Thank you Weezie for your response. Yes I have seen this list but was putting my faith in seeing someone closer to where I am but it’s looking grim. It’s been 2 months since my referral and have heard nothing. Covid related I’m sure, probably combined with little knowledge of this condition. I need to call the referral myself which I’ll get on. I’ll try to keep posting as I travel through this journey. Everyone is so supportive which I am so grateful for. It’s a very lonely disease.
From what I’ve read on here, Canadian waiting times seem to be pretty much on a par with the UK where I am
Glad that the surgery has helped…I’ve still got some nerve pain after surgery too, although much better than it was, & the numbness & tingling have improved. Thank you to you both for coming back on to share your experience!
Hi @Patch, it took 8 months to finally get into my ES surgeon, (my 5-year 10 doctors journey), I called on a regular basis to check in on my referral, I was desperate to get in front of someone who was well versed in ES and had done surgeries.
I also started the process with Dr. Samji in CA in my despair, honestly I was prepared to go to Barcelona to see Dr. Javier Máiz if I had to, in the end you want a surgeon that is experienced and many will do phone/video consults once they have your scans.
I don’t know the extent of your symptoms, I just know that my life changed so drastically with ES, I was in debilitating pain every day, even basic everyday activities were a challenge due to the pain, dizziness, vertigo and other strange symptoms; I was willing to go wherever I needed to to get the help I needed. Best of luck in your journey.
Has anyone from Canada had a procedure with Dr Gupta in Hamilton? My ENT put a referral to his clinic. Not sure his experience but I think his name popped up once here. Dr Yoo said no to referral … actually said I need neurology exam first. Not sure what neurology assessment there is for ES. Most doctors in Ontario are no longer taking on patients who have ES - I know because I phoned almost every clinic!! I had a virtual consult with Dr Osborne and he confirmed from my CT that I definitely have ES. Might have to get referred out of province or out of country. Canada’s healthcare is lacking, surgeons are very selective and most prioritize cancer or other things over helping patients with rare conditions.
I’m sorry for the struggle you’re having trying to find a surgeon in your area. COVID has sure complicated life for us! I’m glad Dr. Osborne confirmed your diagnosis as that is “a bird in hand”.
Here are links to posts from 3 people who either saw or were referred to Dr. Gupta -
So hard; Canada seemed to be bad for ES anyway, & with delays from Covid it’ll only get worse! Hope that Dr Gupta can help you…
I’m so sorry for the “brick wall” you’ve run up against & am totally in your camp in not understanding why a doctor wouldn’t want to educate her/himself about something that’s new or only casually known to them. It seems like such a great opportunity for growth in medical & personal knowledge. Have you tried contacting Dr. Monteiro or Dr. Gupta for a second opinion. I realize that might mean you have to travel, but at least they’re in the same province as you are.
You’ve done your homework & done what you can to try to convince your current ENT of your need for surgery to help deal w/ your pain & other symptoms. Time to move on if possible. Wish I could help more.
Dr. Monteiro’s office said they no longer deal with ES. I asked for the referral to Dr Gupta which fortunately was accommodated (this was after calling ~10 other clinics). I see him at the end of the month. The 3D rendering request is a head scratcher to me - even provided a note from Dr Osborne requesting this. It was my hope to bring this information with me to Dr Gupta. I have vascular symptoms too and the original CT was done without contrast, a person with vascular symptoms should have a CT with contrast or a venous CT. Maybe I shouldn’t be ranting - the referral was made. However I did all the research. Hopefully doctors look at this forum and see it as an opportunity to learn from it and help others. The doctor is very personable and maybe is just swamped with more standard requests.
I’m sorry to know about Dr. Monteiro. I will take him off our list. Glad you got a referral to Dr. Gupta. He should be fine with seeing your CT scan as it is. Most doctors don’t care about the 3D images as they are more interested in the slices. 3D images are more helpful for those of us who don’t know how to read CT slices.
Our experience w/ doctors & our forum has not been great. They seem to think we share inaccurate information & do more harm than good for our forum members. I’ve heard this first hand. We even have some forum members who are in the medical profession (i.e. they have/had ES) who would dispute this. Our information comes from published research articles & the experiences of our forum members. I don’t know how we could be any more accurate short of doing the research ourselves.
Unfortunately no luck with Dr Gupta today. I am very sad. He discharged me, I was unaware of this unitl after the visit … thought I would at least be seeing hima gain. He told me that the styloids need to be in parapharyngeal fat for him to consider surgery. I don’t know what to do because the neck pain and jaw tingling is constant. tried to descrribe the pain with posture changes.
I’m so sorry to know what happened at your visit w/ Dr. Gupta. That’s a pretty odd pronouncement on his part & who even knows what that means!?! A person has no control of where their styloids go when they elongate so that sounds like an excuse made so he wouldn’t have to help in your situation. I will put a note next to his name on the doctors’ list so others know he picks & chooses which ES cases he will take on.
I completely understand how discouraging this must be for you. Is there anyone in another province you could see? I know it’s not easy to see doctors outside of your area, but you need to be treated either with medication or by surgery to help relieve your symptoms.
Thank you Isaiah. There may have been confusion when talking to front desk<
Iphoned and they said I am still considered patient for 2 years. When I asked it sounded like they discharged me but later clarified it. However I am not sure what else is needed to show surgical intervention. Ears ring and the ringing gets louder when rotating neck, I get jaw and tongue tingling when moving my jaw or neck around. I also read that it can cause radiating pain into shoulders and hands, which is present too. The only other thing are TOS symptoms and doctors have evaluated this and said go to ENT and cervical specialist. There are osteophytes / small cervical disk herniations that can also be contributing to it.
In Ontario I feel like a hockey puck. No onee doctor will offer surgical intervention because I have other conditions that they feel put me at risk. No one is looking at the whole picture.
Dr Gupta seems like a nice person and is likelyu a competent surgeon. I was in shock when he said no surgery and gave reason - I blanked (was exhausted from travel and tests they did) and just said ok thank you to him. honestly did not have energy tto fight.
I am in need of immediate interventions. Someone has recommended a US trained neurosurgeon that does both disk herniations and styloid procedures. I am considering this but can not afford US costs. Even considering a US trained neurosurgeon that does both osteophyte and styloid procedures in mexico
I’m so sorry for the position you’re in bmcdiddie. Money is an issue for so many of our members. It’s a shame that medical practice & medical insurances aren’t shared across country borders. I know your pain/symptoms must be terrible for you to be considering out of country options. It would be worth it to contact the neurosurgeon in the US & talk to his front desk or billing office & let them know your financial situation. Many US doctors charge substantially lower rates when a patient has no medical insurance. Also, most offices are willing to set up a payment plan for larger bills. I don’t know how that would work for an international patient but it must be doable if the doctor is willing.
The accessory nerve is one of the nerves often affected by ES. When irritated it can cause neck, shoulder & arm pain. I suspect at least some of your shoulder issues are related to ES.
I reall y don’t know what to do. During the appointment he pressed on the styloids and ever since there has been radiating pain and tingling to my jaw. Yesterday I opened my mouth and there was an audible crack from the jaw and I have choked on food twice since the appointment. but there seems to be other thaings likehand pain, shoulder, neck pain tingling everywhere.
I just know the runaroundd treatment is alive and well in ontario. This has been going on for years and no one seems to want to help because of my rare syndromes. I called the crisis line on this website the other day because of severe pain and ongoing loss of function. no one seems to care about my health and I feel like giving up
you might be onto something with the accessory nerve. I have constamnt scm and trap spasms. I have TOS so it may be the scm tightening causing compression. thank you. every day I feel like going to emergency, I should have mentioned this at the cliniic
@bmcdiddie I feel the exact same way you do. I am in constant pain, with a myriad of seemingly unrelated issues and nobody can do anything about it. At least once a day I feel like this is it, I’m gonna die today. I often feel like I should be going to get checked but I don’t. It’s too costly for me. I even spent the night in the hospital last year because of stroke-like symptoms and nothing was found. I feel so alone because my family can’t understand the pain I’m in and I can’t keep complaining about it so I just sit here in misery alone.
I sincerely hope you can get someone to help you. Even a little improvement would be welcomed I am sure.
my mantra is stay in the moment, enjoy life. it truly is dreadaful to have these conditions - at the same time i am very happy to be alive. the pain gets unbearable at times. not long ago i was a marathon runner, communiyty designer and carrtograpoher. ecuse the bad writing i tend not to correct it ahny more. learning to live in the moment even with mistakes
Hang in there both of you…it’s a tough journey, but many others have been along it before you & have found doctors to help. It will be a fight & you’ll need to keep strong, you have to advocate for yourselves…
So hard when family & friends don’t understand too or you don’t want to burden them, but we do understand & will lend an ear anytime. sending you both hugs Praying you both get help
Have you tried getting an Rx for a nerve pain medication? There are a number of different types on the market & a good doctor would start you on a low dose & gradually work up to a higher dose to help you avoid side effects. If one medication doesn’t work then another one most likely will but it can take some trial & error time. Additionally, it can take several weeks for a given medication to start helping. All of this is a process - diagnosis, finding help, getting the correct medication if needed, etc.
Nerve pain medication might be the key to helping you cope better during this “in between” time. I hope you’re able to look into that.
Here’s the link to the Two Minute Neuroscience Accessory Nerve video.