My story is about 12 years long…I’m new to this group, so hello fellow Canadians!
12 ish years ago I head a sinus cold with fever. After recovering, and returning to my work, about 2 weeks later, I had a sudden incident of tinnitus in one ear with some vertigo and hearing loss. It never went away, I was sent to an ENT, testing including MRI done. I was told you have permanent nerve damage in that ear. Nothing can be done. Constant high pitched, except with head down, or bending over, loud heart beat in that ear. Nothing can be done. So I lived with it, but became extremely light and noise sensitive. Then had high level of employment distress, and have been off work for 3 years now.
A year and and a half ago , while watching the news, saw a segment about a Dr who has helped rid people of pulsatory tinnitus by placing stent in a certain blood vessel. So I asked my GP for a referral, and about 8 months later, I had a consult with a neurovascular surgeon in Toronto. The team listened carefully to my symptoms and recommended CT scan with dye, then meet with team a few hours later. Done. cerebral angiogram with balloon test occlusion ( of the smaller condylar emissary vein close to affected ear )recommended, the CT showed the styloid process and surrounding tissues, elongated and calcified, and almost occluding the IJV.
Mar 9, 2022 finally had cerebral angiogram with BTO. Admitted for 3 days in hospital.( have other health conditions that did not agree with waiting 2 days with no food) Was repeatedly delayed for emergencies that got priority. O K I get it , but…12 years, I was almost in the door twice…
So, my tinnitus was almost gone with this test, but it was painful. Home I went. I had excellent care, but definitely needing more interventional radiology equipment and staff.
Next appointment, 2 weeks later, off I go to the city to the neurovascular clinic to discuss test results and make a plan. We agreed that the styloidectomy was needed to assess if all vessels would return to normal flow and size. Potentially the smaller vessel causing the tinnitus will go down to normal and the tinnitus will be gone. If it is not relieved with a styloidectomy, then I have the option of the embolization of the vein by the ear. ( you may have to look that up) this was very confusing for me to learn. Permanently stop the flow in that vein.
Problem 1- sorry , I can’t do this surgery, you need an ENT, that specializes in this, because of all the nerves etc so close by. I recommend only one Dr here in Toronto that Has done this many times
Problem #2 he is so so busy, and this clinic has 15 patients ahead of you that need the same surgery, they haven’t even had their consults yet. And also affected by covid backlog. Ugg this is so aggravating. So getting this far has already taken a year. And like other peoples posts, I have seen many specialists, extended healthcare professionals to help me with my aches and pains that people think I am making up, because I never seem to be cured of them!
Ah, that felt good. I will pass on doctors names upon request.
Lizbeth
@Lizbeth welcome. Always glad to see a fellow Torontonian in here. I am sure your story is not unique and many folks here can relate to that. The good news is you went through all the tests required and finally know what is causing your symptoms. There are plenty of material in this site to help you decide how to proceed. Obviously doctors have the final say but I would leave the embolization as a last resort and may not be necessary if you can tolerate the tinnitus. This embolization technique is usually employed to shut the vein permanently and is usually the method of choice if you are suffering from vascular malformation such as Dural Arteriovenous Fistula (DAVF) which is an abnormal connection of vein and artery. This ensures that the vein is not communicating artery. But in your case, Styloidectomy might just do the trick so it is worth waiting instead of opting for embolization which is hardly the cure for Styloid-induced compression of the jugular vein. I am currently waiting for surgery here in Toronto and am on waiting list. So this is what we have to live with in a public universal healthcare system. Alternatively, you can pay out of pocket and go to the states. There are plenty of doctors to choose from. Wishing you all the luck with your pursuit of cure.
Well thank you for the welcome. I shall perhaps assume we’re on the same wait list to see THE ENT.
Yes I discussed with my Dr in the neurovascular clinic that having the styloidectomy was the way to start. The balloon test obstruction was extremely painful, and I kept thinking, if I have an embolization, and I wake up with all that pain!..
I am so fully for universal healthcare, but one must always weigh the options/quality of life is most definitely at stake here. I am in Niagara, with my husband, if you ever want to meet up. I’m sure you’ll let us know when and how your surgery goes. Have you already had a consult with an ENT? Dr JR ? The reason I ask is, I am very curious how many ENTs in Toronto actually do this surgery. I also have read that it is more common in the paediatric group, post tonsillectomy, so if those paediatric ENTs do the surgery in Ontario, why are doctors who treat adults so unaware of this disease. 2 years ago , after 10 years of worsening tinnitus, I consulted with the ENT that originally diagnosed me with tinnitus and permanent nerve damage in my ear and told me there was nothing that could be done about it. So I thought, maybe 10 years later, there was something or some research done that could help me, because it was making me a very irritated person, and socially lonely, and unable to perform my job, along with some other health issues. Covid phone call appt- but took his time to review symptoms and history. Said the same thing. Sorry nothing we can do to help. So we saw this neurovascular surgeon on the news one evening, curing people of pulsatile tinnitus. So I asked my GP for a referral and 8 months later, I had a CTvenogram,saw the dr 3 hours later, he explained the results and need for cerebral angiogram and balloon test. This has all taken about one year. I have been off work for 3 years with constant headache etc . It has been a long road. I am also still trying to obtain long term disability. Which has been unsuccessful to date. I’ve paid into for 33 years, and now trying to get some payment has been as painful as my constant headache! Patience is a virtue I’m told. Take care.
Yes, I was able to meet DR JR and his team and signed all the surgery papers. At this point I am waiting for the date they are going to do the surgery which is bit difficulty to estimate given the waiting list and prioritization of it. Life threatening conditions such as Cancer/Trauma takes precedence, I am told. Technically speaking any Head and Neck/Skull base surgeon (ENT Surgeon) should be able to remove the styloid process but the problem is that Styloid process is normal human anatomy and is rarely pathogenic (disease causing) so it gets only removed when it is elongated or compressing blood vessels/Nerves. That is why it is universally rare (not only Canada but most of the countries) to find many doctors that are familiar with this condition. Even in the US, there are handful of doctors that are familiar with it. I have not heard of pediatric ENTs doing Styloidectomy. This is first time I am hearing it. I think the constant headache thing is number one symptom of vascular Eagle and is probably due to raised intercranial pressure (IIH) induced by obstructed Jugular vein.
I am still bit functional and thought of quitting work at height of my symptoms but luckily stayed and practice mitigation techniques while waiting for surgery. I am also a busy father of 3 kids so b/w work and family, I am pretty much occupied most of the time. not to mention the constant onslaught of Eagle Syndrome. Will keep you posted when the time comes for surgery, in the meantime, wish you all the best.
12 years is a long time. Some of your issues outside of my wheel house but others have given some good feedback. Ive had my ES surgeries in 2020 but last year had a big bout of vertigo and dizziness after tooth extraction, followed by more vertigo and sudden hearing loss (minor) in one ear several months later. Prior to that I was doing well after ES surgery. Although I have had tinnititis for years it was mild. No longer.Im getting the high pitched stuff too. Im dealing with chronic pain inside me ear. Im finally having all sorts of ear testing next week as COVID delays wouldn’t allow for it sooner. ENT mentioned Mueneres but inconclusive. There are issues (diverticulum) in the vein behind my ear that he doesn’t consider a problem. Im thinking about seeing a neurovascular doc for a consult as everything I have read says otherwise. Unfortunately I just was diagnosed with TOS. Thorasic Outlet Syndrome. Doctor suggest 1st try BOTOX in my scalene ligaments in my neck. My massage therapist wonders if these tight ligaments are pulling on my ears causing the pain. He may be on to something. Just some things to consider. If you have a tight neck, those ligaments can impact the ears.
As to potential docs to do ENT surgery outside of Canada. I have not checked into it thoroughly but a friend who travels abroad a lot and knows others who take stints abroad, Regence Blue Cross/Blue Shield has a travel medical insurance policy. I know some people come to the states and pay cash. This global policy called GEO Blue might be worth checking into.
Hang in there Lizbeth
@snapple2020 Thank you for the info and support. It’s greatly appreciated. I had a very respectful neurovascular consult and subsequent visits/tests. As I sit here, all my teeth are throbbing at the back, top and bottom, I think I do a lot of clenching again. I had some help with that last year, also with so much increasing anxiety about what was wrong with me?!? Breathing exercise time. Take care of yourself!
The teeth throbbing sounds like the trigeminal nerve branches kicking up and irritated. Have you ever been evaluated for TMJ? even an over the counter night guard might help you take some pressure off the clenching. “Plackers” brand makes disposable ones called “No More Grind” and you can order them off amazon - not very expensive. Some drug stores carry them. I have a custom appliance or did but stopped using it recently because it was moving my front teeth. Im not returning to that TMJ specialist as he seemed to hurt me more than help me. It’s hard to find a good TMJ specialist that doesn’t prey on desperate patients. In the US, they normally are not covered by insurances and your paying a lot of $$ out of pocket.
I’m a heavy clencher myself and have struggled with jaw pain/ headaches for many years. I get regular botox injections to get that to relax as well as massage. When Im stressed, it defiantly gets worse. It seems a lot of us with ES also have TMJ and ear issues. Having gone thru the ringer myself with multiple issues going on and going to a variety of docs trying to get diagnosis(s) is like playing whack-a-mole. ITs exhausting and even more exhausting when you are in pain. Having to wait in pain is sooooo hard. You will get there. Keep checking in with the ENT surgeon for cancellations.
Getting disability in US is equally hard. Im not sure how the process works in Canada. Sometimes its worth seeking out an attorney or disability specialist to help. Good luck on your journey