Really interesting. But no time to pursue before surgery. 
Do you also have Mast Cell?
When I had a bad reaction to MRI contrast I went down that road. I did an elimination diet. I do think I have some version of histamine intolerance but not MCAS. Clinical pharmacologist said it was likely some kind of mast cell issue at that time but I don’t have the craziness full time of MCAS.
I would talk to the people involved with the surgery and tell them there appears to be problems with meds but you dont have time to get genetic tests so you may need special attention.
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Has she tried CDB? The non addictive cannabis derivative. It’s legal here in Canada. It works great. No side effects. .
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Thanks, Shivaree. She has tried it many times. It does nothing for her unfortunately. She uses a lot of THC for sleep though.
Yes, he believes the nutcracker is the main issue, but others don’t.
Do you know of a doctor in Canada or UK who does the Eagle surgery?
Here is the list of doctors we have in CA who do may do ES surgeries, however, wait times can be a year or more to get a surgery date once the initial consult is complete & surgery has been determined to be the best course or action. A number of our CA members have come to the US for surgery w/ Dr. Cognetti in Philadelphia, PA as his cash price is considerably lower than other U.S. doctors.
CA:
•Dr. Dan O’Connell, 1E4 WMC, University of Alberta Hospital (May no longer be doing ES surgeries)
8440 112 Street, Edmonton, AB, 780-407-4598, https://headandneckclinic.ca/page.php?id=1#4
•Dr. Viallet at HSC in Winnipeg
•Dr Eric Monteiro, Joseph and Wolf Lebovic Health Complex, Mount Sinai Hospital, Toronto 416-586- 4800 (possibly treat ES, he has done a surgery with Dr Ian Witterick, who no longer does ES surgery.) Otolaryngology Care Team | Sinai Health
•Dr Michael Gupta, Hamilton, ON. https://surgery.mcmaster.ca/bio/michael-gupta
•Victoria General Hospital, Halifax, NS (one member had surgery here)
•Dr Stuart Richardson, Spring Garden Rd, Halifax, NS (Dentist, mentioned by a member back in 2014, diagnosed them and would do surgery, don’t know his experience.) Dr. Stuart Richardson - Halifax, NS - Dentist Reviews & Ratings - RateMDs
•Dr Mori, University of British Columbia (call first, told one member he doesn’t do surgery now), Tyler Mori, MD, FRCSC | Department of Surgery
•Dr Don Anderson - 3030 Lincoln Ave Unit 212, Coquitlam, BC V3B 6B4, 1-604-941-9191 (Does only shorten the styloids a bit though, so may not be enough to resolve symptoms)
•Dr Rick Jaggi, Saskatoon, SK, https://www.facecosmeticsurgery.ca
•Dr Khalid (Kal) Ansari, Edmonton, AB - Dr. Kal Ansari - Doctor/Clinic/Service Provider Profile - Medicard
•Dr. Russ Murphy, Saskatoon, SK - R. Murphy - College of Medicine - Medicine | University of Saskatchewan
•Dr. Norbert Viallet, Health Sciences Centre in Winnipeg, Manitoba, Contact Norbert Viallet, Email: n***@umanitoba.ca & Phone Number | Otolaryngologist - Head and Neck Surgeon at University of Manitoba - ZoomInfo
•Dr. Hodaie, via St. Michael’s or Toronto Western ENT departments/clinics , Mojgan Hodaie | Department of Surgery
•Dr Kulbaba, Radiologist, ARC - MSK Ultrasound - Atlas Radiology Consultants will give opinions on CT scans and performs neck ultrasound
UK:
•Mr Axon, Addenbrooks Hospital, Cambridge (Otolaryngologist/ Skull base surgeon, very experienced with ES surgery, special interest in Pulsatile Tinnitus. Also does private work at Spire Lea hospital, Cambridge, for Spire Health care. Mr Patrick Axon - ENT Surgeon (Ear, Nose & Throat) | Ear, Nose & Throat Surgery | Spire Cambridge Lea Hospital Also works with Dr. Higgins (see next entry).
•Dr Higgins, Neuuroradiologist at Addenbrooks) 01223 256052 – his secretary
•Dr Ken McAllister, Blackburn Royal Infirmary
•Mr Michael Saunders, Bristol Royal Infirmary (ENT/ Otolaryngologist)
•Dr Jonathan Hughes, London (ENT, published an article in ‘Top Doctors’ website) Sore throat diagnosis - Eagle syndrome.
Mr Jonathan Hughes : University College London Hospitals NHS Foundation Trust (uclh.nhs.uk)Practices privately with the Circle Health Group in London
•Mr. Parag Sayal, CCI Specialist in London, ph # 020 3448 3568, National Hospital for Neurology and Neurosurgery, GMC/GDC number: 6063410, uclh.neurosurgery.admin@nhs.net
•Mr Rogan Corbridge, Royal Berkshire Hospital, Reading (has performed several surgeries, but lately seems reluctant to operate. Also works privately for Spire Health)
•Dr Mike Rothera, Salford Hospital, Greater Manchester (diagnosed someone, see Daily Mail article: Father forced to Google his symptoms after 150 GP appointments failed to correctly diagnose his rare throat syndrome | Daily Mail Online also does private work)
•Mr George Mochloulis - One Hatfield Hospital, Pinehill Hospital - Hertsfordshire area - https://www.finder.bupa.co.uk/Consultant/view/31679/mr_george_mochloulis - Does intraoral surgery. One member has reported great results from ES surgeries he’s done.
•Mr. Jake Timothy, neurosurgeon, Leeds, Mr Jake Timothy, Neurosurgeon in Leeds | Nuffield Health - (Mr. Timothy does C-1 transverse process shave for VOO caused by IJV compression & did a styloidectomy for our member, PatientD) But doesn’t treat EDS patients now.
•Mr. Rupert Obholzer - Mr Rupert Obholzer | ENT Consultant | OneWelbeck (mentioned by a member who’s also in the FB ES group)
US:
•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. David M Cognetti MD | Jefferson Health
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When you do MRI they do contrast too? I thought only when they do the CT scan. Is it the same liquid they put into the body?
Yes, both MRI and CT can be done with or without contrast but not same type of contrast. Gadolinium/MRI is the one that deposits in the body but there is this HUGE denial on the part of physicians that it does any harm.
During my nightmare I had Doctors claim it quickly leaves the body. Once I got the test that showed mine did not quickly leave the body then they would say maybe the test was wrong, or maybe the levels are wrong, etc/
It will probably be hard for many of you to get your Doctor to order that test from Mayo but thankfully Dr Adam Harker (Indianapolis, IN) listened to me. I don’t remember if insurance covered the test. I didn’t care. I wanted it. He also got me in to see a toxicologist which was basically a worthless appointment. There were very few in Indiana of the type I saw so it took awhile to get into her.
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Hi @mogulmama. I get red, raised skin and turn puffy when I use opioids, most notably with the Hydrocodone W Acetaminophen I was prescribed for my first styloid/IJV surgery. Not sure which of the two drugs caused it, but I’m thinking the opioid. I don’t know if this reaction is MCAS or not. Dr. Hepworth is currently evaluating me for it, but the only test that came back off (of 5) was my plasma histamine. It was TEN TIMES higher than the cut off limit. I don’t know what that means. My second side styloidectomy/IJV decompression is scheduled for September, so a few weeks ago I Googled “non-opioid pain medication” and this popped up. Thought I would throw it out there. @Isaiah_40_31 , has anyone mentioned trying this? (one of the side effects is rash, LOL). Link to med article: Journavx
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Ask him if it is possible you might have p450 problems processing medicine that then triggers a mast cell reaction cascade . You have time to get genetic testing. I will warn you official genetic testing is expensive. you can get a whole genome test for around 500 bucks or less that can get you started if insurance won’t pay the $3000 for one marker test
It also may not provide all the answers because you could have a variant they don’t recognize as a problem yet. I like to use Chrissy Everett and her ovarian cancer gene story as an example.
If you have a cyp3a problem that drug you mentioned could be problematic.
One way to try to figure it out is go look at the Flockhart table and see if you have had problems with any other cyp3a drugs .
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@Ladymaestro1 - Frustrating that you had a reaction to the pain meds you were Rxed for post op pain. We have a number of members who’ve mentioned they can’t take opioid pain meds so you have company here.
It sounds like an interesting substitute for opioid pain meds. The only thing that concerns me is this statement in the article:
the agency’s designations to expedite the drug’s development and review. Other meds that have been rushed to market - COVID vaccine for example - have led to problems later because time wasn’t given for longer term testing to see if the drug could cause other problems.
As with any medication, it’s a try it at your own risk. If it helps, that’s the +, if not, the search must go on for what else might be helpful.
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It is smart to encourage caution with any medication that’s new on the market, rushed or not. I’m pretty excited about that new non-opioid pain medication myself, but I’m not in a rush to be the first to try it.
I have had a lot of orthopedic surgeries and I cannot use opioid pain meds. They disagree with my system. Thankfully, most of the surgeries have been manageable using other means, especially ice, but I am hopeful that this new non-opioid pain medication might be a real game changer in the future
Sharon from Modsupport
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Sharon, what else do you use besides ice?
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I thought I would post the flockhart table since some of you have problems with opioids. This is a very very complex topic. As an example, you might have a variant that they don’t know is a problem yet or one that is a weak problem. But the real issue may be a drug drug interaction. One drug strongly inhibits that gene that is already weak in you. there are some OTC things that can inhibit enzymes that you don’t think would be a problem like Querctin or an acid controller.
If your drug is not on the list it doesn’t mean it is safe for you. It may mean there are not enough studies for it to go on the Flockhart list as a substrate. Plaquenil is an example. Right now it is just on the inhibitor list.
On the flip side, there are interactions that are inducers which are equally as dangerous.
Plavix is on the list. My pharmacy red flagged me because of another drug I was prescribed concerned about drug drug interaction..and that is in a person with no gene problems
anytime a person has a major problem with drugs they need to think about genetic risks. It may be more than just what the doctor says “Oh you may be allergic to it”
I strongly recommend those of you with problems check to see if there is a Clinical Pharmacology clinic in your area (probably not) or ask your doctor about consulting clinical pharmacology. IU does have a consulting service for this.
https://drug-interactions.medicine.iu.edu/MainTable.aspx
and for those that already know you have a CYP2d6 problem start researching how it is believed to help clear brain toxins. If you have an IJV problem you may have even more toxins than the rest of the poor IJV Eagle People
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Great question. I usually use a heavy duty anti-inflammatory around the clock and supplement with Tylenol as needed. So I will use an NSAID on schedule, and then Tylenol when I need it. I can take tramadol, but it doesn’t make a big dent
Sharon
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