usually I am not a support group guy but I would like to share my eagle-story with you. My sister was diagnosed with eagle some weeks ago after suffering for years. She is still young but had to live with severe pain, tinnitus and swallowing problems. She visited so many doctors and was diagnosed with psychosomatic pain in the end. She got more and more depressed because she knew that the pain was there. By coincidence I stumbled across an instagram page (“all_about_eagle”) that is led by Dr. Nils Heim from Bonn. Luckily we live very close to his city and after visiting him on a Friday in his outpatient department my sister was so relieved. She was able to tell him her full story and show him all the scans that were made. He even could palpate the elongated styloid from the outside and by touching it it was exactly the pain she suffered from for so long. She is having surgery soon. So my questions now:
Is it just the instagram (see above) or is he really known for treating es ?
Any other recommendations for the preoperative time ? How can we prepare ?
Who can tell me something about the Hospital Bonn in general ?
We are glad you found our site. I’m also very glad to know that you’ve found help for your sister. ES symptoms have often been diagnosed as psychosomatic, & many of our members have been sent to psychiatrists for help with mental health. It’s very sad that more doctors don’t recognize the symptoms of compromised cranial nerves & don’t know the symptoms those upset nerves can cause.
Here is a link to posts about Dr. Heim made by a member or members who have seen him so he is known not just on Instagram. I’m sorry I didn’t take the time to re-read them all. He seems to have good reviews overall. https://forum.livingwitheagle.org/search?q=Dr.%20Heim
It is important when discussing ES surgery with a surgeon to understand the surgeon’s strategy. Here are some questions to ask:
•Will the surgery be external or intraoral (external is best)?
•How much of the styloid will be removed (to the skull base is best) & will the stylohyoid ligament be removed if it is calcified or partially calcified (Sometimes there is a gap between the end of the elongated styloid & where the calcification starts on the s-h ligament(s). It’s important that both the elongated styloid & calcified ligaments are removed for best symptoms recovery)?
•Will the stub of styloid that is left be smoothed off?
•Will the surgery be bilateral (i.e. both sides removed in one surgery) or unilateral (requires 2 surgeries for bilateral ES)?
•Is surgery outpatient or does it require an overnight hospital stay?
•Is a drain tube used to help w/ post op swelling or is Prednisone prescribed?
•How many ES surgeries has the doctor done (gives you an idea of level of experience)? More is better but an experienced skull based surgeon often operates in that area of the body so is qualified to do ES surgery.
•What is the expected recovery time? (The answer to this is based on opinion as there is no correct answer. Every person is different in how their body reacts to surgery. Some recovery quickly & others it takes more time & patience). Typically, it can take 6-12 months for the nerves that have been damaged or irritated by ES to recover.
Because ES surgery is major surgery, we recommend getting a second opinion. I don’t know how easy that is to do in your country but in the US it is a straighforward process. I’m including the list of doctors from countries outside the US as there are several doctors listed for Germany. There should be posts about each one on our forum. Using the magnifying glass icon, you can type a given doctor’s name into the search bar, & the posts that mention that doctor will come up.
I can’t answer about the hospital in Bonn but hopefully a German member will be able to tell you about it.
What a lucky girl to have a brother like you! I myself would suggest a second opinion and try to get a 3D scan. Here in Florida it is referred to as the FIESTA. If you look through previous posts you will find more information. It is sad doctors don’t recognize the symptoms, this is due to it’s rarity. Only 4% of the population have Eagle’s Syndrome and only 4% of them are symptomatic. Mine was found by chance at a dentist who did a panoramic x-ray for TMJ. Before now, most Elongated Styloid Process was found post mortem due to it’s rarity.
My fisrt doctor was an Ear Nose and Throat doctor. My second opinion doctor was a throat and neck cancer specialist. This may be an avenue you explore. Being proactive and gently persistent helps get their attention. My story of getting seen by this doctor was very against my nature. It was type A personality style in a E personality : ) I’m glad I put on my warrior mode it served me well.So although he has only done 10 such procedures he is highly skilled in that part of the body (skull base, nerves, carotid artery’s and Vagas nerve. In fact neurological surgeons want him in the surgery when operating on the neck! A lot of nerves get wrapped around this ligament and need specialized skill. I am having surgery with him next Friday for 1 side. I encourage you to have them do 1 side at a time. Spacing surgery 3-6 months apart is suggested by others on this forum.
God Bless you.
That was a thorough post. I’m glad you were so detailed. My surgeon will do intra oral as I need chronically inflamed tonsils removed and in his opinion the recovery time is shorter which for me with chronic fatigue is a game changer. I have to release not having external surgery which was my first choice. I am needing to trust God in this.
He specialize in this and will use a laser. Any surgery takes me twice as long to return to normal as my cells restore themselves very slowly.
@Katflorida, I’m really glad you’ve found someone you feel will do your surgery competently. Are you seeing someone who is on our list? If not, do you mind sharing your doctor’s name so we can add him?
We’ve had many members who’ve had successful intraoral surgeries. Just know that w/ a tonsillectomy & simultaneous styloidectomy, your throat will be very sore for up to 3-4 weeks post op. If you anticipate this & are prepared w/ a liquid or soft diet, you will be well ahead of the game and gel ice packs. A wedge pillow for head elevation (30º is recommended) when you rest or sleep to help reduce throat swelling will also serve you well.
Just make sure you have a conversation about how much styloid will be left behind & make sure he will smooth off the tip of the piece that’s left in. If you have calcified stylohyoid ligaments, please check to see if he will remove those as well as they can also be problematic if left in. Keeping a throat infection at bay will also be a challenge though throat surgeons do Rx an oral rinse that seems to help a lot so ask about this in advance, too.
I will put your surgery date on my calendar & will pray for everything to go perfectly & for a quick, infection-free recovery.
Thank you for your concern. I am well prepared with all you mentioned. Also the surgeon has ordered some lidocaine lollipops from a compounding pharmacy. A 20 second swab will numb my mouth and throat for a long time. The doctor is Bruce Haughey and an equally competent colleague with him is Scott Magnusson at Advent Health in Celebration Florida (near Orlando). Please add them to the directory. I’ll be in hospital 1-2 nights. He will remove completely to the skull base.
I thank God I found this site otherwise I would feel so afraid and alone.
Dr. Magnusson has done surgery for one of our members so is already on our list. I added Dr. Haughey. Good to know there are two doctors in that practice who recognize & treat ES.
Thank you so much for all your help ! I really appreciate that you spent your time for my sister. A lot of information I did not have before. I will keep you updated to help others as well.
I will pray for your sister to find the best possible help she can get. I’m glad you found our forum, & we look forward to answering your questions & supporting both of you as best we can.
I have CFS too and don’t have typical eagle symptoms so glad you found doctors who understand this. I am in France though so not able to get it done in the US b/c of no insurance there. The dx was found in Florida though as a result of some other issues with my atlas, cranial and vagus nerves I was investigating as part of my mast cell activation syndrome. I sure hope all that will go away if I get this impingement fixed. Maybe it’s too early, but the vagus nerve is implicated in CFS so maybe yours will get better! Please report back on that if you can.
Good that you found this nice forum. I’m sorry to read about your medical issues.
As it seems there are no doctors known in France here who would treat ES. EDIT: Maybe the doctor in Toulouse mentioned here is an option:
Recently I talked to a girl from Spain and she mentioned that there was one good doctor for ES in Spain. Unfortunately this doctor may have died in a car accident.
Maybe inside EU is an option for you? (when you are thinking that ES is your problem)
The closest option would be Dr. Heim in Bonn, Germany from my point of view then. Unfortunately he isn’t really familiar with IJVS and CSF leaks. But he treats ES and also those impingements by removing the styloids to skull base as far as possible. Very recently @Eaglefatigue had her first surgery there with severe IJVS on both sides.
GB with Dr. Axon and Dr. Higgins may be another option, though they are not EU anymore.
I’m thinking one of the best doctors for this condition might be Dr. Hepworth and his team including vascular surgeons in Denver, CO, USA as I assess it from reading in this forum. That’s why I chose to see him next.
Hello TheDude
If I remember correctly, Dr. Samji (one of the best doctors) in California, did operate on your SP not too long ago ? And now you are planning on seeing Dr. Hepworth in Colorado, also “one of the best doctors” … wondering if you did not get good results with Dr. Samji ? I’ve been doing some random readings on this forum, so I’m sure I’ve missed lots of updates and info… share your experiences please if you could. Thanks.
