Hi all - wondering if there are any people still on the forum who had success with their surgery, regardless of which approach, I would really love to hear some positive vibes…!
I had bilateral Eagles with all the symptoms you hear about. It took over 5 years to finally get a diagnosis. Surgery on the right side was done on 4/19/2019 externally. The improvement is amazing! I still have to have the left side done. No more ear pain on the right side, no more choking, no more something in my throat feeling, no more painful yawns, no more pounding heartbeat in my right ear. That one was 6cm long. The left side is 6.7 cm.
I still have occipital neuralgia on my left side and my left arm goes completely numb and very painful. I’ll be having the left side done in August or September. I will only do external. Less chance of infection and less chance of bleed
Hi julia -
I had external surgeries in 11/2014 & 8/2015. I’m 90-95% back to perfect. I have no regrets & am totally back to doing all my previous activities. I also advocate external surgery based on my experience. There are people on here who had successful intraoral surgery - Hadassa is one person for sure. You can search for her posts. She’ll likely reply to this post of yours as well.
Hi thank you so much for taking the time to reply to me. Feeling the need for inspiration from others! Also feeling quite alone at the same time, as I’m sure many people do, with having to spend so long seeking diagnosis. Really glad your surgery worked, 90-95% is great!
Thank you so much for replying, and congratulations on a successful surgery. I’m hearing a lot of support for external surgery so I’m going to explore both options. I totally get why that would be a better option, though at the moment I don’t know how long my styloid is, or if it is just slightly odd shaped. One things for sure it’s definitely there along with all the symptoms. Hopefully you will find your second surgery to be just as effective!
Hi Julia! I had bilateral calcified, both were removed at same time intraoral. Surgery was done December 4th and I am doing great. 99% symptoms gone. Had another ct this past week and no regrowth. Feeling better than I have in 9 years (how long it took for a diagnosis.) My symptoms were like everyone else plus mine were extremely long. One went down to my carotid artery. Most of my symptoms were gone when I woke up from surgery. The rest over the past few months. My left eye sight is actually better now than it was 10 years ago. Just had eye check up this week as I had almost lost almost all eyesight before surgery in left eye. Ear pain gone. Lymph node swelling gone. Sore throat gone. Choking gone. Burning tongue gone. My surgeon cut them all the way down to the original ligament on both sides. Multiple incisions in my mouth and throat. All totally healed in this last month. I thank God everyday for another chance at living my life.
Hello. God bless you, that is so good to read. Right now I would happily settle for 90%! Interesting that you had good results from intraoral. I may be forced down that route because my tonsil fossa has effectively split (stretched) and a bit of a repair job may be in order! I guess I need to secure a CT scan first and then decide which route to go down. It’s wonderful to hear positive stories and people feeling like they get a second chance. X
Hi Julia -
I had relief the second I woke up from the first surgery. My second surgery healing is dragging its heals but I’m being a good girl and being optimistic that I’ll feel whole again very very soon. Alllllllllllll worth it.
Keep letting us know how we can help you mentally and emotionally!
Bless you, thank you for sharing. My symptoms just get stranger by the day. Im onto a liquid diet now, and I have very full tender neck, with weird swelling of lymph node on my ES side, which is worrying and annoying because I love to sleep on that side on top of a hot water bottle! Just hearing your success stories and being able to ask advice is so incredibly valuable, emotionally and practically x
With respect to your liquid diet - I was able to make it more enjoyable for myself by blending anything that my family had for dinner. Some days I added nuts to my smoothies. Beef stroganoff never tasted better. You need to keep up our strength so that when you have surgery your body has all the nutrients it needs to heal. If your already doing this, please forgive the unsolicited advise:)
Hi julia -
Just want to put in a note that the surgeon who did the intraoral surgery for jwise219 “went the extra mile” by making more than one incision in her throat on each side so that the styloid could be removed to the skull base & the stylohyoid ligament could also be removed. This is not what we typically see as far as intraoral surgeries go. Most often, one incision is made for each styloid & the styloid is shortened. Sometimes the cut tip of the styloid isn’t even smoothed off. Nothing is done to the ligament as it can’t be accessed by the styloid incision. If you opt for intraoral surgery, make sure your surgeon isn’t just going to just shorten the styloid. Though a few people have had good outcomes w/ that type of surgery, it seems there are more people having to have a re-do surgery after the first one if it was intraoral & the styloid was just shortened.
If your tonsil area needs repair, it could be done during an external ES surgery as well.
This is food for thought & to help you further understand the difference between the surgical techniques.
Good advice thank you!
Thank you that is really helpful and will help with questions for the surgeons
I did the same thing! Had my first ES surgery just before Thanksgiving in 2014, & my husband kindly put the entire meal (w/o pie ) in the blender w/ some almond milk. TA DA! A tasty TG shake!! It looked terrible but tasted fantastic!!
I had external surgery on one side just about 2 months ago now and had immediate relief from the vascular symptoms that were coming from that side. I might need to eventually have the other side done and, thus, am not entirely symptom free, but it has been a huge relief to no longer feel like I am suffocating. Be well Julia
Congratulations on your surgery that’s great news!
Do you mind me asking what vascular symptoms you had?
Hoping the recovery is quick for you
My vascular symptoms were primarily a suffocating feeling whenever I was not completely straight in posture (chin parallel to ground) and facing directly forward. I also had symptoms in multiple cranial nerves.
Same here, only it comes and goes, one minute it’s the bone in the mouth that is sore and then suddenly I have choking feeling and pain in the chest and front of neck, it isn’t nerve pain because all that is being masked by amitriptyline. It’s so scary and I feel like I’m never going to get help. I hate this condition so much.
I hope that you get a correct diagnosis very soon. I will share that I was extremely impatient pre-surgery. Then as soon as I had the procedure I understood immediately why the doctors had wanted to be careful to rule out all other possible and more common causes before performing what is a major surgery for an extremely rare condition.
Hi there, totally understand and appreciate it’s a major op. Unfortunately symptoms get worse every day that goes by and so far I haven’t even had a CT scan, and this thing is digging into my throat, it feels like I’m dying but there’s no help to be had. My instinct says go to ER but I know they will send me away…