How are you doing now @Jacqui ? 
Hi Jules, thanks for asking!
Not great, to be honest. Struggling with the san damage, which is causing scoliosis and various difficulties. I never got the left stylohyoid ligament removed though, for fear of causing worsening spinal instability.
No one can actually tell me which thing is causing which symptoms and the EDS caused issues with tissue recovery after the right side styloidectomy op. So Iām reluctant to get any more operations.
Itās all kind of complicated!
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For another opinion, you could see Dr. VicenƧ Gilete in Barcelona, Spain. He specializes in EDS patients, CCI, AAI, spinal instability, etc., and is known to docs in the US to be a competent surgeon.
Here is an excerpt I copied straight from his website: āAt DrGilete.com, under the leadership of Neurosurgeon Specialist Dr. VicenƧ Gilete, we combine decades of hands-on experience with cutting-edge technology to provide comprehensive care for patients with complex spinal conditions. With over 25 years in neurosurgery, I have witnessed first-hand the struggles and triumphs that come with diagnosing and treating conditions like Craniocervical Instability (CCI), Atlantoaxial Instability (AAI), Chiari Syndrome, Tethered Cord, and connective tissue disorders such as Ehlers-Danlos Syndrome (EDS). Every patientās journey is unique, and I am committed to sharing my personal experience and expertise to offer care that is both state-of-the-art and profoundly compassionate.ā
Itās your choice, of course.
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@Jacqui -
Iām sorry you had SAN damage from your ES surgery. I know how debilitating the pain from a damaged SAN can be. Iām also sorry to learn that scoliosis is developing as well. I think, if youāre able to travel, the information @GeorgiaKay has given you would be worth exploring.
Your situation is complicated, but donāt give up trying to find the help you need for a better recovery.
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Iām sorry that the surgery didnāt help & that youāve had complications- itās so difficult to know what causes what and what treatment will be helpful when you have more than one condition, especially here in the UK!
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Thank you! I have heard of this doctor. I have mcas so canāt stay anywhere overnight, but maybe I could do an extreme day trip to go and see him!
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Thank you - I think the surgery did help some things. I no longer get the nerve twitching around my mouth at all, for example. But I think Iām more complicated than just the styloids, unfortunately.
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Thanks @Isaiah. The SAN damage happened before the surgery actually. No one can tell me why - I presume itās from nerve compression and thought the styloidectomy might actually free the nerve, but Dr Hughes said he saw no sign of the SAN during surgery and Iām still none the wiser.
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If you decide to look into Dr. Gilete, please let us know how it goes! We have him in the back of our minds as a possible surgeon to see, but weāre from the US and would like to hear othersā experiences before making a big trip like that. Besides, there are May Thurnerās and Nutcracker compressions as well as a double brachiocephalic chest vein compression to fix before consulting about CCI and other upper cervical issues at Dr. Gileteā¦
Itās possible Dr. Gilete would be able to tell you whether removing the left stylohyoid ligament will worsen spinal instability ā he specializes in working with spinal instabilities! And he does do telemedicine consults, so that might be in your favor after all, for getting a second opinion. Read excerpt from his website: Telemedicine has become a critical tool in providing specialized medical care to patients around the world, and at Drgilete.com, it plays a central role in making expert assessments accessible globally. Dr. VicenƧ Gilete, a world-renowned neurosurgeon specializing in craniocervical instability (CCI), atlantoaxial instability (AAI), tethered cord syndrome, Chiari malformation, and complex spinal deformities, offers teleconsultations using the secure Zoom platform. This service is particularly valuable for patients suffering from connective tissue disorders such as Ehlers-Danlos Syndrome (EDS), who often require expert multidisciplinary evaluations.
Best wishes ā I feel for you in all you have going, plus MCAS too. (I have MCAS as well, and it can be tricky to work withā¦)
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Thanks Georgia, thatās a game changer! Iāll take a look on his website.
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Let us know how you get on if you do decide on an telehealth consultationā¦Iām glad that you have seen a few improvements since your surgeryā¦strange about the SAN & what mightāve caused thatā¦
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Thanks Jules, I will do.
I imagine the CCI that caused the ES has caused some sort of nerve compression. I never did manage to get my top teeth realigned, in order to correct my jaw position. Still searching for an orthodontist who believes me and understands jaw/airway positioning enough to help! I think itās all linked.
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