Hey everyone, I appreciate this community existing given how rare this condition is. It’s been an extremely long journey for me to get to this point. It started about 16 years ago with the room spinning rapidly in the middle of the night then gradual development of ear pressure/ringing as well as fluctuating high frequency hearing loss. Over years this has progressed to visual symptoms like pulsing lights, double vision, floaters, etc as well as headaches subtle dizziness, fatigue, brain fog, so on so forth.
To cut to the chase I have all the imaging necessary. I have bilateral internal jugular vein stenosis. My styloids are pinching my veins shut against the c1 of the spine. I’ve had a great team of doctors finally taking my symptoms seriously after getting told for years it was all in my head, but now I’m a little overwhelmed reading different experiences.
The only step left is scheduling the surgery which will supposedly be within the next month. They plan on doing a neck entry from. Behind my ear down to the neck, apparently the stenosis is at the very base of the skull so they plan to take the entire styloid out and then do a tiny bit of shaving at c1 to create some more space. Here’s where things get bumpy.
First is they want to start with one side. I’ve read on this site this is by far the most commonly approach as a double styloidectomy is pretty risky… That being said I have read a few published studies of successful doubles. I’d like some comments on this if possible!
Next is the hospital stay. I’ve read a few outpatient stories. My doctor’s have told me to expect 6 weeks off from work and 3-5 days in the hospital including a bit of time in the ICU. Is this consistent with everyone else here? My doctor’s are amazing and receptive so I don’t doubt them, but they have been pretty open that they’ve never performed this particular level of a styloidectomy as again it’s at the very base of the skull. I was wondering if it’s worth getting a second opinion at all? Sounds like my veins likely will need stenting after this whole ordeal… It just sucks because I’ll need this surgery, then imaging to check flow, then stenting, then in 3-4 months do it all over again.
Any help would be super appreciated, I’m pretty nervous, but I’m excited at the prospect of getting a new lease on life without the severe head pressure, jaw fatigue, swallowing issues, brain fog, etc.
Well many docs will not do both sides at once. Some here can chime in on the doubles but if I recall most doubles seem to be more common in intra-oral surgeries and often involve removal of tonsils. The surgical approach is common in external and what I had. My doc makes you wait at least 3 months to do other side. I’m 4 months out and waiting a few more months for the other side. They did my most painful side first and I had some jaw/ear pain problems flair after surgery. I held off on other side because I could deal with pain on both sides at once and wanted to let this surgery side calm down before going at it again.
I could see the value if both sides are pinching jugulars why you may want to consider both but that might depend on severity of one side over another? You got alot going on and more complex and they are probably being cautious.
This procedure is usually done outpatient and some overnight. You are having more done w stents,etc so that may warrant more time in hospital.
I would definately get 2nd opinion given their lack of experience in doing the styloidectomony to skull. Ask how many they have done as well. What type of doc doing surgery? Do you have a team? re: cardiologist for stent? Maybe we can help walk you thru it.
My doc told me 2 weeks off work, I asked fro a moth which he ok’d. I ended up taking a leave tacked on because of COVID and glad I did. If you have short term or long term disability, take as much time as you can get!
Welcome to our forum! I’m so glad you’ve found good support & information here. Snapple2020 gave you some great information. I will add that our moderator Jules also had bilateral jugular compression & had two separate surgeries w/ the possibility of stenting but she didn’t end up needing the stents. As far as stenting goes, it can take some time for a compressed vein or artery to reopen on its own. Stenting itself can present problems down the road so it’s better if it doesn’t need to be done & is why blood flow reassessment after waiting a bit post styloidectomy is important.
Based on what you said about your doctors, it sounds like they have done some styloidectomies but none where they removed the styloid to the skull base & shaved the C1 transverse process. I’m curious how much styloid &/or stylohyoid ligament they remove in an uncomplicated case. As you’ve read on here, the best results w/ the lowest risk of styloid regrowth are obtained when the styloid is removed at the skull base & the stylohyoid ligament is removed as well if it has any evidence of calcification on it. If you want a second opinion, Dr. Annino is in your state & has good reviews on our forum.
I begged for my styloids to both be removed at once as my more painful side wasn’t the side my doctor chose to do first. He was insistent that he would only do 1 at a time w/ 6 months in between surgeries. I ended up going 9 months between because I had a cycling accident w/ a head injury 1 week prior to my second surgery date. In retrospect, I agree that my doctor was right about doing 1 side at a time. I had tremendous post op throat swelling & might have needed a breathing tube had he done both sides at once.
I don’t work but if I did, I could have gone back to work, probably part time, after 2 weeks of recovery & more full time by 3 weeks post op. My physical energy took 2 months to return & my nerve recovery took 6-12 months. I’m actually still seeing improvement in some “left overs” that have been irritating but not debilitating & I’m almost 6 years out from my first surgery.
Thanks so much for the replies. My reasoning for wanting the double is that it would suck but it would be done and over with quick. I’d be curious to hear from others who had some c1 done also curious to read those jugular symptoms.
As for the stenting it would be my neuroradiologist who really cracked this case open for me after nearly 2 decades of doctors dismissing me. The stenting would only be done if necessary. In reading the literature there are a few cases of the veins opening up almost immediately post op, but my doctor’s are skeptical given the length with which I’ve had this. I did read about that doctor popular on here. I’m just concerned about why this is. 3-5 night stay when most I’ve read are like you said overnight or even outpatient.
I had bilateral jugular compression, although only had vascular symptoms for a a year before the 1st surgery- my doctor mentioned the possibility of stenting afterwards if they didn’t re-open, but was hesitant about this being a good idea as he said that the stents can cause pain, & can never be removed as the tissues grow around them. Luckily after the 1st surgery the vascular symptoms improved alot, & went almost completely after the 2nd. My doctor wouldn’t consider doing both surgeries at once, his wording was that it would be too much. We have seen a few members who have had successful bilateral surgeries, but also some who have never come back on afterwards to let us know how it went.
I stayed in overnight with a drain in, which helped lots with swelling. I am impressed that your doctors are honest about the recovery time- many doctors gloss over this as being a minor surgery & you’ll be back to work in a week! (to be fair, we have had a few members who’ve had it easy & have been back to work quickly, but not often!) It’s hard to know id they’re being ultra cautious, or whether it’s inexperience…it would be good to get the C1 process shaved at the same time, so that maybe why they think it’ll be a longer recovery?
The jugular compression symptoms I had were head & ear pressure, constant off-balance feeling, feeling like I was drunk, dizzy spells, pulsatile tinnitus, & some very weird scary feelings in my head which are hard to explain! They improved really quickly, thankfully, but sometimes it can take a little while.
Thankyou so much! Did you have any ringing? Live had the pulsatile wooshing for about 15 years. I think I know some of the weird head feelings you describe. I’ve gotten these huge almost shocks deep in my head that have shook my to the core. I also have that drunk type feeling. It gets a lot worse if I talk for a long time. Did you have any fatigue? Any visual symptoms?
Edit- sorry did they touch your c1 at all?
Edit edit- I’m in Boston btw. Are you anywhere near there at all? Just curious about your doctor.
I just left my pre-surgery visit for removal of the left styloid and any calcification. He said to expect a one night stay in the hospital and if a drain is needed he would expect it to be in for one or possibly two days. But as with all surgeries, it would be decided once he sees how things go.
You are definitely in the right place for getting answers, support and feedback! This site has been SO helpful to me.
Here’s to successful outcomes!
I get some ringing in my ears still after surgery, but less than it was. I did get brain fog & tiredness too. I didn’t get shocks in my head but more like my brain was being rolled up! You can get visual symptoms if the optic nerve is affected by hig intracranial pressure, luckily I didn’t have that.
I’m UK, sorry, don’t think seeing my doctor would be possible! My C1 process was fine, thankfully.
Oh no worries thanks so much for the info! I had heard a lot about I think dr. Addison at the brigham in Boston wasn’t sure if maybe you were one of his patients. I’m assuming my stay is so long because it involves c1 as well. So your brain fog/fatigue has improved? Would you say overall you feel like you’ve found the issue and improved your quality of life?
My quality of life has improved massively since surgery, I’ve got it back. I was feeling really ill & starting to get quite scared before, loads better!
I, like many on here, am having separate surgeries. Yes that means two recovery periods, but it also means less chance of complications from length of anesthesia, positioning, or other things. With a double surgery doctor’s tend to go intraoral, which makes complete removal a bit more difficult.
As far as the hospital stay, it really depends on the doctor. I stayed overnight, no drain, and was out by noon the day following my surgery. I was very dizzy the evening/night following the surgery, but I’m not sure if this is because of my reaction to the anesthesia or the surgery itself.
Recovery for me has been easier than I expected. I read a lot on here both before and after scheduling my surgery so I would know what to expect. After my left side surgery I have also found myself resting towards the right side. There is quite a bit of nerve involvement and I go between numbness, mild pain and felling completely normal.
My doctor said average time out of work was 2-4 weeks and I opted to go long on that estimate. While I was in the hospital he said total recovery would be about 6-8 weeks, because of this I am not resuming training until October.
From your writing it sounds as if you have a severe case. I feel like second opinions are a personal choice, as they involve considerations like time and energy. That said, I got a second opinion and ended up with my original doctor. You have to choose what you feel most comfortable with.
Anytime that you can get a second opinion, it can help. However, finding someone who does skull base surgery who can give you an equal level of attention is what you want if you can find someone. The time frame for recovery from the skull base to hyoid bone removal is appropriate. Depending on nerve involvement, it could be a bit longer or a little shorter. Comolete healing actually takes months to a year, but getting back to life is about 6 -8 weeks or a bit less.
Concurrent surgeries is way too risky and I dare say not recommended, but that would be between you and your doctor. I cannot imagine having had both my external surgeries together
Both my external surgeries were from skull base to hyoid bone completely.They were done beginning 5 years after one intraoral that was never completely successful and caused me much more pain overtime.
Sunday will be my 2 year anniversary of my first external surgery and close to 18 months since my second exterenal and I have most of my life back. My worst side involved damage to my accessory nerve and sternocleidomastoid muscle and digastric muscle in my jaw. Had those muscles and the nerves not been affected, I would be still feeling like a 40 year old.
However, I am very close to getting there and here to say that surgery has given me great hope.
This forum will help to make future diagnoses of Eagles, more quickly ascertained and provide quicker relief and less complications to others.
Eagles is not that rare, it is just now being located and imaged properly thanks to 3D technology and we are benefitting. Forums like this one and others are changing the minds of doctors and putting so called rare syndromes and diseases on the map.
I wish wonderful healing and your doctors skillful hands.
Hi! I am sorry to hear of your long wrestling match with all of this but so grateful to hear you have landed in good hands. Your questions about doing both sides at the same time given your vascular and C1 complications is prudent given my experience. Just yesterday, at my pre-op appt, I had a long conversation with my surgeon regarding the implications of tampering with C1 (i have compression on both sides as well) He voiced concern about the potential of influencing the stability of the cranio-vertebral joints there, especially if only done on one side and if there is any question of an underlying connective tissue disorder, ie: Ehlers Danlos Syndrome.
As far as the IJV approach I recently had a balloon venoplasty on the first styloidectomy side and it was immensely helpful. This was done by a NIR and my surgeon was adamant that I have the balloon vs. a stent. I am scheduled in 2 weeks for the second styloidectomy, IJV balloon venoplasty and skull base CSF leak repair.
My history is very complicated and the working theory (like it or not we are all moving in a working theory ) is if the vascular flow is normalized by removing the styloid and balloon venoplasty this will be enough without tampering with the C1. My surgeon was also concerned about the increasing risk that comes with being under anesthesia for >3 hours.
If your team does plan on doing both sides, venoplasty of some kind and C1 it would warrant a longer stay at the hospital and the recovery may be longer as well.
You are asking all of the right questions. I would add to that list the option of intraoperative balloon vs. stent and potential of CCI with only addressing C1 on one side given the extensive fascia and ligamentous dissection that is inherent with the styloidectomy.
Well said, anharris. Thank you for this thoughtful & informative post.
Your doctor provided you w/ some of the most accurate recovery information I’ve seen. So many doctors grossly underestimate recovery time for ES surgery.
As always, thank you for sharing your experience & knowledge, JustBreathe! The information re: stenting vs. balloon venoplasty you provided in this post actually gave me good advice to share w/ another member of our forum.
I appreciate all the feedback. Unfortunately my neuroradiologist is pretty confident ballooning won’t work as given this condition and the length I’ve had it, there likely fibrosis. You can’t stent for eagles induced stenosis given the extrinsic compression.
That is correct in that a stent or ballon will fail if there is extrinsic compression (styloid or C1, or other). My stenosis/fibrosis (from C1-C4) was long-standing due to the bone and the balloon on the styloidectomy side from last August was very successful (nothing done to the C1 at the time of the styloidectomy). This is the supporting evidence to have the balloon vs. stent after this next styloidectomy on the remaining side.
Could also just be differing of opinion, there is no research whatsoever on the success or otherwise for balloon venoplasty of the IJV.
I am interested in what you end up deciding, lmk if you think of it!
) is if the vascular flow is normalized by removing the styloid and balloon venoplasty this will be enough without tampering with the C1. My surgeon was also concerned about the increasing risk that comes with being under anesthesia for >3 hours.
