My deep, constant, chronic dull tightness ache in my skull base, head, neck and upper traps started a few months after my adult tonsillectomy. Neck feels like it’s wrapped in plaster. CT scan show normal-ish styloids, and jugular catheter venogram showed no pressure gradient. Also as a fun cherry on top, terrible upper trap pain eventually caused arm weakness and heaviness too — vascular surgeon wants to treat TOS. Would ONLY have surgery for tos if it would resolve head, skull base, and neck symptoms, which seems less likely but please weigh in that if you have thoughts please.
My right SCM has turned thick and rope-like as a bonus gift
I have seen all the doctors listed in the subject, but still waiting on visit with Cognetti. Each doctor has a different approach — some will only removed styloid and someone will shave C1, etc. Any advice greatly appreciated based on your own experience, who’s the best to treat my symptoms, did these symptoms resolve for you, and who you’d see please. Feeling so lost. thank you so much and Merry Christmas.
I’m really sorry for what you’re going through & for the differing opinions you’ve gotten regarding the best approach to help you.
I don’t have experience w/ TOS but I did see Dr Hepworth for surgery for IJV decompression (don’t need a C1 shave) & a revision styloidectomy as my left styloid either regrew some or wasn’t cut short enough first time around (by another surgeon). My IJV decompression has stopped my progressive hearing loss & related vertigo which is a step in the right direction for me. I also had skull base pain from collateral veins which developed to “assist” my compromised IJV. My occipital pain/pressure is also gone. Chronic tinnitus remains in my left ear, but the culprit appears to be missing bone from a previous inner ear surgery. Dr Hepworth is working at helping me to figure out cause & a potential cure for that.
I don’t have experience with the other doctors you’ve seen, but all of them are highly experienced with ES surgeries, & w/ the exception of Dr. Hackman, w/ IJV decompression as well.
I hope you’re able to decide which doctor of those you’ve seen seems to have the best approach for your care so you can confidently move ahead with the surgery or surgeries you need.
It’s hard when you get differing opinions about what surgery is best for you! We have had other members who are or have been in the same dilemma as you, with the ‘expert’ VES doctors not in complete agreement about the best path… As @Isaiah_40_31 says, although the doctors you’ve mentioned are very experienced & have done lots of successful surgeries, but if you do have vascular compression then probably Dr Hackman might not be the best surgeon for you as he doesn’t look for any other compressions on the blood vessels after removing the styloid.
We have had some members who have had TOS surgery & it has improved symptoms a bit, but they’ve still needed the styloids removing, & some who have had ES surgery first. With vascular compression syndromes, the consensus (it might’ve been Dr Hepworth who said this) seems to be to start with the head & work down…
I think really you have to see how confident you feel with each doctor’s approach, and consider things like travelling, recovery afterwards, where’s easiest for you to get to, & if you can be around a bit after surgery in case of any complications etc.
I hope you come to a decision you feel confident with!
My first thought is scar tissue and muscle imbalance causing alot of dysfunction of SCM? My question is how are any of them suggesting to treat TOS - what type of surgery and where? Has your rotator cuffs been checked out? MY first suggestion would be to have a MRA Chest ANGIO if not already been done. (Neurogram of Thoracic outlet & neck). If I recall, none of the docs above are really TOS specialists (?) although no doubt have knowledge of TOS. I may be wrong here but I sought out a well regarded TOS specialist who ordered specialized scans along with exams to confirm the TOS diagnosis.
I have along history of neck, shoulder & arm issues (has numerous surgeries) and have been evaluated and diagnosed with nTOS. I had bilateral eagles surgeries in 2019. The TOS kicked up a few years later in about 2022. I have all kinds of knots/ropes in my neck and tried pretty much all types of treatments due to whiplash over past 50 years. I did have TOS surgery on left side 20 years ago (it was minor) and was looking at it again however I think because I have EDS, they are afraid to touch me. My old neurosurgeon is cash only now so I cant return to him.
One thing that has helped me with the knots is botox because it is constant spasm. I was lucky to find a neurologist that does this every 3 months and diagnosed me with dystonia and torticollis. Botox at the base of the SCM triggered massive pain though so have stayed up high and generally dont go into the neck anymore and stick to jaw/temples and base of skull. I have also tried hydrodissection which didnt help. Im pretty certain I have scar tissue causing compression and calcified ligaments that were not removed in my first ES surgeries. Im going back in for another eval with Hepworth (1st time with him) but related to neck/ear issues and evaluate for internal jugular compression.
My only other suggestion is to consider dry needling and/or a combo of regular (weekly) cranial sacral / deep tissue massage until you get handle on the SCM. After my ES surgery when my neck was still half numb, I had acupuncture and she attached a tens like unit to the needles and shockingly it helped my neck. It was a not a treatment I would have sought out. Cranial sacral should be done by a highly experienced practitioner (not a massage therapist who has take a few weekend workshops) Usually a skilled OT/PT with osteopathic background are most skilled (Check out provider search at Upledger Institute for ones in your area. This has been one of the most valuable treatments I have had over 50 years and I wish I had found it sooner in my life.
The above alternative treatments at a minimum might get that SCM to relax and calm down….give you some relief while you are further evaluating any type of TOS surgery. Hope that helps
Samji in San Jose. I went back to my records and see my scalenes (not SCM) at the base of the neck (clavicle area in front) were where I had the botox re: to address TOS. It put me in some serious pain. Perhaps he gave me too high of dose? Wasn’t willing to try that again.
Thanks Jules, I never have heard about this kind of treatment. Looks similar to TENS units but more advanced. Looks like a do have a provider in my area around Tacoma, Wa. Here a weblink to find providers and case studies, etc. NeuFit for Patients | Recover & Heal with Neubie®
@Steven1976 - I also had my initial surgeries done by Dr. Samji. I did have good recovery from nerve pain from both surgeries he did, however, as noted, he missed the IJV compression which began post a cycling accident between my surgeries as a result of the way I fell. It has left me w/ moderate-severe hearing loss in my left ear. I have no proof that getting my IJV decompressed sooner would have saved my hearing, but I believe it could have.
