It was my daughter who found the site, where I found the surgeons list. I’ll be honest my expectations for recovery were set too high, so I had to step back and go with the flow. What is the type of ENT that specializes in nerve damage? Was it in your post? I’m still suffering from nerve damage which is taking a LONG time to heal. Hey my call sign NH48 refers to New Hampshire’s mountain peaks 4000 feet or higher.
My Dr Annino said the compression could reverse on its own, but that could take 6 months to a year. I think I’ve gotten some improvements so far. I wonder if hard cardio workouts could speed up the healing? How do they ballon the artery and vein?
@Isaiah_40_31 - quick question, do you know if Dr. Hepworth requires a referral or if i can cold-call the office?
@Rather_b_hiking - My roaring tinnitus & hearing loss started up about a month after my cycling accident. It was my second head injury from cycling - the first was when I was 13 & resulted in a skull fracture & concussion that put in the hospital for a week. Thank goodness for helmets or my second one could have had similar results. I have definitely been reluctant to get back on my bike & ride any distance since the 2015 accident. I now hike instead.
You should be able to cold call Dr. Hepworth’s ofc. He will want copies of your scans to review. FYI - Your initial appt w/ be in person w/ his NP Alison Love. There are no exceptions to that. As I understand it, he will do a video appt w/ you after that.
@NH48 -Love the source of your screen name! I’m an avid hiker & climbing is my forté. Kudos to your daughter for finding us for you! Our kids can be amazing resources for us.
The type of doctor that specializes in nerve damage would be a neurologist. There may be some doctors that have an ENT/Neurology specialty but I don’t recall noting anyone mentioned on our forum. You could try using the magnifying glass icon & searching for posts that mention that specialty.
I would be wary of doing a hard workout as it could make symptoms worse, although that’s just my un-medical opinion from what worsened my symptoms…
Ballooning (angioplasty or venoplasty is done by inserting a catheter in an artery or vein, then feeding this up to the compressed area. The balloon at the tip of the catheter is inflated to widen the blood vessel & then removed.
I have vascular Eagle Syndrome. I had a dynamic angiogram with Dr. Rena at NYU and did not replace my symptoms as I was under sedation. I had heart palpitations. I was re-diagnosed again on April 2029 and two weeks later I had surgery (Dr. De LaCure). This is important for you to see the right doctors ASAP. I had my first surgery in 11/2015 at Northwestern - Dr. Bove. He no longer operates on Eagle Syndrome. Ten days later I went into “bleed control”. I was lucky to be at the right place at the right time and just behind Northwestern Hospital in Chicago at the Hilton on vacation with my friends. It did take me a couple of minutes to get there and that save my life. I encourage you to please seek medical attention… We had common denominators including a gall bladder surgery.
Like you, my doctors blamed my symptom to other external causes including that my husband had passed away months prior. I went on vacation thinking it was stress… upon my return, I went to the emergency room at Skokie Hospital and demanded a ctscan. I told my doctors that I knew something was wrong and it was not “melancholy”… an ENT doctor nearby pointed to look for “Eagle Syndrome”. I had the results moments later. Next - I had a range of doctors from all the Univ. hospitals contacting me and offering to do the procedure. Good luck.
Thanks for the feedback. I didn’t mean a hard workout like a marathon, just a 2 mile walk. I did over do it in the beginning. Treadmill workouts gave me a bad headache and throbbing neck. But glad to be past that. I couldn’t do a marathon anyway. Not into that hind of torture.
A two mile walk is good! I just walked a marathon a few weeks ago. You’ll be able to gradually increase the length & intensity of exercise as time passes, @NH48. Endurance will return.
You had me worried! I’m with you in the marathon camp, I’ll leave that to @Isaiah_40_31
I live in a Chicago suburb and am seeing a Dr. Cundiff on Monday 11/21. He is in Barrington.
Could you please share some names of those doctors that were contacting you?
I would love to be able to have other ES-informed dr consultation.
Thanks so much,
Hi @Tammy1 - We’ve found that Dr. Osborne is inconsistent in his willingness to operate for ES plus he’s a long ways from you. Doctors closer to you who are very experienced w/ ES surgery are Dr. Cognetti in Philadelphia, PA, Dr. Hackman in Chapel Hill, NC, & Dr. Annino in Boston, MA. These doctors have helped many of our members get back to better lives. If you think you have vascular ES, Dr. Hepworth in Denver, CO or Dr. Hackman would be your best contacts.
PatientD is in England which is further than you probably want to travel for surgery.
**Apologies Tammy - I was having difficulties responding from my phone. Dr. Cundiff was not one, mainly there were some doctors in Skokie and thr/out the US - I was dealing with the untimely passing of my husband and yes as described, I had brain fog. @Isaiah_40_31 has listed some doctors and do not recommend the intra-oral approach. My first surgery was intra-oral and I went into bleed control ten days later. Now my take is that the intra-oral complications come when they have to remove the tonsils and on pts that do not have a vascular complication.
**Let me add that I have been reading because my PCP does NOT believe about the complications on the TRANSVERS PROCESS and Vertebra Prominens.
I would like to know if the intra-oral risk is because having the tonsils remove is an invasive, dangerous procedure and adults that leads to bleeding. In the US tonsillectomies are done different than abroad (cauterizing vs. cutting).
I survived my first surgery and now I have vision problems (mainly in the mornings) for what I suspect is a nerve compression or Gd knows what… I had to be resuscitated. My kids were little and my hubby had passed away two years prior. (April 2019) - Dr DeLaCure removed the left side, but I have no feelings on the (right side) of my face and I’m having hearing problems on the right side of my face and that is the reason that I’m looking into an intra-oral approach - I barely have any scars, but this is not about scars, this is about the facial paralysis and hearing problems which is co-related to the transcervial (external) approach vs. the intraoral approach. I heard that there is a new device helping with this procedure. I have been speaking to relatives of Dr. Charbel Moussa to find out when is going to be available…
One of the side effect of Eagle Syndrome and no one is going to believe me, is weight loss. I could shed more than 15 lbs (a week), and I’m being conservative… I have spoken to a physician that told me that the Eagle syndrome is co-related to excessive amount of calcium in the blood and lack of vitamin K2 (vegan) meaning that my diet lacked things like sauerkraut - lol. Fact: when I followed his protocol, the elongation of the calcified ligament was reduced significantly. as you, I also had my gallbladder remove… I wonder what are the common denominators…
You make a good point about tonsillectomy approach in the US. Many, many years ago (i.e. early 1960s) my sister had her tonsils removed because they were very enlarged. After surgery, one side started bleeding. They didn’t catch it until she was vomiting blood & back to surgery she went.
As far as intraoral ES surgery being more risky than transcervical, (external) I think it’s because the intraoral approach allows very little visibility of nerves, vascular tissues & other soft tissues like muscles, tendons, ligaments, etc., so the surgeon is essentially operating “blind”. The transcervical approach allows better visibility of all those things & also allows better access to the styloids & stylohyoid ligaments so they can be thoroughly removed. Not all surgeons remove tonsils when doing the intraoral ES surgery. Some have found a way to work around them.
Your poor vision in the morning is most likely related to the IJV compression you have. I’m sorry your dynamic angiogram didn’t show anything. Have you ever had an ultrasound of your IJV. That can also be done dynamically & isn’t as invasive. Maybe it would show something the angiogram missed?
ES has been known to be related to high blood calcium but there are also other causes. I do not have & have never had high blood calcium levels. My ES was the result of a whiplash injury in my early 20s & possibly a head injury from a bicycle accident when I was 13. There is also some evidence that it is hereditary in some cases.
I edited the previous post - In regards to the calcium, there is related to cancer predisposition. Vitamin K2 removes calcium from blood. Now, the whiplash is just a cause and effect. that is according to physician and I don’t have permission to mention him, but he is in Houston, Texas.
I forgot to say that it’s interesting that K-2 helped reduce your styloid elongation. That’s a great result for you, but I’d say it won’t be a universal aid for everyone. I’ve taken K-2 for many years to help w/ calcium absorption because I’m osteopenic. It did nothing toward helping reduce my styloid elongation.
@HannahM - it is so frustrating because I do have a sense of urgency, but no one really seems to be all that too concerned about it. I am also beginning to realize how much of a wasteland I am in with regard to medical expertise. (Oklahoma) You are very lucky to be in a place with so many resources.
I have an appointment in a couple of weeks with the only doctor (Krempl) in the state who treats eagle syndrome in general - and I don’t know if he would actually do the surgery. I am attempting to get a referral to Dr. Hepworth in Denver, but the process is slow. If you have some suggestion as to how I can speed this whole thing up I would be grateful - I am quite jealous that you actually had surgeons contacting you to perform the surgery.
you know that is really a coincidence - I also took up hiking after my symptoms started (hence the the cryptic screen name that I chose, lol)
@Rather_b_hiking - I would rather be hiking than doing just about anything else especially housework!