Hello everyone. I’m new to this site and so thankful to have found it! I’ve been busy reading as much as I can on here to better understand what’s going on with me and how to proceed.
A little (or a lot!) about me… I’ll be 38 this month and have been dealing with worsening health problems since childhood. I started having headaches/migraines as a teenager that got progressively worse until they were everyday by age 22. I’ve tried every migraine medication/treatment out there with no relief. I was diagnosed with fibromyalgia as well at that time, but in 2020 I found out that I actually have Ehlers Danlos (hEDS), along with craniocervical instability and POTS. Before that I was being treated for mold toxicity but my symptoms haven’t cleared up even as I’ve slowly gotten rid of the mold in my system.
Other than the daily and extremely debilitating headaches, and all over body pain from the hEDS, my other symptoms include: light sensitivity, intense pain in my ears (primarily the left, which is the side my pain is generally worse on); hearing loss in my right ear; TMJ pain and jaw popping; facial and sinus pain; nerve/muscle pain and numbness down my neck and arms with worse pain turning my head to the left; a painful popping feeling inside my throat if I swallow with my head turned; dizziness/vertigo; chronic sore throats and hoarseness; pain with talking, smiling, chewing; difficulty swallowing and often feeling like there’s something stuck in my throat; dry mouth; nausea; dysautonomia; heart palpitations/occasional chest pain; chronic fatigue; brain fog; and MCAS. Honestly, I could go on but this already sounds ridiculous!
I don’t yet have an official ES diagnosis but last year I got a CT myleogram to look for a CSF leak and after the blood patches didn’t resolve my symptoms, my doctor who ordered the myleogram, who recently learned about ES, noticed that both of my styloids are over 3cm. He’s now ordered more imaging to better see what’s going on and has sent a referral to Dr. Joshua Schindler at OHSU in Portland, Oregon where I live. He brought up my elongated styloids before my recent blood patch at Cedars Sinai in LA, but wanted to see how that went first. Before my latest blood patch and being referred to Dr. Schindler, I tried calling and calling Dr. Andrew Patel’s office but they never answered their phone or returned any of my messages. Maybe they ignored me because I didn’t have a referral but what medical office never even answers their phone?
It sounds like Dr. Schindler could be a good local option for me but I’m worried about how long it might take to see him because I’ve had bad experiences in the past trying to get into see doctors at OHSU.
I noticed another option in Portland is Dr. Baber Khatib but it looks like he only does intra-oral surgeries and I’m not sure that he’s done that many yet.
How do you decide if intra-oral or external surgery is best? It seems like there are pluses and minuses to both. I’ve been leaning towards external because it sounds more effective and I worry about being able to eat and infections after intra-oral given my negative experience with both of these things happening after a sinus surgery I had. (Side note: I told my ENT who did that surgery about all of my symptoms and she never brought up ES to me). I also have a lot anxiety about surgery in general because with past surgeries I’ve really struggled with recovery and often feel worse rather than better. I’m guessing because of my EDS. Have others here with EDS had successful surgeries?
I’ve also seen a lot about Dr. Samji on here and I’m wondering if it’s worth traveling to see someone more experienced like him. Should I be trying to see more than one doctor for different opinions and to hopefully speed up the process?
I’m just very overwhelmed in general right now. I’ve been stuck in a particularly bad flare up since the beginning of January where I haven’t been able to work, drive, or see friends. I barely make it out of bed most days. My poor husband is really overwhelmed trying to care for me while he simultaneously works 60+ hours a week and we have no family anywhere close to us to help. My parents have offered to have me stay with them in New York if I can find a doctor there, but the options there don’t look great. Thankfully they would also be willing to come stay with me if/when I have surgery. But what to do to manage the pain and keep going in the meantime is incredibly overwhelming. Do others here experience prolonged flare ups when the pain is much worse? Has anything helped you out of it?
The depression has really set in from the prolonged pain and inability to function. I feel like I’m trapped in my own body and living the same painful day over and over. Even though I am generally a fairly happy and optimistic person, I feel like I’m losing hope and my ability to keep going. It is at least reassuring to see that some people are finding relief from their surgeries. I guess I’m just afraid to get my hopes up again like I did with the blood patches. I’m not sure how much more defeat and debilitating pain I can take.
Thank you for taking the time to read this long post! The isolation I’ve been experiencing lately and lack of understanding from the mostly healthy people in my life has been a lot on top of everything else.