I just had surgery today! I have the vascular form of Eagles involving the jugular vein on the right side. The surgery was performed by one of the very best nuerovascular surgeons in the country. He recognizes that many people are opting for the intra oral approach. He feels the external is the one he would recommend. His reasoning is that he feels more comfortable being able to visualize the sensitive/dangerous areas. With the intra oral, you can see anything BUT those areas so the doctor is basically operating blindly. I just thought I would share his insight. I recognize that many of you have had a very successful intra oral surgery.
Hi All!
I’m sure you’re all wanting to know the details of what I have experience so far… (Pls excuse any typos as I’m a bit drugged up as I type this). They are keeping me here until late tomorrow. Great day for 18" of snow in Denver!
The surgery was anticipated to take about 2 hours but ended up closer to 4. It wasn’t explained to me as to why. I woke up with a very sore, dry throat and some pain in my neck. There’s some significant swelling both in my neck as well as my lower face. At this time the right side of my face is rather numb. I’m currently having some issues with my ability to move my lower lip. I’m hoping this is just temporary. They will be doing a follow up cat scan tomorrow to see what things look like in there now. This seems to be the first time this surgery has been performed by both this doctor as well as at this hospital. The entire staff was extremely interested in my case. They even had some doctors observing. My case is made even more unique by the fact that my several of the veins from my brain on the left side are missing…including my jugular vein. It was like the perfect storm. This is what made my surgery a priority for my health.
My journey to this point has been like many of yours. Many doctors, several calling me crazy. Even after the amazing Doctor (a neurosurgeon) suspected Eagle Syndrome involving my jugular vein, at least 4 other “specialists” contradicted his diagnosis. Unfortunately they were all wrong as this doctor said the vein compression was significant. The left side is very long as well so if I continue to have the other classic symptoms, he will do the other side as well. He didn’t want to do both at the same time due to the small risk of damaging nerves.
My brain is getting fuzzy now but please feel free to ask me any questions you may have. I’ll post a pic tomorrow.
Susan
Hey Susan! Great news on your surgery and I'm impressed that you can post so soon. The swelling, numbness, and problems with moving the lower lip will go away over time.
Congratulations on finding a good doctor to help you. It's such a relief to find someone who believes you and can help you. Your case sounds very interesting. I hope you can tell us more about it after you get a chance to recover.
Really good news; hope that you heal well. Make sure you take it easy- that's the most important thing, don't rush to do stuff. The side of my head was completely numb all over my ear, and that gradually eased off over a couple of weeks, so hope that yours goes quickly too, the doctor probably had to move nerves out the way. I thing the external approach is better too!
Let us know how you're getting on, and thinking of you!
Hi Susan! I, too, am near Denver and my doctor who diagnosed me with Eagle's has found one surgeon so far in Colorado who has done the surgery before, it is Dr. Chowdury, an ENT in Denver. I was just wondering who just did your surgery, as this ENT, who I do have an appt with next week, is out of network with my insurance (United Healthcare), but obviously with not many options for surgeons and just wanting the surgery done as soon as possible, I plan on going with him unless maybe I can schedule with your doctor. Glad your surgery has gone well so far and I hope you recover quickly! Thanks in advance for the info!
Hi Diane! My doctor is a neurovascular surgeon, Dr Robert Breeze. He’s at University Hospital by Fitzsimmons. He was the right fit for my case as it involved my jugular vein. He did say he would also do the other side if this surgery doesn’t improve my other symptoms. I’m not positive whether he would ordinarily perform the surgery if it wasn’t the vascular version. It can’t hurt to call and he’s really an awesome Doctor!
It was in network for my Anthem insurance.
I’ll post a better pic of the incision site. As soon as I’m home I’ll add his phone number to this thread. One final note…you may need for your doctor to send him your records first so he can evaluate them. It took me a bit to get in to see him for my consult.
Sussn
Update: I have an appointment on Monday 2/8 to have my stitches removed. He was very considerate about scaring and said that stitching rather than glue would make for a nicer scar. I plan to ask him if he’s willing to do additional surgeries for Eagles or if he will limit it to those involving the vascular system. I’ll let everyone know if you can add him as a Denver surgeon.
This surgery has been much tougher than I had anticipated. I’m sure partly because I’m allergic to all narcotics so I’m not getting any relief from pain meds. I still have too much swelling to know the outcome but I’m optimistic. He said my styloid was 4.5cm and he took off more than half but not the whole thing. I’m still very numb throughout my face, neck and upper body but I’ve been reassured several times that the nerves will recover.
I took a picture today of the incision but I’m reluctant to post it unless it’s requested. It may freak people out. I’m sure it will look better in a few weeks.
Thank you all for the kind words the other day. I wouldn’t wish this condition on anyone, but I’m glad we have a support group to bring us all together.
Glad you've found the group supportive- it was a lifesaver for me with finding a doctor! Hope that the numbness goes soon, and you feel more comfortable with the stitches out.
@Susan1 Susan…I don’t know if you will get this post or not, however I hope so. Can you tell me name of surgeon Denver and where your surgery was performed. I have a ct-scan showing very elongated and ossified stylohoids and my symptoms seem to match the ES Vascular altho my ENT is not trying to pursue the at all. They still have not found a doc in SLC area to do my surgery, so expanding to Denver area. Not sure if I’ll hear back, so not going to write a lot now. Hope you’re there!
Hi @Diane …can you tell me if you have had surgery with Dr Chowdury, where he is located and what his first name is??? In a desperate search for info and docs to do my surgery thanks much!
Hi, yes I did get your message! My surgery was performed by Dr Robert Breeze at the University of Colorado. He is a Neurovascular Surgeon. He’s a very well known doctor in his field and very well respected however I was his first Eagle patient. With that said, I did end up with nerve damage/issues as a result of my surgery. There was little support or understanding afterwards which makes me hesitate to recommend him as a first choice.
Hi Gina45,
If you’re willing to adventure to sunny California, Dr. Samji is an awesome surgeon & has done more ES surgeries than anyone in the world. He’s good about follow-up & has a great bedside manner. He’s located in the Silicon Valley area (San Francisco Bay area). It’s like having cake & getting to eat it too!
Sadly, nerve damage is a potential hazard of surgeries in the neck/throat areas. Dr. Samji does monitor the nerves w/ some type of nerve monitor during surgery to help prevent permanent problems.
The “little support and understanding” is one of the things that worries me about having surgery done a long distance away.
What scans were done to determine you had vascular ES? I’ve only had ct-scan and cone beams. Wouldn’t this be a determining factor with a surgeon? Can classic ES surgeon do vascular surgery? I hope you are doing well now! Thanks for all info.
Thanks Isaiah_40_31 for your info. HA HA sunny northern CA hasn’t been too sunny with all the constant rain they’ve had. I have a good friend in Martinez, but not sure I want to turn her into a nurse maid for who knows how long. Do you know if Dr Samji can do vascular ES? I do like the idea of him monitoring the nerves, as I know I already have nerve problems/damage in that area. I feel like these darn things are pushing up into my head and down to my throat. Gotta get this done soon!!!
I actually live in San Jose area not far from Dr. Samji’s ofc. It has been sunny and beautiful for about a month now! I think the rain is in our past. But how we enjoyed it after 4 dry years!!
Your friend would only need to play nursemaid for a week as Dr. Samji requires you stay for a post op appointment. He asks you to come the Friday before the surgery for a pre-op appt. & generally does his ES surgeries on Mondays. If you’re here from out of town, your follow-up appt is the following Friday so you can head home to heal there. Dr. Samji does all types of ES surgeries. He recently removed both of Seamom’s styloids (2 different surgeries, 3 months apart), & she had vascular compression on both sides. She is currently mostly symptom free now. Look up her posts for more info.
Yes Isaiah’s post is accurate. MY right styloid had the jugular vein wrapped vertically around it. i’m doing well. I would recommend Dr. Samji. He treats all ES [vascular and classic] as the same. He has had patients fly in from other countries for ES surgery - so he has a plan to support distant patients as Isaiah said.
thanks much!