I was wondering, as I have had a many years of a varied unexplained problems , if anyone can tell me what is the longest time that someone has suffered with ES?
Is it fair to say a couple of decades or more?
I just got diagnosed, but I’ve had many of the symptoms off and on since childhood. I’m 24, so running about 15 years for me.
I’ve definitely heard of people having symptoms for several years before getting surgery for one reason or another.
I would say yes to that op. I have had ongoing problems of various sorts for decades. Some of the data shows a high % of ES patients have had tonsils out or whiplash or other neck injuries. I had both of these in my late teens. I started seeing docs in early 20’s. A variety of chiropractors and PT people. Late 30’s I started with proliferon injections in neck from orthopedic docs. That’s when I was told I was hypermobile and had fibromyalgia. At some point I learned I had osteoarthritis in my jaw and have TMJ. My 40’s I sought out help at pain centers, OT, PT and massage. I tried all modalities in search of relief. No doubt high stress made things worse. My early 50’s was a period of high stress and I tolerated the pain. By age 58, I started have full on extreme pain in neck into ear. Yearly flairs for 5 years until final ES diagnosis in Dec 2019. Its hard to say which cart came first.
We’ve definitely had members on here who’ve had symptoms for decades… sometimes people think it’s not been that long, & then read the list of common symptoms in the Newbies Guide Section, & realise how many they have & have had for a long time…so you’re not alone!
Best part of a life time in discomfort.
Its saddening .
I arrived home to be greeted with a letter from South Infirmary Victoria University Hospital for an appointment for December.
It’s a teaching hospital for Cork University College so I’m not sure what to expect but definitely looking forward to it,
Not getting my hopes up to high but you never no your luck in a small town.
Hi optimistic,
You HAVE an appointment! Maybe having another conversation w/ the doctor who said you NEED surgery before heading to the hospital appt. to confirm that he & whoever you see at the hospital are on the same page would ensure a better outcome from your appointment. Not sure if you can have a phone or email conversation w/o an office appt. but we can in the US. Hoping & praying for the Dec. appt to be your next step toward getting those fangs out of your neck!!
Thank you
He spoke into his dictaphone taking breaks in between sentences to make sure he had covered all angles, I ‘m pretty confident he has but we are on Covid level 3 lock down and we think shortly moving to level 5 ,
If we do then there will be no appointment in December.
If I do I will take a letter with me explaining all of my symptoms etc and see how we get on.
Got a feeling I will be surrounded by students holding hacksaws hammers and chisels but so long as they make good tea and toast !
Hope that you do get to go, Covid getting a bit out of hand again
“All I want for Christmas is my styloids out la la la”
77 days to wait then!
Hah! As someone who just scheduled a tentative surgery date in December, I will for sure be singing this song
Thank you for making me laugh, optimistic. I continue to enjoy your sense of humor.
Will be praying that the COVID lockdown never goes past a 3. No upgrades in ours currently. WHEW!!
yes, enjoy your sense of humor.
Mine is scheduled Dec 7th and I had a moment of panic this week fearing it might get put off due to COVID as that is what happened with my 1st side. I considered moving my surgery up to mid-november and made the calls to see if it could be done. I gave it some serious thought as it was possible to bump it up. I decided against it because I have it all planned out to leave work before thanksgiving and not come back till Jan 1st. The deciding factor was the town (Los Gatos, CA) where I am having surgery is apparently very nice and decorated for xmas. Weve been on lock down so long that enjoying a little majic of xmas will be good for the soul.
The Alvin and the chipmunks version is ok but the song was originally written by the Eagles, they wrote ‘Hotel Calcification ‘ don’t you know!!
I’m delighted for you Snapple
The sooner the better, I can’t wait for a change in pain as this pain has been elongated too long
The 10 th of December for me , only a chat , not an operation, if level 5 lock down happens then it’s cancelled
If I can wait all this time then another few years can’t hurt
Ladies ,the sooner we all get back to normal the better , whatever normal is …
Snapple do you have any concerns about your up coming surgery?
I think I’m really anxious to see what issues I have are actually connected to ES,
Will the IBS/Fibromyalgia/ insanity/stomach acid/fatigue/ radio tinnitus/TMJ / rib pain/ etc go away or not?
I can’t wait for surgery
I’d hop on pogo stick tonight and bounce my way into hospital Tigger style if I got the phone call to go now.
Given your track history with ‘vehicles’ I reckon you’d probably crash & fracture the other leg…
Hopefully even if the lockdown level goes up then they could do a phone consult? That seems to be the way things are going…
We are back from a four hour mountain enduro and I came only came off twice but nothing dented except for the tree I fell into
Go hard or go home is what they say
Is a possibility but may need to send an email nearer the time to see if we can
That’s a good idea, thanks.
Good one Jules.
Hey Opt, I sincerely hope you don’t have any further delays with your appt. Too bad they cant do a consult via zoom which isnt ideal but can work.
I wonder too about what symptoms will remain. I already know I have osteoarthritis in my jaw and an unstable neck from Ehlers Danlos - hypermobility. Im still struggling with other neck pain (cervical) that kicks up…especially today on the side I already had surgery. Once the other side is done, I will let it all calm down and see what is left. My surgeon makes sure to advise that he cant promise all symptoms will subside from ES surgery and I already know that going in. Ive noticed when I am rotating left my hyoid bone makes some weird sounds on the right and seems restricted. I already know the right side is longer than the other side and doc wanted to do that side first. I suspect the calcification may be all the way down to hyoid. Of course I hope that by taking other side out, it may help all symptoms overall? I try to be realistic. Hope for the best, expect the worst and hopefully land somewhere in the middle.
Concerns? I hope that my TMJ (jaw/ear) doesnt kick up like it did after surgery on the other side. The next side I dont have the same pain issues in jaw so I am hopeful it wont be a problem. I also am concerned about stomach issues after surgery and pain meds. They gave me oral oxy after 2 doses of IV fentanyl which did nothing. I have very sensitive stomach (acid reflux) after anesthesia and need higher doses of pain meds to be effective which I always explain in advance but am ignored. What might work for others (standard), doesn’t apply to me. Zofran does nothing for me.The oral medication was like burning acid in my stomach. It was so bad, I had to make myself throw up to get it out of my stomach. It took 2 weeks to calm it down. I spoke to manager of clinic after this and they will make sure this doesn’t happen again. Ill take some acid reflux meds for 2 weeks prior to surgery in hopes it will help.
The actual surgery itself, I’m not nervous about because it was a piece of cake and I was in little pain on day 3 and it went way better than I anticipated. Since I went thru it once already and it went well, I’m less nervous about it. Of course the night before surgery, I might get some butterflies.
I had to google zoom and EDS
Zoom sounds like a good idea
EDS sounds difficult to manage, what with that and the ES going on together
You sound like you have your hands full
Yet sound so positive
I suffer with acid and sensitivity of the stomach also, vomiting acid a few times a week despite the ppi’s is awful , sometimes it’s projected through the nostrils as it comes up under such high pressure
Only gaviscon and rest helps with the burning after,
Is sensitive stomach caused by vagus nerve problems?
Can’t eat this, can’t drink that, can’t get the diet right no matter what
3am this morning was vomiting acid again, still not sure if it was the rice or not
What pain killers are you on for EDS and ES?
optimistic,
I’m sorry your stomach is also involved in all of your symptoms. As you said earlier, let’s blame it all on the vagus. There is a great likelihood it’s at least somewhat involved. I wouldn’t blame rice for the digestive issue. It’s a pretty neutral food & is a great acid absorber on its own. I’m sure having to second guess what your gut will tolerate is frustrating. I’d say keep your diet bland - no spices, minimal salt, easy to digest foods (Google can be your friend here to help you define which foods are easier to digest). I had to do a limited diet for 24 hrs for an allergy test I was taking. All I could have was chicken broth, white chicken meat & white rice. It was boring but my stomach felt amazing all day. That was eye opening to me.