Long road, referred back to ENT for eagles

General
1

2.5 years ago I developed the worst pain behind my eye, nostril, and the back of my throat above the tonsil on the left side. Also my inner ear and inside my jaw has been killing me. I just 1 hour ago got home from getting my wisdom tooth extracted to rule it out.

Long story short, I went to my doctor, dentist, oral surgeon, and the oral surgeon referred to neurology.

Neurology did MRI, spinal tap, every blood test possible, found a lesion deep behind my eye by the pituitary gland, and diagnosed as Tolosa-Hunt Syndrome, but the pain never got better even after steroids reduced the lesion.

Went to new neurologist who eventually referred for craniectomy and microvascular decompression of trigeminal nerve. ($77,000)

So 2 months after that surgery the pain was right back to where it was before surgery. I asked for ENT referral, which neurologist gave.

ENT dug his finger into the back of my throat which immediately cause extreme pain. He scheduled a CT and at the follow up for the CT he injected numbing stuff into the back of the throat.

Then he scheduled surgery for Eagles. I told my neurologist about it, who talked to the ENT, and the ENT cancelled the surgery and told me to go back to the neurosurgeon for face pain issues.......

Neurologist didn't have any idea, my problems don't fit the trigeminal neuralgia diagnosis, but it certainly is involved in giving pain across my cheek.

Neurologist sent me to pain specialists and basically said good luck, come back in 6 mo.

After 3 months with the pain specialist, I had an appointment with his assistant who said I was too young to be on narcotics, and she got me kicked off oxycontin after taking 2x 20mg for a year. She wrote nasty stuff about me in my notes as well because I told her to screw herself when she told me to read a book instead of take pain meds. I work as a programmer, never abused my meds, and they definitely helped.

So I finally tried a new neurosurgeon at a different hospital, one of 2 in the city that are specialized enough to do PNS implants for trigeminal neuralgia. I brought all my imaging and notes to him which he reviewed.

He said the craniectomy was the wrong procedure, I don't have trigeminal neuralgia or at least it's not the main problem. He said the most likely cause is the lesion from Tolosa-Hunt Syndrome did damage to the nerve and structures in the area, and I'm one of the rare cases 1 per 1 million population that are just plain f*****. Nobody specializes in it, it doesn't fall into anyone's domain really. Most medical professionals have never even heard of it.

He also said to go back to the ENT, which is when I told him the ENT had already come to the conclusion of Eagles. He said that was very interesting, and I should definitely do the surgery as it very well could be the cause of the pain above the throat.

2

what do they have to say for themselves after their experimenting?

Someone needs to read some medical texts it seems before they touch you again.

Ask the oral surgeon to do a panorex. It has been the best view of my ES's over the 12 CT's I had.

Keep the second neuro...he seems to be able to think.

3

The second neuro didn't keep me as a patient! He said there was nothing he could do that would help me and encouraged me to see an ENT Surgeon, then said goodbye.

I'm planning to tell the ENT to please call the neurosurgeon and get his opinion, but the neurosurgeon is at Swedish while the ENT and everyone else are at University of WA. Swedish diagnosed as Tolosa-hunt 2 years ago, UW said no it's not, it's trigeminal neuralgia.

I now went back to Swedish after the end of the line at UW, and he said Tolosa hunt and probably Eagles.

The UW pain specialist's assistant made it her mission to get me kicked off all my pain meds the neurologist had me on for 1.5 years. Ruining my life and the only thing she proposed was reading a book and seeing a psychologist. She looked at my age and said "You're too young to be on narcotics, what are you going to do when you're 40?", like pain level has something to do with age. I'll be dead before I'm 40 because my life is miserable. She left nasty notes in my file and my neurologist read them and said he wouldn't be prescribing me anymore medicines.

So after more than a year of taking Oxycontin daily from my neurologist, along with 150mg nortriptyline, 600mg effexor, and trying dozens of other drugs, I had to quit oxycontin cold turkey because of the opinion of a doctor's assistant... I filed a complaint but never heard anything.

I currently only see a psychiatrist for my face pain..........after 2.5 years, more than $100,000 US (most from insurance but I spent thousands while being disabled) now my pain is 30% worse without pain meds and I'm making payments to various hospitals for bills that are more than my income. Basically a slave and still in agony.

I had my wisdom teeth pulled today to rule it out.

This was my craniectomy, and because I'm young and can talk fine nobody believes the pain, like I just do this for fun or something.

I've had 6 MRI's of the brain, 2 CT's of the head and neck, Xrays through my mouth to the top of my spine, a spinal tap, EMG test (literally hundreds of electric shocks and needles!!!!!), and only the first MRI showed a lesion, but after getting rid of it with steroids the pain never went away and nobody takes me serious.

The EMG test showed neuropathy. So I wasn't making that up.

4

I’ve been round the block for six years too. Four years of 24/7 pain. I’ve been finally diagnosed and will be seeing Dr Okeson at Univ of Kentucky August 14th. Only very few drs know how to treat eagles syndrome. If you have it ES, regardless of the other medical issues you may or may not had in the past… These are my thoughts in case:

  1. You are not crazy the drs are arrogant and rude that you have seen.

  2. I too only get some relief with responsible narcotic taking but the new paranoid drs and most neurologist refuse to prescribe. There is so much wrong with drs being told how to practice by liability and insurance companies.

  3. I’ve had 8 MRIs over the past few years by drs thinking this view or that one will find etc. … Get a copy of your panoramic x Ray from your dentist. Then get an Ent or medical dr or oral surgeon to do a 3D scan.

These are the only two Simple test you need to confirm eagles syndrome.

  1. Go to one of the four places that treats Eagles. The very best. Fla or AZ mayo clinics, Cleveland Clinic, or U of Kentucky. Maybe one more out in Cali. … Don’t just let any old do your styloidectomy.

  2. I know the pain you are in that is uncovered without good meds. … It’s awful. But ES is truly rare and most are so ignorant. It’s maddening and lonely.

Praying for your ES to be fixed soon. You poor person to be cut on for drs just guessing and not knowing. Wishing you a brighter future! Vent anytime

5

It just kills me hearing your stories. ~~ I guess I'm 'lucky' as for 24 years I thought I 'just' had fibromyalgia. Oh my gosh, it was a year ago today I just realized that I first heard the words Eagle Syndrome.

The good news was that ES explained my facial pain. The bad? It's so darn hard to find anyone to do anything about it.

Shindig ... man, I feel for you. I was on oxycontin 10mg/twice a day for almost 10 years and those were good years, pain wise. Then my stepmother confronted me and told me I should go to rehab. Little surprise I was very upset ... and decided to wean off the pain meds. I gave myself three weeks ... not cold turkey like you, but I had no shakes, no vomiting, no withdrawal. But guess what I did have? PAIN.

I too believe that judicial use of narcotics is not a sin. I understand that it does tax my body, my liver, whatever. But I'd rather die earlier, at least being able to get through life without constant and severe pain, than later.

Am thinking of you all ... Hopeful

6

It seems you have run into the most deaf group of butchers who happen to have the MD after their name.

who are these people?-even in AA if you take meds as prescribed its fine. Pain management is a whole profession un to itself and I was in it for 12 years and didn't ever have anybody question taking what was prescribed to me by one doctor. there is no need to judge you for taking meds as instructed. My pain management doctor finally agreed with me and told the medical board that it wasn't going to help and to have my styloid remove as he has exhausted all his meds-and I was getting pretty tired of them too.

"is it my fault I want to die with normal sized liver?" I finally asked him.

If you take them like a junky its bad and I don't see anything like that here. what a snap to judgment or ass covering.

What does any picture show you have?

In my case I had an ENT act as my advocate for 15 years-he wouldn't do the surgery but would send me to any doctor who might.

Just as a backdrop--I has ES on my right side beginning in 1989 and surgery in November 1990. But in the year and a half I had 3 mri's, 2 CT's, x-rays and all showed nothing. "allergies-but didn't, deviated septum and the doctor would fix that and give me a nose job and charge insurance-this was a common LA scam but if my pain was caused by that wouldn't I have had it all my life-I called him a quack in his waiting room. I was diagnosed by my orthodontist from my just describing my symptoms in Aug 1990. He said you have eagles syndrome and need a panoramic x-ray so I had it and it showed what I could feel with my finger and my right side styloid was removed and have had no pain there since.

So when I got the symptoms on my left side in 1996 I knew what I had. but it took 6 years to get surgery for that side. The surgeon removed my hyoid bone by mistake in 2002, only 3 cm in 2003 and finally had a great doctor removed the other 3cm in 2013. A bunch of **** ups lead me to finally getting the right doctor. But at least they were in the right area. But I saw 12 doctors in the past 15 years and my rule became "the first sign of non-empathy and I'm out of there".

But what you have been through is ridiculous. they are all over the map. pain meds no pain meds un-needed surgery and they say you have the problem? They screw you up worse and say you have the problem but your problem is them.

What does the CT show? but even they aren't so great-my February 2013 CT showed my left to be 9mm longer than my right but when I was operated on it was 30cm longer. Get a panorex-simple and a single x-ray and pretty definitive.

Find a skull base or reconstructive surgeon-I was sent to doctors at UCLA and Cedars in LA and finally had it done.

But with my surgical history I think I became kind of radioactive and no one wanted to operate for the third time in the same place.

if my ortho can diagnose me in 1990-this is not some rare thing anymore according to this site and my doctors and my 25 years of learning that bad doctors are not so rare.

But with your history don't let them touch you again until they show and tell you why. I trust doctors too but these seem to be guessing. I hope you are recovering from the tooth extraction well also.

don't let the fools get you down-maybe your psych. can do something to find a good doctor who will investigate your history and listen to you with compassion.

Also my insurance company became somewhat of my advocate because they realized they had paid $10,000's of dollars for useless unneeded surgery and they were going to keep paying for the symptoms of the cockup surgery and all the subsequent doctors until I found relief-so they became eager to help and they got me the last doctor I will need for ES-finally! Ask them to deal with the hunt if you can since they would know who they had do this surgery or diagnosis near you.

So I've had 15 years of venting and reading your history, you keep on you have the right.

7

Thanks for the support guys,

I could have been a spokesperson for opiates for chronic pain.

I landed and still have my dream job as a game developer while I was taking 2x 20mg oxycontin and a handful of other meds, I started 9 days after my craniectomy. Before that I'd only worked construction jobs. I did drop out of college my final term after the face pain became debilitating, but have made up for it with experience contracting at some big companies here in Seattle.

But the rest of my life is miserable.

8

Shindig, a few observations, (BTW my pics post op 3 months now, numbness for most part gone, swallowing a bit better -wehever they had to mess with muscles during incisions, they can and do go numb, it takes time to regrow nerve fibers, I was sent home with a feeding tube, hard time dealing with swallowing water and food an having it come thru nose, choking me-meds had to be ground down to swallow with water) the other post op pic taken at hosp, shows redness, as I have lyem/Lupus Sjogren's no one knows why adhesives make me break out red or blister-see also a pic done for skin biopsy that actually blistered-never had problems as kid with adhesive bandaids, as adult_big time blistering!) go figure?! second two pics will be added to next message this will allow edit only to typing not pics adding!)

did they do anything at all for the Tolosa Hunt? besides steroids? friend of mine went to CA for some help on a PTi tumor, I amy be headed to CA as well for Empty Nose syndrome! I make no sinus contents whatsoever except when infected with Klebsiella, Staph & Moraxella! (hospitalized 3x in 2012 for pneumonia nd once post thryoidectomy this year alone!) sick of being sick! Low IgG as well, when does it end! (dry form Sjogren's tha tI tested ENG for but am dxd based on signs symptoms, like salivary stones, poor parotid uptake, pancreatitis etc)

1) read some of my posts on MRI's with contrast if you have had them they can ADD to pain FYI:

2) I had some elongation of styloids Dr Cognetti wasn't sure was long enough and feeling for them he was not convinced either, it was the panorax that showed the elongation, he felt if they were long on left he would entertain doing the right, BTW I had a thyroid cancer/styloidectomy, with some tissue retained from the thyroid incision which is why it appears ticker than the styloid on left-, but it is healing very well) or investigations as to whether Gadolinium (from MRI's) was in tissue IT WAS tho noT enuf to prove it has poisoned me, BELIEVE ME IT HAS, I am7 years post mast MRI and have high amounts of drug in me causing tissue/skin fibrosis? ITS THSE GAD AND HAS ALWAYS been the GAD not FIBROMYALGIA yes GAD! POisON! Spent 4 yrs bedridden with Lyme go the MRIs it caused me more pain and suffering but I have good pain control because my docs believed me, for that I am grateful. But I Once had BCBS call me at home telling me, "If we GET 3 docs to TELL you that you have NOTHIGN wrong with you, are you GOING TO DROP THIS?! They wanted me to be scared and not get a full diagnosis, for which a $5.00 antibiotic is looking really cheap right now-they've spent $68,000.00 on em so far this year, THAT is their discount rate...maybe 20% of what it would cost without insurance. The entire medical community needs to be overhauled form pain control to starting to develop a board certification in DIagnosticians...Ive had three docs tell me I knew more about my conditions than they did, such a shame I never even went to college never mind med school.

3) when Cognetti (Philly Jefferson Hosp) took L styloid < IT WAS CALCIFIED, he had to use tools couldn't brea with fingers, this proves correlation to calcification, which toxic heavy metal Gadoliniumc ould cause. HE is heavily aware forma patient self study we did, that the GADOLINIUM can affect patients and this alone should be a consideration of rALL OF US EVER HAVING HAD AN MRI W/CONTRAST, if you look up "Heavy metal poisoning symptoms, you will see what it is like!

SO cool it on MRIs with contrast POST MRI w/contrast MRIs can also MOVE AROUND previously done MRI's with contrast so I MO, it can still harm, jeu tshotting localized GAD from one organ to next ( I have yellowing in left eye clear sign of GAD, etc)

it has also caused some bloodflow issues that are now jeu teeing discovered as only having 40% flow ( I had some testing down this past week awaiting some results)

I developed fibrosis of bowel most likely either from both MRI's with contrast (had 7 of them!) CREON taken for pancreatitis from SJogren's syndrome to from the many years of Paxil Elavil Effexor, Neurontin, Bayocl Vioxx & Zelnorm (taken all of market the last 3!) (all they do is pack on pounds making us bedridden zombies)

I am leaving a few links here about getting proper care for pain, check this site out, PAIN is a condition in and of itself no matter where the pain is emanating from and needs to be treated, no one should have to tough it out; do pain meds cause other issues yes, as long as there is no abuse of the med, it should be given so you can have quality of life. Being almost suicidal from pain is no way to live!

I a also finding out about some types of carotid malformations that can affect blood flow and cause spasming as well (Id been self dxd as needing MVD< the Styloid surgery has helped SOME, but I am still spasming and can alleviate my pain upon acupressure, but cannot sit in bed all day with a ball at the back of my head (Search red ball and posts on that) here...

here are the link, please review ALL of your stidues, let us know how many MRI's with contrast you have had, if you want to have blood and urine tested, you can go to local hosp they can do senouts to Mayo and you will know within one week if you have HIGHG levels of GAD in you, then TAT is that start of all the fund (i've had nine biopsies done for derma fibrosis-two proved GAD and two proved "focal dermal fibrosis and focal dermal fibrosis with increased mucin) many doscs refuse to believe those with kidneys without disease processes going on PRIOR to MRIs are having issues now and if the docs have missed Kid Dis, then that is their fault either way, docs have to become more aware of what they are doing to our bodies. .s:

http://americannewsreport.com/nationalpainreport/ask-the-pharmacist...

AUNT MINNIE & GE & $5 Million verdict
http://www.auntminnie.com/index.aspx?sec=prtf&sub=def&pag=d...
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-abou...
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.
and it (GADOLINIUM is in our water by virtue of a ll that we pee out when we get incepted to ur veins, I personally know of an infant with GAD in them...that NEVER had RI so sad!)
let me know if you have any questions!

Cathy

Anthropogenic gadolinium as a micropollutant in river waters in Pennsylvania and in Lake Erie, northeastern United States [An article from: Chemie der ... - Interdisciplinary Journal for Chemical] [HTML] [Digital]

M. Bau (Author), A. Knappe (Author), P. Dulski (Author)
271-IMG_4449.jpg (1.94 MB)
9

other two pics: showing post biopsy left leg calf area, blisters from bandaid, I used my husbands' sock cut off at toe, to pull up and hold a gauze pad in place rather than blister from adhesive and the second lci is post op, right after surgery for which they said the lower reddish area had "Crepitus"which is air under the skin...more on that another time, trying to figure if I have some trapped air from prior surgeries, when I suffered a hematoma when I bled out during colorectal survey (one thing leads to another!)
Cat

Cat said:

Shindig, a few observations, (BTW my pics post op 3 months now, numbness for most part gone, swallowing a bit better -wehever they had to mess with muscles during incisions, they can and do go numb, it takes time to regrow nerve fibers, I was sent home with a feeding tube, hard time dealing with swallowing water and food an having it come thru nose, choking me-meds had to be ground down to swallow with water) the other post op pic taken at hosp, shows redness, as I have lyem/Lupus Sjogren's no one knows why adhesives make me break out red or blister-see also a pic done for skin biopsy that actually blistered-never had problems as kid with adhesive bandaids, as adult_big time blistering!) go figure?! second two pics will be added to next message this will allow edit only to typing not pics adding!)

did they do anything at all for the Tolosa Hunt? besides steroids? friend of mine went to CA for some help on a PTi tumor, I amy be headed to CA as well for Empty Nose syndrome! I make no sinus contents whatsoever except when infected with Klebsiella, Staph & Moraxella! (hospitalized 3x in 2012 for pneumonia nd once post thryoidectomy this year alone!) sick of being sick! Low IgG as well, when does it end! (dry form Sjogren's tha tI tested ENG for but am dxd based on signs symptoms, like salivary stones, poor parotid uptake, pancreatitis etc)

1) read some of my posts on MRI's with contrast if you have had them they can ADD to pain FYI:

2) I had some elongation of styloids Dr Cognetti wasn't sure was long enough and feeling for them he was not convinced either, it was the panorax that showed the elongation, he felt if they were long on left he would entertain doing the right, BTW I had a thyroid cancer/styloidectomy, with some tissue retained from the thyroid incision which is why it appears ticker than the styloid on left-, but it is healing very well) or investigations as to whether Gadolinium (from MRI's) was in tissue IT WAS tho noT enuf to prove it has poisoned me, BELIEVE ME IT HAS, I am7 years post mast MRI and have high amounts of drug in me causing tissue/skin fibrosis? ITS THSE GAD AND HAS ALWAYS been the GAD not FIBROMYALGIA yes GAD! POisON! Spent 4 yrs bedridden with Lyme go the MRIs it caused me more pain and suffering but I have good pain control because my docs believed me, for that I am grateful. But I Once had BCBS call me at home telling me, "If we GET 3 docs to TELL you that you have NOTHIGN wrong with you, are you GOING TO DROP THIS?! They wanted me to be scared and not get a full diagnosis, for which a $5.00 antibiotic is looking really cheap right now-they've spent $68,000.00 on em so far this year, THAT is their discount rate...maybe 20% of what it would cost without insurance. The entire medical community needs to be overhauled form pain control to starting to develop a board certification in DIagnosticians...Ive had three docs tell me I knew more about my conditions than they did, such a shame I never even went to college never mind med school.

3) when Cognetti (Philly Jefferson Hosp) took L styloid < IT WAS CALCIFIED, he had to use tools couldn't brea with fingers, this proves correlation to calcification, which toxic heavy metal Gadoliniumc ould cause. HE is heavily aware forma patient self study we did, that the GADOLINIUM can affect patients and this alone should be a consideration of rALL OF US EVER HAVING HAD AN MRI W/CONTRAST, if you look up "Heavy metal poisoning symptoms, you will see what it is like!

SO cool it on MRIs with contrast POST MRI w/contrast MRIs can also MOVE AROUND previously done MRI's with contrast so I MO, it can still harm, jeu tshotting localized GAD from one organ to next ( I have yellowing in left eye clear sign of GAD, etc)

it has also caused some bloodflow issues that are now jeu teeing discovered as only having 40% flow ( I had some testing down this past week awaiting some results)

I developed fibrosis of bowel most likely either from both MRI's with contrast (had 7 of them!) CREON taken for pancreatitis from SJogren's syndrome to from the many years of Paxil Elavil Effexor, Neurontin, Bayocl Vioxx & Zelnorm (taken all of market the last 3!) (all they do is pack on pounds making us bedridden zombies)

I am leaving a few links here about getting proper care for pain, check this site out, PAIN is a condition in and of itself no matter where the pain is emanating from and needs to be treated, no one should have to tough it out; do pain meds cause other issues yes, as long as there is no abuse of the med, it should be given so you can have quality of life. Being almost suicidal from pain is no way to live!

I a also finding out about some types of carotid malformations that can affect blood flow and cause spasming as well (Id been self dxd as needing MVD< the Styloid surgery has helped SOME, but I am still spasming and can alleviate my pain upon acupressure, but cannot sit in bed all day with a ball at the back of my head (Search red ball and posts on that) here...

here are the link, please review ALL of your stidues, let us know how many MRI's with contrast you have had, if you want to have blood and urine tested, you can go to local hosp they can do senouts to Mayo and you will know within one week if you have HIGHG levels of GAD in you, then TAT is that start of all the fund (i've had nine biopsies done for derma fibrosis-two proved GAD and two proved "focal dermal fibrosis and focal dermal fibrosis with increased mucin) many doscs refuse to believe those with kidneys without disease processes going on PRIOR to MRIs are having issues now and if the docs have missed Kid Dis, then that is their fault either way, docs have to become more aware of what they are doing to our bodies. .s:

http://americannewsreport.com/nationalpainreport/ask-the-pharmacist...

AUNT MINNIE & GE & $5 Million verdict
Study links Gadolinium MR contrast to brain abnormalities
By Wayne Forrest, AuntMinnie.com staff writer
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.
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.
and it (GADOLINIUM is in our water by virtue of a ll that we pee out when we get incepted to ur veins, I personally know of an infant with GAD in them...that NEVER had RI so sad!)
let me know if you have any questions!

Cathy

Anthropogenic gadolinium as a micropollutant in river waters in Pennsylvania and in Lake Erie, northeastern United States [An article from: Chemie der ... - Interdisciplinary Journal for Chemical] [HTML] [Digital]

M. Bau (Author), A. Knappe (Author), P. Dulski (Author)
269-IMG_2167.jpg (110 KB) 270-IMG_4191.jpg (122 KB)
10

I have reallyappreciated reading your story. I too have gotten surgeries that were not necessary, been to soany doctors that i cant keep track anymore, and so frustrated that i have wanted to crawl undet a rock and die.
I had menegitis in May of 2010. The doctors kept telling me to go home because it was a tension headache from having 3 kids. After 12 days they finally did a spinal tap.
4 years later i kept having pain in my left ear like someone was shoving an ice pick in there. The infectious disease doc said that the menegitis caused permanent nerve damage.
I too go to a pain specialist and understand the stigma that comes with it. But i dont know what i would do without him.
GL with the ES. I have had external surgery and my tonsils out. Didnt help, but if you need anything just shout.

11

Everyone, when I see my vascular surgeon next week for the circulation problems (Could be a congenital situation or HFS/blockage, however, the LEFT styloid removal helped me "Some" but I am still spasming" what ever the case, I will let everyone know what he finds! then on to the Right side, being ever so careful hopefully with my tongue this time! (as I have fingers & TOES crossed!)

is anyone else here having issues with their skin being tight in neck vicinity? usually the older we ge the looser we get haven turkey-waddle neck, mine is opposite! I yes + for ANA but a LOW + both for Lupus & Systemic sclerosis but tested for "focal dermal fibrosis with increased mucin " in two areas I suspect Gadolinium had affected, more on this when I get some more paperwork done!
Cat

12

Joyee - I've only seen one ENT who was willing to do surgery on my styloids but said since they're so long he'd go in at the neck and go up 'as far as it was safe'. Said he couldn't be sure that it would help the pain, likely the nerves in that area had been compressed for so long it might be permanent.

So I'm not the smartest person in the world, but I don't have pain in my neck! Though I might, after the surgery.

I'm so glad for the many where surgery has helped ... but I'm fearful of doing a surgery that won't make a difference anyway and may have its own negative consequences.

Are you the only one here that a stlyoidectomy didn't help?

Thanks, ALL of you, for sharing,

Hopeful
joyee said:

I have reallyappreciated reading your story. I too have gotten surgeries that were not necessary, been to soany doctors that i cant keep track anymore, and so frustrated that i have wanted to crawl undet a rock and die.
I had menegitis in May of 2010. The doctors kept telling me to go home because it was a tension headache from having 3 kids. After 12 days they finally did a spinal tap.
4 years later i kept having pain in my left ear like someone was shoving an ice pick in there. The infectious disease doc said that the menegitis caused permanent nerve damage.
I too go to a pain specialist and understand the stigma that comes with it. But i dont know what i would do without him.
GL with the ES. I have had external surgery and my tonsils out. Didnt help, but if you need anything just shout.