New here, many symptoms, diagnosed with CCI and probably some jugular vein involvement

[komok]

Hey, I’ve been reading on this great platform for some time now, and today I want to share a bit about my symptoms, the imaging I’ve already undergone, and so on. I’m 22 years old and from Germany, and I’ve been experiencing various symptoms to some extent for probably over a decade. I attribute some of the symptoms to CCI, which I was recently diagnosed with, some to a cerebral outflow problem (internal jugular vein), and some I don’t really know the cause of.

Some of my symptoms:
• cognitive dysfunction (probably the most important symptom), they vary greatly over the days, weeks and months but are always present:
◦ Brain Fog
◦ intense restlessness
◦ Derealization, dream-like or trance-like states
◦ feeling like drunk
◦ poor executive functions
• permanent pressure feeling in the head, especially forehead area (worse with bending over)
• pulsatile tinnitus (both sides) which only occurs with exertion and rarely while lying in bed
There is definetly a strong connection between the pressure feeling and pulsatile tinnitus as on very rare days I don’t feel that head pressure and if that is the case, the pulsatile tinnitus also doesn’t occur with exertion
• headaches of different types and locations, sometimes only one side, especially right side
• neck pain
• loss of gag reflex and reduced sensation on the right side of my throat (especially noticeable with cold drinks)
• visual snow and eye floaters, sometimes the eye floaters greatly increase, especially in phases of strong derealization
• phases of overly sleepiness and on the other hand phases of insomnia
• face swelling
• muffled hearing
• Flushing of face, upper body, arms and fingers
• hard little lumps in fat tissue in upper arms, chest and abdomen
• ……

As I mentioned previously, I have already been diagnosed with craniocervical instability, which was challenging to diagnose in Germany. While the doctor believes that these symptoms are caused by CCI and the irritation of the autonomic nervous system, I’m skeptical that this is the entire explanation.

I also suspect some compression of the internal jugular veins, and I believe there are indications supporting this hypothesis in some of my MRI images. These MRI images include venography without contrast (2D Time-Of-Flight). According to the radiologist, there is nothing remarkable to note in these images. However, I would appreciate hearing your opinions on them, especially since many of you may have had similar experiences where significant findings were initially overlooked. As of now, nothing regarding a potential IJV stenosis has been confirmed, it remains speculative. An unusually long styloid process couldn’t be confirmed with an X-ray.

I have included images of the MRI (t2 sagittal, ToF 2D venography, and 3D Reconstruction of the 2D ToF), with arrows and labels indicating points of interest.
Left side:

On the left side, it’s noteworthy that the left internal jugular vein (IJV) can be seen below the compression (only visible in the 3D reconstruction image).

Right side:

The right IJV can’t be seen below the compression, probably the compression is more severe on this side

GIF of the 3D Reconstruction:

The collateral veins seem big compared to the internal jugular vein.

I hope to have a CTV/CTA very soon, and hopefully, the picture will become clearer by then. I will post them once I have them done.

I already know that I have a arcuate foramen (I don’t know if it is bilateral) and it could probabably explain the one-sided headaches I sometimes get but I don’t think it contributes to the other symptoms.

Also CSF leaks could be involved as I rarely get clear outflow out of the nose when bending over. I also sometimes have fluid sensations in the ear, but no outflow.

I also speculate if some autoimmune stuff or MCAS could be involved, especially because of the flushings (especially in stressfull situations) and other symptoms like feeling very hot and these little lumps in the fat tissue. This could potentially explain the instability of the cervical spine, shoulders, and other joints. Although I don’t experience significant joint pain, they sometimes feel unstable. It’s not the sensation of stretched ligaments but rather the tendons that seem to be affected, particularly noticeable in the jaw region. The jaw feels unstable, particularly next to the TMJ joint where the coronoid process sits and the tendons attach. There isn’t much information available on this yet, but concerning CCI, there are speculations about tendinous instability.

I also considered whether a genetic disorder like EDS could contribute to this hypermobility. However, unlike typical EDS presentations where fingers are often affected, mine aren’t. Interestingly, I’ve had five supernumerary teeth (not counting the wisdom teeth), which is occasionally documented in individuals with EDS.

I have noticed that cold showers help me immensly with many symptoms, especially the cognitive symptoms. Also caffeine paradoxically does calm me down. I contribute both to effects to the autonomic nervous system.

Thanks for reading and for being a part of this fantastic forum!

[Isaiah_40_31]

@komok - based on the images you posted, it does look like you have bilateral IJV compression which is common with a CCI diagnosis which is also common w/ an EDS diagnosis which you don’t yet have, but could potentially be diagnosed with later on. Collateral veins, yours are significant, are also telling of IJV compression since they form to bypass the IJVs & allow blood flow out of the brain which has been restricted when the IJVs are stenosed.

Many of the symptoms you listed go along w/ IH which IJV compression aka Vascular Outflow Obstruction can cause. The CTV & CTA your planning to get should provide clearer images. You should ask for those scans to be done dynamically i.e. with your head in multiple different positions i.e. neutral, looking L & R, up & down, & on the diagonals as this will make it more clear which positions are causing the compression to be worse.

Our member @MsBearshark posted today that after her second IJV decompression surgery, her MCAS symptoms seem to be less severe than prior to the second surgery. This indicates there may be hope that the inflammation that causes so many of the ES symptoms may also be related to systemic inflammation which shows up as MCAS & other autoimmune problems, & when the overall inflammation begins to resolve, so do the MCAS symptoms.

Regarding flushing of your face - that can be caused by the trigeminal nerve though I can’t say what might cause it in your upper body, arms & legs. Also the hard little lumps you’re describing could be small lymph nodes that are reacting to all you have going on in your body. We have another member who has those on the back of his head. Our bodies are covered w/ lymph glands/nodes, & they can become reactive when the body is very stressed & will swell & become painful. Are your hard little lumps painful?

It’s possible the cold showers help you because they are an anti-inflammatory - like using ice on a sprained ankle ro help reduce swelling. It also makes sense that caffeine can calm you down when you feel hyped up. This paradox you noted has been observed for children/adults w/ ADD or ADHD & is the reason children w/ ADD were medicated w/ Ritalin/amphetamines for many years. I have an adult friend who has ADD & drinks a lot of caffeine during the day as it helps him focus. It does the opposite for me.

[komok]

Thank you for your input, @Isaiah_40_31.

It’s helpful to see that others are considering stenosis based on the images and symptoms. I’m surprised by the difficulties in obtaining the right diagnostic measures for potential IJV stenosis and by the challenge many doctors face in acknowledging it as a possible cause of such symptoms.

Yes, a dynamic CTV/CTA would be the most beneficial from a diagnostic perspective. My only concern is determining the potential increase in radiation compared to a neutral CT. I’ll definitely ask my radiologist about this during my appointment today, which I believe will be for an informative discussion rather than the CT itself.

I also believe there’s a connection between MCAS, autoimmune disorders, and persistent stressors like stenosis or CCI. Reducing inflammation seems to be key for managing conditions like these.

The trigeminal nerve hadn’t crossed my mind before, but it could be a possibility. When comparing the flushing patterns with images on Reddit, there are significant similarities with posts on the MCAS, autoimmune, and erythromelalgia subreddits. For example, the flushing on the fingers looks very similar to mine: Reddit - Dive into anything

Regarding the little lumps, they aren’t painful but vary in size from day to day. When larger, they feel softer, but when smaller, they’re really hard, almost like little rocks. The tissue around these lumps also seems to swell or feel fuller from time to time. It’s possible that this is lymph fluid, but I initially thought there might be some form of fibrosis, similar to what occurs in lipedema. While I’m not really concerned about them, I will have them checked out by ultrasound.

I do have some larger lymph nodes in the neck area that aren’t painful. Although I had an MRI for them, the radiologist didn’t note anything unusual. The lack of feedback from most radiologists after taking these images is frustrating. Interestingly, I’ve noticed that shifting my hyoid bone from left to right seems to cause them to drain.

I’ll be sure to update you if I have any new information on any of these matters.

[Isaiah_40_31]

Our member @TheDude is also in Germany & has done a lot of tests there. He had bilateral IJV compression. You could ask him for some guidance either in this thread or via private message.

[Jules]

It certainly looks like there’s some IJV compression, so it’ll be good to get a CT with contrast. We’ve had lots of members with IJV compression, it seemed to be straight forward compression by the styloids, but lately we’ve found that the C1 process is contributing to the compression, and other members have had compression by the digastric or SCM muscle, & even sometimes other blood vessels or nerves. The veins collapse quite easily…
We’ve had quite a few discussions about IJV compression so you could search the forum for more info, also MCAS, EDS & arcuate foramen…it’s very hard sometimes to differentiate symptoms, others on here have likened it to peeling the layers on an onion.
\have you seen the doctors list? We have a few doctors on it in Germany?

[Jules]

This discussion might be helpful for you, @vdm has posted some interesting thoughts:
New here looking for advice and opinions - General - Living with Eagle

[komok]

Thanks @Isaiah_40_31 I will write him for sure.

Thank you for your comment, @Jules, and the information provided. I am already very actively following many discussions on this great forum and many other sources. I consider myself already well-informed on this topic.
I have already looked up the doctors list, but I had hoped that I would get the CT from a local physician and then take the next step and consult one of the experts on the list. I had already contacted Dr. Heim, who is sometimes mentioned on this forum, but he also said I would have to get a CT done beforehand.

Also I want to update you that I had my appointment today with the radiologist, and it turned out differently than I expected. First of all, he was really nice and took a lot of time for me (1.5 hours). He said that he had indeed already looked into the topic of internal jugular vein stenosis and had discussions years ago with colleagues about it, but not in the way you may be thinking now. He said there is always (really 100%) a stenosis of the IJV present when doing a CT/MRI in the lying position. The transverse process is always compressing the jugular, according to him. He has a really strong opinion on IJV stenosis NOT causing any symptoms in almost any circumstance as the collaterals always make up for it, and he always criticized a colleague that wrote IJV stenosis as a pathologic entity into the report. He does mention it in his reports but makes clear that he sees them as a positional normality and not a pathology. He said the stenosis would probably not be present in an upright position, and that is where he sees the flaws in the studies of it. Of course, I asked critical questions like on data published in studies that are contrary to his statements, but he isn’t a fan of these studies as there are no placebo control groups and so on. He also knew about older studies on MS and IJV stenosis (which was a big thing back then, about 10 years ago) and that there couldn’t be a connection found between these two disorders, contrary to what an Italian doctor claimed beforehand.

Of course, I mentioned some anecdotal stories like from you guys, that many found great relief from decompression surgeries and so on, but again, he is more insisting on studies and not anecdotal stories. I also mentioned that my symptoms are a really good fit with symptoms described in these studies and also by other patients. I already knew that some physicians are critical about IJV stenosis, like the CCI expert Chris Centeno, who at least acknowledges that a stenosis can make these symptoms (but is very skeptical about the removal of the styloid), but also have the point that a stenosis is often found in many asymptomatic people. But saying that IJV stenosis never makes symptoms is a claim that surprised me a bit. He also said there would have to be other signs like edema present if there really was a stenosis.

That’s the reason he doesn’t really want to do the CT, especially since I am young and he sees no diagnostic value in relation to the risks. Although he wants to do a new MRI of the throat region and also the TOS region with a focus on the arteries. He also wants to rule out dural arteriovenous fistulas, especially because of the pulsatile tinnitus (which honestly bothers me not at all, but I see it as a symptom that is connected with other symptoms). I asked if a lumbar puncture would be a good idea to determine my intracranial pressure, and he thought it was a good idea, but I would have to find a neurologist to have it done. In Germany, we have 5 locations that are offering sitting MRI devices, so maybe it could be an option to have an MRI venography in the upright position, if that is even possible with these MRIs. If it still shows a stenosis that would disprove his point.

I still think a CT would be a good idea but for now, this moved into the far future and I don’t really know how to get one, probably I will have to travel further to the doctors on the list. Even if I do and it shows a stenosis, it will be very challenging to determine if it really is causing my symptoms (which I still believe in), especially since it’s really hard to argue against an experienced and competent radiologist.

I don’t feel bad about it, I think it’s rather interesting to hear his point of view. But of course, this brings me no step closer to fixing these very restricting symptoms I experience. As I said, he was really respectful, and he also was happy with the information I gave him beforehand, like a list of my symptoms and thoughts on the possible causes of these.

[Jules]

I’m glad that he was respectful, discussed things & gave you time, but obviously we disagree with him on here! The IJVs do collapse when laying down, so that’s fair enough, I can see his point that it would look like there is compression on many people, but very reputable and experienced doctors have published papers about it… others on here have had dynamic CTs & pressure testing done which shows compression. There aren’t massive risks for a CT with contrast!
To get evaluated for TOS and other possible blood vessel abnormalities might be worth going along with as quite a few members have other issues too, but a CT to see the styloids as well would be an advantage, especially if you need this for a referral to Dr Heim! I don’t know the system in Germany, would you be able to pay to have one done yourself?

[komok]

Yeah, I also disagree with him on most parts, as some claims seem extreme. It’s possible that some asymptomatic people can have stenosis, but saying it never causes symptoms is a bit odd, especially considering the studies you mentioned.

I can understand his concern about radiation. I don’t think it’s as risky as many doctors portray, but there is a higher risk when you’re younger. For example, if you receive a CT with 5 mSv (couldn’t find a good source for CTA/CTV of head & neck, only for CT Head, so it’s just an example dose, but the real dose is probably higher, especially with dynamic CTA) of radiation as a 22-year-old male, you have a 0.054% additional risk of cancer (source: XrayRisk.com :). Compared to the symptoms I experience, the risk would definitely be worth it. From his standpoint, it wouldn’t, so it was the only thing he could do to deny the CT.

Interestingly, there is a relatively new technology called Photon Counting CT that will probably spread in the near future but the devices are still expensive. It has much lower radiation exposure with significantly better image quality, so radiation could be less of an issue in the near future (or is already, if you can get access to the few devices).

@Jules

I don’t know the system in Germany, would you be able to pay to have one done yourself?

It would be possible to pay for one yourself, and it would probably be a bit easier to get one. In the end, it wouldn’t make much difference, as the radiologist could still determine it’s not necessary. The only difference for me would be that I wouldn’t need a referral from another doctor like a neurosurgeon again to get the CT, and the regulations on radiation hygiene are less strict if you pay for it yourself.

I will talk with my primary care doctor about it again (which sadly wasn’t helpful in the past) and I will reach out to some of the experts on the list.

[Isaiah_40_31]

@komok - - three rounds of applause for the way you advocated for yourself w/ the radiologist!!! Even if he didn’t concede & order a CT scan for you, I’m sure you gave him some “food for thought”. It’s good you know as much as you do & could give him solid & reasonable arguments. I’m sorry his point of view & understanding of IJV compression is so different from ours.

You’re doing the right thing by going back to your PCP to try again & perhaps this time he’ll be more proactive in trying to help you get the CTA/V. If not, your suggestion to reach out to some of the other doctors on the list may be helpful.

[BabzieAM]

Wow you have my symptoms! I have CCI and ES. The derealization and visual issues have been so debilitating I can’t even leave the house. I hope you get some resolution.

[komok]

Yes, we indeed have quite a few similarities in symptoms. I find it very interesting that I’ve read quite often about derealization/dissociation as a symptom of CCI and Vascular Outflow Problems, especially since this symptom is almost always viewed as a psychiatric diagnosis in the medical community… I really think the medical community is missing a big puzzle piece on this topic. I don’t know the exact mechanism behind this. Currently, I am debating between Jugular Vein Outflow problems and irritation/inflammation of nerves, especially the vagus nerve, which is right next to the internal jugular vein.

How exactly were you diagnosed with CCI, and did you undergo any treatments because of it? I truly believe that stabilizing the cervical spine could be one way to also treat jugular vein stenosis and to decompress it, as the transverse process is probably the main problem with CCI and the styloid process acts like a barrier for the jugular vein and you can make more room for it with stabilizing the spine.

All in all, I think you are on the right track, and I also hope you will find some resolution. I will definitely let you know here as soon as I have found the exact cause, figured out what to do about it, or found something that helps.

[BabzieAM]

I see Hughes in London in a week and am hoping he’ll agree to remove my styloids. Once they’re out I’ll go back to my cervical chiropractor for cervical adjustments.

I was told I had anxiety for 2.5 years and only found out by chance I had huge long styloids via a chiropractic scan.

That’s the plan. I’m hoping it goes smoothly!!

I see you’re from Germany! I’m originally from Pforzheim. I’ve heard there are a lot ES surgeons in Germany. I hope you find the answers you need.

[Dersen]

Hey Komok, just got the feeling I need to write you a response, as I see myself a lot in your description.

I am also feeling very foggy, derealized, drunk, sleepy and many more of your described symptoms (since 4 years, I am 34) and I am also from Germany. See my details here if interested.

While investigating I also came upon the assumption it might be CCI, as the symptoms are matching and I developed cracking sounds while head movement and muscle tension in the C1/C2 region. So I paid an Upright MRT on my own, which came out negative - but to be honest I am not quite sure at that point.

Can I ask you how you got tested for CCI? Did you had an accident which caused it?

Unfortunately the situation in regards to Jugular Vein compression is very bad in Germany. Neither while having my Eagle Syndrome surgery (vein was not opening up after surgery), nor while having an Ultrasound (“Dopplersonographie”) anybody really took that part serious, although clearly seen in the CT Venogram. By the way I also struggled to get the CT payed and waiting for appointments took ages, so I paid It on my own, it was about 350 EU (just fyi).

No matter how, I also suggest getting one, as this gives a lot more insights.

Having cold showers is helpful for me, too. My explanation would be that the diameter of the blood vessels shrink, which improves the blood flow.

So as you see I don’t have any solution or good news, I just can say you’re not alone and I’ll definitely follow your story, so please keep us posted.

[BabzieAM]

I found a cervical chiropractor in London who did a 3D CBCT scan that showed my styloid issue and CCI. I started having adjustments for the CCI, but was too worried about aggravating the ES, so am looking at surgery first.

I have so many neurological symptoms. The Derealization is probably the worst. I feel like my brain is being suffocated.

You are not alone. Keep us posted on your progress.

[komok]

@BabzieAM

I would also say that derealization/brain fog is my worst symptom, so I am very interested in what Dr. Hughes will say next week to you and I hope that he can offer you some good solutions. Your styloids are definitely longer than mine (I don’t know how long mine are in detail, but at least cervical x-ray showed that they are not that long). I think it is also a good idea to ask Dr. Hughes about the CCI, and it’s probably a good idea to investigate further into the topic of CCI.

Very interesting that you are originally from Pforzheim and now moved to England.

@Dersen

Your post is very interesting and helpful with many similarities and matches in symptoms. It seems that you have already done a lot of research, treatments, and even surgery, so it is sad that nothing really helped as for now. Was it a sudden onset of symptoms 4 years ago or was it rather a slower onset?

I got diagnosed with CCI with Sandberg-Röntgen (X-Ray with open mouth to see the dens and leaning your head to the right and to the left). Theoretically, this can be done by almost all doctors with an X-Ray device. In practice, very few do them and can’t make the important measurements as they have no experience with this. I had it done in Lübeck at Dr. Bärlehner’s, who unfortunately is a private doctor, but he does a thorough investigation and really takes time for you, and it was surprisingly cheap (around 120 Euro for me). He doesn’t have in-depth knowledge about IJV compression, but at least he acknowledges that this could be a problem after I talked about it with him. He also says that this type of X-Ray doesn’t rule out CCI as there are many types of CCI. The same is probably true for an upright MRI. I don’t know exactly what caused CCI in my case, probably a combination of naturally lax ligaments and accidents in childhood, especially one where I had a black eye afterward.

I think it would be a good idea for you to go further into the CCI direction, or it doesn’t even have to be CCI, just a bad alignment of the cervical spine. Based on your CT, I think the main problem could be the transverse process. I know how hard it is to do such postural training with such intense symptoms, and I honestly don’t do it yet, but I think progress can be made with this. What I want to try in the near future is a posture strengthening program like Bryan Johnson’s (there are videos on YouTube about it), which is probably the most famous IJV Compression sufferer and claims that he reversed it with these exercises with the help of MSK Neurology (which is often mentioned here). To note is that he probably didn’t have such intense symptoms as we do, but it could be worth a try.

The situation regarding Jugular vein compression is, as you said, really not easy here. Did you notice any improvement/change of symptoms after your surgery? Also, it would be interesting to know if your symptoms fluctuate as the day goes on or if there are phases with changes in symptoms. At least for me, there are definitely changes from time to time where it does get better, but in the end, I always go back to this trance-like state.

I also thought about the cold showers and constriction of the blood vessels, as the constriction is regulated by the autonomic nervous system. Interestingly, the symptom reduction after cold showers is almost immediate, so I am skeptical if it is purely because of changes in blood flow or rather more a general change in the activity of the sympathetic/parasympathetic nervous system. I sporadically tested my heart rate variability (HRV) with the phone app Welltory, and according to the app, there are indeed some imbalances of the autonomic nervous system, which are likely caused by irritation of the C1 area, for example, because of vagus nerve irritation or also IJV Compression. Dr. Middleton often talks about being stuck in fight or flight mode, which I think there is truth to that. In regards to that, he mentions stellate ganglion blocks, which can help with the regulation. I haven’t done much research on this as I don’t plan it currently as it seems more like a symptom-based treatment and doesn’t eradicate the cause, but it will probably be an option for me if really nothing else works.

Do you have any next steps planned for addressing your symptoms? My strategy is to always have at least one thing planned, as I would drift off into intense procrastination otherwise.

I will definitely keep you updated here, and of course, you can also contact me via private message.

[BabzieAM]

@komok Ill post next week after my consultation with Hughes regarding what he says. Good luck with your journey.

[Dersen]

@komok

Was it a sudden onset of symptoms 4 years ago or was it rather a slower onset?

It started with getting migraines when I turned 28, and after one very heavy migraine the symptoms stayed. And somehow think it was related to a fast movement of my head to the left as somebody entered the room. So maybe some vessels got compressed there, but that’s just an wild guess.

@komok

I got diagnosed with CCI with Sandberg-Röntgen

Thanks for that info, somebody suggested that earlier, maybe I’ll find somebody nearby (btw I live very close to Pforzheim @BabzieAM )
The problem with CCI from my point of view that there isn’t a real solution, so not sure if it would help me in the way I see my problems.

@komok

What I want to try in the near future is a posture strengthening program like Bryan Johnson’s

Will definitely check him, didn’t come across him till now. Thank you

@komok

Did you notice any improvement/change of symptoms after your surgery

Maybe it feels a bit more free than the right side while moving the head, but the main symptoms did not change. Unfortunately I found out that the right side is my dominant vein, so if I had the pictures before the surgery, I would have gone with the right sight first instead of the left one.

I also got better days and worse, but the symptoms are always there. Also it’s mostly worse in the morning. I often wake up with muscle tension (“Muskelkater” like feelings) in several joints. Like I’ve ran a marathon over night. So somehow I still got the feeling my sleep is not restful at all. So matching the feeling being stuck in fight or flight mode yes. And in general I know after getting up if its a relatively good day, or very bad one. Is it the same for you?

@komok

Do you have any next steps planned for addressing your symptoms? My strategy is to always have at least one thing planned, as I would drift off into intense procrastination otherwise.

I fully can relate to that. But to be honest I am running out of ideas. If I would have more energy I think I would go for the second surgery as it at least didn’t make it worse and I think the styloid is definitely involved here. But as my surgeon (Dr. Heim) is not doing surgeries anymore, I would need to start over with Dr Martini probably.

Also I am doing “Pohltherapie” at the moment, they concentrate a lot on trigger points and facia release. But till now It didn’t help at all.

[komok]

@Dersen

The problem with CCI from my point of view that there isn’t a real solution, so not sure if it would help me in the way I see my problems.

I do think that there are ways to get good treatment results, even without expensive treatments like stem-cell injections. I do think that it is a good sign that the Upright MRI didn’t show any obvious damages to the ligaments, so maybe your problems are more muscular-based. Maybe you know the YouTube channel “Kopfgelenksinstabilität”; he does good and very comprehensive videos on this topic, but you should be aware of some more alternative suggestions which I don’t really agree with. For finding someone who does Sandberg-Röntgen, it may be useful to ask or search in Facebook groups about CCI.

@Dersen

Unfortunately I found out that the right side is my dominant vein, so if I had the pictures before the surgery, I would have gone with the right sight first instead of the left one.

Yes, that is really very unfortunate and could be a reason why the surgery didn’t have great success.

@Dersen

I also got better days and worse, but the symptoms are always there. Also it’s mostly worse in the morning. I often wake up with muscle tension (“Muskelkater” like feelings) in several joints. Like I’ve ran a marathon over night. So somehow I still got the feeling my sleep is not restful at all. So matching the feeling being stuck in fight or flight mode yes. And in general I know after getting up if its a relatively good day, or very bad one. Is it the same for you?

I can really see many things on myself besides that I wouldn’t say it feels like “Muskelkater,” it is more like tightness across the whole body, especially in the pelvic area. It really is worse in the morning, also for me, and there is the tendency to get better in the evening, and it feels like my body loosens up and does crack more when stretching. And yes, I can completely agree that I know if it is a good or bad day symptom-wise directly after waking up. I found that sleeping on my right and chin wide up makes it more likely that it is a better day, but this isn’t always reproducible. Rarely I go to bed as I am really tired, lay down and wake up after maybe 20 minutes completely refreshed and in a very weird euphoric state.

@Dersen

If I would have more energy I think I would go for the second surgery as it at least didn’t make it worse and I think the styloid is definitely involved here. But as my surgeon (Dr. Heim) is not doing surgeries anymore, I would need to start over with Dr Martini probably.

Having energy is definitely very problematic, especially since doctors make progress very hard in not really being helpful or supportive as they don’t really know what you are talking about. If you think your styloid is involved, it is probably a good idea to get in contact with Dr. Martini and hear his opinion about it. I do think that you are on the right track and are looking in the right area, and I am sure that it is fixable.

[Isaiah_40_31]

@komok

Yes, that is really very unfortunate and could be a reason why the surgery didn’t have great success.

@Dersen - I completely agree w/ @komok’s statement. There have been a number of our members who didn’t see a lot of improvement after one styloidectomy/IJV decompression but did finally get good results after the second IJV decompression & styloidectomy.

It’s such a shame the Dr. Heim decided not to do ES surgeries anymore. We’ve had a couple of members who’ve been in touch with him, & it sounds like he gave them some hope of helping them. It might be worthwhile contacting him again to see if he would do your second surgery & finish what he started, in case he’s changed his mind.