Thank you to all of you to all of the different and similar point of vue. I was a little bit lost after this appointment and I need time to assimilate all about what Dr A. told me.
Of course, your perspective about the situation is always very interesting. Thank to @jules @Émeraude and @Isaïe4031 so so much !
I think I have understand my case a little bit more logic, maybe the explanation of the multiple disease and symptoms include this :
I first got a thyreodectomy whit a multiple nodules curretage wich traumatize so much my neck and muscles. Too, I got since that hypo parathyroidis wich make the muscles cramps so much and his the must red flag for calcifications. Right after the surgery the pain star in the right occiput and under my eye (I got always this). And I think, maybe I got Eagle before but my styloid process where much smaller
After many years of pain on the right side and the muscle necks always cramping with many trigger points + calcium at high doses per day since 10 years I think the eagle syndrom progress, the calcification growth and so the pain too never leave
In 2025, when I got my dry socket I got a pain like I never been able to support in my life it was excruating, really really 10/10 pain. And the pain start in my trigeminal nerve, in my tooth and goes right in my shoulder and in my arm. I got paresthesis too. But dentist don’t understand and say it’s not their fault and don’t find an answer. And this pain, I think waked up the styloid on the left side.
As you imagine, my neck became much more triggered and cramps 24/24, even with kinesitherapy every week. I sense under my clavicule as always since many years trigger points who referred a pain in my arm on both sides but none of the kine I saw win to removed them. Sometimes, I was pushing myself on it to try to decontract but it was always worse so I stopped it.
And we arrived to this diagnosis of thoracic outlet syndrom : I really think maybe after many years of pain, muscles cramps everyday, low calcium with hypo parathyroidis wich worsen all of the problems = my scalene and my SCM are so tense and contracted that it can pull on thoracic bones in continue wich create this narrow outlet.
I think maybe it could be a case ???
And also, my symptoms worsen years afters years cause now my pain is bilateral but too I got major hyperhydrosis (I can be able to explain how much I’m sweating it’s crazy) but it’s on the totally of the body. It’s just like someone who run a marathon but I just hung out my laundry !
And I made research about this, as my styloid mesured 5 cm and are very near to the vessels (even if Dr A. told me there is no compression), I suspect a compression of the carotid when I’m moving : I explain. As you know carotid is surrounded by fibers of the sympathetic nervous system and this system managed temperature, stress or blood pressure. And I’m very very sure I don’t have this before and as my styloid growth this symptoms appears and worsen every month. And the probability that the Dr. don’t see a compression is probably the position of my neck/head. Cause maybe, when my neck is a little bit turned or extent it may cause the compression.
To finish, I also so that Dr. A on his website explain very well that styloid process growth can lead to TOS cause of compression of the spinal accesory nerve wich weakens the trapeze muscle, lowers the shoulder and create a TOS !
This is all my research, I think it might be the right way in my case. I’m going to follow your advice Isaïe and start stage by stage. First I will got in septembre my parathormone treatment!! and after that, my muscle will be in best situation and I will find a good Dr to removed my styloids. I always searching a good surgeon not to far from France but it’s difficult. I identify one Dr from France who is in Laroche sur Yon, maybe Im going to go to got a second opinion. And in second time, I will see if removed the styloid and so removed the pain can open a bit the outlet thoracic without removed a rib. Cause it’s scaring!
Sorry for my looooong message again! thank you so much
@junonbss - Between what you’ve learned on your own & what others, especially @Emerald, have said, I think you’re on the right path to begin your journey toward recovery. Getting your calcium level sorted out first would be great, but it may not happen completely until your styloids are shortened. I agree that waiting to see how you feel after your styloidectomies to decide about TOS surgery is a good idea. You’ve made a good argument for why you might have TOS i.e. due to muscle tension that has gone on for a long time which is being caused by your styloids.
If you do find an experienced ES doctor in France, we would love for you to share his/her name since France is one country for which we have no doctors. We’ve left Dr. Sauvaget’s name on the list as a resource for our members, but we’ve repeatedly heard she is no longer doing ES surgeries.
I will continue to pray for you to find the best possible doctors to help you & that you’re able to get appointments that aren’t too many months in the future.
Hi junonbss, Just be a aware that the ENT in Laroche sur Yon only removes the distal portion of the styloid. Ask him, in your case, how many cms he would remove and whether this would be sufficient if your jaw/tooth/trigeminal pain is due to your styloid(s).
I think your theory with how your styloids have elongated and how this could potentially have caused TOS sounds pretty feasible!
If you don’t get anywhere with a doctor in France, @Algobe has mentioned a doctor in Spain in this discussion, although we don’t know anything about him:
Hi @junonbss I’ve just been reading your recent posts, I to have been diagnosed with ES together with IJV compression, but interesting I also suffer what I believe is TOS and I truly believe these conditions are connected. I am UK based and under Mr Axon. I have a follow up appointment with him on Fri and have been waiting surgery for 12 months. I hard to understand what affects what, but I believe its a knock on effect . I hope you manage to get the surgery that you need.
I was evaluated for TOS and got a positive diagnosis. I have elongaged C7 transverse processes.
My doctor (Dr. Panda who works with dr. Dean donahue) said that he had a single patient who had a styloiectomy and it completely solved her issues including headpain but also tingling down the arms.
He was saying that the thoracic outlet is really not so far away from the styloids and that they can all be contributing.
If i dont get relief from dr Liu or constantino when i meet with them, i may go with the c7 shave
@Krixen This is really interesting. I was evaluated by Dr. Dean Donahue at MGH for TOS back in May 2022, and he was quite certain I had it and was willing to operate if I moved forward with Botox to further assess. At the time, no one recognized the very elongated styloids that were clearly visible on my imaging. I ultimately had bilateral styloidectomies in December 2025, which resolved a number of symptoms.
So I find it particularly interesting that Dr. Panda/Dr. Donahue’s group is now recognizing that styloid-related compression can contribute to symptoms extending into the arms and potentially overlap with what looks like TOS. It certainly makes sense to address the higher-level compression first and then see what remains before considering the C7 transverse processes.
Dr. Liu is very knowledgeable and skilled. I had surgery with him this past Tuesday. He removed my bridged C1 arcuate foramen and my C2 ganglion/nerve root, which, fingers crossed, will eliminate the incredibly severe nerve pain I am experiencing.
And like you I had elongated styloids bilaterally but only my right side was symptomatic.
Sorry to hear about your pain. Maybe you are the person they were talking about!
I just met with dr. Annino today at mgh brigham funny enough, not 3 hours ago.
He was of the mindset that its more likely my issues are TOS related and that i should get thay done first. His reasoning was that because my pain is unilateral but switches sides throughout the day (based on neck movement usually) that its less evidence for eagles being the issue.
Im going to get an appt with constantino AND liu but dr annino was easy to consult with, being so close.
@Krixen I doubt I am the person they were talking about. That was back in May 2022, and I haven’t been back to them since. I actually found the elongated styloids through a Stanford second opinion in 2025 and then had surgery with Dr. Osborne in December, after Dr. Nakaji said nothing was wrong. I had also reached out to Dr. Costantino’s office, but they never got back to me after the initial call when they asked where I had previously been seen, which was MEE, MGH and BIDMC.
We’ve had members who have cross-over symptoms with ES, so I wouldn’t let having your pain switch sides during the day rule out ES as the cause…I’m glad that you’re getting some other opinions.
Thanks to @Emerald to have given this post to read!
Sorry as Isaiah knows I am far from my home and I am still on vacation in my mobil-home near the sea…far from stress …My web connexion is really bad bad bad and now my computer is showing serious signs of failing…so very difficult to connect, to read and give news…
Hi @junonbss If you can have an appointement with dr D—g-r-a-da could you share? I have tried to join him a few months ago , and after two mails he doesn’t more reply.That doctor only schedules appointments for patients living in the department
@MGORNEAU could you tell me if lymph nodes can be seen on scans…?
@Veroguilnec I consulted AI on this, yes, lymph nodes can be seen on scans, but it depends on the type of scan and the area being imaged. CT and MRI can usually show lymph nodes pretty well, especially if they are enlarged, and ultrasound is often very good for superficial lymph nodes in the neck. PET scans can also show lymph nodes that are metabolically active.
One thing to keep in mind is that a lymph node can be visible without necessarily being mentioned in the radiology report. Radiologists usually comment on nodes if they are enlarged, abnormal in appearance, or otherwise relevant to what the scan was looking for.
Hi Wendy, Yes it’s really interesting and I think we are all on the right path with this joint reflection!
Thanks @Emerald too for all your interesting explanations
I think I’m going to do this on this way. Going to treat my calcium and hypo parathyroidism with Yorvipath and see how I’m going on with it and if it can relax my muscles first, in january I’ve got my appointment at La Pitié Salpétriète with a Professor who is know to be a really good oro facial surgeon. I will see if she knows this syndrom. And I let the outlet thoraciq syndrom on the side for now and I will see how I my symptoms recover after the surgery.
Hi Emeraude, oh yes that what I saw on his website and comments.. so I don’t know if I will ask his opinion or not. I will take this step by step I think..
Hi Jules, oh thank you so much for this recommandations I will see this 2 doctors. It can be more practical for me to be operated in Europe, I will be more reassured I think
Hi Rosie, oh yes after so many search and all of my symptoms after many years I’m pretty sure that Eagle syndrom can cause outlet thoraciq syndrom due to muscles cramps and stiffness.
I hope you will got answers with Dr Axon! I you can give me a feedback, I wand to please :). If I don’t find answers in France, I think Dr Axon could be a solution too
Yes and I can testify about that cause my styloid mesured 5 cm approximatively and my pain goes right and left day by day. Monday it’s on the right side on the occiput and in the retro orbital area, it last 2 days and the pain switch off and come to the left side in my jaw, trigeminal pain associated with neuropathy in my shoulder/arm. So yes, I think it’s totally normal and the brain “choose” the most important pain and highlights it.
@Émeraude So yes, Dr Aghayev told me that my paresthesis in my hand and fingers came from my thoraciq outlet syndrom. I think the most that my thoraciq outlet syndrom is probably cause by my Eagle syndrom who cause a really excruciating pain and contract my muscles wich affect the neurovascular bundle of the arm
And for my hyperhydrosis, it’s not only in one area. It’s everywhere when I move a little bit. At a really low level of effort, doing my laundry or my dishes and I’m litteraly sweating like a marathonian. I think maybe my sympathic fibers / my vagus nerve are affected and compressed ?
