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Eagle Syndrome - Online Support Group

New member from Newfoundland, Canada, Chronic Pain 13 years after Styloidectomy,

Hello to everyone, I am happy to have found this group, support from individuals who are dealing with the same or similar issues is a God send. I had a left Tonsillo-Styloidectomy in 2001, the Styloid process was completely removed. For many years after my surgery I had intermittent left sided neck, throat and ear pain but nothing that affected my daily life. Three years ago the pain became chronic. I will add that I had an MRI which showed that I have cervical bone spurs and a bulged disc, the Orthopedic Specialist told me to do neck exercises, this I have been doing daily for 15 or more years. I also had a ultrasound which showed I had a nodule in my right thyroid lobe. I have tried numerous medications, yesterday I started Lyrica which I feel is a last resort. I have seen many different specialists all to no avail. I have done physiotherapy, massage therapy, chiropractic care, different types of traction, acupuncture, neck and back exercises and have worn two different devices to help with my posture, all of these things have not made no noticeable difference to my pain level. My dentist also made me a dental splint in case my pain was related to TMJ, this did not help me. I had hoped to see the ENT specialist who did my surgery in St. John's, NL but I found out a couple of weeks ago that he had retired last year. I do not know what is causing my pain, it may have absolutely nothing to do with Eagle's Syndrome, it may be a result of my cervical bone spurs and bulged disc. The Doctor has told me the pain is not from my thyroid nodule and another ENT specialist I seen approximately three years ago told me there is nothing wrong with my ear or throat. My hope was that I would not have to resort to daily medication but rather find out what is causing my pain, I now feel I may never know. My life has been consumed searching for a cure which has worn me down both mentally and physically. I have had the medication Lyrica for two weeks now but did not take it, but yesterday I finally decided that this is the only option I have. I hope to God that this medication works for me. I would appreciate if any individuals living in Atlantic Canada could provide me with the name of a specialist who they have dealt with in regards to Eagle's Syndrome. I will keep you all in my prayers. Thanks for listening, Maureen. (Very long winded, a Newfoundland thing, chatty.) God Bless

Hi Maureen,

welcome to the site! It sounds like you've been through sooo much... I'm a way behind you but can understand the wearing down, especially as you've had a styloidectomy. Have you had a CT scan or panoramic xray to see if the styloid has grown back? Some members have found this- check out some recent discussions.

I'm having a lot more neck pain now, and am waiting results from an MRI scan to see if anything else is causing it as well as the ES- I think that bulging discs are very painful, so that could be causing the pain with you. I guess we all want answers but there seems to be so much Dr.s can't answer and you don't get them- I hope the new medication helps.

God Bless, Jules

Welcome! I hope you find relief. About 17 years ago I was treated for a bone spur and a bulging disc in my neck. Physical therapy helped the most. The therapist really dug into the area with her fingers and showed me how to do the same. The sessions were painful but really did help.

Before I felt the real pain,I felt sensations going down my neck and arms. Those were more weird than painful. It felt hot and tingly. Once the pain began I started taking 35 ibuprofen a day and still had tears running down my face. That is a bad thing to do as there are other pain medications you can take that are less harmful. Surgery was recommended but I opted out. I’m careful now and if I feel a twinge of pain I stop what I am doing.

Today I’m rethinking the surgery option I’m just not sure as some of what I experience now could be from eagle syndrome. I’m looking for an ENT with experience.

Have you tried a pain management doctor? They may try cortisone shots. I know of a good one in northern Wisconsin if you are interested. Takes several months to get an appointment.

Best wishes,
Marie

Hi Maureen,

Small world! I am in Newfoundland too. I was diagnosed by Dr. Wayne Redmond, at ENT Consultants in St. John's. Dr. Boyd Lee will be operating on me next week. Both seem relatively knowledgable about Eagle, and Dr. Lee has done several Eagle surgeries before. I hope this helps. Message me if you want more information!

Sincerely,

eAmator

Hi Maureen - I am in Halifax and have seen a doc who knows all about Eagles - he wants me to have 2 surgeries but I keep putting if off. His name and contact info is:

Dr Stuart Richardson
Address: ■■■■■■■■ Spring Garden Rd, Halifax, NS, B3H1Y1
Halifax, Nova Scotia
Phone: 902-■■■■■■■■

Good luck with everything!!



Sticky said:

Hi Maureen - I am in Halifax and have seen a doc who knows all about Eagles - he wants me to have 2 surgeries but I keep putting if off. His name and contact info is:

Dr Stuart Richardson
Address: ■■■■■■■■ Spring Garden Rd, Halifax, NS, B3H1Y1
Halifax, Nova Scotia
Phone: 902-■■■■■■■■

Good luck with everything!!

Thank you so much for your reply and I wish you all the best.

Hi there, I was excited and hopeful after I read your message. Dr. Lee is in the same office of the Dr. who did my Styloidectomy, Dr. Smith who retired last year. Do you think that Dr. Lee would be open to my sending him a letter or fax explaining my situation? I am on the west coast of NL so it is a very long drive for me to see Dr. Lee if he feels there is nothing he can do for me. If he figures he can help me then I would get a referral to see him and gladly make the trip. Three years of chronic pain has worn me down physically and mentally. Pain has a way of humbling a person and making them desperate to find a cure, it is life consuming. I wish you the best. Maureen

eAmator said:

Hi Maureen,

Small world! I am in Newfoundland too. I was diagnosed by Dr. Wayne Redmond, at ENT Consultants in St. John's. Dr. Boyd Lee will be operating on me next week. Both seem relatively knowledgable about Eagle, and Dr. Lee has done several Eagle surgeries before. I hope this helps. Message me if you want more information!

Sincerely,

eAmator


Thanks Marie, I am from Newfoundland, Canada. I have done physiotherapy and many other things to help ease my pain, nothing has been effective. I started Lyrica three days ago and I hope and pray that this medication will give me some relief. Thank you for your input and concern. Maureen
Marie said:

Welcome! I hope you find relief. About 17 years ago I was treated for a bone spur and a bulging disc in my neck. Physical therapy helped the most. The therapist really dug into the area with her fingers and showed me how to do the same. The sessions were painful but really did help.

Before I felt the real pain,I felt sensations going down my neck and arms. Those were more weird than painful. It felt hot and tingly. Once the pain began I started taking 35 ibuprofen a day and still had tears running down my face. That is a bad thing to do as there are other pain medications you can take that are less harmful. Surgery was recommended but I opted out. I'm careful now and if I feel a twinge of pain I stop what I am doing.

Today I'm rethinking the surgery option I'm just not sure as some of what I experience now could be from eagle syndrome. I'm looking for an ENT with experience.

Have you tried a pain management doctor? They may try cortisone shots. I know of a good one in northern Wisconsin if you are interested. Takes several months to get an appointment.

Best wishes,
Marie

Hi Maureen. I'm a pharmacist. I would definitely consider giving Lyrica (pregabalin) a go if I was in your position. The assumption for it to work is that the pain is neuropathic in nature. I don't really like taking medicines either, but for chronic neuropathic pain, Lyrica can be very effective from my experience. The key is to titrate the dose slowly and know that pain relief may not come until the dose gets higher (i.e. a few weeks). Usually people start off with 25mg at night or 25mg twice a day and increase the daily dose by 25mg at weekly intervals. If the renal function is good (and therefore a reduced dose is not necessary) then generally people get some relief at 75mg twice a day. Some people need higher doses depending on how well they tolerate it. If people start to get side effects, I usually recommend that they drop back to the previous tolerated dose and stay on it for another couple of weeks before trying to increase it again.

Neuropathic pain is notoriously difficult to treat. Opiates are poorly effective as are simple analgesics. The older tricyclic antidepressants can be effective (eg amitriptyline) but are very poorly tolerated in most people. The other medicine that is showing some promise is one of the newer antidepressants duloxetine (Cymbalta) and I have seen it used in combination with Lyrica by some pain specialists. There are schools of thought that going on these medicines for a period of time (6-12 months) can reset the way the brain interprets pain signals, so you may not have to be on them forever.

Obviously this is general information from my experience and not specific advice. Talk to your doctor before deviating from what they have recommended.

Hope this helps,

Mark

Hi Maureen,

Dr. Lee seems like a very nice guy, so I'm sure that he would at least listen to your situation. I wonder if it is possible to be referred for a long-distance consultation? He (and his whole office) is very busy, and it can be hard to get ahold of anyone on the phone. My experience with the office staff is that if you are patient and sympathetic to how busy they are, they can be very helpful.



Maureen said:

Hi there, I was excited and hopeful after I read your message. Dr. Lee is in the same office of the Dr. who did my Styloidectomy, Dr. Smith who retired last year. Do you think that Dr. Lee would be open to my sending him a letter or fax explaining my situation? I am on the west coast of NL so it is a very long drive for me to see Dr. Lee if he feels there is nothing he can do for me. If he figures he can help me then I would get a referral to see him and gladly make the trip. Three years of chronic pain has worn me down physically and mentally. Pain has a way of humbling a person and making them desperate to find a cure, it is life consuming. I wish you the best. Maureen

eAmator said:

Hi Maureen,

Small world! I am in Newfoundland too. I was diagnosed by Dr. Wayne Redmond, at ENT Consultants in St. John's. Dr. Boyd Lee will be operating on me next week. Both seem relatively knowledgable about Eagle, and Dr. Lee has done several Eagle surgeries before. I hope this helps. Message me if you want more information!

Sincerely,

eAmator

I am so very thankful for your advice. My physician prescribed 75 mg twice a day, the first two days I only took one pill and the pain was pretty much gone, today

is was back but to a lesser degree. I took two pills today and tonight it has settled down. To know that I may not have to be on this medication forever certainly makes me happy. I was wondering why this medication would stop the pain for two days and then only decrease it the third day. I was more active today and depending on what I do my pain increases so this may be the reason. Does this medication have to build up in your system? You are a very thoughtful person to take the time to write this very informative message. God Bless you and yours.


aussie77 said:

Hi Maureen. I'm a pharmacist. I would definitely consider giving Lyrica (pregabalin) a go if I was in your position. The assumption for it to work is that the pain is neuropathic in nature. I don't really like taking medicines either, but for chronic neuropathic pain, Lyrica can be very effective from my experience. The key is to titrate the dose slowly and know that pain relief may not come until the dose gets higher (i.e. a few weeks). Usually people start off with 25mg at night or 25mg twice a day and increase the daily dose by 25mg at weekly intervals. If the renal function is good (and therefore a reduced dose is not necessary) then generally people get some relief at 75mg twice a day. Some people need higher doses depending on how well they tolerate it. If people start to get side effects, I usually recommend that they drop back to the previous tolerated dose and stay on it for another couple of weeks before trying to increase it again.

Neuropathic pain is notoriously difficult to treat. Opiates are poorly effective as are simple analgesics. The older tricyclic antidepressants can be effective (eg amitriptyline) but are very poorly tolerated in most people. The other medicine that is showing some promise is one of the newer antidepressants duloxetine (Cymbalta) and I have seen it used in combination with Lyrica by some pain specialists. There are schools of thought that going on these medicines for a period of time (6-12 months) can reset the way the brain interprets pain signals, so you may not have to be on them forever.

Obviously this is general information from my experience and not specific advice. Talk to your doctor before deviating from what they have recommended.

Hope this helps,

Mark

Sounds like your tolerating quite well at this point. It can cause a bit of peripheral edema in the beginning (puffy ankles) but this usually settles. It will most likely take about 1 week for the levels to stabilise in your body but the effect may continue to increase for another week after that. It doesn't build up in the body but the modulating effect requires regular dosing to maintain the effect so it doesn't really work if you take on a "when required" basis. Glad that it seems to be working for you.

Mark

Maureen said:

I am so very thankful for your advice. My physician prescribed 75 mg twice a day, the first two days I only took one pill and the pain was pretty much gone, today

is was back but to a lesser degree. I took two pills today and tonight it has settled down. To know that I may not have to be on this medication forever certainly makes me happy. I was wondering why this medication would stop the pain for two days and then only decrease it the third day. I was more active today and depending on what I do my pain increases so this may be the reason. Does this medication have to build up in your system? You are a very thoughtful person to take the time to write this very informative message. God Bless you and yours.


aussie77 said:

Hi Maureen. I'm a pharmacist. I would definitely consider giving Lyrica (pregabalin) a go if I was in your position. The assumption for it to work is that the pain is neuropathic in nature. I don't really like taking medicines either, but for chronic neuropathic pain, Lyrica can be very effective from my experience. The key is to titrate the dose slowly and know that pain relief may not come until the dose gets higher (i.e. a few weeks). Usually people start off with 25mg at night or 25mg twice a day and increase the daily dose by 25mg at weekly intervals. If the renal function is good (and therefore a reduced dose is not necessary) then generally people get some relief at 75mg twice a day. Some people need higher doses depending on how well they tolerate it. If people start to get side effects, I usually recommend that they drop back to the previous tolerated dose and stay on it for another couple of weeks before trying to increase it again.

Neuropathic pain is notoriously difficult to treat. Opiates are poorly effective as are simple analgesics. The older tricyclic antidepressants can be effective (eg amitriptyline) but are very poorly tolerated in most people. The other medicine that is showing some promise is one of the newer antidepressants duloxetine (Cymbalta) and I have seen it used in combination with Lyrica by some pain specialists. There are schools of thought that going on these medicines for a period of time (6-12 months) can reset the way the brain interprets pain signals, so you may not have to be on them forever.

Obviously this is general information from my experience and not specific advice. Talk to your doctor before deviating from what they have recommended.

Hope this helps,

Mark

Thanks once again Mark. I am praying this medication works for me. Maureen

aussie77 said:

Sounds like your tolerating quite well at this point. It can cause a bit of peripheral edema in the beginning (puffy ankles) but this usually settles. It will most likely take about 1 week for the levels to stabilise in your body but the effect may continue to increase for another week after that. It doesn't build up in the body but the modulating effect requires regular dosing to maintain the effect so it doesn't really work if you take on a "when required" basis. Glad that it seems to be working for you.

Mark

Maureen said:

I am so very thankful for your advice. My physician prescribed 75 mg twice a day, the first two days I only took one pill and the pain was pretty much gone, today

is was back but to a lesser degree. I took two pills today and tonight it has settled down. To know that I may not have to be on this medication forever certainly makes me happy. I was wondering why this medication would stop the pain for two days and then only decrease it the third day. I was more active today and depending on what I do my pain increases so this may be the reason. Does this medication have to build up in your system? You are a very thoughtful person to take the time to write this very informative message. God Bless you and yours.


aussie77 said:

Hi Maureen. I'm a pharmacist. I would definitely consider giving Lyrica (pregabalin) a go if I was in your position. The assumption for it to work is that the pain is neuropathic in nature. I don't really like taking medicines either, but for chronic neuropathic pain, Lyrica can be very effective from my experience. The key is to titrate the dose slowly and know that pain relief may not come until the dose gets higher (i.e. a few weeks). Usually people start off with 25mg at night or 25mg twice a day and increase the daily dose by 25mg at weekly intervals. If the renal function is good (and therefore a reduced dose is not necessary) then generally people get some relief at 75mg twice a day. Some people need higher doses depending on how well they tolerate it. If people start to get side effects, I usually recommend that they drop back to the previous tolerated dose and stay on it for another couple of weeks before trying to increase it again.

Neuropathic pain is notoriously difficult to treat. Opiates are poorly effective as are simple analgesics. The older tricyclic antidepressants can be effective (eg amitriptyline) but are very poorly tolerated in most people. The other medicine that is showing some promise is one of the newer antidepressants duloxetine (Cymbalta) and I have seen it used in combination with Lyrica by some pain specialists. There are schools of thought that going on these medicines for a period of time (6-12 months) can reset the way the brain interprets pain signals, so you may not have to be on them forever.

Obviously this is general information from my experience and not specific advice. Talk to your doctor before deviating from what they have recommended.

Hope this helps,

Mark

Hi Maureen,

I had a similar problem with my cervical spine. I was lucky that I was a candidate for a plastic disc inserted rather than a fusion. But it was a very easy surgery and recovery. A fusion would have been a much longer recovery. Anyway, I wanted to let you know that there's hope in case that turns out to be the cause of your symptoms.

Thanks you for your positive comments. Maureen

heidemt said:

Hi Maureen,

I had a similar problem with my cervical spine. I was lucky that I was a candidate for a plastic disc inserted rather than a fusion. But it was a very easy surgery and recovery. A fusion would have been a much longer recovery. Anyway, I wanted to let you know that there's hope in case that turns out to be the cause of your symptoms.

Hi once again, I have been reading the comments from everyone which I appreciate so much. I started thinking about my situation and these are my thoughts. If I had a complete styloidectomy, why would the pain I am experiencing be related to Eagle's Syndrome. I have seen an Orthopedic Surgeon and had an MRI which showed diminished disc spacing at C4-5 level with evidence of disc bulging and posterior osteophyte complex formation noted at C3-4, C4-5 and C5-6 levels, with mild narrowing in the exit foramina on the right and left side at each of these levels, most prominent on the right side at the C4-5 level. The Orthopedic Surgeon did not call me to explain my results but rather sent the report to my physician who advised me of the Surgeon's recommendation, which was to continue with neck exercises. I have been doing exercises and stretches for my neck for so long that I cannot even remember when I first started. After three years of pretty much chronic pain this recommendation was devastating to me. I am trying to figure out which specialist I should see, an ENT Specialist, Orthopedic Surgeon or Neurosurgeon. Advice from anyone who has dealt with a similar situation would be appreciated. Thank you.

I would suggest neurosurgeon or orthopedic surgeon. A neurosurgeon did my disc replacement and he was really good.

Also, I saw that poster who said her styloid grew back. It probably wouldn't be a bad idea to get a CT scan to check for the styloid just in case.


Hi and thanks for your advice. I saw an Orthopedic Surgeon last year, he ordered an MRI and it showed cervical osteophytes and a bulged disc, he advised me to continue with neck exercises. I am going to see if I can get a referral to a Neurologist, a second opinion can't hurt.
heidemt said:

I would suggest neurosurgeon or orthopedic surgeon. A neurosurgeon did my disc replacement and he was really good.

Also, I saw that poster who said her styloid grew back. It probably wouldn't be a bad idea to get a CT scan to check for the styloid just in case.

EAmator,

I am in St. John’s and was just diagnosed with ES via panamoric x-ray by my dentist. They have sent my panamoric x-rays to my family doctor(Dr. Robbins). He will refer me to Dr Lee, who is literally a 5 minute walk away. What happens next when I see him, if I already have x-ray? New to all this, and still learning, still nervous. TIA
Dee