Life with ES is no joke

Patiently waiting for my referral back to get an appointment with a doctor who can take this damn bone out! The one guy who is mentioned on the Doctors List in Canada Ian Witterick is NO LONGER taking anyone, he is only taking cancer patients now..He was the one that I was praying i could see as I don't have many other options on that list in Canada. He sent my referral to another guy he works with but I don't think he's as experienced as he's pretty new in the field, and he's needs too talk to someone else about it before I make an appointment, which doesn't sound very promising...yay me!!! Am i the only one on here that can't function?? Like literally this is PAINFUL!!!!!!!! I can't move my head or the symptoms are crazy. Thank god i haven't went back to work after my baby, i couldn't do it, no way! Diladud DOES NOT WORK! Can someone tell me why such a strong opioid doesn't work for this pain?? Is it more nerve pain? Im so terrified this is gonna kill me before someone can help me...I would love too see Dr. Cognetti but that wayyyyyyy too far away for me as I'm in Canada.... and it doesn't help that not one doctor knows what this can anyone take u seriously if they don't even know what it is or what it can do too you? Can anyone feel the styloid bone like I can? I feel it right under my chin, far back, when i press into it. God it hurts...I rarely touch it now cause it makes it worse...I can just curl up in a ball and die its that painful :(

I'm sorry that you can't get to see this doctor, it must be a huge blow- but hopefully the new doctor can operate. It is worrying if a doctor hasn't got experience, but maybe Dr Witterick would explain how to do the op? If the new doc has experience of working in that area, then that's a good start.

Pain relief varies with people, and sometimes it can take a few tries to get the right medication. I'm sorry, I can't remember what else you've tried? Nerve pain doesn't always respond well to opioids. Could you get a referral to a pain management specialist? They might be able to help as that's their speciality.

Sending you a hug- at least on here we do understand...

Ya its terrible!! I should see a pain specialist but I don't know if there is any around here...You think after year and a half they would have mentioned it...Is it possible that inflammation in my body caused ES....Being after I had my baby I have never been well...I was diagnosed with Hashimotos of my thyroid and my inflammation markers were sky high...shortly after ES symptoms....It makes sense...

Hey Kelx, I tried to reply earlier and I think the site was having problems earlier. So here I will try to remember everything from my last response.

Im in ND. Im not sure where in Canada but I know they have some drs in MN. I went to Rochester, MN to the Mayo clinic. I don't think knew much about ES as the Dr i went to didn't want to do anything as he didn't think my symptoms were bad enough. Since then, they do not treat patients with ES. They wanted to send me to pain specialist clinic as well and I told them no. As I wanted my condition taken care of instead of covered up by meds.

I also was looking into natural cures etc. I found that lowering the inflammation in my body has helped ease the flare ups and migraines. I cook with tumeric and cummin. It has helped as well.

I was looking into seeing Dr. Cognetti as well. Maybe we could go together if we don't live too far away,,lol

Hi, Im sorry to read you’re in such pain… I know what you’re talking about. I have server pain and take 4 pieces of 10 mg oxycontin morphine tablets everyday and sometimes a couple of oxynorm just for coaping with the pain but I can still feel the pain and sometimes its unbearable and Im just crawling around in bed trying to find a position to make the pain stop… It’s fruatrating and I’ve been told it can only be solved by surgery and it could be due to nerve damage which I will see after the op. I am scheduled to see a pain specialist after the surgery. Some simple things I’ve found to help is trying to stay as healy as possible by eating vitamins, drink lots of water and make tea of cummin and ginger…to easy muscle inflammation which worsens my symptoms. I also bought a gel pad I can heat up and place around my neck to relax my muscles.

I hope you can find a good doctor! I’am scheduled for surgery 19th of november but the doctor have only preformed two ES operations before so Im quite nervouse but hes colleagues say he is the best neck surgeon so I try to stay positive:) My very best regard, Sanna

SaaMee- glad that you've got a date for surgery! Hope that it goes well, and let us know how you get on!

Kelx- you could try Tegretol, Trileptal or Gabapentin/ Neurontin which are good for nerve pain, or Amitriptyline/ Elavil, or Lyrica- although they're anti-convulsants and antidepressants, they often work well if your pain is caused by inflamed nerves.

Some members have found muscle relaxants like Baclofen help too. Warmth or cold can help, and possibly TENS.