First i’d like to thank everyone on this forum especially the moderators as it has been incredibly helpful and mentally reassuring to know what others have and are going through. Before finding this forum i was incredibly frustrated and quite lost as i had just found my diagnosis. I’m a Canadian, and quickly found that there was no one here that could help me and the prospect of navigating the US system for a surgeon was quite daunting. So thank you all so very much.
I have a call with a surgeon (Cognetti) tomorrow and was looking for some advice on what to ask or what to say with respect to my Eagles condition. I also have a call with Samji later in the week.
From my CT -Venography report - **The left internal jugular vein does appear severely constricted between the left styloid process and a somewhat prominent tranverse process of the left C1 vertebra. It appears within normal limits above and below this level. ** The left styloid prcess measures 40mm and the right styloid process measures 41mm
I’ve had additional ultrasounds that confirm my left internal jugular is completely restricted.
A few questions: I’ve seen the names of Samji and Cognetti mentioned many times on the forum, Can i go wrong with either one? I think i’d prefer to go see Samji but i can drive to Cognetti in about 8 hours and the prospect of flying isn’t something i’d like to undertake at this time. ( flying causes me a lot of pain and flares up all of my issues) - So unless Samji is a much better fit for my condition i’m leaning towards Cognietti (this is assuming either one will accept me of course)
From my reading on this forum i see that i have several issues:
both of my styloids are elongated - symptomatic on the left side only i think.
left IJV compression
Prominent Transverse Process of C1
cervical instability - i saw Dr. Hauser at Caring Medical in Ft. Myers that finally was able to confirm all my crazy, seemingly unrelated symptoms.
Dr Cognetti has a longer wait as he does surgeries less often (but is still very experienced)
He doesn’t take the styloids back to skull base, but leaves a little bit- I would check with him that enough will be removed to decompress your jugular vein, depending on where exactly it’s compressed.
Dr Samji I think would remove more of your styloid process unless he can’t do this safely for example if the nerves are too tangled. But obviously again I would check this with him also.
I would ask both about the cranial instability- I think from memory Dr Samji has operated on at least one member with this; not sure about Dr Cognetti with that.
The questions we usually suggest members ask we know already with these doctors- they both do external surgery, both monitor nerves etc. & both have done many successful surgeries.
Dr Samji does do styloidectomies more often, so there would be less of a wait. If you did decide to have surgery with him, @Snapple2020 has written about her experience & given lots of useful info about where to stay in the area etc, you could search for that. @Dizzylady has also recently travelled to see Dr Samji from Canada, you could send her a private message to ask about her experience.
4.0 and 4.1 cm is some lengthy spikes. I have cervical instability (EDS) as well as pretty severe TMJ to go along with it. Be forewarned that ES surgery can trigger some TMJ flairs. Make sure you demand to speak to the anesthesiologist the night before surgery and then bring it up again before surgery about your neck instability to you nurse and anesthesiologist again. If you have a written record you can hand them, they listen better. They can’t ignore a written record. Its easy sometimes to have them blow off patient issues as just “concerns”. This is just from an advocate position I recommend this.
I did not have the value of a CT venogram report before my surgeries and wish I did. If you go with Dr. Samji, make sure you discuss your compression and be clear on his approach. He did my 2 surgeries and it generally went pretty well. I was under the impression, he makes the assumption that when he opens you up and removes styloid and calcifications that anything that is compressed gets decompressed. We do know that a recent Canadian may have paid about an $11K price for Samji. Once he sees you (in person or remote), you can usually get in for surgery within 3-4 weeks. He will likely be the one to get you in the quickest. Im not familiar so much with Dr. Cognetti.
You also may also want to consider Dr. Hepworth in Denver. I dont think he does remote visits though? others can fill you in on that. He may focus more on IJV /C1 issues than Samji. Make sure you explore this fully before you decide which surgeon to chose.
If you decide on Samji, there is a few of us that can make suggestions on hotel stays, transportation, etc. Good luck on your consults
Just to add a little to what Jules & Snapple already said (they were both very thorough), I don’t think you can go wrong with either doctor. It is important for you to have a discussion w/ both doctors about your compressed IJV & to feel certain that whomever you choose will keep an eye on that to make sure the styloid is cut back short enough to take the pressure off your IJV. Dr. Samji tends to be dissmisive of the term “vascular ES” so I would simply discuss the fact that you have IJV compression associated w/ your elongated styloids when you talk to him. Not sure about this situation w/ Dr. Cognetti.
As Jules noted, Dr. Cognetti doesn’t do ES surgery as often as Dr. Samji. Again, just make sure you’re satisfied w/ how the IJV situation would be handled. That is info you really need before deciding which doctor to see.
Looking at your scans, I would say your styloids are longer than the radiologist says they are. Often, when a person has ES surgery, the surgeon finds the styloids to be longer than expected from the scan images. Yours look pretty long, pointed, curved & overall
They put patients in weird positions sometimes when they put you under anesthesia and when they are putting the tube down the throat. Also a few patients have mentioned recently that ES surgeons have explained that they dislocate the jaw some to do the surgery. This is likely why it might trigger some TMJ flairs after surgery. Let the surgeon, anesthesiologist and nursing/OR staff about your instability so they treat you gently. re: Neck & jaw position while you are under and prepping you for surgery. If you dont speak up, they wont know.
Thanks for the info on Dr Hepworth- not surprised that there’s a longer wait, we know he’s been really busy, because he’s so good! He’s very thorough & does lots of testing before surgery which would be difficult for you.
I guess you need to let them know about the instability because of intubation & neck positioning in surgery.
An update - I spoke wit Dr. Samji yesterday - seems very nice.
He mentioned something that i had not heard before - he doesn’t believe the styloids grow once your skeleton has finished growing. For men that’s around 26 he said. His belief is that my styloids have been that long (40-41mm) for 25 plus years. I understood that the Styloids were long because the Styloihyoid ligament calcified. This leaves me wondering why i would start to have all these issues a couple years ago, if i’ve had this condition for 25+ years. And if the symptoms started, can they go away without surgery?
He did mention surgery is always risky and has had some issues in the past with cutting nerves and vascular structures (1-2% chance of issues he quoted to me). And just like other surgeons he can’t promise it will get rid of all the symptoms and choosing surgery is definitely something to be considered carefully - there are risks.
He also mentioned that he doesn’t think Jugular Vein compression is very important. Feels like it doesn’t cause any issues as they often close off the jugular when doing other Cancer surgeries. - That seems to go counter to some of the stuff i’ve read on this forum. Interesting how everyone sees it differently.
He basically sees removing the styloid as the important thing and the other issues will hopefully resolve themselves but you need a surgeon with the skills to fix any vascular issues should they get cut in the operation - which he has.
He says he performs surgeries on Mondays for out of town people. A pre-op on Friday, Surgery Monday and post op follow up on the following Friday before you are clear to go home. That’s a lot longer than others have said - i like that.
Approximate cost was $12000 and can get in within the month. Very promising - now i just have to figure out how to get there without getting Covid i suppose.
Can anyone shed light on the thought, Styloids have been like that for a long time, rather than have grown to cause the problems? Seems like nobody really knows what actually causes ES.
Yes, I just did the travel in and out surgery with Dr. Samji recently. My surgery was Dec. 13th. He and his team seemed very experienced and everything was streamlined for out-of town travellers. I travelled there from Canada. As for not catching COVID, that is critical, so I would recommend finding N95 masks that fit very well with a good seal around your face - this works best clean shaven without facial hair - just FYI. I didn’t take my N95 off the whole time on the plane or in the airport except for a second when the border agent needed to see my face. I found LAX to be very crowded and not socially distanced, so some airports may be safer than others.
There are some other threads you can search on this forum talking about ES causes such as whiplash or other head /neck traumas that stimulate the styloid bones to grow / calcify. I had whiplash at 13 years old, but didn’t pop up with severe symptoms until 45 years old, although other symptoms were coming up such as morning nausea, fatigue and coughing fits in years before. At 45 I just woke up one morning super dizzy and with tinnitus and ear pain on the right (CT showed my styloid on the right was 5.1 cm). I can’t confirm Dr. Samji’s theory that they stopped growing when my skeleton was done growing, but, it could be possible. I can say some of the issue is with not having enough space at the base of skull for the styloid and the nerves and blood vessels, causing irritation of the packed together structures. Over the years I have gained some weight, from 117 in teen years to roughly 10lbs every decade. I’m just now pushing up to what might be considered a tad too plump for my current age of 48, so maybe this natural aging and slow weight gain just left me with not enough room in that tiny space over time? Plus maybe sleeping funny that fateful night? Hard to say… My left styloid is 4.8 cm long and oddly causes no pain and seemingly fewer if any symptoms. I’m still waiting for the swelling on the surgery site to go all the way down and am hoping to have resolution of the dizziness and tinnitus, which have not yet resolved. The pain and coughing attacks and my mobility have improved tremendously and I’m like a new woman now actually getting restful sleep! Having the surgery with Dr. Samji was the 100% right decision for me.
I hope you will find relief soon! It is a real challenge to get timely help. I was on a waiting list in Canada for over 6 months, before going to Dr. Samji. Also there was a lengthy delay in diagnosis of a couple years, which is unfortunately all too common in ES because it is so rare, has an unusual compilation of symptoms and can’t readily be ‘seen’ unless looking at a CT. Good luck Tomas, and keep us posted on your progress!! Take care and hang in there! You will get help!
The styloids can be long naturally, and the thinking is that as we age, connective tissue isn’t as strong, and structures slip slightly/ alter, which can be enough to then cause symptoms which you might not have had previously. You’re also right about the stylo-hyoid ligaments getting calcified- this can happen with inflammation etc and it can calcify from the styloid down, which would then increase the styloid’s length, or from the hyoid end up, or otherwise in patches along the ligament. We’ve had members whose symptoms have improved for no known reason & they’ve been able to delay surgery, but people often do decide they need surgery later as the symptoms return. Often though they do worsen, and surgery is the only real cure. Obviously if members have opted not to have surgery & don’t need to have support & info from here & leave, then we wouldn’t know, if that makes sense, we tend to see those who need the info!
We have had members mention before that Dr Samji isn’t as concerned about vascular issues, but as you say it’s removing the styloids which is important. It is extremely rare for jugular veins or other blood vessels to be nicked during surgery, especially when seeing a skilled surgeon, but it is a risk which we all have to accept with any surgery.
That’s interesting - my symptoms have changed over the last 2 years. Not better but different. 2 years ago i had a lot of nerve issues in the left side of my head, face, tongue, neck, arm/hand. I was imaged for MS, Parkinson’s, ALS, stroke - always negative. Now the nerve issues are down to a minimum but the throat choking is worse.
The way i imagined it was - as the styloids elongated, they pushed their way through that delicate area and hit different nerves and vascular structures. Over time all the things found their place and symptoms changed as they did.
But i can see that maybe the styloids were always that long and other structures or issues including cervical spine instability could cause things to move around and get aggravated.
I had whiplash in my early 20s & had a similar issue w/ symptoms changing except mine started w/ the choking issue you’re having now & then progressed to the nerve type pain/dysfunction. My earliest symptoms of ES were choking on food when I ate to the extent I needed the Heimlich Maneuver done to keep me breathing (SCARY!! ). That problem sort of went away/reduced so my choking occurred more when I drank something than when I swallowed food. A couple of years after that, I started getting pain in my neck/face/ears & blood pressure drops w/ racing heart & feeling like I would pass out when I exercised anaerobically. I think I may have mentioned all this before. At any rate, ES symptoms an be crazy, can change, sometimes even from day to day.
I hadn’t considered what Jules mentioned about the changes that occur in the soft tissues in the neck as we age, but that seems like a plausible explanation for at least some of the variation in ES symptoms over time. I was 58 when I was diagnosed.
I will say, Dr. Samji has been consistent in his surgical protocol over the years w/ pre-ops for Monday surgeries being on the Fri. before & the follow-up appts on the Friday after (except in rare cases when it’s on a Thurs). The surgery center he uses is w/in a couple of minutes of a major hospital so there is excellent help very nearby, plus the surgical staff is trained for emergency response just in case. Because of my experiences with Dr. Samji, I can confidently say you’d be in excellent hands if you choose to have him do your surgery. I’m glad he was up front about possible complications during surgery. That’s also a sign of a good surgeon - letting you make an informed decision about whether surgery is right for you.
). That problem sort of went away/reduced so my choking occurred more when I drank something than when I swallowed food. A couple of years after that, I started getting pain in my neck/face/ears & blood pressure drops w/ racing heart & feeling like I would pass out when I exercised anaerobically. I think I may have mentioned all this before. At any rate, ES symptoms an be crazy, can change, sometimes even from day to day.