Hi, there. I am awaiting insurance approval for surgery for IJV decompression. Mostly, when I come here and read about other people’s experiences they seem to be discouraging. At a time when things feel pretty overwhelming, it would be helpful to hear good news. Does anyone here have positive outcomes to report from their surgery? Anybody have significant symptom relief after one styloidectomy/C1 resection?
Thank you so much.
I’m sorry that you feel others’ experiences seem negative- we find sometimes that if members have good results from surgery, they just want to get on with enjoying their lives and don’t necessarily come back here to update us, whereas if members’ recovery is difficult, or the first surgery doesn’t resolve all their symptoms, then they stay around for support… We’re also seeing quite a few members with complicated medical conditions, and other vascular compressions linked to that so the ES surgery might be just one in a number of surgeries that they need before they see much of an improvement. In the video Dr Costantino has done, it does say that 80-85% of patients improve, and that only 13% need bilateral surgery, although I would say that from our experience on here it seems that more members do need both sides done.
I didn’t have any compression from the C1, but had bilateral IJV compression, and had some quite scary symptoms from that before surgery. I found that most of my symptoms went after my first surgery, and I got my life back! Hopefully other members will chip in with their positive stories!
I am one of those that Jules mentioned! I had bilateral April 28 May 1, so a few days apart. I feel like a new woman. I’m out gardening, hiking, playing with the kids, doing slip and slide etc. Life is sooooo good post op. I had jugular vein compression (60%), vagus nerve compression, and positional carotid artery compression. I was a mess! My health was deteriorating beyond belief - I’m only going up in health now, and fast! I remember feeling discouraged by the posts also and was told the same thing - people that get well move on. People who still need support or people who lovingly make the time to keep supporting are still here. But there are so many successful surgeries. I hope yours is one! Feel free to ask me any questions about it 
What were your symptoms ? Are they similar to mine (see the topic about a failed surgery in Russia) ? Have all the symptoms gone away, or just some of them? What was removed from you, just the stylo process? Or did they also remove C1 and digastric muscles and etc.? Can you show a couple of CT scans before and after the surgery? Can you provide photos of the incisions, including whether they were large or small?
Thank you for chiming in! I’m so happy for you. Did you have a styloidectomy + C1? For me, both IJVs are compressed (80% right = dominant vein, and 50% left). Dr. Nakaji is going to decompress my right side hoping that will be enough. It’s just been so long feeling like this - head pressure, headaches, feeling like I’m behind a thick pane of glass all the time, eye swelling, ringing in my ears - it’s hard to imagine going back to who I was before. But this is the only time in my life I’d had symptoms this long with literally no intervention at all. So, I have to remind myself of that, too. Thanks for your input.
@LisaMaria I’m so pleased for you! Brilliant that you’re getting on with your life an are feeling so good- it’s not a complaint that people don’t come back when they’re better, we want people to make up for all the lost time feeling grim… thank you for popping back to share your story 
Hi, I will try to answer both you and megb here. I only had a styloidectomy. Dr. Aghayev in turkey said he would’ve done a c-1 but wasn’t sure it was necessary. I went with Dr. Osborn in Los Angeles, CA. I’m from the Seattle area and could not find a specialist here. So no c-1. Dr. Nakaji said I would do fine with just a styloidectomy, that I wouldn’t need special treatment for the compression. So megb, you needing extra for decompression is different than what I experienced. I’m still hopeful for you. Filya, re symptoms - I have been meaning to post an update on here regarding resolution of symptoms because my initial symptom that brought about the Eagle’s diagnosis was swallowing problems. Here in Seattle two different doctors ordered swallowing tests. One showed no swallowing problem. The other test showed I had inconsistent muscle coordination from my throat, down through my chest. Even to the point where food would stack before emptying in to my stomach for a fraction of a second. The technician went through my scans with me before the doctor saw them. The doctor never mentioned it and proclaimed that I had no problem. I have ginormous empathy for the path people are on to get help. This was supposedly a really smart really good head and neck surgeon. Had he been my only resource I would not have been helped. Not only did he have no idea what he was talking about through the whole thing, he was degrading trying to make it seem like it was in my head (ha! it was in my head, but you know what I mean ;)). So anyway, I have to include all that because of how discouraging it can be to get help. I want people to know not to trust doctors because they more often than not, DO NOT know what they are talking about. So regarding symptoms resolved: swallowing difficulty/choking; heart palpitations; tachycardia; intermittent vision blurring; pressure in my head for ugh, idk how long, after yelling or laughing hard or getting wound up about something; bowel motility issues (things were soooo slow moving it was scary at times - totally fine now); tinging sound in my head (I didn’t get the whooshing sound some get - but this odd tinging, like metal balls tinging); brain fog; Minears - I now don’t think I had Minears - symptoms gone; when I would turn a certain position to the right, I’d almost black out - I’d fly out of the position and be ok pretty quick, but it was terrifying; insomnia - I would, like you, sleep for a couple/few hours at a time then be wide awake. I now sleep through most nights seven to eight wonderful hours. It’s great.; not being able to hear high pitched sounds that others can hear also seems to have resolved.
My incisions were a little bigger than normal - my right side styloid was about 5 cm, my left styloid was more like 8 or 9 cm. I am not sure I have good incision pix. I will post what I have. The incisions have all but disappeared though at this point, which is nice
My husband is so happy with the results because I am SOOO much better. He will see me bustling about getting this or that done, and just beam with a huge smile and say “Welcome back!”
I’m so happy to read about how well you’re doing!! What a great change for you! Your incision looked incredible at 3 weeks post op & really not bad at 5 days. I love your husband’s encouragement/sense of humor w/ his “Welcome back!” comment.
Thank you for coming back to post about how you’re doing & telling of the positive changes your styloidectomies have made for you. We appreciate success stories very much!
Fantastic, can’t believe how well you’ve healed!
I love this, so good to hear…after my surgery my Mum commented that I’d lost ‘my pinched look’ , I guess from the pain and the worry! 
from your answer, it is not clear (not understandable) who performed the surgery.
LisaMaria said she got her styloids removed from Dr. Osborne in Los Angelos, CA.
That’s right. It was Dr. Osborne. I consulted with several doctors to make sure the styloidectomy would be sufficient. I ended up going with Dr. Osborne for this and am so glad I did. I believe, because he specializes in them (like does 4+ a week for idk how long) that he’s got the technique down to really minimize the impact on his patient’s bodies. He’s designed and had manufactured the tools he uses that are just so perfect for what he does. My recovery was such a breeze. And you can see by the size of my styloids, that mine was a pretty extreme case. I did the first 24 hours with prescription pain meds each time as I was scared of the pain I thought I would feel, but I was able to quickly transition to Tylenol and ibuprofen and a very rare occasional prescription pain reliever if I over did things. I believe that my quick recovery had a lot to do with being in Dr. Osborne’s very skilled hands.
@megb I had bilateral decompression surgeries (3 months apart) with Dr. Nakaji nearly 2 years ago and have been symptom free. Best wishes to you.
Thank you for posting your experiences. I’m just at the beginning of my journey and am struggling. I have an appointment with Dr. Cognetti in Philadelphia on February 10, 2027 for consult. I’m on the wait list but that’s so far away. I’ve been dealing with all your same symptoms for 2+ years and now knowing I probably have to deal with another year has me quite depressed. I miss my old self. Your post gives me hope.
@Taptap123 , I’m sorry that you have to wait that long, have you asked to be put on a cancellation list? If you could go at short notice it’s worked well for quite a few members, they’ve been seen quicker?
Hi, ugh that is a long time…if you can make it Los Angeles, Dr. Osborne dedicates most of his time to Eagles so gets people in quick - like within a couple weeks even possibly! He does virtual appointments quick too, for the initial consult, so you can get a clear path of what needs to be done. I think he would need you to send your dicom file for your head and neck ct ahead of the consult. I had to pay for my travels to LA, but the surgery itself was fully covered because there just aren’t a lot of people specializing in this very necessary procedure. I’d hate for you to have to wait so long. Jules is right though about getting on a cancelation list with Dr. Cognetti. That can possibly get you in sooner. I can’t remember if Dr. Cognetti does a cancelation list or not. But worth asking. It’s a great feeling to be back at life, I want you there too!!!
Wanted to chime and report some positives over here! I’m 7.5 months post-op of my L IJV decompression (12 months post-op of dominant R side) with Dr. Costantino, and I’m doing a good bit better. My daily headache pain average has dropped from a 6-8 to a 3-4, with the occasional bad day here and there. My brain fog has improved significantly, and I can work on things (computer or with hands) for pretty much as long as I’d like, compared to about a 30 min cap that I had pre-surgery.
My POTS/Dysautonomia symptoms have improved, and I still potentially have another issue (May-Thurner) to deal with, so I’m assuming they can continue to get better. GI issues are still present but are less intense, and I don’t have nausea as frequently as well.
My face/neck are noticeably less swelled since surgery and I feel better in my skin overall. Have also started jogging/light running for the first time since 2019, so that’s a big positive. I have resumed resistance training and can handle it about 3-4x/week. My fatigue hasn’t budged a whole ton, but there have been some positives. I know I still have lots of healing and potential improvements to go, but I absolutely would go ahead with surgery if I could do it all over.
I know not everyone will have my level of improvements or even many positives to begin with, but I at least wanted to share something from the other side
@dreamliner - Thank you so much for your update! I’m so happy to hear how well you’re doing. It’s been a bit of a long haul for you with your symptoms being so debilitating initially & not much significant recovery after your first surgery. I’m so glad you’ve made such great strides. Being able to workout & jog again is fantastic! 
I hope you can get a definitive diagnosis as to whether or not you have MTS so you can move forward & get it taken care of if you do.
@LisaMaria Is Dr. Osborne accepting insurance now? When I had my styloidectomies with him in December, it was self-pay at $33,750 per side.
