That’s right. Too many good stories. My life seemed bleak with 50 years ahead of me with a crunchy click each time I swallowed. Surgery ended it. I’d like to meet this guy who says it won’t help. 
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Crevels70 - I’m so glad to read that you have family support. I’m sure making the trip with your son will give you some good catch-up time. Once our children reach adulthood quality time with them seems to be at a minimum.
Not too long to wait! I think when doctors say that they don’t know of anyone helped by surgery, you have to think ‘obviously their surgical technique is not great’, & walk away! There is research which shows high success results- it’s mentioned in the Newbies Guide section- & says that when the surgery didn’t work that it was more surgical error, like not removing enough. I hope that Mr Currie can help!
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Yea I do hope so I’ve ruffled quite a few feathers lol I think they thought they were going to lecture me but I went armed I took along some info from this website and I also left him with the full website address of eagles and suggested that he join he didn’t like it one bit 
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Good for you! Even my surgeon wasn’t interested in this forum. I didn’t try to get him to join but suggested he take a look at it. He totally dismissed it as useless & a place where people were being given false info. Made me a bit annoyed.
He’ll join when he gets calcified ligaments 
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Totally kidding!
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TBH, we probably wouldn’t admit them anyway as members as it’s a peer to peer support group, but it would be educational for them to have a look! 
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Im hopeful that this is an issue that we can get relief. I hear so many opinions, but this a rare situations and most of the Doctors are without knowledge of ES. The Neurologist at Rutgers Neurology University has more knowledge and experience when I go on April 1, my discomfort on right side is not as painful, but still I’m aware it’s there. Praying that you find the right Doctor to assist you.
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Woke up yesterday with a large lump behind my right ear it was so painful I visited ER given injection for pain and told it was due to mastoiditis even the doctor was appalled at lack of support for eagles sufferers she seemed very interested in it and was going to read up on it I’m really annoyed most of my pain is usually on 5he left side I started the norotryplyn took it for 3 nights awful just awful no relief just felt like i wanted to sleep all time no taking it again !
Ams,
I’m so sorry that your symptoms are building & becoming relentless. The styloid process is attached to the skull near the mastoid process & I recently learned that when the styloid is removed to the skull base, part of the mastoid process is often also removed. It makes sense that you could have irritation there depending on how your styloid is growing.
I’m so glad your appt. w/ Mr. Currie is not too far from now. Hopefully, he’ll jump on your case & get you scheduled for surgery ASAP! I’ll be praying for that!
Not long to wait thank god ! I’m excited yet apprehensive just hope Mr Currie understands how much it’s affecting my quality of life it’s all well and good for Dr to say try the pain management route but I feel that I have been there done that n had no relief, I mean they missed it over 4 yr ago because of thier lack of knowledge I’m wondering if we should have a conference to highlight our plight x
There are other nerve pain medications, it can be worth trying others as what helps one doesn’t help another- I’ve found Amitriptyline helps me, others have had good relief with gabapentin. Sorry if you have tried these, can’t remember!
And such a shame to have had another weird symptom, but good that another doctor has been educated! Keep strong & I pray that Mr Currie will listen…
Yea not too long to wait IV been on pregablin gabapentin before for my bone disease no relief but I find I get a good sleep when I take 2 tramadol but can’t take them during the day x
Hello everyone,ci posted the outcome of my visit at the Rutgers Neurology Institute, in the wrong place. Update: after examination cand review of CT Scan, it was determined that yes indeed, I have enlogated calcified styloids, but am symptom free. He started that I’m suffering from arthritis in my neck and spine., Referred me to a spine specialist dealing with arthritis. Currently looking for a good spinal Doctor to further investigate. Keeping everyone that I had discussed ES with in prayer. Hopefully this issue doesn’t rear it’s ugly head in my future. God bless you all and praying for your speedy recovery with treatments that you receive.
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I was sent to a neurosurgeon to look at the bulging discs in my neck. The neurosurgeon said that my issues were not related to the discs.
I hope that you get the relief and care that you need. All the best.
BG
Thank you for your input.
I am continuing to seek what’s causing my issues, may be due to age and degeneration.
Hi Crevels70 -
Seeing doctors who know what ES is but aren’t really familiar with it can lead to misdiagnosis of ES symptoms as being caused by other issues such as arthritis. If your therapy for arthritis doesn’t relieve your symptoms, I highly recommend that you at least have a phone consult w/ one of the more experienced ES surgeons on this forum to get a second opinion. The symptoms you’ve discussed here can all be caused by ES & some by other things, so it is best to try to rule out all possible causes before heading into surgery. The doctors we think are the most experienced are Dr. Samji in San Jose, CA; Dr. Milligan in Phoenix, AZ; Dr. Cognetti & Dr. Newman in Philadelphia, PA. They are all on our current US ES Doctors’ List. They do charge for a phone consult but your medical insurance may pay a portion or all of the cost.
I too hope you find the right treatments for your pain & other symptoms ASAP. I will keep praying for you to that end.
I do agree, but hope you get the answer to your pain soon. Thinking of you…
Thank you, I really appreciate your advice, this Dr is supposed to be an expert, I am continuing to seek professional help because I need to get the proper care and dx. thanks to
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Off to see Mr Currie today fingers crossed he will understand the pain I’m in and offer surgery x