issues w/left.
I had old CT showing some elongation and Cognetti felt me with both hands, inside throat and outside neck and said, "Really don't feel it" I didn't buy that and beach of the old CT an dpanorax X-ray we were able to partially diagnose til he attempted and found the calcification, not so much long as it was hardened too much for him to break by hand so he used tools.
Good luck in MN, (they have two other Mayos you know in FL & AZ, many people don't know that) FYI

PS check a nutritional store for grain free bagels ; Tinkyada puts out a great rice pasta in all shapes, like linguini, elbows and such, delicious! Try it for while, as wheat can make some become inflamed it's worth a shot, I am seriously thinking of going back to it as I've been feeling lousy lately myself

  2. Gluten-free food is normally seen as a diet for celiac disease, but people with a gluten allergy (an unrelated disease) should avoid wheat and related grains. Meat, fruits, vegetables, potato, and rice are gluten-free foods. Several grains and starch sources are considered acceptable for a gluten-free diet.

  3. Gluten-free diet - Wikipedia, the free encyclopedia

    en.wikipedia.org/wiki/Gluten-free_diet
    Wikipedia


Cat

3

I find that the less processed food and bread I eat, the better I feel overall. Although I'm not on a gluten free diet, I do try to minimize it. I've given up a lot of foods that I enjoy eating in order to feel better. You say your face hurt like *****? I've never eaten a bagel that tasted good enough to offset that. Try giving up gluten for a week and see how you feel. Just sayin'...

4

I have a borderline case of Eagles - I have elongated styloids - quite long but not thick. My symptoms come and go and I have had great success with physical therapy and going gluten free. The physical therapy for my neck issue has really kept the strain on my neck to a minimum. My facial pain has been mostly relieved at least for the last 2 months. My situation is not typical and I don't think most people could have the same relief; however, the gluten free has also reduced the inflamation in my neck and I think it's very helpful.

5

Thanks for the input Cat, Scrappy and JCW! ~~

I've done the 'yeast free' diet, though it was many years ago .. didn't see any changes. And I recently had some testing done through Genova Diagnostics ... and I have no yeast overgrowth and no sensitivities to grains (barley, corn, oat, rice, rye or wheat). -But your right, Scrappy, a bagel ain't worth the pain so I'll give the gluten free a try. The rest of my diet is very healthy; I don't like sweets so that's not an issue for me.

Thanks for the tips on gluten free bagels and pastas Cat, will look into them right away. And JCM, I've been doing weekly cranio sacral therapy for the past 10 years and don't know where I'd be without them. It was my c.s. therapist who told me (before I'd ever heard of ES) that something was compressing my trigeminal nerves ... boy was she right. Acupuncture is also really effective for my pain.

Dr. Snyderman (UPMC .. Pitt.) could feel my styloids both inside and on the neck ... they hit 2 fingers below my jaw line. But I have no idea how thick they are ... which is a very good question. Hmm. I also haven't had an MRI with contrast, presume Mayo will do one.

Thanks again for all the support, it's greatly appreciated,

Hopeful

6

My belief is that our bodies react to whatever by overhealing. I have had extra cartilage, bone growth, stitches sealed up/repelled. From the time I was 6 months old I have had surgeries, childhood illnesses, injuries. My immune system has always stymied my doctors. I don't get the flu, colds, etc., but have all kinds of other issues. To be honest, I probably should not have survived childhood. I am not gluten free, but limit starches and sugars. I need the minerals and vitamins in grains, etc. Same with meat. I am type O blood, which some say indicated how your body functions. Lots of variables, with overlapping circles.

7

I am also type O blood (negative). Are you referring to the Blood Type Diet? or is there something more. I've always thought that it made a lot of sense.

8

Yes, that is the diet. I agree, and know if I stick with the basics, I feel better even if I am not 'cured'. It bugs me when others try to force food I don't want on to me. As if I am doing so to put them down...

9

Hopeful Please rethink the Mayo MRI, they might do a plain one, but as of contrast please know, it has been causing issues with some patients despite having good kidneys: I had 6 for "brain issues when I had LYME!!! and one for pancreas, after being given so many for brain I developed severe gastro symptoms, malabsorbption, dropped to 92 lbs and also became Hyoperthryoid then thyroid cancer which they took out at the same time as the styloid just 3 months ago tray!!

DR Cognetti is well aware of the issues I brought up to him about MRI contrast but he is at JEfferosn in Philly. IF you need particular articles I can hook you up. iCat

PS: I don't want anyone developing a Non-nephrogenic case of systemic fibrosis if I can help it, I will ge this diagnose done and for all, I figure sepnign so much time on NET I am bound to ! ; > )

AUNT MINNIE & GE & $5 Million verdict
http://www.auntminnie.com/index.aspx?sec=prtf&sub=def&pag=dis&itemId=106037&printpage=true&fsec=sup&fsub=mri
Study links Gadolinium MR contrast to brain abnormalities
By Wayne Forrest, AuntMinnie.com staff writer
http://www.ncbi.nlm.nih.gov/pubmed/24475844
Radiology. 2014 Mar;270(3):834-41. doi: 10.1148/radiol.13131669. Epub 2013 Dec 7.
High signal intensity in the dentate nucleus and globus pallidus on unenhanced T1-weighted MR images: relationship with increasing cumulative dose of a gadolinium-based contrast material.
Kanda T1, Ishii K, Kawaguchi H, Kitajima K, Takenaka D.
http://www.propublica.org/article/ge-failed-to-adequately-warn-about-dangers-of-its-mri-dye-jury-finds
Omniscan
Specter of MRI Disease Haunts General Electric
GE Failed to Adequately Warn about Dangers of its MRI Dye, Jury Finds
by Jeff Gerth
ProPublica, March 22, 2013, 2:41 p.m.
$5 Million Verdict In The First Gadolinium Injury Trial
Tags: claims, Gadolinium Verdict, GE Healthcare, lawsuit, lawyer, litigation, Product Liability
A federal jury in Ohio has awarded $5 million in the first case to go to trial in the multi district litigation involving patients who claim injury from the body scan contrast agent gadolinium. The jury found that GE Healthcare failed to provide adequate warnings of the health risk posed to those with impaired kidney function from Omniscan. As we have reported, the GE product is a gadolinium-based contrast dye used in MRIs and other imaging scans. The plaintiff in the case, Paul Decker, contracted a debilitating skin disease — nephrogenic systemic fibrosis (NSF) — as a result of being injected with Omniscan for a magnetic resonance angiogram in 2005. At the time, Decker was also undergoing dialysis for end-stage kidney disease.
10

LadyGW I agree wholeheartedly, never sick, one of 7 kids, if nose ran got over it etc., in my twenties started developing odd things, dry eyes mouth teeth issues (rotted from insides out) lost all of them @age 35, I have a lot of AI issues is that what you refer to? I now have the inability to fight infection with IGG, so I amy get IVIG, but not until I know what I currently have as not to upset the knowing if the drug is causing anything or is it my own body. but I am type B+ blood. so is my son.

CAt



Ladygw said:

My belief is that our bodies react to whatever by overhealing. I have had extra cartilage, bone growth, stitches sealed up/repelled. From the time I was 6 months old I have had surgeries, childhood illnesses, injuries. My immune system has always stymied my doctors. I don't get the flu, colds, etc., but have all kinds of other issues. To be honest, I probably should not have survived childhood. I am not gluten free, but limit starches and sugars. I need the minerals and vitamins in grains, etc. Same with meat. I am type O blood, which some say indicated how your body functions. Lots of variables, with overlapping circles.

11

Oh my gosh, thank you so much for the warnings. I had no idea at all - and am so sorry for the terrible physical consequences you are dealing with. I cringed when I read you had your thyroid out at the same time as one of your styloids .. so much for a body to deal with.

Thank you for letting me know,

Hopeful

12

Hopeful, glad to be of help, re: MRI contrast, many patients do not know this and are being sold a bill of goose by their docs as its "rare" but not so rare is what we are finding out and then when docs are faced with contrat problems, they are denying them. For instance the day I found out I had high amounts in me, my PCP fired me as a patient telling me he thought I was "hypochondriac" still curious how he'll explain that one away soon!

I figured that literally killing two birds with one stone was preferable to enduring two surgeries; of course because it took so long, he couldn't do my right side, so i have to have two surgeries anyways! I am hoping I do not have swallowing issues with the right side as that was the worst of it.

The neck itself was not having much pain I have good ongoing pain management (due to Pancreatitis) it was the swallowing and food coming thru nose, fluids swallowing and BREATHING that was the worst..but it gets better, I promise!

I am also finding out that I have some carotid problems NOT caused via the styloid blocking it, there may be a congenital issue at hand, having a Carotid and extra cranial vertebral artery duplex soon with PVR of upper extremity (Pulse volume recordings segmental pressures doppler tracings) seems I have but 40% bloodflow down my left side (the side we already did!) I told all my docs form ENT to Cardiologist to Rheumy to Gastro, that I was NTO getting bloodflow and they kept telling me there was nothing wrong, UNTIL the one vasc specialist did a certain test (holding arms above head, BP cuffs were not finding any flow at all when i turned my head) so things you THINK may not be affecting this area, certainly ARE a possible cause of concern.

Our bodies ARE connected...finding out where the issue is, can make us go broke, but I refused to give up and glad I have not. Heading to two docs this week some imaging and another next week, I'll figure this out!


For those with additional sinus issues I will be posting down the road some more links when I have seen the docs, I needed to.


but here is a ink to what I referred to about the carotids (if I posted this before sorry for redundancy I post on many different sites on interconnected issues:

this site's graphics shows the area in carotids and the anatomy that is variable.

Cat

http://www.cardiosource.org/~/media/Files/Education/Certified%20Learning/SAP/ACCSAP%208/Printable%20PDFs/G1252_A8_10_2_V4.ashx

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Cat I have been complaining fo a feeling of lack of bloodflow as well. I just did the hands over the head think and tunred my head and my right arm (bad side) started to go numb. I am very interested to know what this test is called so I can go to the vascular specialist and ask him to do it. Is there anything that can be donw about this? Could this be due to years of the styloids pressing on the carotids and now they do nto open properly? I have read in some papers that they had to reinflate the carotids after doing the styloid removal if eh artery had been compressed. I am seeing Guardiani at UM next Friday and I really hope she can help me. My styloid is not that long at 3.2 but I know that under my neck seems very stiff and there is no way to pull it out. Nothing makes it less stiff so I am thinking there is something calcified there. I really hope this doc is very well versed on this because so far the doctors I have seen do not seem to know much about this

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Peace, mine did the same, would get an electrical like shock even if I look upward with food in mouth or to a shelf looking for something...I saw Cognetti Tues, he knows all about they Styloid/thryoid/Calcified etc. Ask your doc to perform positional BP (cuffs on arms, as is normally done, then put arms up in arm behind head they will check bloodflow in office, and while you turn head in different directions. They will then order an arteriogram (unfortunately they may have to use contrast but it's Visipaque (I may need flushing post test!) not GADOLINIUM) either done if you have kidney issues may be of issue, but I know the GADOLINIUM is stored in my body by virtue of all the blood/urine/biopsies I've had, getting further along getting this recognized.

a vascular surgeon is who I went to in Brooklyn, after looking around on Net, NY Dr Peter Pappas; I have to get clearance from new PCP My current PCP is moving to FL, so when new PCP gets back from vacay ( I saw his PA) I will get clearance, have the test and go form there, mostly all they can do is corroborate my prelims, advise to take an RX med, maybe stent any areas of occlusion and wait &Bwatch, but at least this explains a whole hell of a lot, like me telling doc s "I Can FEEL my blood o run thru me" I was told I was "delusional by PENN MEDICINE" and altho VEINS have no nerves so you can';t actually FEEL that blood, anything trying got CHUG thru a vein and /or artery occluded as is a beaded necklace or bracelet, you ARE going to FEEL SOMETHING ODD! (see pic of report)
IN all my complaints, you;d think the docs would've figured out what I did reading the NET some docs are stupid when you point this out to them they act sheepishly ignorant SOME docs don't KNOW what FMD even IS just like a der i saw didn't know what NSF was (it's only the most severe form of dermal fibrosis thought to be caused from GADOLINIUM CONTRAST which is why I yell about this left & Right!) many I know had NO KNOWN kidney dis to begin with so HOW'd we ALL GET SO SICK?! HMMM?! and calcified styloids to boot?! hmmm

Cat

anyone with pulastile tinnitus?

the saga continues

276-IMG_4556.jpg (2.69 MB)
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So you did not have the vascular form of eagles then, it was FMD? How did you get that diagnosis? Since that was the case did the surgery for eagles help you at all with your vascular symptoms?

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Hi Hopeful,
I have been gluten fee for almost 9 months. I have been eating a vegan, whole foods, plant based diet for 2 years. I think it is healthy diet but unfortunately it has not helped my Eagle Syndrome pain symptoms. My Dentist recommended a book, The PH Miracle, that promotes a low acid diet to reduce inflammation and prevent further calcification of my ligaments. It is a difficult diet, no processed foods, very few fruits, and primarily vegetables. To me, it makes sense that reducing the acid in our bodies will decrease inflammation, which should help decrease pain. I haven’t been disciplined enough to follow it everyday! I’m just doing the best I can. Good luck to you!

Maremare

17

Peaceful, no as far as i know I actually have BOTH, the styloid was somewhat elongated but Cognetti didn't give me an actual measurement. But it WAS CALCIFIED, showing an issue with my bodies' ability to maintain bone health. The FMD was diagnosed a few weeks later, via mother carotid duplex (I'd had tow or three prior) that found "Stenosis" This one done POST LEFT STYLOIDECTOMY, states: Fibromuscular Dusplasia!" I m meeting with the surgeon soon to go over doing an arteriogram. I saw Cognetti last week we'll wait on doing right styloid to let left heal better. (tongue was partially paralyzed at surgery)
Cat

18

Oh dear, hadn't heard that acids were a no-no too. I love tomatoes ... I eat them every day, they are my favorite food.

I actually have a really healthy diet, I'm not into processed foods ... and don't care for sweets. But I do eat carbs/gluten. In the past I've done the yeast free diet and found that though there was a marginal difference in how I felt, it really was marginal. For me, it wasn't worth the effort.

But so many doctors/nutritionists are talking about gluten .... I'm going to give it my best efforts. I will get The PH Miracle and read it before I start ... might as well do it right.

I'm going to Mayo Clinic in Rochester in mid September. Don't know what they'll come up with ... I want to know their view on Eagle Syndrome and also Ehlers-Danlos Syndrome ... I've been told that it's probable I have that too. Really, what I want to know is how best to reduce the pain.

Yes, we all do the best we can! Thanks, Maremare,

Hopeful

Mare said:

Hi Hopeful,
I have been gluten fee for almost 9 months. I have been eating a vegan, whole foods, plant based diet for 2 years. I think it is healthy diet but unfortunately it has not helped my Eagle Syndrome pain symptoms. My Dentist recommended a book, The PH Miracle, that promotes a low acid diet to reduce inflammation and prevent further calcification of my ligaments. It is a difficult diet, no processed foods, very few fruits, and primarily vegetables. To me, it makes sense that reducing the acid in our bodies will decrease inflammation, which should help decrease pain. I haven't been disciplined enough to follow it everyday! I'm just doing the best I can. Good luck to you!

Maremare
19

I know that are some disease that cause the body to deposit calcium in places it should not be; however, I was under the impression that the calcification does not necessarily mean you have a problem with calcium across the board, but could be response to injury. The body sometimes responses to injury by depositing calcium. Lots and lots of people in this board, including me, seem to have been in MVAs.

20

Read lots of things on this site! First I’ve heard that the Mayo Clinc doesn’t believe in ES? They are always looking to pin your problems on some other Diagnosis? I’m not even sure if Emma’s Doctor’s List has any Eagle’s specialists from the Mayo Clinic? I’m an RN and after getting so sick and the Western Medicine not being able to offer me much in the way of pain relief I decided to try other avenues. I saw a Naturopathic Doctor. He listened and we did quite a few studies! I had a B12 & Vit D deficiency. Also found out I was Sensitive to Gluten & Lactose. I stopped all milk products and stopped eating bread unless it. Was Gluten free. I don’t have Celiac’s disease but if I do eat gluten or lactose my GI tract lets me know right away! When I eat right I know! It’s possible that having anything in your system that your body doesn’t like could cause some kind of inflammation? It’s not an exact Science and we are still learning about this Syndrome! Your GI tract is your second Nervous System in your body & it reacts without you really knowing sometimes? You may have one piece of this huge puzzle? Never stop asking questions as that is how we find things out?