Hi Emma and Eaglerosie~ I haven't been on this site in a while, but I was happy to see your messages today. Eaglerosie, I haven't had surgery yet. The botox didn't work for me, and I've got more constant symptoms than ever. Because I live in Canada, I have some delay in that I had to apply for out-of-country health coverage. Dr Forrest is ready and willing to do surgery- the delay is from our government health care at this point. I have a tentative surgery date of Dec 3rd, but that will only happen if I get approval soon.
Dr Forrest is very personable, and I was impressed with his understanding of ES, in comparison with any other doctor I have seen here at home. We didn't discuss the orthostatic stuff specifically too much- I didn't really get into it because I recognize that its hard to know for sure if that is caused by the carotid or by cranial nerves- or by something else. (I can tell from how I feel, however, that there is a direct relationship between my other symptoms worsening and my orthostatic issues simultaneously worsening) As well, that particular symptom isn't shared by as many of us as something like neck pain, and for some doctors it seems to just confuse the issue. I was just glad to hear him say that he agrees that the ES is causing me significant issues and that it needs to get fixed.
Emma, thank you SO much for your homework on former outcomes with Dr Forrest. I also tried friending Terry, but didn't hear back. I suspect the requests haven't been seen. I think it was AmyBlue's experience that originally alerted me to Dr Forrest as an option. From what I have read online, he is a very capable and confident doctor. My remaining struggle is in how much of the styloid he plans to take out. I don't like the idea of leaving 2cms behind, especially given that mine have grown a full centimetre in about a year. That makes me wonder how things will go long-term, even if things are good at first. I've read a lot of stories on here about that issue- but Dr Forrest said he didn't think it should be one- as he will reattach the stylohyoid ligament elsewhere, thus making it so that even if the styloid regrows, it won't make a strap. I wonder how many of my symptoms are just the bone itself, and how many are from the 'strap' created by the ligaments that attach to it. Its always a bit tricky having a conversation about that sort of thing, because in the past I have seen doctors react poorly to my commenting that I read something online about someone else's experience- so now I am very cautious.
Eagleheart- I thought I had sent you a thank you earlier from my cell phone, but I don't see it on this page. I apologize. I wanted to thank you for your well wishes. It gives me comfort to hear that your orthostatic symptoms have improved so much post-surgery. Did you have the whole styloid removed?? I apologize if you've already told me this and I forgot- its hard to keep everyone's experiences straight!
Great and JKL just joined us. So hope you all get help and then report back when you have your surgeries. Thanks to everyone who is staying on here. I am not comfortable that my first surgery will be my last and you all are helping to make our futures brighter.
JKL just joined on a different discussion. But had recent surgery with Dr. Forrest. Good luck to all.
Ang, I had this surgery with Dr. Forrest last Friday, October 18th. 8 days post op and I feel pretty darn good! We drove to Columbus from the Chicago area on Thursday, had my surgery Friday, and was in my own bed Saturday night. Not gonna lie, the first few days were rough with a sore throat and neck, but I would not hesitate to do it again. Both he and his surgical staff were wonderful...as well as professional and knowledgeable! He has done this surgery many times. I think in a couple of months my scar will be barely visible. I'm breathing and sleeping better than I have in years...
Thats awesome, JKL!! I'm so happy to hear this! I have a few questions, if you don't mind!
Did you stay overnight after your procedure? Was it quick? Did he take the whole styloid? One or both sides? And did he do the procedure right at Wexner Med Ctr?
Also, did you have vascular symptoms at all prior to surgery?
This is exactly what I was looking for- thanks so much for commenting!!
It was JKL who first mentioned Dr Forrest to me, and I had seen his name on this forum, then JKL confirmed it over a month ago on my post. Glad to see everyone coming together to share. So glad your surgery is behind you now JKL, was it external? Must be because you mentioned your scar being visible now.
Dr Forrest is in the exact same specialty of ENT that the ENT I am seeing now is in. He is at Madison, WI. I really liked him, he is wise, but is hesitating on surgery, namely because symptoms that are Eagles related are overlapping due to my neck (congenital fusions) symptoms. I say, if we can't fix the neck, which we can't, lets fix this!! I do not see what I have to lose.
One question Ang, I don't understand about the "strap" you are talking about???
Of course I don't mind! The procedure is done as out patient at the Eye and Ear Clinic, a wonderful facility in Columbus. The average procedure takes around an hour, and Dr. Forrest does his surgeries on Fridays. I spent the night in a hotel Thursday and on Friday, and made the trip home Saturday. My procedure went a little longer because my styloid was larger than he expected, and due to my TMJ they used conscious sedation.
He removed my right styloid to what it would be if my anatomy was normal...meaning there is a small bit left. If you need both sides done, you wouldn't have them done at the same time. I think you'd probably have to wait a couple of months to do the second. Right now, my left side isn't coming out, we're just going to keep an eye on its growth.
Prior to surgery, I could hear my heartbeat pounding in my ears when I lay on my side in bed...drove me crazy and scared me! I also had some wicked dizzy spells on occasion if I turned my head quickly. After surgery, Dr. Forrest commented how fortunate I was that most of the calcification was actually away from my carotid. I really expected the opposite.
I hope this helps and wish you the best! Let me know if you have any more questions! Ang said:
Thats awesome, JKL!! I'm so happy to hear this! I have a few questions, if you don't mind!
Did you stay overnight after your procedure? Was it quick? Did he take the whole styloid? One or both sides? And did he do the procedure right at Wexner Med Ctr?
Also, did you have vascular symptoms at all prior to surgery?
This is exactly what I was looking for- thanks so much for commenting!!
Dear Ang,& everyone else,
I’m miserable! Terrible tension headaches everyday! Also bilateral earaches, Tinitis, my eye sockets hurt, ect… I feel like a big baby complaining! I’m going to try and get a consult with Dr. Cognetti. Then Dr. Forrest. I live in Michigan. I just need some relief so bad! I’m getting a block ( Bilalateral Styloid ) with cortisone. Probably get 3 weeks of relief if I’m lucky! I’m still recovering from my spinal cervical fusion from C-3 through C-7, in June.
Ang - I am a newbie to this site but have had 20 years of symptoms, many that sound like yours. I have a couple of questions…first, what do you mean when you refer to a “strap”? I have been wondering about what happens after the ligaments are detached and just left hanging out if the entire styloid is removed? How long have you had symptoms??
Also…I have a lot of trouble bending over and standing back up, etc. especially is I do that repeatedly. It can take me days to recover from too much yard work, for example. Causes me a lot of vertigo/dizziness/postural instability, etc. I have had significant visual disturbance (that prisms have helped with) too.
Anyway, I am meeting with an ENT in Boston on Friday for an initial consult and hoping to be prepared with questions.
I do hope you find all the answers you are looking for and I wish you very good luck with your doctor and possible surgery.
seiders - Generally when the styloids are removed, so are the ligaments although some doctors may leave them in. They play a minor role in swallowing. FYI - the external approach for ES surgery is more advantageous than the internal from the standpoint that the surgeon has better visability of nerves & vascular tissues & better access to remove the styloids as close to the skull as possible & fully remove the ligaments.
Hi there, I am new to ESand haven’t gotten a definite diagnosis yet. I am looking for a doctor in Ohio. I live in Dayton, so Columbus is probably closest for me. Did you end up having surgery w/ Dr. Forest? And if so, how did it go and do you still like him?
I really appreciate any information you can give me! Thanks so much!
I ended up having surgery in Canada in 2014. It has made a huge difference in my quality-of-life.
Dr. Forest told me that he had done many ES surgeries successfully, but I don’t have any experience to know how they turned out. I recommend joining the Facebook page for eagle syndrome patients. I imagine there are some people on that site who have experience with Dr. Forrest.
Best of luck to you, from what I have seen a very high percentage of people are glad they had surgery and feel better after.
Thank you so much for your reply! I’m glad you were able to get relief!!! I’m going to try to get in to see Dr. Forrest. His reviews are amazing, fingers crossedg
Hi Angela, it was great to read your post some years after your surgery and really encouraging to hear the positive impact surgery had on your quality of life!
Would you mind sharing if your symptoms have all improved and whether you had any issues following surgery? I’m in the pre-surgery stage and trying to decide if should have external or internal surgery. Any comments/advice you might have would be appreciated. Sending you all my blessings. xx