For those who have Eagles and TOS, did a styloidectomy have an effect on your TOS?
I have bilateral Eagles and nTOS. Had a right side styloidectomy which helped some pain and symptoms and helped my POTS but my left side has always had much worse symptoms. We did right styloidectomy first because of jugular compression but now I have jugular compression on left side and will likely have left styloidectomy this year. I feel like getting the left styloid and ligaments removed will help the TOS too but curious what others have experienced. I have not had TOS surgery and hopefully will be able to continue managing it with PT.
My tos is worse on the right side and I’m too close to the right styloidectomy to know if it had any effect. The left styloidectomy didn’t change my symptoms at all.
Hi outdoorgirl, I have both neurogenic TOS and eagles syndrome. I had an anterior scalenectomy on my left which did nothing for symptoms - waiting to see a vascular about TOS. You may want to look into the ENVEST physio program for TOS as many other programs start with strengthening which is for the most part the wrong approach. ENVEST focuses on stabilizing neck muscles and on breathing exercises before strengthening.
I am also waiting to see a surgeon about ES. It is tricky because many of the TOS exercises may impinge on the styloids.
I am curious about your ES journey. How did they find out you had jugular compression? My TOS MRI/MRA/MRV studies show IJV compression but they were looking at it from a TOS lens not a ES lens (I found out about my ES a year after these studies). What were the definitive tests for jugular compression from the ES?
There is a good chance you will have relief from the TOS on your left side after ES surgery. This is because elongated styloids often irritate the accessory nerve which innervates neck & upper shoulder muscles. When those are irritated, they can present as TOS type symptoms. We do have some members who’ve had good resolution to TOS type pain some months after ES surgery. I wish I could say this is universally true, but it’s not. Sometimes our health challenges come in “layers” & we have to deal with each one as we can.
Hi Outdoorgirl
I have been dx with TOS 15 yrs ago, I did have bilateral rib resection, scalenectomy, and pectoralis minor release by Dr. Brantigan in Denver CO (he is an excellent surgeon). I had lots of improvement but still have random bad days. I just got Dx with ES which I suspect may have been brewing for years. I have attributed all my unexplained symptoms to the TOS. I am so optimistic that this may be the answer to being rid of all the symptoms. I will keep you updated when I get the surgery of how it affects the TOS.
I will hope & pray for your ES surgery to be the answer for resolution of your symptoms, Suzetteas. It may even help w/ some of the residual TOS symptoms you have.
Were you able to tell a difference after your TOS surgery? I have eagle’s syndrome on CT but most of my symptoms are consistent with neurogenic TOS - scalene triangle pain, ulnar nerve on EMG, scapular pain, weakness of 4 & 5 digits, pec pain. I get ringing in ears and some neck pain which may be from ES but it does not account for all my symptoms. I’m in Canada and both eagles syndrome and neurogenic thoracic outlet syndrome are ignored here. It is a disgrace to our country as it was founded on universal health care. Most surgeons will take a pass on procedures involving nerve impingement syndromes.
I did see lots of improvement after the TOS surgery. Same as ES you need to be sure you have the right surgeon. I got my surgery in Denver and later moved there and got to see lots of people from around the country to have revision surgery with the surgeons in Denver. I have way less as far as numbness/ tingling and circulations issues. I wouldn’t say perfect but lots better. I had 6 hr surgery on each side mainly removing scar tissue off the nerves from what the Dr. said. I feel your pain about the healthcare system I went two years and many doctors in many city’s.
Until I had a 3D cat scan in Denver my issues were unexplainable to a physician.
I am hoping the headaches, ear pain, neck pain, ringing in the ears, sore throat etc… are going to be resolved with the ES surgery. I would have never known about this if I didn’t discover the mass in my mouth.
Thank you. I have many hand and arm symptoms, also scapula and scalene pain. Most of the symptoms are consistent with TOS, as I am losing function of my 4th & 5th fingers and ulnar nerve compression shows up on EMG. But also I have neck pain, ringing in ears and some tingling towards jaw, which is consistent with ES. I really don’t know what to do - and in Ontario surgeons avoid operating on both syndromes. Our healthcare system in Canada is not as good as everyone thinks.
Though we’ve had Canadian member’s who’ve had successful ES surgeries, we have also had members who couldn’t find a doctor willing to help them &/or who were unable to travel outside their provinces to see someone elsewhere in the country. Have you tried contacting the doctors on our list who are in Ontario? (Sorry if I’ve asked you this before…). If so, did they turn you down (it helps us to know so we can make a comment on our doctors’ list).
