Hi all! I am so glad to have found this forum! Thank you all for the respectful and kind exchange! I don’t know exactly what I want to achieve with this message. Maybe it is just encouragement…
I’m writing to you because I am very confused. I am diagnosed with CCI/AAI and Eagle Syndrome. I was first diagnosed with CCI 20 years ago but had no symptoms at all after an intense period of physical therapy.
All of this started new in 2020, after I hurt myself lifting too heavy bags and something shifted in my spine. The next day my left arm was swollen and when I changed clothes and my shirt got stuck in my ponytail, my head inclined very much and my blood pressure suddenly reached 220/??. After that incident all my symptoms appeared gradually. I was diagnosed with CCI AAI again (upright MRI) and a disc prolapse in C5/C6. I started manual therapy and Prolotherapy and felt much better until 2023. In Spring 2023 I went for a walk and walked uphill on a dirt road. On may way back dizziness started and I felt my blood pressure rise. It was terrible. Since then I have severe dizziness and vertigo and it seems that somedays my brain does not process the visual impressions as fast as it should. Few weeks after that happened, the foreign body feeling in my throat started, as well as very heavy pain coming from underneath the right ear to the larynx. It was like a lightning running through my throat. A CT showed elongated styloids.
I talked to 3 surgeons for Eagle Syndrom. I have elongated styloids on both sides, but only the right side is symptomatic All offered a styloidectomy and told me that
the jugular vein is being compressed between C1 and the styloid on the right side of my throat. My C1 transverse process is relatively big and stands 8mm away from the styloid. Nerves are also said to be triggered by the styloid, but this has not yet been proven by any examination… Doppler ultrasound and MRI of the neck vessels with contrast medium are said to be fine. However, both were done in a position where I don’t feel any symptoms or the symptoms are not that bad. My symptoms are mostly on the right side of my face and throat (except the central symptoms from the autonomic nervous system): pain in the side of the throat, foreign body feeling in throat, weakness in the right cheek, in the corner of the lower jaw below the right ear, anisocoria, pressure in the right ear, sometimes I have visual problems like blurry lines while reading, pain in the jaw joint, dizziness, vertigo and strong vegetative symptoms such as sudden attack like blood pressure spikes, increased heart rate, tremors, all muscles become firm and trembling, digestive problems, sometimes weakness in the legs and the feeling of about to pass out etc. I almost can’t move my head in any direction. I have muscle cramps in the palate, throat, tongue and the Cranio Cervical Junction. The CCI and AAI are not very interesting for the Eagle surgeons since they are no spine specialists.
Two days after the appointment with the eagle surgeon, I had an appointment with one of the best neurosurgeons for CCi and AAI in Europe and he said that it was not an Eagle and that it is all caused by CCI and AAi and pressure on the brainstem when I move my head. He said Eagle Syndrome couldn’t irritate all the nerves that are affected in my case. He recommends further cervical spine diagnostics and training for my cervical spine. If that doesn’t work, a fusion of the upper cervical spine could be necessary and a styloidectomy could still be done afterwards. Before I have a styloidectomy the “flow pressure” of the jugular vein should be measured using a catheter. I don’t know exactly what this test is called and I will have difficulty getting a doctor to prescribe it for me.
Maybe it is best to do further spine diagnostics? But why do I have all those symptoms that perfectly fit eagle syndrome.
I’m completely confused and don’t know what to do next. I was so very much hoping that the styloidectomy would help me. It’s hard for me to let go of it, but at the same time I’m also worried about having it done if it isn’t the reason for my symptoms. I get worse and worse, time is not in my side.
I am sorry for my message being so long. Please excuse my mistakes, English is not my first language and I use an online translator to help me.
Thank you all very much
That’s rough for you, I’m sorry that your symptoms are so bad right now…It’s such a dilemma for members when they have complicated medical conditions to know what is being caused by what, and what to try first! I think that quite a few of your symptoms can be explained by ES, but not perhaps the BP spikes- @GodisAWESOME has been having issues with that & I believe was told that this wasn’t likely to be ES related.
The jury seems to be out still as to whether ES surgery makes CCI worse or not, doctors have told members different things. Sometimes the IJV doesn’t re-open very well after styloidectomy with C1 compression as well, so it could be if you opt for surgery for ES first, you still need the C1 trimming. If you had some sort of C-spine training as you mention, it could even shift things enough that the styloids don’t cause as many symptoms? But equally, we’ve had a few members who’ve had neck fusions & have found it’s shifted things so that they get ES symptoms & need a styloidectomy, so it is difficult to know what’s best for now.
Personally I’d opt to do further testing and try some of the training your doctor’s suggested, then make a decision after that, but it is a hard decision if you feel that your symptoms are worsening.
Sending you a hug, and will pray you make the right decisions
I’m sorry you have a dilemma now. @Jules did a good job of explaining why CCI/AAI & ES diagnoses together are hard to know how or in what order to treat. I believe that CCI/AAI causes the styloid/stylohyoid ligament to calcify because the brain detects the neck is unstable so elongating the styloids/calcifying the s-h ligaments happens to help create stability around the cervical spine. Unfortunately that new form of stability creates its own set of problems.
A number of our members who have IJV compression have gotten some good symptoms relief by taking a blood thinner such as Plavix or Brillinta. It can take a couple of weeks for the medication to help reduce symptoms. Do you think your PCP would prescribe one of those medications for you to try? Sleeping with your head elevated at night can also be very helpful in reducing symptoms for at least part of the day.
BTW - Your English grammar is excellent. No need for apologies.
I really feel for you, it’s a hard decision to make. I thought I had CCI/AAI, I was absolutely convinced, I had some similar symptoms to you but I’ve not been diagnosed with CCI or AAI and my scans don’t show this from what I can see. So it was back to the drawing board and in December I had a CT scan and was told that my I had discontinuous calcification of the stylohyoid ligaments and that the styloid processes were 35mm on right (most of my symptoms are on the right) and 32mm on left and even though these are technically elongated depending on what measurements were used, I was told that these aren’t likely to produce all of the symptoms that I was having. My styloid processes are also 8mm away from my C1. That said, the surgeon did say that he would do the operation to remove the styloids if I wanted, but that I should probably rule out other potential causes first. I’m in a similar position in that I don’t want to have the op unless it’s definitely going to solve all of the issues, considering the risks involved with the op. I’m now exploring other factors, I’ve had my wisdom teeth ruled out, I’m going to see a maxillofacial specialist to rule out jaw problems and I’m going to see a specialist about tongue thrust because I seem to have developed a tongue thrust issue (probably through anxiety/stress). Once these are ruled out I might look getting the surgery for Eagles. I think in your case though the CCI/AAI might be the main issue and like @Isaiah_40_31 says above and the processes have grown long because of this. There are a lot of compensations that happen with CCI/AAI like tongue thrust/jaw thrust and other muscle compensations that cause pain and symptoms in all parts of the body. So having the styloid processes out might actually cause more instability and symptoms. I think I would do what @Jules suggested with further tests, get all of the pros and cons. Surgery for CCI/AAI and eagles are both pretty major with risks, you need to be armed with as much info as possible. Also just to add, I have c5/6 and c6/7 disc bulges and all my symptoms happened after that so I think this junction in the neck causes more issues than people think.
I was speculating about the possible link between various cognitive/brain function issues and military neck (applies to any levels with vertebral arteries going through the vertebral bodies):
Thank you so much Jules, Isaiah_40_31, Skatkat, and vdm!
All your messages, infos and well wishes helped me a lot, emotionally and decision wise!
I got the report from the neurosurgeon yesterday. It says that C1 is blocking the jugular vein and that is compressed over 50% (in neutral position). The styloid does not seem to touch it, although the styloid is very big. So it seems…CCI/AAI is the main cause. It still can be Eagles, too. But I made up my mind and will go for further diagnostics of the spine.
@Jules : Yes I am afraid that the styloidectomy might worsen the CCI. That is my biggest concern, besides nerve damage.
@Isaiah_40_31 : I understand the theory of the styloid growing because if the instability. I was first diagnosed with instability in 2020. No one mentioned the styloids back then. In 2020 all my instability symptoms returned, worse than ever. The styloids must have grown in the meantime. CT cans from 2021 show them as they are now. I guess my symptoms now are a combination of Eagles and CCI with the main cause being CCI. I asked for bloodthinners, but the doctor won’t describe them. I will try again because the pressure in my ear and the whooshing sound is terrible somedays. I feel like my right side of my face, brain and head is totally blocked and full.
@skatkat I am sorry to hear that you are in the same dilemma. Did you get a functional upright MRI or DMX to rule out CCI?( In Spain they use CBCT (live video CT while moving the head). In Germany you get the Upright MRI.) Do you know if your vein is affected by the styloids? I hope that you will soon get an answer and help for your symptoms!
It is very interesting to hear about your issues c5/c6 and C6/C7. I have the feeling that the disc prolapse at C5/C6 causes more issues than my doctors think. I am sure they have a negative impact of the statics of the spine…
@vdm Thank you very much for the link! I will talk to the neurosurgeon about it. I have a coiling of the vertebral arteries on both sides and a kinking of the carotis interna on the left. But the doctor said it has no hemodynamic relevance. (diagnosed only with ultrasound) But I am not sure if this is true.
I wish the doctors could have a quick look into my neck and see if there are nerves wrapped around the styloid like the glossopharyngeal or vagus nerve…
Once more: I thank you all very much. This exchange is very helpful because I learn so much and it keeps me from feeling alone.
@Leresa & @Skatkat, I had nerve pain symptoms from ES for a while, but it was only when I had a prolapsed disc C5-C6, that the vascular symptoms of IJV compression started. I think this is too much of a coincidence, I believe it was perhaps enough of a shift to alter the position of the styloids, so I agree with both of you that this can cause issues.
I had an upright MRI at Medserena in London, but it has always bothered me that at the time I was incredibly anxious and my muscles were very tight. I wish I had the money to be able to do it again a bit more relaxed. The CBCT sounds like a good idea though, I might look into that. I haven’t been told if my IVJ is compressed, my IVJ symptoms come and go, so I think that the c5/6 issue causes this when it flares up. I didn’t have a contrast CT scan though, so this wasn’t shown on my scan.
That’s my hope for the CBCT with Dr Oliver. My muscles are so tight , I can barely move my head. The CBCT does not take as long as the Upright MRI, so I hope I will be able to hold the positions. If you like to hear more information about the CBCT or how it went, I would be happy to let you know.
I still have sleepless nights because of my Eagles/CCI thoughts. The pain in the area of where styloid ends is so strong… it must be a combination of styloid and CCI. I hope to hear back from the neurosurgeon and the Eagle surgeon very soon. Have a wonderful pain free weekend everybody!
@Leresa hello and sorry to hear of all you are going through. I would like to follow your posts because I am in the same boat. Very disabling symptoms… AAI/CCI, Chiari 0 which has become symptomatic, as well as vascular ES with IJV compression (may have C1 involvement of the compression). Praying for wisdom and guidance as far as what to do first, second, third!
Hello @Psalm73_26 I am sorry to hear that you have to deal with the same issues. Let’s stay in contact . I will let you know when I get some new informations. At the moment it is Eagle vs CCI/AAI. The neurosurgeon does not think that the styloid causes any trouble but two Eagle surgeons offered my surgery because they think the right styloid should be removed. C1 is definitely too close to the IJV, and when I move my head the styloid seems to touch C1 and IJV. I have to decide about the surgery this week and feel alone in this decision. What are your plans? I wish you all the best!!
Hi there, an upper cervical fusion is a very large surgery, and that it impacts a lot of the mobility of your neck for the rest of your life. It is some thing I am not ready to jump into. So I have tried upper cervical chiropractor, which is working very well, prolotherapy, which had mixed results, although it’s definitely worth a try before the fusion surgery, in my humble opinion based on my personal experience. The upper cervical chiropractors really understand the position of how the head and neck should be normally. Many of us today have forward head posture due to working at a desk all day, tech neck, etc. They can help you to get your neck and head back into a better position to further distance C1 from the styloid and give you more natural space there. I also recommend if you do go see an upper cervical chiropractor or physiotherapist that you tell them that you are unstable at the upper cervical junction. You certainly don’t want them doing anything too drastic or aggressive in that area.
I wanted to add… It seems that the jury is out about if styloidectomy increases upper cervical instability. I have heard the majority of patients with instability issues say it has not impacted them greatly. So that is something to keep in the back of your mind when making your decision. I hope this helps and I will be praying for you.
I agree fusion is a serious step but for me C1/C2 fusion has been very positive so far (at year 2). It has limited head turn at c1 level by about 50% but instability physio has taught me to use lower cervical spine to turn head. So practical limitations of my fusion have proved to be small. Muscles do tense up from op so have to work at easing that. Just sharing so those who must have fusion are not overly fearful of outcome. D
@PatientD how did they find the atlantoaxial instability? CT with head rotated left/right? Was it more due to the risk of brainstem impingement or vertebral artery dissection or something else?..
Thank you @Psalm73_26 !
Sadly there is not upper cervical chiropractor where I live. We “only” have physiotherapists, and CCI/AAI as well as Eagles is mostly unknown. But I was lucky to find a surgeon who has done several styloidectomies. The neurosurgeon is from Spain, he did not suggest a fusion surgery for now but offered me to take part in his physiotherapy program. I would have to wait at least two more months. I have tried prolotherapy, which helped a bit. I have almost no head movement left so I am not able to do the exercises my physiotherapist suggested. Even the smallest chin tucks are the worst.
I am very afraid of the instability getting worse due to the styloidectomy, otherwise I would give it a try. I am so torn between the statements of those two doctors. they could not be any more different.
Thank you for mentioning this @PatientD. I agree…My personal hesitation is because I am already fused at C5-C6 so I know the results would be drastic for me. Also, I have C0 involvement, so it would not be the standard C1-2 fusion for me. I would have to get C0 done too which I have read from various studies really impacts the daily life.
Thank you @PatientD
How long did it take you to heal after the fusion? In my case C0-C2 would be fused. I will consider a fusion if my situation worsens. I already have almost no head movement left…
@Leresa I might have missed the whole discussion, but how exactly your C0-C1-C2 instability was diagnosed? Could you point me to the post where it was discussed please?
So on healing from fusion my instability was solved from day 1 of fusion after plate & screws in place. Most of pain came early (caused by fluid in confined skull as body tried to heal “injury”). I think a drain could have helped reduce that. After fluid subsided main issues have been from muscles “ locking” and trying to regain neck/head mobility. Bones have still not fused (at Year 2) but metalwork remains in place to prevent instability. I regard myself as “healed” from fusion surgery but Maybe need bone fusion before can say operation objective is completed. D
