After jugular vein compression surgery, still having problems

[ChristinaBabylon]

Hi everybody,

I’m contacting you because I need some desperate advice for my husband.

We come from Belgium and our native language is French. I’m sorry in advance if my English is simple. Thank goodness for automatic translators

For the story :

My husband (33 years old) suffers for many years (+/-15 years) from problems with his eyes (blurred vision, intermittent diplopia,hyper convergence, …).

At he beginning, the problem was a simple visual fatigue at the end of the day … but the problem continued to get worse as the years passed.

Back then, he consults many ophthalmologist, neuro-ophthalmologist, specialist un dry eyes, strabologist, etc but its did not solve anythings … even get worste. But it was manageable.

In 2019, he had an accident (He was driven and was hit by a streetcar). The accident caused no major problems, an MRI was ordered but nothing unusual was detected. He also suffered several falls on his back, including one with a head injury but no loss of consciousness in ± 2008/2009.

However, from that moment, his health deteriorated significantly in the eyes but also other kinds of problems have appeared over the past 4 years (violent headaches, tinnitus, vertigo, heightened sensitivity to light and noise, etc.). but also an increase in sight-related problems ! The problem(s), whatever they may be, have an enormous impact on my husband’s eyesight.

At the moment, the problems are such that now my husband can’t read or write, he can’t look at a screen for more than 5 minutes without having pains, he can’t drive, he can’t go shopping, he can’t take our young child to a playground, and even walking in nature is becoming an ordeal. (dizziness, headache, tinnitus, sensitivity to noise and light making him highly irritated, etc.). It happens earlier and earlier in the day.

After a lot of medical wandering, we discovered that my husband was suffering from bilateral compression of the internal jugular veins between the styloid processes and the transverse part of the C2 cervical spine.

It was Dr Brassard who carried out the tests (painfully I must say because we had to call him back several times to set up the tests ):it was cervical CT with neck flexion and carotid-vertebral angio with and without neck flexion.

After that, even with this diagnosis, few of the surgeons we consulted felt able to perform the operation in Belgium (complete removal of the apophyses). and after months of searching, we found a doctor (Dr Ladner at Brussels) whose specialty it was who was willing to perform the operation (15 minutes from our home … the irony of life I guess). My husband was operated in february 2024. The operation went well and indeed since the operation the flexion of the head no longer has any impact on health problems.

but the tinnitus has intensified, the headaches have become unbearable, and the nights are a living hell for him. And of course, nothing has changed in terms of his vision.After discussing the matter with Dr Ladner, he felt that there should be no more problems, and that if anything persisted, it was other problems.

So back to the starting point !

Now, we’ve noticed that the problems get worse mainly at night, when he’s lying down. He wakes up several times a night with severe headaches and very pronounced tinnitus. He’s been trying to raise his chest while he sleeps until we find a doctor who’s willing to think about the problem for us, but it doesn’t really help. It makes falling asleep even more complicated.

As no doctor seems to want to take the problem in hand, my husband, who is a biologist by training, decided to take his diagnosis in hand (as is unfortunately the case for many people on this forum, I understand).

On this point, I’m truly amazed by the gold mine this forum contains. Thank you to the creators and moderators who have enabled these possible exchanges and to the people who contribute to the discussions. It’s pretty priceless to have this kind of mutual aid

what we think:

1. The compression was “the tree that hid the forest”. compression was just a layer of complexity to the initial problems.
2. There are undoubtedly several intertwined problems. With the luck we have, these are probably all rare and difficult to diagnose problems but what is causing the most damage at the moment is the fact that he cannot have a restful night (even if he takes medications to help him sleep). Something happens at night when he’s in bed that no one gets there and doesn’t want to understand.
3. He probably has intracranial pressure, which intensifies at night, caused by something but we don’t know what.
4. The various falls and accidents have accentuated an already existing problem

but there are still so many uncertainties and questions.

1. Could this be a leftover compression? The apophyses were removed from both sides but before the operation we met other specialists near Montpellier (France) who had specified that in certain cases, they added a stent in the vein because the vein did not always return to its initial size. Has anyone ever had to put stents in their veins in addition to the operation?
2. Could this be a vascular-venous conflict located at the back of the skull (higher in relation to the apophysis?)
3. could the doctors have missed something on the compression scan that could be viewed elsewhere, another compression leading to intracranial hypertension elsewhere?
4. About the eye problem, we came to the conclusion that the problem could be a muscular one, with a weak muscle compensated for by an overly powerful eye muscle, leading to problems of excessive convergence. but we wondered if these problems were purely muscular, or could they come from a problem of vascularization?
5. Has anyone reading this ever experienced similar problems or known someone who has?
6. Would any of the doctors listed on this forum be willing to examine (even in video consultation ? ) my husband’s medical images for a second opinion?

I apologise for this post. I hope I was understandable.

If you have any opinions, thoughts or advice that came to mind after reading our testimonial, please don’t hesitate to mention them, as they may lead us down another path.

Thank you for reading

[Isaiah_40_31]

@ChristinaBabylon - Your post was very understandable. You do not need to apologize. The translator did a good job of making what you wanted to say very clear. I’m very, very sorry for what your husband is going through & for how long he has been suffering. This is not just difficult for him but also for you and your son.

We have learned via patient experience & research documents that the styloid processes (apophyses) are often not the only cause of internal jugular vein (IJV) compression. Other factors such as the transverse processes of the C-1 or C-2 vertebra (you noted C-2 in your husband’s situation) can continue to cause compression in the vessel even after the styloid is removed . In these situations, a small amount of bone needs to be shaved off of the transverse process to make more room for the IJV to open fully. It does not sound like that was taken into consideration in your husband’s case. Other things that can cause the IJV to remain unopened are compression by a muscle such as the digastric muscle, nerve such as the accessory nerve, scar tissue from a previous injury or surgery, or even other vascular tissues such as an artery or vein. If these aren’t looked for, their role in the compression may not be observed & most doctors who aren’t familiar with IJV compression wouldn’t know to look for something other than the bony compressors i.e. styloid & C-1 or C-2.

As you suggested there is the possibility of compressions in other parts of the vascular system within your husband’s skull or even in his neck that could be causing his current symptoms. An angio/venogram of his head & neck would help to answer if he has a problem within his skull or elsewhere in his neck or both.

Regarding the sleep problem, has your husband tried sleeping with his head & shoulders elevated at night. A wedge pillow can be helpful for that. Also, a number of our members with IJV compression were given a prescription for a blood thinner which helped reduce their symptoms until they had surgery to correct the problem. That is something your husband could request & at least try for a month to 6 weeks to see if it helps.

It does occasionally happen that a person’s IJV which has been decompressed does not stay open on it’s own because it has been compressed for so long, but often the pressure of the blood will help it stay open once it is decompressed. Your husband would have to get new diagnostic imaging done to look at the condition of his IJVs now to see if they look open & healthy or still closed up.

Here is a post with some information about jugular stents. Surgery with Hepworth coming up in early May - #6 by Barrootz

Overall we think they should be avoided if at all possible. It’s especially important if your husband were to get a stent that the cause of the IJV compression has been fully resolved because stents are prone to bend when put under pressure by an external force such as the one causing the IJV to continue to suffer compression. A bent stent permanently closes off the vessel since stents can’t be removed & can cause terrible pain. Jugular stents also tend to migrate which means they move out of the area where they are placed & into another part of the vein which can cause additional problems.

I would recommend you try to get a consult with Dr. Costantino in New York. He has done quite a few IJV decompression surgeries and could be very helpful for you. He does video consults, but he would need to see your husband’s diagnostic imaging ahead of time.

•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS

If you were to consider a stent, I’d recommend an appointment with Dr. Fargen in North Carolina - Kyle M. Fargen, MD, MPH, FAANS | Atrium Health Wake Forest Baptist

I hope this helps & I hope other members will offer suggestions as well. I will pray for you & your husband to get the answers you need for his recovery.

[Jules]

So sorry that after the hunt for someone to help and pushing for surgery that it’s not been enough to help with your husband’s symptoms…
I agree with @Isaiah_40_31 about the other anatomy which could be causing compressions, and that stenting should maybe be the last resort. If you have copies of your husband’s scans, & if he can get new imaging done otherwise some members have sent their images to Kjetil Larsen at MSK Neurology, here’s a link:
Home - MSK Neurology
He seems to spot things in scans which other radiologists miss!
The doctor you saw for your husband’s surgery has authored a research paper although we’d not heard of anyone having surgery with him. There’s one other on our list but don’t know much about them so not sure if they’d be any help, or you might have already heard of them:
Dr. Thierry Ladner, Hospital CHIREC, https://www.doctoranytime.be/d/stomatologue/ladner-thierry?utm_source=gmb&utm_medium=organic&utm_campaign=profile
Hopefully others will chip in as well, but you mention pain at the back of the skull; if there is compression of the IJVs, other veins can swell and take over (collateral veins), so that could perhaps be causing problems and pain. Other members have had issues with the transverse sinuses in the brain

Here’s a link to one discussion where @KoolDude has talked about compressions of the IJVs, and transverse sinus issues, which might be interesting for you.

Surgery with Hepworth coming up in early May

It’s been way too long since I updated here. I continuously struggle with balancing increasing pain and muscle spasms that go all the way up to my neck (no good!) from thoracic outlet syndrome from typing and scrolling with researching and keeping up with this and the Facebook group. It’s a no win situation My surgery is in just under one month with Dr Hepworth. I did the catheter angio venograms with Dr Fargen toward the end of last year. He found more compression points than expected,…

I hope that your husband is able to find some treatment to help, thinking of you both

[LimeZest]

Sorry to hear of your husbands suffering. If you can upload any of his scans, pre surgery and post surgery that would be great. there are quite a few of us that have been looking at these so may be able to offer some help.

[CoHDa]

Dear @ChristinaBabylon,

I could be entirely wrong, although I am fairly certain that I am not, your husband has likely suffered a brain injury. His eyes - like a canary in a coal mine - are alerting him that the visual connection to his brain has been injured. I say this, because what you have described sounds so very familiar to my own story and to those of others who have suffered brain injuries of some form or another.

The car accident your husband suffered that was said to cause no major problems likely did, and an MRI would not be able to detect damage to his visual processing system. The damage to his visual processing system is evidenced by his struggle with reading and writing, driving, shopping, sensitivity to light, and loss of balance. I believe I shared some of the same struggles in one of my introductory posts on this forum.

I went to countless neurologists, ophthalmologists, and neuro-ophthalmologists. All were absolutely useless and made me feel worse, because of the way they belittled and dismissed my complaints. I eventually came across a book The Ghost in My Brain: How a Concussion Stole My Life and How the New Science of Brain Plasticity Helped Me Get It Back by Clark Elliott. In the book, Elliott details how a car accident, that purportedly caused no major injury, upended his life, mainly because of the damage done to his visual processing system. Ultimately, it was a neuro-optometrist, who was able to treat Elliott and restore his vision and his balance, among other things.

Given Elliott’s meaningful experience working with a neuro-optometrist, I found one local to me, who specializes in visual therapy for people who have suffered concussions and other forms of traumatic brain injury. She used many of the same modalities described in the book. The take away from the book and my own personal experience is that your eyes are the windows to your brain, and they can sometimes tell you what something like an MRI cannot.

I can also say that, throughout the hunt that years later led to my diagnosis of vascular Eagle syndrome, that same neuro-optometrist has remained part of a very small circle of trusted medical providers. She was the first to sound the alarm about an unidentified source of inflammation (VES) that was affecting the health of my eyes. Was she ever right!

I would urge you to get your husband to a neuro-optomestrist who can thoroughly evaluate his vision and chart of course for recovery. You can also learn more at the Neuro-Optometric Rehabilitation Association (NORA) website and perhaps find an affiliated doctor. About Brain Injuries & Vision | Neuro-Optometric Rehabilitation Association

I hope this helps, and wish you and your husband better days ahead.

[Isaiah_40_31]

Thank you for sharing your insight & great advice for @ChristinaBabylon, @CoHDa!

[ChristinaBabylon]

Thank you for your message and touching words. It’s really nice to have support (especially from someone who knows exactly what my husband is going through)

Since the last message we consulted a neurosurgeon last week who detected something new in a brain MRI from 2021. He detected a slight descent of the brain’s cerebellar tonsils from the foramen magnum. This is a new element in an already very complex course Nobody had detected it before, and the specialist didn’t seem very worried. The syndrome associated with this pathology (Chiari Syndrome) doesn’t seem to be the case with my husband, but nevertheless this descent, even very slight, could have an impact on intracranial pressure, couldn’t it?

As a result, he has asked to have another MRI scan to check for any changes. The earliest possible appointment is the end of June. Following this, we also have an appointment with a neurologist (colleague in the same hospital as the neurosurgeon) who will no doubt be able to examine the new tests closely.

In addition, at the end of May we have another appointment with Dr. Costalat from Montpellier (the man who wants to put in the stents) to repeat the tests to see if the veins are still in a compressed state. This will involve retrograde venous angiography with pressure gradient measurements. We’ll take this opportunity to ask you to look higher up in the results. Clearly, we don’t want to resort to stenting, which is far too risky. We’ll be making decisions based on the results from Montpellier and the MRI in Brussels.

The doctor in Montpellier also suggested prescribing Diamox following the examination to see if it could influence the intracranial pressure, but he didn’t want to do it before the examination for fear of influencing the results.

As far as specific es eyes are concerned, we went back to see a strabologist who really took her time to re-examine his case. She clearly admitted to us that she didn’t understand anything in his clinical picture. She redirected us to a reputed neuro-ophthalmologist in Belgium (whom my husband had already seen a few years ago and who had told him that his problems were due to stress…). In short, given that the symptoms have improved and that we’ve been recommended by a colleague, maybe this lady will take the time to listen to my husband. For the moment, we’re waiting for her to get back to us to make an appointment.

@Isaiah_40_31 He’s already tried sleeping with his head and upper body elevated to reduce headaches but it’s so uncomfortable that he can’t sleep, he only uses it during the day to rest without sleeping.

Many thanks for the names you gave us (Constantino, Dr Fargen but also Kjetil Larsen) the last one is super interesting because in my husband’s case, since some previous examinations were not well enough examined by the countless specialists we saw.

@Jules thank you so much for your answer and your kindness. Sorry, I think I misunderstood you. Dr. Brassard is indeed the doctor who wrote the article, he’s the one who performed the angiography that detected the presence of compression in my husband but he doesn’t do the operations. It was Dr. Ladner whom we consulted and who performed the operation. Despite the fact that the operation made no difference to my husband, he did perform the operation.

Thank you @LimeZest for your concern, What we have are series of Scan or review. I am unable to choose the image that shows an overview. In a pinch, I can send you the link to the series of images.

Wow thank you @CoHDa for your testimony. I completely understand your suffering when you say that you have been bullied by ophthalmologists and neuro specialists. You can’t imagine how many specialists reduced my husband’s symptoms to simple stress

We’re also thinking of mild brain damage problems that aren’t serious enough to be considered by associations. I had contacted one in Brussels and they told me that, unfortunately, they could only medically follow up people with severe handicaps due to brain damage. The problem is that the visual symptoms started long before the accident, so we can’t be sure. It’s probably not the initial problem.
Thank you for the specialist’s advice, unfortunately in Belgium I don’t have the impression that this kind of specialist practices, but I’ll take a close look at the site you recommended. Thank you.

[LimeZest]

Happy to help look at the scans.

Regarding the chiari, this is often a problem that comes with craniocervical instability and atlanto-axial instability (instability at C0-1-2 in normal english). Has your husband been evaluated for this? Or something like Ehlers-Danlos syndrome/hypermobility?

There is a paper from Atul Goel who is a famous Indian neurosurgeon on this topic, and his data shows that instability can cause chiari malformation. This can then change the flow of CSF, leading to intracranial pressure, headaches, visual problems (due to optic nerve problems). But @CoHDa raises a good point about brain injury too.

[CoHDa]

@ChristinaBabylon Neuro-optometrists are often treated like step-children compared to ophthalmologists, so most people know very little about what it is that they do. NORA is an international group, which does have members in Europe, so if not in Belgium, you should be able to find an affiliated specialist nearby.

A quick search on NORA directed me to Richard Hoctin-Boes in Ridderkerk https://www.eyeforvision.nl and Rob Gevers in Berlicum https://www.oogbalans.nl. Depending upon where you are in Belgium, I think both doctors are maybe 2 hours or so away by car. Aside from the Netherlands, the next closest group of doctors are practicing in the UK.

I should add that I started wearing bifocals at the age of 3 for strabismus and still wear glasses today. The mild brain injury occurred in my 40s. But my eye health history before the injury really didn’t matter so much nor did the fact that the brain injury was mild compared to more severe injuries. The same can probably be said about your husband’s situation, e.g. his visual symptoms before the accident and the likelihood of mild rather than severe brain injury.

The fact is that the injury, however mild, was bad enough to cause visual and vestibular impairment that forced me to withdraw from a doctoral program. So, I can actually imagine what your husband is going through when you talk about convergence disorder. Thankfully, the impairment was corrected with relatively simple course of treatment - akin to physical therapy for the eyes and brain - that apparently, or so it seems, only optometrists specialize in.

Again, I wish all the best to you and your husband.

[PatientD]

Hi, very sorry for health difficulties you are facing.

Had a few thoughts to add in case they help:-

1. In UK Moorfields Eye Hospital London have an Electrophysiology Dept that can run tests (about 3 hours) to test if connection between brain and eyes is working properly. I mention this in case a similar expertise exists in Belgium or in case London is viable treatment Center for you from Belgium.

2. I found Mr Jake Timothy in leeds is better than most UK neurosurgeons at examining scans & identifying problems. He does offer remote consults but only works privately now.
   He identified my CCI and JV compressions & carried out C1 trims & spinal fusion.

3. If you have not had a Venogram inside brain performed yet this may be worth considering as it could help to identify problems with pressures/compression or other issues. National Neuro Hospital at Queens Sq London (part of UCLH) can perform these at reasonable cost but sadly their radiology reports often lack any detail as they report “by exception”. They do have private patient ward & I have seen overseas patients visiting there.

I hope you find some help soon. I think trying Plavix, Low dose Aspirin or blood thinning drugs are worth you trying while you seek a solution.

Take care. D

[GodisAWESOME]

Hi ChristinaBabylon,

I felt I needed to reply to your post, as I have nearly exactly the same symptoms as your husband. My symptoms, however, have included extreme BP spikes that come out of nowhere that make me feel light-headed as like I’m going to faint. I have many other symptoms, which are the other ones similar to your husband’s symptoms. I have been to numerous specialists, including Mayo Clinic and University of Florida Shands, with no answers. My symptoms started in 2020. My records have been sent to UPMC in Pittsburgh, PA for review and possibly virtual Consult as to what they think is going on.

I was hit from behind in a car accident around 1983. I did not notice any issues, so I never saw a doctor at the time. Since I started having so many symptoms since then, I consulted with a Chiropractor who believes the C-1/C-2 area has been affected by the accident, which he said can take many years to show symptoms. He said until I see a Board Certified NUCCA Chiropractor, I will remain on this merry-go-round of off-and-on again symptoms. My symptoms are sometimes cyclic, and vary in intensity of pain and discomfort, but never completely go away. I am in one of these cycles of low pain and discomfort now and have not had a BP attack since February. I feel fortunate.

From extensive research I did in my own case, I believe I had untreated Intracranial Hypertension, as I would feel IMMENSE PRESSURE inside my head like someone blowing up a balloon inside. However, because I did not “meet” every check box of symptoms for Intracranial Hypertension (meaning I was not of child bearing years, I was not overweight, etc., it was believed I could not have this, although the experts are wrong, because I had an uncle who had this condition). I also had EXTREME POUNDING inside the lower back of my head that was WORSE DURING THE NIGHT. I found a pattern where I noticed that the pressure and pounding started elevating worse between the hours of about 1A-7A; this was a nightly occurrence. The pounding pain was so great that I had to sleep sitting up off-and-on for about 2 years to try to get even a tiny bit of relief (but it was extremely hard to sleep sitting up). I developed 24/7 tinnitus in 2021 and then the pressure and pounding pain in my head greatly lessened. I theorize that the Intracranial Hypertension - no one was willing to do a Lumbar Puncture on me to determine this - gave way finally to Intracranial HYPOtension, thus the ease of these two symptoms. However, it was then thought I had a CSF leak, which I could have had, but I think resolved on its own. So then things got better until I finally decided to see an Upper Cervical Chiropractor, who had good intentions, but maybe because he was not Board Certified in NUCCA upper cervical, specifically (he was a Board Certified Chiropractor, otherwise, just not in NUCCA), I think he over-adjusted in October last year and I think this gave way to ALL my symptoms returning. To be clear, I had a myriad of symptoms, from extreme sound and light sensitivity (being on the computer I could feel the pressure building in my head which would then cause me to feel light-headed and immediately cause my BP to rise to EXTREME levels), eye phosphenes, tingling/numbness of arms/hands/legs/foot (but not every day), throbbing, pulsatile tinnitus (all in lower back of head), light-headedness, BP spikes and extreme BP Attacks, to nausea. The only medication that helped me was 25 mg Metroprolol Succinate 2 x day, which was used OFF-LABEL for the “migraine-type headaches” I was having from the pounding head pain. I was told if it was going to work, it could take 2-3 weeks, and that’s when I DID feel a difference. But, the symptoms did not totally go away, they just lessened and were more BEARABLE. After doing more current research, I do think Plavix (which is not the best medication to be on, but worth trying to see if it would help and then go from there regarding alternatives) or a natural blood thinning med/supplement might help if your symptoms are anything at all like mine. Since I am doing better right now, I am not taking anything at all and THANK GOD FOR THIS!!! If you think I can be of any help to you in clarifying my symptoms, what tests I have had done (which are NUMEROUS), please reach out to me.

I am so sorry to hear about your husband’s ordeal, because in so many ways it sounds like me. The eye symptoms are somewhat different, but I did have off-and-on eye issues from seeing “yellow” when I walked into a room (short-lived) to the unusual eye phosphenes that no one has quite been able to explain. I also had (and still have) off-and-on dry eyes and painful eyes, especially in the morning). I did see Mayo Clinic Eye Specialist due to concerns of possible peripheral vision deficit; I am being followed at this time to be sure nothing evolves regarding this.

I should point out that I had several brain MRIs done, but it wasn’t until an astute Radiologist recognized tortuous vertebral arteries possibly compressing the medulla (of brain); I think there is some thought that this could be causing the BP issues and myriad of symptoms, affecting possibly cranial nerves, etc. The other thought is possible cranio-cervical instability, but that is more from my research, not the thought of any specialist at this time.

Also, I should note that when I saw the Chiropractor, he did a CT Cone Beam X-ray that revealed elongated styloids, so I was going to rule out that this was causing the problem, but the doctor I was going to see in NY for this - Dr. Constantino - said he could not even start to address Eagle’s syndrome until my BP spikes and the extreme BP Attacks were controlled, which was ironic, because if the elongated styloids are causing the problem, I would need the surgery. Ugh!!!

P.S. Even though sleeping sitting up or standing did not totally relieve the pounding pain in the back of my head, it did help the tiniest bit to get any kind of relief at all - because as your husband knows, ANY relief is better than nothing. In the early years nothing helped me, i.e., Ibuprofen, Tylenol, Aleve, Baby Aspirin, etc. My help was THE LORD - and STILL IS THE LORD! I will pray for your husband to be healed.

May God miracously heal your husband because ALL THINGS ARE POSSIBLE with God!!!

[ChristinaBabylon]

Sorry for the delay in replying to the last few posts. Last week was pretty crazy with my husband going to the emergency.

This time, a new symptom appeared. My husband woke up in the middle of the night unable to move his eyes or lift his left arm. We thought it was a stroke or something, but after 4 days in hospital it turned out not to be. The doctors couldn’t tell us what the problem was. They concluded that it was “because of stress” … I laugh softly because I have the impression that this link to stress is the doctors’ argument when they don’t know what the patient’s problem is and they don’t want to say they don’t know.

In short, since returning home my husband has had no more episodes of arm paralysis, but we think this probably has something to do with the fact that my husband did some eye muscle relaxation exercises the day before. He hasn’t done anything since.

Thank you @CoHDa for your reply. Yes, I’ve also seen Rob Gevers and Richard Hoctin-Boes. It’s a bit far for us, especially by train, and if there are regular sessions. We found another person doing this type of treatment in Belgium, but my concern is that there seem to be quite a few opportunists in this discipline. Anyway, this person seems serious, so we’ll contact her for a first appointment.

My husband didn’t have strabismus as a child, but he also had to wear glasses at a very early age for sight problems (hypermetropia). These were quite bearable until we met at university. It started with slight visual fatigue during exam time, then fatigue at the end of the working week, then every evening and so on. The other symptoms (dizziness, headaches, tinnitus) came later. My husband and I are convinced that there are several problems in his case: a problem linked to a vascular aspect (a compression that persists somewhere after the operation?) and a purely visual problem. We went to see yet another ophthalmologist this afternoon, who testified to a convergence and accommodation problem, but she couldn’t explain it … according to her, it’s stress … I guess it’s easier to say that than to look a little harder.

Thanks for your support

Thank you @PatientD for your advice on the Moorfields Eye Hospital. Very interesting. As far as I know, it doesn’t exist in Belgium, but I’ll look into it.

As far as the venogram is concerned, I think that’s the test that will be carried out in Montpellier at the end of the month. When I read about the procedure, I get the impression that it’s the same thing.

My husband regularly takes blood-thinning drugs such as aspirin (nothing stronger), but before the Montpellier test, he was asked not to take anything to avoid distorting the test results… In any case, it helps a little, but it’s not a long-term solution.

Thank you @GodisAWESOME , I’m so sorry for what you’ve been through.

I have to admit we are not super fans of chiropractors. My husband went to one a year or two ago and it really didn’t help, on the contrary (as in your case) it probably created irreparable damage. Anyway, the specialists you’re talking about (NUCCA) don’t seem to practise in Belgium or even in neighbouring countries. I saw in a document that these specialists are mainly interested in the Atlas area. You should know that my husband underwent atlas realignment treatment in Germany last year, which helped but was only a minor problem that aggravated the overall problem.

Thanks for the Plavix, as I said above my husband takes aspine regularly to thin the blood but nothing stronger. We’ve also started a cure with a whole series of food supplements based on an article about intracranial lesion problems in American soccer players and the treatment they tested in the article (fish oil, gingko biloba, vitamin D, magnesium, l-carnitine, and vitamins B1-B2-B6-B9 and B12). In short, nothing miraculous, but at this stage we’re ready to try anything.

I’m keeping my fingers crossed that your symptoms don’t get any worse, and wish you never to have to relive the extreme situations you’ve been faced with

As far as possible scans are concerned, I’ve finally taken the time to select some that may be of interest.

Please send me a personal message if you are willing to look at my husband’s scans, and I will send you the links and passwords.

if anyone can find just one little clue from the images that will help us understand all this, wow, that would be great!

Thanks to all those who have sent us their support and helped us in our thinking.
We’re far from having found a solution, but we have to believe in it.

[Jules]

I’m sorry that your husband has had worsening symptoms & had to go to the emergency room…unfortunately the stress diagnosis is all too common, & I agree with you that it seems to be something doctors fall back on when they can’t find a cause, or don’t want to look any deeper…

[GodisAWESOME]

This is just a quick reply, but apparently aspirin doesn’t work the same as Plavix because on this site I’ve read more than once at several people were helped by Plavix, specifically. I myself have not tried it, but right now I have been doing well since February 24 and I am ELATED - after 4 years. I’m a Christian and I believe it is answered prayer by so many who have been praying for me over these years. I have a few very mild symptoms and sometimes my heart rate is a tad high, but I am experiencing very noticeable improvement in my symptoms. I personally feel it’s probably been an upper cervical issue that aggravated when the chiropractor did the last adjustment and since then God has brought my spine back into alignment and thereby the head symptoms are improving. I give ALL THE GLORY to GOD for this happening and my miraculous healing. I will pray for your husband’s healing. So many of his symptoms were very very similar to mine so I hope that he too will be able to have some resolve.

May God bless you and your husband.

Julie

[ChristinaBabylon]

Hello everyone,

I would like to come back to you regarding my husband’s medical images. Is there anyone who would be willing to look at them in case we missed something?

I found a website on this forum that anonymizes the images. I’m sending you the links to the various images.

Please, if you have the eye to find abnormal details do not hesitate to let me know, all your remarks are really welcome.

Here the carotid-vertebral angiogram who has confirmed the vascular eagel syndrome.
https://www.dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.1.20240514212712745.45829760107974427473

Finally, the exams he just had during his stay in the emergency two weeks ago (two months after surgery)
CT-scran cranium https://www.dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.3.20240511231510842.76467704253587237703

Cerebral CT angiography :
https://www.dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.3.2024051721374363.502927964694714574066

Cervival spine scan :
https://www.dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.3.20240517145852832.79430286521588085025
thanks a lot for your reading

[Jules]

Some of them won’t open for me, hopefully others with more experience will be able to have a look, sorry I can’t be more helpful

[borko2100]

He detected a slight descent of the brain’s cerebellar tonsils from the foramen magnum.

Sometimes having high brain pressure long term from Eagle’s or other reasons could trigger a CSF leak. It is very difficult to detect or diagnose, but a sagging brain (descent) on a MRI is one of the few signs that points to it. This happens because the brain is usually floating in the CSF liquid, but if there is not enough CSF, the brain does not float that well and sags. CSF leaks are often triggered by accidents.

But you say that he is worse when he is lying down, with CSF leaks it is the opposite, i.e. worse standing, better lying down. However I’ve read that if the leak has been present for a long time posture no longer plays much of a role.

Maybe it is worth finding a specialist who can check for leak just in case. It is usually done with a contrast agent injected with a spinal tap and then a MRI or CT of the whole spine (the leak could be anywhere along the spine). But you need to find someone knowledgable, because this condition is even more rare and difficult to diagnose than Eagle’s. I read that only until recently (~10y ago) a very large percentage were missed, even with the scans I described.

EDIT: I tried checking out the scans to try and compare pre and post surgery CTs and see if the veins expanded, but for some reason the dicom site is very slow i will try again later.

[borko2100]

@GodisAWESOME. I am very happy for you, I hope your improvements remain!

I’d also like to report a similar improvement I had around ~2y ago. I am not sure what I did that triggered it, but some of my neuro symptoms almost disappeared for about a month or two (many others did not budge unfortunately). This disease and other neck / spine diseases in general can be so unpredictable and weird.

Looking back at it, it could have been several things I was doing differently:

• It was summer and quite warm, maybe the infrared radiation benefited the blood vessels somehow.
• I had to force myself to be more active and move more (which is usally very hard for me)
• But the main thing I suspect is the neck training I was doing daily. I never put 2 and 2 together and made the connection then, but now that I know what’s wrong I strongly suspect that was the reason. I am planning to try it again, but now that I know I have a neck hernia aswell besides the vascular issues I need to be extra careful this time.

[Isaiah_40_31]

Thank you for sharing your thoughts on what might have helped your symptoms improve, @borko2100. All of what you said makes sense, but the neck training may have been the most helpful. We’ve had other members note their symptoms eased when they began working on better posture & improvement in their cervical spine curve.
I hope you report to us again to let us know if doing the neck work helps this time, too.

[ChristinaBabylon]

Thank you @borko2100 for your reply. I’ve also heard about this cerebrospinal fluid leakage syndrome, but it’s unlikely that it concerns my husband, as this disorder calms down when he’s lying down. As you may have noticed, with my husband, lying down makes the problem worse.
I’m really looking forward to our medical appointment in Montpellier at the end of the month, and what it reveals (or not) will enable us to make progress in understanding the problem (I’m keeping my fingers crossed anyway).

Yes I’ve noticed that some links seem very slow I don’t know what it’s due to. I hope it will load correctly. In the worst case, I have the data to the official links that I can transmit by private message.
I’d like to follow up on your reply to @GodisAWESOME

We have also made the same observations as you:

1. Heat has a small positive impact on symptoms: my husband regularly goes for sauna sessions at a spa and it always does him good.
2. Periods when he has the energy to do more exercise are also beneficial, but you have to get past the general exhaustion and then the fatigue is intense, so it’s not easy to set up a regular program.
3. You say you’ve been doing exercises in your neck area. My husband has already noticed that certain exercises can help improve the exercises, but sometimes it makes them worse, so you really need to know what’s good and what’s not and be accompanied by a professional who knows what he’s doing (not easy to find, everyone will agree ).
4. At the moment my husband has come across a couple of osteopaths who seem very interested in my husband’s case and who have given him exercises to relax his neck (as there is a lot of tension). According to them, my husband’s symptoms (within the scope of their expertise, it absolutely doesn’t exclude that there are other problems which they don’t have the expertise to diagnose) my husband would have a bad position of the brain stem which could lead to compressions (notably on the oculomotor nerve (III), abducens nerve (VI) and trigeminal nerve (v)). What’s interesting is that this involves nerves that have an impact on the eyes (my husband’s biggest symptom) and more generally on the ENT sphere (my husband has already found that the position of the jaw, whether open or not, has an impact on eye health). So that seems to be a good assumption, now let’s see what they suggest to help him in the long run or not.

Thank you for your answers, I keep repeating it but it’s really very precious.