Hello friends, how are you? Greetings from Barranquilla, Colombia. Iām trying to keep my faith, but without wanting to sound like the groupās pessimist, this is extremely tough. Itās been 2 months since my first styloidectomy, and my symptoms are worse than ever - mental fogginess, anxiety, panic attacks, shallow breathing, and episodes of dizziness (without losing consciousness) that make me want to stay home forever. Iāve lost interest in socializing, nothing brings me joy. As an anesthesiologist, my job doesnāt make things easier, especially with people depending on me. Iāve thought about giving up countless times, plagued by intrusive thoughts. I have access to many medications and know how to use them (Iām not sure if Iām explaining myself).
In this country, they know nothing about Ehlers-Danlos Syndrome (EDS) or Eagle Syndrome. I work with ENTs, neurosurgeons, and maxillofacial surgeons, and theyāre clueless. Today, I diagnosed a maxillofacial surgery patient who was about to be operated on - I saw the images, and they were enormous (no one noticed).
Sorry for this pessimistic post, but I feel like you all are more empathetic than my family, friends, and medical colleagues (they all say itās psychological)."
So sorry. I had mine 2 weeks ago and it was the worst decision of my life. I had a severe reaction to the anesthesia and had to be hospitalized. I can no longer tolerate any anesthesia, no matter what they use.
I am almost suicidal from the symptoms. All of those you mentioned plus I also have long COVID MCAS, nutcracker syndrome and a possible spinal CFS leak.
I am praying for yoh right now as I know just what your experiencing. I canāt imagine me lasting much longer with these issues and symptoms.
All I can offer, is to pray for all of us that anyone with this disorder thinks long and hard before proceeding. Not trying to discourage anyone, but people need to knownthat this can go wrong.
Thank you for taking the time to respond to this message and thank you for your kind words. Chronic fatigue is also part of my symptoms, so I understand how you feel. You will also be in my prayers. Thank you again.
@Misael - If you have/had IJV compression/VES & had only a styloidectomy without decompression of your IJV, that could explain the remaining terrible head symptoms you have. Your breathing issues & anxiety/panic attacks ring of vagus nerve irritation or compression. If you can get a 3D CISS or FIESTA MRI scan to look at the course of the vagus nerve through your neck, it could be very telling as it may also need to be decompressed.
An upright MRI is used in the US to diagnose CCI, but hEDS is more difficult to diagnose. Our member @Snapple2020 posted a lot about EDS in the past so looking at her posts could be very helpful in that regard.
@harrisonboy - with the difficulty you have/had w/ anesthesia, Iām wondering if you may have a genetic predisposition that keeps you from metabolizing some medications such as in this discussion between @1speechpick & @JugularEagle. Something like this may be part of your problem, but it would take genetic testing to find out. If youāre taking a medication(s) your body canāt metabolize, it could be making you sicker & not allowing you to get well. Just a thought.
Thank you for responding. Yes, Iāve considered that it might be vagus nerve irritation since the symptoms increased after surgery. Iāll consider getting a 3D MRI after the second surgery. Regarding drug metabolism, Iāll look into it, maybe Iāll find something. Iām currently taking several medications: benzodiazepines, beta blockers, amitriptyline, and carbamazepine.
@Misael, Iām glad that you felt able to share how youāre feeling and so sorry that your family, friends & colleagues arenāt supportive. I do remember one of our members who hasnāt been on for a while , @BrooklynGirl , who had vagus nerve issues post-surgery, & I think maybe issues after Covid or the vaccination on top, she did see a rheumatologist later too. Hereās a link to one of her discussions, which seems not very positive but Iām sure things improved with time for her: Plaguing question about flair ups - General - Living with Eagle
We do see members improve after having their second surgery, so will pray that things improve for you if youāre able to have your surgery in December
@harrisonboy , Iām so sorry that you are feeling so bad, and I totally understand that you feel at the moment that you wish you hadnāt had surgery, but it is still early days yet and you do have a lot of health issues all going onā¦sometimes it helps to re-read posts you made before surgery as we can forget how rough we feel in the lead up to that, you were feeling awful then and werenāt sure if youād be able to travel for it, it didnāt sound as if you had any choice but to try the surgery as you said you felt like you were dying thenā¦hold on to the fact that it was necessary because of your vascular symptoms, that it was more than likely to be another step forward on the long journey towards better healthā¦ if some of your post-op symptoms are due to an MCAS flare then hopefully with time this will pass. As @Isaiah_40_31 has said maybe thereās something in the idea that you canāt metabolize the medications & worth reading the ideas suggested in the discussion she linked too. Maybe thereās a detox program which might help you?
Praying for you
Thanks so much for your kind words, I really appreciate it. I donāt know what Iād do without all of you, Iām so grateful to have found this community.
The genetic issue is a possibility. Its not an easy fix. I found out about my issue by accident. You can get a whole genome test from Nebula. They usually have a black friday sale. But that is just the begining of the journey.
I had the Tiva method through the arm because of concern about malignant hyperthermia. I didnt test positive for the most recognised variant but there were other signs. I had an issue with another gene that the Muscular dystrophy Association associated with possible problems. MDA covers quite a few diseases. There can be delayed reaction to anesthesia. There can also be a cumulative effect . You might have been okay for previous surgeries but something causes a tipping point.
The reactions to drugs not processing right can be quite severe. I honestly think I would have had a complete mental breakdown if I had not gotten off a drug in my 20s prescribed for mild depression.
Some of Those drugs you are taking can be a problem for my version of the P450 problem. Most Doctors really arent good enough to deal with this issue. Insurance doesnt want to pay for genetic testing and can be a pain to push it through.
The best way to handle this is to just go get your own whole genome test. Then you go get your one variant confirmed with the $3000 official test if insurance will pay for it.
Genetic Genie will pull up diseases and drug issues.
But it takes a lot of work to try to figure the issues once you get the test.
You need to get to a Clinical Pharmacologist. I know that IU has some kind of consultation service with Physicians but I donāt know the details or if they do out of state consults with a patientās physician. You can check in your area at a University to see if they have similar
Hi all, not sure if it helps but I recently started some pain meds for vES (undiagnosed at this moment in time). I was first started on Amitriptyline working slowly up from 5mg per day before bed to 20mg over 4 days. And then Pregabilin started on 25mg twice daily with food and then up to 75mg twice daily with food after 2 days. I started to get really bad anxiety on day 3 as well as difficulty waking up and so was told to stop the Amitriptyline altogether. I have had one day on just the Prefabalin and I donāt have the anxiety at all. I was in the hospital during this pain med intact so was lucky to have the pain specialists to talk it through with. Just a thought that the medication may be contributing to some of your more adverse symptoms. Hope you can find some effective ways to test yours.
Thanks Isaiah for forwarding this to me. Sorry so long in responding. As you know I am fighting another battle on the home front with developers trying to clear cut a forest by my house.
Misael, I can say after struggling with EDS all my life and having a whole host of issues - neck, dizziness, vertigo, eagles and on and on, I feel for you. We have EDS in the family and I have a daughter who has severe POTS and MCAS. They seem to go hand in hand. Your vagus nerve issues may be POTS. POTS is often misdiagnosed as anxiety.
I have found this monthly newsletter to be great. They are on top of new EDS research and this months did show some italian doctors have found what they think are 2 genes that could formally diagnose hEDS.
@Snapple2020 - As always youāve come through beautifully! You have such encyclopedic knowledge on EDS & related problems both because of your experiences & your daughterās. Thank you for your help!
Iām sorry that these health challenges are an ongoing saga for both of you & the potential deforestation issue has needed to become all encompassing. Are you winning on that front, is it a draw, or is the government where you live pushing for high density housing like it is almost everywhere else in our country?
I spoke with my good friend Kjetil Larsen, who is well-known here and whom I met thanks to God and algorithms. I sent him images from my angiogram that I hadnāt reviewed, and since I was waiting for the 3D rendering, I didnāt look at the 2D images and missed something important that he pointed out: three cervical disc herniations that, according to him, could better explain my symptoms than Eagle syndrome, given the spinal cord compression and canal narrowing.
This devastated me; I wasnāt expecting it. He recommended a new neck MRI and consultation with a good neurosurgeon to operate on that, not the styloid. Has anyone here experienced Eagle syndrome and developed disc herniations, or vice versa? Iām at a loss, unsure what to think or do.
For now, Iāve spoken with a neurosurgeon friend, and heāll see me on Wednesday. Iāll update you on how it goes
Thanks, bro! Iāll definitely ask around. Iām feeling pretty desperate right now, but holding onto hope that things will turn around - for both of us.
