I recently had a styloidectomy and c1 shaving on my right side due to a severely compressed jugular vein on my right side. Mind you my left jugular vein is also compressed as well, but I have only done one side so far.
Once the c1 shaving and styloidectomy was completed the surgeon said that he noticed my juglar vein fill with blood and said the surgery was a sucess. However he is just the ENT surgeon and not the Neurologist.
I have a follow up with my Neurologist on Sept 14th which will be over (2) months since my surgery.
I am currently (1) month post op and experiecing daily headache that are pretty debilitating. What is interesting after 2 weeks they seemed to have gotten better, but now they are worse…
Is this a common symptom to have? Has anyone else experienced this? Do you think it’s just a flare up to my incision still healing? Why would I not have headaches after (2) weeks then them come back after 3/4 weeks?
Can anyone share their thoughts, experiences, tips or similarties?
Really hoping they go away since I am only (4) weeks out and this is just part of my healing process and my body getting use to the knew amount of blood flow…
@Atc91 What you’re describing can absolutely be part of the healing process. I did not notice significant improvement until around month four, and I continued making more progress around month six. I had both sides done one day apart, so my situation was a little different.
I have also read many posts where someone improves after the first side, but then symptoms from the untreated side become more noticeable. My understanding is that venous drainage can shift as the body adjusts, including changes in collateral flow, especially when the opposite jugular is also compressed. Four weeks is still very early after this type of surgery.
The moderators will be able to explain the possible flow changes and healing timeline in more detail, and they will respond but based on my experience and what I have read here, improvement is seldom linear. Two steps forward and one back, but it does get better.
Yes, my symptoms return after 2-3 weeks. But, surgeon don’t removal my stylo and digastric muscle , and I see on MRI scans fibrosis. You remove muscle ,or only remove stylo and shave C1? You have CT/MRI image ,scans often and after surgery? Compression of the two IJV and unsuccessful surgery in Russia
Are you only experiencing headaches, or have all the symptoms returned?
@Atc91 I agree with @MGORNEAU’s thoughts. I had increased headaches for a while which I think was a combination of post surgical swelling and muscle tension. Everything got better over time.
As the others have said, it is common for symptoms to improve and then for things to go backwards, and you are still at a very early stage in the healing process…patience is definitely needed with this surgery! I understand how disheartening it is, it can be because the brain is adjusting to the new blood flow, it could be that swelling is still there and so compression has returned, and sometimes after surgery if you’re feeling better it’s easy to try to get back to normal, and to rush into more activity which can set healing back. If you have symptoms still from Lyme then maybe that could be contributing, I don’t know much about that but it sounds like there could be an overlap of symptoms, can Lyme disease flare up again?
There are some massage techniques which can help swelling if there is still some:
@carina has had surgery not that long ago, and was still getting headaches, but I think things are finally improving for her, here’s a link to her discussion:
I am very interested in this post because it sounds so very much like our daughter. Her right jugular was 100% compressed and her left is still 90% compressed. She had significant relief from presyncope and some other symptoms at first. Then headaches settled in with vengeance, and the NP suggested she has a CSF leak. I really thought that’s what it was, too, but we didn’t feel ready to pursue a leak so early in recovery. NP was fine with that for several reasons: her left jugular is still closed which could be causing IIH, therefore putting pressure on the dura so it leaks, it could just be her body adapting to the new blood pressure gradients, she wasn’t strong enough for travel and a workup ect… Now, at six weeks, her headache is slowly improving and the ‘overall, yucky’ feeling is, too! So exciting!!! Until…we remembered that we started giving her Dissolve It All to prevent scar tissue buildup right around the time she started feeling better. Dissolved It All has a natural blood thinner in it. So this could be diagnosic if we stopped the supplement, and her headache returned. So I still cannot be sure what is going on, but your description sounds familiar. Whether it means you need more work done or not, I don’t know…but you’re not alone and it sounds like we aren’t either! We have a follow up jugular ultrasound in august along with an appointment with the surgeon. We are hoping he can help us decide what our next steps should be. I think for our daughter, we need to think of this as a project. It may take time and more professional help before she’s functional. She has hEDS, POTS, MCAS ect… Best wishes to everyone!
I’ve already mentioned this before and attached an MRI scan of the fibrous tissue/scar tissue. Let me repeat it once again. When only the styloid process is removed, the positive effect is only 30-40%. When the styloid process and part of C1 are removed (without resection of the stylohyoid ligament or the digastric muscle), the positive effect is higher, but if the muscles are left, the vein is often compressed by scar tissue/fibrous tissue. I will show you an MRI scan of this. Therefore, it happens that 2-3 weeks after the operation, my symptoms went away by 70%, but then they returned. And now, a year later, when I try not to cough or breathe deeply to avoid irritating the incision area (which becomes painful, inflamed, and enlarged), my symptoms worsen.
You can do a soft tissue MRI of the neck to see if you have fibrous tissue, and you might be lucky and the MRI will capture your C1 and you will see if the vein is compressed or not. A neck MRI does not always capture the area at the C1 level, and radiologists do not want to or know how to scan this area. You can also scan the angle of the craniovertebral junction. This is a whole other issue. In Russia, an MRI scan of the neck (without contrast, no contrast is needed) costs 100-120 dollars, which is not a lot of money, and it can be done at your own expense without insurance. MRI scans are almost harmless.
I’m currently still healing after my second styloid removal + C1 shave, but wanted to drop in just to tell you that I had pretty gnarly headaches reappear about weeks 4-6 that eventually disappeared again. As @Chrickychricky mentioned, I’m pretty sure it was a combo of things between blood flow changes, swelling, and muscle tension. This happened after both my surgeries.
I actually almost came on here after both surgeries during those weeks to ask about these headaches specifically. As I said, they did alleviate both times.
The full healing process appears to be a long-haul trip, but you can probably take some solace that so many of us had similar headaches pop up and then subside. I can’t tell you how many times after both my surgeries where I experienced a backslide in some symptom or another and thought they “failed”, only to have the symptom slowly get better after more time. If I could tell you one phrase about the healing process that is constantly repeated on this forum (and one I didn’t quite believe until I experienced it myself) if that the healing is non-linear. While this can be frustrating, it also makes me feel better on bad days knowing it’s all a part of the process. Hope this gives you comfort. Good luck and hang in there!
@everyone - Thank you all for the very thoughtful responses and taking the time to share your experiences. This has been extremely helpful for me as I work through my recovery. Means a lot as I know we are all in this together! Will keep you all posted and I am staying postive that my headaches will improve over time as I am just over (1) month post op.
They returned. This was not a new symptom as I had them before the surgery and then (2) weeks after the surgery they were gone then at (4) weeks they came back
@Atc91 - I’m very sorry your headaches are back but that is the nature of recovery from the surgery you had. I hope it’s only momentary & they disappear again as your post op swelling recedes & the internal healing takes hold. I’m glad you’re staying positive & are being patient. Positivity goes a long way in helping with healing.
Did Dr. Persky end up doing your surgery? If so, we may add both he & Dr. Arcot to our Doctors List as resources for our members.
Hi @Atc91, are your recent headaches localised over the left side of your head (corresponding to the non-operated side) by any chance? After my right sided decompression I also had some unpleasant headaches, primarily over the left side of my head (my left IJV is also 90%compressed) that started two weeks or so after the surgery. They went away after a month or so.
I’m so glad to know your headaches have gone away, @crumblecookie. Do you plan to have your left IJV decompressed or will that depend on how you’re feeling over the long term?
