Please need help!

8 Month post surgery with Dr Maiz in barcelona, Spain. And i still have pain. I didn’t have ES for sure. Do you Know someone in usa who could help me. Or a famous and good hospital, with a department which is used to treat difficult pain syndrome. I still have a hard point behind my left ear. I don’t have tmj. I think this hard point is a muscle. But it could be something else. Any ideas on a recommanded place in usa about neck and shoulder pain, with high knowledge about neck and jaw muscle, ligament, spine, bones ?? I heard talking about Mayo clinic, and Cleveland hospital.
Please if you know a good place, Tell me.
Maxence(max) from france.

I’m so sorry to hear you’re still in so much pain, Maxence! It sounds like you need to get another CT scan to see if Dr. Maiz left some of your styloid behind. The most experienced doctors in the US cut the styloid(s) back to the skull if possible. Several people have had to have revision surgeries when their first surgeon didn’t completely remove the styloid(s). The styloid stubs that were left behind caused them all kinds of trouble. From what I’ve read on this site, Mayo Clinic has not turned out to be very supportive of people who go there with an ES diagnosis. There are 3 doctors listed on the Doctor list who work at the Cleveland Clinic. It would probably be worth it for you to look at the US Doctors’ List (click on the link above that says HOME - you’ll find the Doctors’ List there) and read about the various doctors. Have a map of the US handy so you can decide which doctors are closest in distance to you. Anyone you contact will want to see a current CT scan w/ radiology report so he/she is informed as to your current condition.

The most experienced doctor who is closest to you would probably be Dr. Cognetti in Pennsylvania:

Thomas Jefferson University Hospital
Dr Cognetti**
215- 955- 6760 ofessionals/david-m-cognetti
Has done several successful surgeries on our members

I hope this information is helpful.

Really sorry to hear that surgery hasn’t helped you Maxence. Not sure how long it is since your surgery, but certainly some nerves can take up to a year to heal- there have been posts from members who found that they were still improving after that.
As Isaiah says, it might be worth getting another CT done, or try to get hold of a report from the surgeon to see how much was removed etc.
Some members have found that seeing a chiropractor helps; it might be worth seeing someone experienced, if you’re healed from surgery- maybe check with a doctor about that if you’re not sure? If not maybe massage might help relax the muscles in that area?

Maxence, I’m so sorry you’re still having pain. So, it sounds like you’re problem is most likely not Eagles?

I went to the Cleveland Clinic in Cleveland Ohio in 2012. They didn’t know that much about Eagles and didn’t think my pain was from Eagles and they sent me to quite a few specialists and did all kinds of tests on me. They sent me to pain doctors, orthopedist, neurologist, cardiologist, internal medicine, ear-nose-throat, etc. It turned out that my pain was from Eagles and they didn’t find anything else causing the pain. But they sure did a thorough workup on me. I don’t know if they’re supposed to be specialists in pain syndromes, but it’s one of the top hospitals in the country. And they tested me for everything they could think of. So it may be an ok place to go. But if you don’t have insurance, it would be quite expensive.

Mayo Clinic in Minnesota is supposed to be one of the best places in the US to go if you have something unusual. (but it’s not good for Eagles). They would most likely do all kinds of tests on you. And again, if you don’t have insurance, it could be quite expensive.

I’m almost sure i don’t have ES.
Because after surgery, i could feel the same hard thing behind my ear near the angle of the mandibule.
So i decided to see another surgeon in France, he make a palpation and said " it’s styloid" ! WTF!
So i did another ct scan and my left styloid has been cut of 2cm. It’s now 1cm. So what i touch behind my ear can’t be the styloid. I really think it’s a muscle which became hard as a stone.
I’ve done all kind of test in internal médecine in order to find an anommally, but the found nothing. And they had no knowledge about muscles and ligaments in the neck and jaw area…
so which hospital do you advise to me between Mayo and Cleveland?

IHow frustrating!

I’m not sure what to recommend. You would probably get a thorough work up at both places. Mayo Clinic is more well-known for unusual cases, so that might be the best option. I just don’t know because they are so stubborn about not acknowledging Eagles. I know I got a very thorough workup at the Cleveland Clinic.

I wonder why the new doctor said it was styloid? Could it be the remaining 1 cm? Did the new doctor see the CT scan? You have a very puzzling case.

Maybe the suggestion to see Dr. Cognetti first is a good one because he is a good ENT and he may be able to figure out what it is.

Ok. Thanks. I know That Cognetti is one of the best about ES. But he is a surgeon. He cut bones, muscles, take off cancers. But would he be able to determinate what is this hard thing by palpation? Surgeons are used to look at radiography, mri and scan pictures. But are they able to find what’s Wrong with their fingers, as could do a physiotherapist or ostéopath, or chiropractor… i have few appoitment in France to try to find what is wrong. If i don’t have any answers, i’ll Côme in USA to see cognetti. After surgery, my left styloid is less than 1cm and i feel this hard thing at the same location than before surgery, so it can’t be ES. I’ll keep u informed about my case. Thanks

I saw Dr. Samji for my ES surgeries but long before he did surgery he did a physical exam using his hands to feel my neck & my throat & down my throat so he could feel my elongated styloids for himself. He did have a copy of my CT scan which he viewed before poking around. I would like to believe that if you see Dr. Cognetti, he would not recommend another surgery without doing a similar exam & evaluation of your CT scans.
I hope this perspective helps.

How long were your styloids ? Did cognetti feel them into your mouth or directly on your neck ?

I saw Dr. Samji in California as that is where I live. Never saw Dr. Cognetti. My comment was that I would expect that Dr. Cognetti would do a thorough exam of your CT scan(s) & of your head, neck & throat before making any sort of recommendation regarding surgery.

My left styloid could be felt externally under my jaw as well as internally in my throat & behind my tongue. My right one could be deeper in my throat but not externally as it grew more straight down. Dr. Samji only cut 2.54 cm off the right one because a nerve was wrapped around it, & he didn’t want to damage the nerve. The left side was longer but had no nerve involvement. He was able to cut that one back to my skull. I don’t know how long my styloids were but if I had to guess I’d say 4-5 cm (plus or minus). They weren’t record lengths.

Bonjour @Maxence, I know it was a long time ago that you posted about ES and your experience in France but I have just found this group and live in France, near the Spain border in the south, 2 hours from Barcelona, and am looking for a competent doctor asap! Can you direct me? merci

@maxence had his ES surgery in Spain. The doctor who did his surgery has since died. Perhaps maxence has since found help in France as the surgery didn’t help the pain he was having which he felt was perhaps muscular. If you click on the magnifying glass icon in the upper right of this page & type in maxence links to his posts will come up.

Oh that is terrible news about the dr. in Barcelona! I just looked that Dr. in Barcelona up but haven’t had time to investigate further. I did do the search for Maxence and sent him a message but it was many years ago that he posted so maybe he is not active. Thank you.

Hi Isaiah, How did you learn of this doctor’s passing. He’s still listed online with a phone number etc. but of course that could just be old. I don’t speak Spanish well enough to make phone calls in Spain.

Hi jteleia,

One of our members who lives in Spain sought ES surgery from Dr. Maiz last year & learned that he had passed away. I saw a post by @TheDude yesterday that said he had died in a car accident. We had gotten information prior to his passing that he was ill & had left his medical practice so the stories are a bit mixed. His passing was a great loss for our members who are in that area of the world as he was the only doctor we’d gotten good reports about in Spain.

I’m sorry to say you will likely need to travel outside of France to get help. Since you have vascular ES, Mr. Axon in GB would be your best resource as he is very experienced w/ vascular ES surgeries. It would be great if you were able to find an ENT, Maxillofacial, Head & Neck, Vascular or Neuro surgeon in France to help you. It’s hard to believe there isn’t someone in that country who is familiar w/ ES, but it may be like the proverbial “looking for a needle in a haystack” in order to discover that doctor.

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