I had severe bilateral compression and had surgery on my right side (which was my symptomatic side) over 4 weeks ago. My symptoms are still worse than pre-surgery, especially the head pain/pressure, brain fog, cognitive dysfunction, and fatigue. Is it possible that surgery has made me worse, or am I just being impatient? I know that recovery can be a long process, and my incision and lymph nodes still seem very swollen and angry.
I just wanted to post here to see if anyone has been through something similar and what your next steps were. Should I be looking into other possible causes? Should I still consider getting the other side done? I’ve been having a ton of nerve pain in my neck since surgery and I am worried about causing that on the left side too since my left side is currently asymptomatic (though it’s just as compressed as my right side was). Has anyone had a headache that was primarily on one side and had it relieved from having the OPPOSITE side decompressed?
I really thought my symptoms aligned closely with jugular vein compression and I thought we did a good job of ruling out other possible causes, but I’m feeling super discouraged. I just want some level of independence back. I can’t drive or take care of myself at all and I just feel so sick and out of it 24/7.
I’m so sorry that you’re feeling worse- it is still quite early and if you’ve noticed that your incision & lymph nodes are still swollen then there could well be some internal swelling compressing your IJV. I would say though if your incision is looking angry, then that might be a sign of an infection, usually that would be healing up nicely by now, so I would think about seeing your GP / PCP , or get back in touch with Dr Costantino? Maybe you need antibiotics, if there is an infection then that could well be making you feel worse… Some members have had steroids after surgery, that might be worth a try if everything is inflamed too.
We’ve had some members who have had cross-over symptoms, and with IJV compression if there’s compression both sides then often both need doing- from our experience on here anyway, although some doctors don’t seem to think that…
So try not to panic, not easy especially if you’re feeling worse, I would speak to your GP &/ or Dr Costantino in case there’s an infection. You could also try nerve pain meds if you haven’t already tried those? It’s too early to be thinking about any testing or the other side done.
Sending you a hug and prayers for improvements
Thank you for the reassurance! I actually did have a minor wound infection in the top of my incision (the top of it is still open/scabbed) according to the urgent care doctor and I took a course of antibiotics. That was at 2 weeks out. I showed Dr C at the time and he said it likely wasn’t infected but it was good that I got the antibiotics just in case. But now I’m 4 weeks out and it’s still open and swelling though it’s not seeping anymore. I will bring this up to him at my next followup.
I also did a course of steroids right after surgery but it may be time for another one. I do want to ask about nerve pain meds because I am also developing first bite syndrome. I think I just have to be patient and keep getting lots of rest.
@carina - I’m sorry to learn your recovery isn’t progressing as you’d hoped. @Jules has given you very good information, & I hope that with more time your recovery will progress more positively.
Hi Corina, I think Jules is right about the possibility of there still being an infection, I’m not quite four weeks and my incisions are quiet and even disappearing at this point. It’s possible the antibiotics weren’t the right ones. When something keeps open, they generally attribute that to the body expelling something like bacteria that doesn’t belong. I don’t think you should feel so bad at this point though, again Jules, she mentioned the internal swelling - until that calms down you may not have the full decompression yet. I remember someone posting before and after pix on here and his compression seemed to be temporarily worse after the surgery from the swelling. I would imagine a steroid run would do a number on that which would probably be a relief but I wonder if it might slow the actual healing process. I’ve heard different ideas about that. But I’m sure it would offer a much needed relief from the inflammation. I’m tempted myself as things are stiff while the insides heal!
Have you had follow up imaging to see if the decompression happened as expected? I personally haven’t had my follow up ct yet as I’m assuming this would be the case, that I’m still swollen inside and still compressed, so I’m trying to give it time to settle down to what my new norm would be. I have to say though, for me, I haven’t had the brain fog since my surgery. My jugular on prior ct was 60% compressed so whatever is going on is at least for me an improvement to that.
I tried hot baths lately, that really seemed to soothe my lymphs, have you tried that? That may feel awful on the head pressure though, hmmm, idk!!! Remember to keep walking, I just pace my house when I can’t get out - that’s super important to all of that, getting things moving and draining. I hope you feel better soon it’s no good being house bound and miserable. I’m sorry
Im about 5 weeks about from decompression however mine was a little different. I already had styloidectomy in 2020 but no IJV compression addressed. Even back at 1st surgery in 2020 I had some first bite on my worst side but that calmed down quickly in general, I have TMJ issues and already get botox in jaw and head. That side was just dang aggravated before surgery and after. I had wished I had calmed it down beforehand. This time, I started loading up on Cromolyn for MCAS before surgery in hopes of calming inflammation (I have hEDS). I had a slot of work done on that sid including stripping the IJV down to collarbone due to banding and adhesive like lymph “garbage”, C1 shave and more styloid clipped off. The decompression on the right was minor and lower in the neck. My left jaw is giving me fits, but more so down the neck at the base. It may be some form of first bite but its there all the time. I know I have severe osteoarthritis in my left jaw. I did round of steroids after surgery too. My massage person said he thinks its nerve inflammation and he is seeing some swelling still in front of throat which is low. . I seem to be clenching alot and I dont think it’s helping. I wonder if you are having healing issues? Cant remember if you have EDS? Those two things seem to go hand in hand. My incisions are well healed and hardly noticeable at all. It doesnt seem right for this incision to be open still. But everyone is different?
I found my massage helped me alot and wish I could get in more often as I wanted and needed it weeks ago, now i am in a pain flair. Did some lymphatic drainage and cranial sacral by the masseuse. It was heaven. Ive leaned towards hot packs on the shoulders to try and relax the muscles. I think so much work done that being upright, the muscles are struggled to adjust and not helping my jaw.
My head pressure was bad at first and slowly diminished. It does kick up sometimes though and I have to lay down. I tend to push myself too much and pay the price for not resting more. Hope that helps.
@carina - I had one more thought regarding your incision - we’ve had a few members who had a reaction to the suture material used to close the incision & that kept their incision(s) inflamed & miserable for an extended period. One even had an internal suture that worked its way out 2 years after her surgery. YUCK!! That might be another angle to check if your surgeon did internal & external sutures.
As @Snapple mentioned, you’re far enough into recovery that using heat on your incision(s) & other sore areas could be helpful in stimulating circulation to help push recovery forward.
Hi Carina, I too have had surgery on only one side (having the other side done tomorrow) and have had no improvement in symptoms +some new symptoms have arrived. I also had surgery on my more symptomatic side first. But for me, interestingly enough the more symptomatic side was the one with less severe compression per all of the imaging. I also have some facial puffiness on the side that has been fixed and not on the side that hasn’t been fixed yet and that has always had the worst compression.
My current hypothesis is that the blood from the compressed side is traveling over to the fixed side but the drainage on the fixed side is still insufficient to handle all of the volume that would normally be going down both sides. The severely compressed side has very limited flow so the symptoms are actually less on the bad side, while I have backup/pressure-related symptoms on the fixed side.
I’m hopeful that getting the other side fixed will alleviate symptoms on both sides. Will know more soon, but I don’t think it’s unusual to have continued symptoms until both sides are fixed.
I saw your name on my calendar for surgery tomorrow, @RickAZ. I will also be praying the outcome will provide you with substantial relief from your symptoms & agree that more often than not, both sides need to be decompressed, for the reasons you suggested, for the best overall outcome.
Thanks for the response! I had imaging the day after surgery and everything looked ok, but I haven’t had my healed follow up yet. I’ll try a hot bath! I love them, but I always end up staying in for too long and triggering my POTS, so I haven’t tried one in a while. I’ll have to be sure to limit my time lol
Yes I do have hEDS, I’ll have to find someone in my area who is familiar with lymphatic drainage massage in the neck. I am seeing an osteopath soon, maybe they can help or point me in the right direction. I’m sure inflammation from hEDS/MCAS is part of my issue, unfortunately I haven’t found much that helps with that other than CoQ10. I’ve tried all of the prescribed meds like cromolyn and they don’t seem to do much other than eliminate my hives.
Thank you for all of the info! It does help to know that about your head pressure - I’m hoping mine follows a similar pattern and slowly diminishes!
Sorry to hear that you have yet to see improvement:( I hope your surgery went great, update us when you can! I think your hypothesis makes sense. My asymptomatic side was/is slightly more compressed too, so maybe we are in the same boat.
Surgery went well, hard to tell anything about symptoms yet but I feel no worse than pre surgery already. Maybe a bit better (I had a headache going in but the pain meds would have addressed that so I can’t tell if it being gone means anything.) PT may have reduced intensity but it’s usually better in afternoon than morning, so hard to tell. But Dr Nakaji said everything opened up well and that the primary issue causing the compression was actually almost entirely soft tissue. Styloid ligament was fine, opened the sheath, primary culprit was actually a muscle that was laying right across the sheath. Shaved a bit off the C1 but that’s just added protection I think.
Thank you so much for your very-early-in-recovery update, @RickAZ! I’m so glad you don’t fee any worse & actually have no surgery at the moment. I hope that’s the beginning of a permanent trend for you. You’ve had this surgery before, but even so, the second recovery can take a different & more positive path (sometimes quicker healing) than the first one. I hope that’s the case for you.
REMEMBER - Take life in baby steps as you heal. Jumping back into activities too soon can cause symptoms recovery to backslide - NO FUN!
I’ll look forward to reading your updates as your recovery progresses & will be praying for a most excellent outcome.
Thank you Wendy, I can’t express how helpful you, Jules, and the forum have been through this process. You’re doing a great thing. I’ll do my best to pay it forward and will keep doing updates as much as can be helpful.
Too bad about the Cromolyn. Ive heard you need to be on it for awhile. I guess if it helped with the HIVES, thats a good thing. Im start to look more into protocols of supplements and meds to get a better handle on the MCAS. Bendy Bodies put out something yesterday talking about MCAS. I know there are a few docs you can get to manage it but they are cash pay and dang pricy. Its another rabbit hole I am venturing into and coming off the back burner. I once had a very experienced osteopath that did cranial sacral work and it was pretty amazing. Have you trend low dose naltrexone yet? My daughter did and she could handle the side effects. She is pretty sensitive to most meds. I haven’t gotten around to trying it yet.
I went today to a Korean Womans Spa as my daughter bought me a facial for my b-day. Ive never been to one like this before. They had mud baths, hot pools and cold plunge as well as infrared saunas. And a tea room. It was pretty amazing. I had a massage too and she was very gentle around my neck.It felt sooo good. They have a Korean body scrub to help exfoliate and stimulate lymphatics. Im going back for that one next week! Ive heard you can go to PT places and they do specialized lymphatic drainage and insurance covers it?? My daughter cannot take baths with her POTS so you are lucky to handle just little. Hope you all feel better soon.
it’s no good being house bound and miserable. I’m sorry 
