Hi everyone,
I’ve been trying to read up more on eagle’s to prepare for my upcoming appointment. The more I read about cci and ES, the more scared I am. I might have cci, one doc thinks scans show I do and other doesn’t think so. I improved with invasive traction but not enough to qualify me for fusion surgery. So I’m scared if I get a styloidectomy or some other ES surgical intervention my possible cci will get worse. I guess I have 2 questions:
are doctors Cognetti and/or Hackman knowledgeable about cci?
do they ever just remove part of or like uncalcify the stylohyoid tendon? I reread some doctor notes and saw the neurosurgeon said my jugular is being compressed by my c1 vertebrae and calcified stylohyoid ligament.
Dr. Henderson in Washington, DC, is one of the foremost CCI doctors in this country. As I understand it, he believes that styloidectomies do NOT increase CCI. I’m sure there are differing opinions among medical professionals & also differing experiences among those who have CCI & have had styloidectomies.
Since you have IJV compression, you would be better off seeing Dr. Hackman since he cuts the styloid shorter than Dr. Cognetti, but you could have a consult w/ Dr. Cognetti & ask him if he’s familiar w/ CCI & what he does w/ IJV compression. He’s helped quite a number of our members who had IJV compression. I don’t know that anyone has commented regarding his knowledge or lack thereof of CCI. Dr. Costantino in NY specifically does IJV decompression surgery. He would probably be the best doctor for you to see though I have no idea what his thoughts are about CCI.
Thanks! Dr Henderson is the one who told me I had a compressed jugular. I was seeing him a second opinion on my cci. I don’t have issues with him as a doctor, but I was hoping to not have to go back to see him again since he’s expensive and we’ve had to pay a lot of doctors out of pocket.
Since you’ve seen Dr. Henderson, & I don’t believe he does styloidectomies or vascular decompressions, you’d have no reason to see him again unless you’re going to have a cranio-cervical fusion. Dr. Costantino should be your next stop on the journey of getting your IJV decompressed.
Yeah I was surprised he does do the Eagle’s syndrome surgery, at least it seemed implied during my last appointment. I was surprised since my other cci neurosurgeon does them and I figured they all had the same skill set . I guess that was very naive on my part. I was hoping to avoid NY since my dad is still traumatized from having taken me there for the invasive traction. Apparently NY on ramps are very short.
I have been receiving PRP for CCI at Caring Medical, Florida where I was also diagnosed with Eagles Syndrome and had a styloidectomy by Dr. Cognetti. My JV was flattened at C1. The styloid was removed to the base of my skull.
My symptoms went away for about three months but then I started having issues with scar tissue pulling at C1 from where the styloid was removed and around the neck incision. The CT venogram and brain MRI I had done after surgery showed no evidence of intracranial hypertension but a recent ultrasound done at the clinic of the referring physician showed only a slight decrease since the operation. The referring physician is now trying to determine if the cervical instability is still the source of intracranial hypertension or the left styloid which is also flattening the IJV.
Yes my doctors think hat my ijv compression is caused more by my c1 not be where it should be han my elongated styloid. Do you have any infections btw? I’m asking since I have Lyme and coinfections and I’ve been worried prp might make things worse.
Are you worried about the interaction of PRP and an autoimmune disease? I believe I have autoimmune condition caused by a vaccine I took in 2009 and when I had PRP, it was extremely painful for about 2 weeks following treatment. I switched to prolotherapy and didn’t have the same extreme symptoms after prolotherapy with dextrose.
Hi I am new here ! So glad PRP has helped even post styloidectomy. I’ve been trying to decide between go ahead with eagles surgery or doing something like picl first with centeno and Shultz . So many people say it doesn’t work as well after eagle surgery so that’s what has been primarily delaying my surgery decision. Any insight you may have on this would be helpful and appreciated thank you!
I’m so sorry I’m just seeing this now. My worry with prp was I have lyme and I didn’t want to introduce infections to my ligaments inadvertently through prp. I ended up finding an eds PT who taught me me exercises to stabilize my neck. My right eye vision improves greatly when I do them, and she seems to think I should be reasonable stable now. At least my c1 stayed aligned after a couple weeks. We’re waiting to get another venogram to see if the jugular is still compressed.
Just fyi, I ended up seeing cognetti and he didn’t see ijv compression in my scan. The same scan henderson and ruhoy saw it on. He was very friendly and asked me to tell him if I ever figured out how to solve my issues. I ended up getting side tracked and getting treated for may thurner and nutcracker last year, which has helped but not cured my dysautonomia. I’m planning on asking the vascular surgeon who stented me for those to see if he’ll order another venogram to see if I still have ijv compression after working with the eds PT to get my c1 aligned.
@Bailey - Do you mind sharing the name of your EDS PT? (S)he sounds amazing, & we have so many members with EDS now it would be nice to have a resource/starting point for those who live in your area of the US.
Prism Spine and Joint is a good place to go for help. https://prismspineandjoint.com/ They also know other PTs in the area that can help if you don’t live close enough.
Here is a list they gave me
Forever Fit
Megan Piersol
PT in Motion (Columbia)
Bodies in Motion (Reston)
Restore Motion (Rockville)
Logan Cooper (Germantown)
JR Bucklin (Frederick)
Jan Domerholt
Zamir Ahadzada, Bodies in Motion (Alexandria)
Hand in hand PT/OT (Arlington, VA)
Hannah Schoonover, DPT
Morgan Groover at movementX
Carrie Cothran at aura wellness
Thank you so much for this information. I’m so glad you’ve gotten good help from your PT. I’ve long felt that the best help for CCI/AAI is strengthening the neck muscles to provide extra support for the cervical spine, though some people have found help w/ prolotherapy or PICL, those seem more inconsistent in their results & much more expensive than PT which perhaps should be the starting point w/ other treatments following if necessary.
This is just my opinion, & I pass no judgment on those who have tried or prefer other approaches.
. I guess that was very naive on my part. I was hoping to avoid NY since my dad is still traumatized from having taken me there for the invasive traction. Apparently NY on ramps are very short.