Has anyone seen dr Ian Witterick in Toronto?? Im trying to find someone in Canada to go to. IF anyone has seen someone who is good and diagnosed them with eagles and found treatment with that person can you PLEASE respond......I feel so lost and just need help so bad!!!
Hi Kelx. He's on our list, so someone has seen him. If you search his name in the Discussions tab, there is a husband whose wife saw him last year I believe. You could email him to see how she is doing now.
Ok what is his name? lol...
Here's the link to his discussion.
http://forum.livingwitheagle.org/forum/topics/surgery-note-for-emma
Hi Kelx,
I saw Dr. Witterick last week, he has offered me the option of partially removing my left calcified stylohyoid ligament by intra-oral approach. According to my CT scan, my left styloid process is 5.5cm long and Dr. Witterick will be removing approximately 2 inches or so, but I was told that it's hard to say exactly how much they will be able to remove until they get in there. I am currently taking Percocet and Gabapentin for pain which has helped some, but is not helping me enough to be able to live like this for the rest of my life. I was told that this surgery should help with the neck pain but there are no guarantees that it will help at all. He said that if the surgery helps with any of my other many symptoms, then that will be a bonus. He told me that some patients say this surgery was the best thing that they could've done and others have said that it didn't help much. At this point I am willing to take the risk because I have to do something to get better, my quality of life is not good at all. I am just waiting for surgery now, but the wait time is pretty long since he has a heavy patient load, most of whom are cancer patients so they would obviously take priority. I replied last week to your other post about looking for other Canadian patients, sorry it took a while for me to see your post as I come to this site occasionally but hadn't been here in a while.
You will have to get referred to Dr. Witterick by a specialist. I was already seeing another ENT so she was happy to refer me to him since she hadn't seen Eagle Syndrome before.
I hope that you are able to get the help you need in order to feel better!
Take care and I wish you all the best!
Thanks for the reply! Do you know how much the surgury costs in total? Do you live in Toronto? I’m in Saskatchewan. What symptoms did you have? Sorry I have lots of questions lol
I believe the surgery is covered by OHIP, the provincial medical coverage that we have here in Ontario. I don't live in Toronto, but I live about an hour or so drive away. I have many symptoms, but I am not sure if they are all related to Eagle Syndrome or not, as no doctor I have seen wants to say that they are related. I was told that Eagle Syndrome is a controversial diagnosis. My symptoms include: sharp pain in the left side of my neck where my jaw and neck meet which lasts for about 30 seconds or so then goes away. This will come and go many times per month. I have dull pain there as well, which is there pretty much all the time. I get a sore tongue and sometimes it gets sore under my tongue. My left ear gets sore and itchy and also I have mild hearing loss in my left ear. I get tinnitus on and off. I have difficulty concentrating at times. I get a sharp pain when I touch a certain spot on the left side of my neck, I'm assuming it's the tip of my styloid process. I have had fainting spells, not sure if it is just fainting or if it was a TIA. I have had a ct scan of my brain and thankfully there is no permanent damage. The last time I had this, I was going down the stairs in my house in January and did a double take out the window (in my peripheral vision it looked like a blizzard outside and I was surprised so I turned my head really quick to the left to look out the window) and I fell down the stairs, but it was unusual because I don't remember falling...I felt pretty awful for a few days following that, like really tired and really dizzy to the point that I couldn't go to work. I get "migraines" over my left eye that will last for days. Sometimes my pupils are different sizes, the right pupil is larger than the left. I get a lot of pain in my left shoulder. I get dizziness and vertigo that come and go...sometimes it feels like the floor is moving when I am walking and sometimes I feel like I am going to fall. My voice gets hoarse sometimes. I get these black dots in my vision in my left eye that come and go. sometimes I can hear my heartbeat in my left ear and sometimes I get a headache where my head feels like it is beating to my heartbeat...this usually happens if I am doing something physical...like running or going up and down a lot of stairs, stuff like that. I get swollen glands...some submandibular glands, auxillary glands and I have some enlarged nodes in my chest as well....hilar and mediastinal nodes. I get nausea often and loss of appetite. I feel really tired all of the time and I am quite achy all over (like I have the flu, but I don't) off and on. I get chest pain off and on, and shortness of breath off and on. I think that is all of the symptoms, but like I said, I'm not sure that they are all related but from what I have read about other's symptoms, they could be. I will have to wait and see what is helped by the surgery and see what is left over.
Ya I hear ya I have tons of symptoms as well too. I can feel the bone when I press under my chin. Left side. It hurts a lot there and going down my neck. Pain is there 24/7. Severity comes and goes. Ear pain and itchiness left side as well. Facial tingling and numbness and back of the skull left side pain. No dizziness or fainting. But I’m sure that will be the next on my list as symptoms have gotten worse. It’s been a year and a half of total hell! I couldn’t even enjoy the first years of my sons life. I feel lost and defeated!!! I’ve seen 3 ENT here and they are beyond clueless! I have a different ENT appointment in a month but I know it’s just gonna be another fail. I don’t even remember what life was before this. I’m getting depressed as the days go on. And everyone thinks it’s all in my head. My ct scan said highly suggestive of eagles. Ligaments completely calcified. 4.1cm on left. 3.4 on right. No pain on right just left of course. One ENT ruled it out so everyone else I go to seems too rely on that one ENTs conclusion. But the thing is no one really even mentioned it too me. I had to obtain the ct scan and find out myself. I’m so overwhelmed on how I’m going too find someone out of province and find out who too talk too about funding the expenses. I just don’t know where to start or who to go to. I’m so lost
I'm so sorry that you are going through all of this. It is truly an awful experience. I have had similar problems with doctors and people thinking it is all in my head too. Just remember that you are the person that knows yourself the best so if you say this is happening...then it is. Try not to let it get you down and don't ever give up! You will get this figured out and you will feel better some day. From what I have heard from a few different ENT's is that this is a really rare condition and most ENT's don't encounter a patient with this in their whole entire career. I was just lucky enough that my ENT was happy to refer me to Dr. Witterick and now I am finally getting somewhere. It really sucks that you have had to put this all together to figure it out yourself, but you did ... and now something can be done. Obviously that doctor that "ruled it out" doesn't know what he/she is talking about. The ENT that I saw that refered me to Dr. Witterick initially told me that there was nothing that can be done about it...She was just going to send me on my way. But since I had been doing some research on my own, I told her about this support group on line and I told her about other patients getting surgery and asked her for the referral to Dr. Witterick. You have to really advocate for yourself to get anywhere. Don't take "no" for an answer.
As far as the funding....there must be a provincial coverage for Saskatchewan....there would be an office that you can call. I just did a quick google search and found this... here is the link below:
I totally understand where you are coming from, this is overwhelming....but you will figure it out. Whatever I can do to help, please let me know.
Thanks for the website I’ll look I to this. Yes and when I went to my endocrinologst the first thing he said is… You do know what’s causing you pain do you? And I said no… And he said well you have Eagles Syndrome. So I mean there is doctors and radiologists who do believe I have it but not the right kind of doctors too believe you. You think the ENT would be smarter but not the ones where I’m from obviously. I’m gonna fight this and keep pushing. I can’t live like this forever! Some days are good some days are horrible but I’ll keep fighting along. How many surgeries had Ian done? Any complications? How long is the surgury? Does he now have to remove ur tonsils too go from the inside?? I heard there is 2 different ways… I wonder which is better
If they do intra-oral they go in where the tonsils are so usually remove them too I think. Different doctors prefer different methods- I've researched it and found doctors saying each way is better! External seems to give the best view of the styloid process so it can be removed from higher up, and there's supposed to be less risk of infection, but some doctors believe that with intraoral there's less risk of damage to other tissues and is less invasive... Members here have had successful operations either way. Surgery can take up to a couple of hours, in general the complications can be damage to nerves, and risk to blood vessels in that area- it is a cramped space. I'm sure he'll go over the risks etc. with you if you can get referred to him, hope that you can get some help, let us know how you get on.
No problem...I think it would be a good place to start to look into coverage.
Absolutely there are some physicians out there that are aware of this condition and have seen it before.
Good, I am glad to hear that you are going to keep fighting!
Honestly, I didn't ask those questions. I went to the appointment trying not to think too much about it because I wouldn't be able to sleep. I had some doubts that he would be able to help me, so I tried not to think too much about it the past few months because it was starting to consume me and my thoughts and I think it may have made my pain even worse because it was all that I was thinking about. (I am still in a lot of pain even when I try not to think about it, it's just not as intense maybe?? not sure how to describe that.) I was surprised when he said he would offer me surgery to try and help me. I did ask some questions though, as many as I could think of at the 10 minute time that I met him. I had one previous appointment with his fellow, Dr. Chan, but he wanted Dr. Witterick to see me first before he booked me for a procedure so I had to go back a second time and meet with both of them. Both Dr. Chan and Dr. Witterick seemed to me to be very kind physicians who acted in a professional manner and I believe that they want to try and help me.
He is going to go in through my mouth to remove part of the styloid process, behind where my left tonsil was. I am a bit concerned that he may have a hard time getting in there, because I also have TMJ on both sides of my jaw, so I am not able to open my mouth really wide. I had my tonsils removed this past January which my ENT had a hard time removing them because my mouth doesn't open as far as it should...I had been having problems with those for a few years in conjunction with all of these other symptoms that I am having. I started coughing up "tonsil stones" so I went to see my ENT that I had seen previously in 2014 for a septoplasty and turbinate reduction in my nose, who I was comfortable with. She told me that the only way to get rid of the tonsil stones was to remove the tonsils, so I've had both tonsils removed already. The pain was pretty bad after the tonsillectomy, but I was given some pain medication and I used a lot of ice! I got through it and it wasn't as bad as I had imagined it would be. I was told by Dr. Witterick and his fellow that the pain and recovery for removing part of the styloid process would be similar to the tonsillectomy. I asked Dr. Witterick if he would be willing to do the surgery via the external approach and he said that he wouldn't be comfortable with that. I can't tell you which is better, but I've decided that I'm going to give the intra-oral approach a shot. It's all I've got right now. If it doesn't work, I'm going to cross that bridge when I get there.
Good luck with your appointment coming up on November 1st! Let us know how it turns out!
Kelx said:
Thanks for the website I'll look I to this. Yes and when I went to my endocrinologst the first thing he said is..... You do know what's causing you pain do you? And I said no... And he said well you have Eagles Syndrome. So I mean there is doctors and radiologists who do believe I have it but not the right kind of doctors too believe you. You think the ENT would be smarter but not the ones where I'm from obviously. I'm gonna fight this and keep pushing. I can't live like this forever! Some days are good some days are horrible but I'll keep fighting along. How many surgeries had Ian done? Any complications? How long is the surgury? Does he now have to remove ur tonsils too go from the inside?? I heard there is 2 different ways.. I wonder which is better
Well called Dr. Witterick office and she said he wasn't taking new patients.....How did you get too see him??? I feel as I'm going to have a break down.... She asked me what I had I told her and she said No.....I don't know what to do now.......... :'(....I thought I was getting somewhere but obviously back to square one....
Well that is bizarre! I don't know what to say about that.....
Initially, I called Dr. Witterick's office and was told by the secretary that I would need a referral from a specialist. I went to see my ENT and she sent a referral to him and I received an appointment date a few months later. Maybe he has a full load of patients right now?? Maybe he will be accepting new patients eventually?? I know that he has many other patients, like I said most of whom are suffering from cancer.
I am so sorry that you are dealing with more crap on top of everything else! Big hugs to you!! When there is a will, there is a way...you'll find a way!
Maybe when you see the ENT on November 1st, ask them to send in the referral anyways and see where that gets you. I know that my ENT had to call the office a few times and bug them for an appointment date. I let them do the calling for that, and they did eventually get me in.
Another option that my chiropractor told me about is through the Mayo Clinic in the US...I haven't looked much into this option yet, because this was going to be my next step if this surgery doesn't work. She told me to apply online through them and see if OHIP would send me to the US for treatment if no one in Canada can help me. She told me to google "Mayo Clinic Canada" and there is a way to apply through a website that will come up. I just did a quick google search and came up with this...here is a link for you:
There are a few other physicians on the list on this website located in Canada, I think there was a physician in British Columbia and one in Newfoundland.. I imagine BC would be closer to you than Newfoundland. Maybe either of them would be accepting new patients at this time. If they are on the list, then they have successfully treated a member on this forum.
Wishing you all of the best and I will keep you in my prayers! XX
Kelx said:
Well called Dr. Witterick office and she said he wasn't taking new patients.....How did you get too see him??? I feel as I'm going to have a break down.... She asked me what I had I told her and she said No.....I don't know what to do now.......... :'(....I thought I was getting somewhere but obviously back to square one....
Well I was able to get an appointment today with the ENT. Fingers crossed he refers me to him. You never know I might get an appointment with him. The mayo clinic would be another option! But that will be harder to do. I phoned today sask health and all I need is a referral and everything is paid for except travel and accommodation. So that’s good news .
Let us know how you get on Kelx! And thanks for all your advice Farm Girl- I know nothing really about the US and Canadian health care systems so can't ever help with that sort of advice!
Kelx, that's great! Good luck at your appointment! I'm also glad that you were able to find out more about coverage! I bet the travel and accommodation might be something that you could claim on your income taxes too as a medical expense, because you had to travel to get treatment....check with an accountant on that one though to be sure. Keep your receipts!!
Jules, No problem, happy to help :)
Hi Farm Girl,
I saw that your styloid was about 5 cm and Dr. Witterick said he would remove about 2 cm. And he also mentioned that some people get relief from the surgery and some don't. I wanted to tell you that if he is only getting the styloid down to 3 cm or so, that will be enough to cure some people, but not all. Some people have issues and pain with a shorter styloid. So I don't know if you could mention that to him or if he would be receptive or not.
One of the most experienced surgeons with Eagles is Dr. Samji in California and I saw that Isaiah mentioned the other day that he has revised his criteria for Eagles to be 2.5 cm or greater. So he's seen a number of patients who were symptomatic with shorter styloids. And I had pain from a piece of styloid that was about 2 cm.
Also, I mentioned recently that the Mayo Clinic in the US has not been a good place for Eagles patients to go. They've been told they don't treat Eagles there. I have no idea if it's also true for Mayo in Canada, but it would be worth a phone call or email to check before anyone goes there.
I don’t think we have a mayo in canada. But good new he believes me!!! He said he only has seen one patient in his 40 year career as an ENT for eagles. And he has never performed one either. He retires in 6 weeks. So he going to refer me too Ian!! I hope he accepts me!!! Pls pray!!! I got some diladud hopefully that eases the pain.
That's good news, let us know if you hear any more!