Well after over a year long search and a mystery, I finally found a doctor only an hour away from me too do surgury!!! I was very surprised to find someone sooo close as I thought no one around where im from would do it. I actually had an appointment in Toronto which is over a 4 hour plane ride January. I found this ENT/Facial surgeon from a Toronto doctor who I was I initially referred to but the surgury was something he never done before. He had said why are you travelin soooooo far when I know there is an ENT only an hour from you!!! I was like wtf!! Seriously! Went too 6 specialist this year and no one ever mentioned him!! Well nonetheless I’m getting surgury in 3-4 months!!! Thank u Jesus!!! And when I asked the ENT about the condition he said he has done lots! And didn’t think it was that rare! Lol! Weird!!! He said he will be doing the surgury through my neck. Not inside because the recovery is horrid and he would have to take my tonsils. He said he would have no problem getting the Styloid right at the base of the skull! And it would take approx 20 min to do! Anyone have this type of surgury done through the neck? How was recovery? Etc…
That's fantastic news Kelx! Very lucky, but so frustrating to think you've had so much stress over trying to find a doc to help, and one's so close!!
I had external surgery and the doctor took the styloid off at the base of the skull, that's the best way if you can have that, the more they get off the better. The recovery afterwards was nothing like as bad as I thought, I didn't need the prescribed painkillers after a couple of days, although it does vary. I did find moving my head uncomfortable for a couple of weeks, and so was chewing, so get soft foods ready for afterwards, or have soups and smoothies ready! I had a drain in to help with swelling, but not all docs do that, so have ice ready, and sleeping half upright will help. Like any op, you'll feel tired for a few days; have you got help with your baby? I think most people find that the pain they've been through with ES means post-op effects are usually not too bad!
If you look in the discussions section, and search for 'what to expect after surgery' or something like that it'll come up with quite a few discussions for more info- one member eaglewontbeatme did a long story.
Have you any idea how long you'll have to wait?
Hi Jules! Ok I’m glad he’s during the external. I didn’t want the painful internal way. And I have help from my husband, as well as my parents! He said surgury in 3-4 months! Seems long but at least I can say I found someone! Maybe my anxiety levels won’t be as bad and then the pain won’t be as bad knowing I may be symptom free one day. Who knows though it may not work he said. But at least I know it’s out and move on finding a solution too the problem that causing pain. Like I said before I also have a lot of thyroid cartilage pain that seems to be unrelated to eagles pain. When I press on it it feels sharp from the inside like more calcification maybe? The ct scan I had done doesn’t even seem to show my thyroid cartilage lol so what scan can I have that the thyroid cartilage will show up?
I think an ultrasound can be used to look at the thyroid gland, whether they can look at the cartilage too I'm not sure, but they can certainly look at the soft tissue in that area. It might be worth asking the doctor who did your CT- I think they highlight different structures/ tissues to show whatever they're looking for maybe they can digitally alter the scan to show it?
Ya I asked the radiologist who did my 3D reconstruction on my ct scan and he simply said it’s harder to see because it’s soft tissue… So you would think he would help me out altering the ct scan too see the cartilage better but he won’t because I think that’s all he could do… Just seems weird as I thought a CT scan would show it all…
Kelx, that's fantastic news. I'm very happy for you. I'm glad he's experienced and is taking the whole thing out. Who is the doctor?
CT scans are good tools, but I found out in my case that they don't show everything. But it's great you are going to an experienced doctor. Hopefully everything can get resolved. Best of luck to you.
His name is Rick Jaggi in Saskatoon, Sask. Ya he was surprised no one referred me to him sooner as he says everyone in saskatchewan gets referred to him that has this condition. I swear the health care system is a joke, seems like no one communicates with each other and has no problem referring you and referring you to other ppl Just to get you off there back! So sad really. But thank u! I hope it resolves after surgury but I won’t know till it happens!
OK, Kelx, that is great news. Now go forward filled with optimism! That part of the Sask health system obviously has problems, but in other places you wouldn't have a choice of surgeon, or maybe not even have a way to afford one. I'm so glad that you found one. Did you like him and feel secure with how he seemed to approach you and your problem?
I felt good with him! He said everyone in sask gets referred to him for this…he seems super confident too! He didn’t even seem to act as if it was a rare thing… Lol I’ll be glad when this is all over I just hope it doesn’t open a can of worms so to say and cause more problems, nerve damage etc. I wish I was optimistic lol
It is rare for there to be problems after surgery, so try to keep positive and look forwards to feeling better after that op! It was nowhere near as bad as I thought it would be afterwards- I'm on the waiting list for side two, will be about 4 months as well.