Extreme and unbearable symptoms two months after surgery

General
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Two and a half months ago in July for one week prior to left-side surgery I had gastroparesis so severe that I couldn’t eat a single mouthful of food. This seemed to resolve immediately after surgery along with most of the shoulder and neck pain.

Two months later the symptoms are back with a vengeance. I can eat some, but very little bland foods, and I’m rapidly losing weight. After an endoscopy I was diagnosed with mild antral gastritis but that seems like an insufficient explanation for the severity of the symptoms. I also have pain behind the left ear extending up into the left side of scalp, intense neck and shoulder weakness and flu-like body aches throughout the body. I have intense fatigue and have become even more extremely dependent on my parents to support me.

I have great trust in my surgeon, Dr. Kamran Aghayev. But my first thought was that the styloids had grown back. I had a CT scan and they haven’t. My surgeon had done a C1 shave as well.

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The stumps of the styloids are about 6mm long. When asked why they weren’t shaved back to skull base, Dr. Kamran had this to say:

“The length of the remaining parts are about 6 mm which is sufficient. Please note that facial nerve is passsing just lateral and in touch with styloid process. Further manipulation above endangers facial nerve and leads to facial palsy.”

This seems like a convincing explanation. But is it consistent with what other surgeons choose to do? Is there any literature on it? My persistent symptoms are originating from the left side. Should the styloid have been removed further?

What other sources of compression are possible in this area? My surgeon is very open to possible explanations but I need some clue. Some evidence. Some piece of literature or case study to show him to do what needs to be done. I believe he did cut the digastric muscle so that’s not it.

When asked if scar tissue could be recompressing the nerves, my surgeon said: “Scar tissue is like scapegoat in surgery. Everybody tends to blame it. Interestingly I have not found in literature any mention of it as a cause of recurrence”

And I have no vascular symptoms or headaches.

Are there any other surgeons I should email my scans to who might be able to find out? I would greatly appreciate if someone could send me their email addresses.

If only the symptoms weren’t so extreme. I feel like I’m barely holding on. I never thought things would get this bad in so short a time.

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I would greatly appreciate if someone could help me out with getting the email addresses of prominent doctors.

Also I would like examples from this forum of unconventional sources of compression, eg. scar tissue recompression and relief from scar tissue removal surgery.

Is there some kind of compression that can happen near the jugular foramen and is there any evidence for it?

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Im truly sorry for this major setback, @Bowser. The symptoms you have could be coming from irritation of your vagus nerve as it controls the gastrointestinal system. I don’t know if it could also be causing the pain in your neck & scalp though. It is curious that you felt good for a couple of months & suddenly your symptoms came back worse.

I believe your styloids are plenty short enough that they are most likely not causing your symptoms. Different surgeons have different philosophies about how short is short enough when respecting the styloids. Some only shorten them back to normal length (2.54 cm) which can be enough but in most cases isn’t. Some cut them back o 1-2 mm which is extremely short but is not always possible for every patient due to the location of the facial nerve as Dr. Aghayev told you.

If you’re able to get a FIESTA MRI of your vagus nerve to look for damage or compression of it, that could be helpful.

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I’m so sorry too that you’re back to feeling so bad…I agree that it sounds like the vagus nerve is causing some issues, if you read @GrnyAny’s post about vagus nerve healing you might see similar symptoms, and if you see how long it’s taken her to resolve issues then that might give you hope. It sounds also as if you could have Trigeminal Neuralgia or Facial nerve neuralgia causing the head pain, & maybe the accessory nerve is being irritated too causing the arm weakness.
If your symptoms resolved initially then it sounds as if the surgery was successful, we have seen other members whose symptoms have come back- whether it is scar tissue I don’t know, it’s worth reading up on that here as there have been posts about things members have tried, cold laser therapy being one of them. I think there have been other suggestions but I can’t remember off hand! I think some of the vascular ES doctors have removed scar tissue, I’m thinking Dr Hepworth has done that, more for IJV compression, here’s a link to one discussion mentioning adhesions:
Stylo-jugular venous compression- what to expect next? - General - Living with Eagle
And @TheDude saw Dr Hepworth also for scar tissue compressing the IJV:
Jugular vein compression after surgery - General / Eagle Syndrome Stories - Living with Eagle
Other members have mentioned muscle compression- the digastric muscle is a common one- if yours was cut during surgery is it possible as it’s healed it could be pressing on the nerves? The SCM muscle can affect the nerves too, & the omahyoid muscle, and we have had members who have had compressions by blood vessels and other nerves. As @Isaiah_40_31 says, a FIESTA MRI if you can get one may well show what is causing the compression if anything. I can’t think at the moment of any research papers talking about this, it’s more anecdotal from members on here. I don’t know that any other doctors would be able to see anything from your CT to know what’s happening, as it’s the nerves which need to be seen, so not sure that sending them to anyone else would be helpful…
Is there any chance you’ve overdone things whilst recovering, and now it’s set healing back?
I will try & find some posts on scar tissue, but sending you hugs and prayer that this will go as quickly as I came back :hugs: :pray:

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Would a course of steroids maybe help settle things down? And I don’t know about nerve pain meds, if you’ve had them before, & did they help?
Just reading your other posts, you mentioned your surgeon’s technique for preventing scar tissue, did he do that with this surgery?

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I was diagnosed with H. Pylori infection and am now on antibiotics. Hopefully things will clear up now.

The recovery was already extraordinarily difficult with a lot of pain. Combine that with gastric irrition from an NSAID called Meloxicam (15mg), combined with a H. Pylori infection produced a truly unholy trinity of symptoms. Initially the infection symptoms mimicked the gastroparesis I experienced prior to surgery which left me terrified.

I’m still in quite a bit of physical distress, but I guess there is very little evidence for any lingering compression. I have hope now that things will get better eventually. There is nothing to do but wait.

I think the biggest misstep in my case was not doing both sides at the same time. Back in April when I had right-side surgery, I barely had any pain period and my left side had very minimal symptoms. From May, there was a massive explosion of pain on my left side, and I could get left-side surgery only in July. Accordingly the recovery is very difficult as well. If both sides had been done at the same time, I would have had a much easier time of it. Hopefully I will get significantly better by January.

The reason my surgeon decided not to do the left side was because both my transverse sinus vein and jugular vein were completely and permanently occluded on the left side. Dr. Kamran believed at the time that jugular vein decompression was the primary goal of the surgery (all the literature supports this) and did not believe that a side where the vein was already permanently occluded required surgery.

He was massively surprised when I subsequently had severe symptoms on the left side. He said that the idea that the styloid can irritate the cranial nerves even without jugular vein involvement was not really something that had been previously described in the literature.

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Wow, that’s amazing. Did your doctor raise the possibility of stenting your transverse sinus?

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Had you ever been on meloxcam prior to surgery? I am now cycling through pain meds to see how they effect me because i have genetic problems with meds. Most people dont have the genetic tests to determine this issue.

I am doing self experimentation using niacin as the cataylst since i have had wild crazy symptoms in the past similar to a niacin flush. The results have been interesting. Havent tried meloxcam yet in the experiment. Ibuprofen has never helped for anything so no surprise it didnt help with niacin flush as it is suppose to do.

Meds are a tricky thing to deal with and your genetics can have big influence.

by the way, without getting into the weeds of medicine pharmacology if you have had an issue with a med or combinations of meds you can look here to see what may be at play. Keep in mind this list does not encompass emerging issues. Case in point - Plaquenil. Research shows problems as a substrate but they want to see more studies on it. Many of the meds taken by people on this site are on the list.
https://drug-interactions.medicine.iu.edu/MainTable.aspx

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I’m sorry that you had to wait, although having both sides done at once is generally a tougher recovery, & many doctors don’t do it because of the swelling…So was your styloid occluding the IJV completely, or is something else affecting it? And what does he think about the transverse sinus? It does sound as if the set back symptoms you’re describing sound more like nerve related. You haven’t had any sort of virus or anything prior to the symptoms coming on have you?

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I disagree with Dr. Aghayev on this as many people do not have any sort of vascular compression with ES, & their symptoms are strictly from cranial nerve impingement/irritation by the styloids. There is significant medical research documentation on this topic. You’ll find articles in our Research Papers category on the home page under the General heading.

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I have seen many Doctors across many fields while tracking down the rare and not so rare problems that I have. I couldn’t even count them there have been so many. Invariably, I will ask about something I have seen documented in research studies and they have no clue what I am talking about. From the most basic such as studies showing steroid injections in knee can cause damage to cartilage (knee surgeon Doctor never heard of it but it might have been the resident who said that to me) to the infamous claim from an ENT department in Indianapolis, IN that told me that Eagle syndrome can’t cause problems with the jugular or carotid artery . My mouth literally dropped open when I heard that and I blurted out “I’ve seen the studies!” And now, I have the evidence I have exactly that…and even then after reading what the neuroradiologist said about my styloids and my IJV the Doctor put a note in my file that I did not have Eagle Syndrome which they kind of retracted.

My point to this post is that the many Doctors across many fields that I have been to don’t seem to keep up with the latest studies - even Surgeons.

By the way, as a side note I had one Doctor say I was perfectly fine and I didn’t need all these tests. He said it three times during that consultation and even said “Who is ordering all these tests? You don’t need them”. Part of me wants to go back to him and say, " Are you sure about that!!!"

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Thank you for this post, @JugularEagle. I think there are so many research papers & so much medical information out there that at some point, doctors just focus on the areas of medicine that interest them most. What I wish, though, is that instead of speaking authoritatively about subjects they haven’t kept up with, they would plead ignorance or at least offer a referral to another specialist who might have some knowledge of what might be causing the symptoms a patient has.

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I felt that the antibiotics helped for the first few days. Now I feel like I’m deteriorating rapidly. A few mouthfuls of food causes severe regurgitation which keeps me up all night. I have intense fatigue. I feel it in my bones that the left vagus nerve is involved, but I don’t know how.

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Your symptoms sound terrible, @Bowser! Is it possible for you to get a FIESTA MRI to look at your vagus nerve in the neck area to see if it’s kinked or being irritated by something? It could also be irritated further down which could also be looked at w/ the FIESTA scan. The cause of nerve problems can be very difficult to diagnose.

I’m very sorry the antibiotics didn’t help. Are you done with the full course? Has the gastroenterologist done any further investigation into the possible cause?

Here’s the link to @GrnyAny’s post about her vagus nerve journey. There may be something there that can help you. Successful Surgery for severe Vagus Nerve Compression - #8 by Jules

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I’m not sure where to get a FIESTA MRI in India. A Google search doesn’t turn up anything. Perhaps there is a different keyword that needs to be used?

I am only halfway through the course of antibiotics. While they reduced the stomach discomfort, they haven’t helped with the gastroparesis. Food feels like it gets stuck in the stomach and doesn’t move.

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Fiesta MRI is associated with a particular brand of machine. It is called something else if you use a different brand . We get many medicines from India manufacturing but not sure how up to date your machines are with software…we apparently have a hard time finding anyone who even knows what it is in the US.

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Are you taking a prebiotic & probiotic alongside your antibiotics, @Bowser? The antibiotics will kill off your good gut flora so you need to be replacing it during the time you take the antibiotics. I can’t recall the exact timing, but I think you need to take your pre/probiotics about 2 hrs after your antibiotic meds. That may help the gastroparesis. High quality yogurt w/ active cultures is one way to get good probiotics into your system, but there are many types of pre/probiotic supplements available on the market today, too. You’ll want the best one you can afford. Another suggestion is to really hydrated yourself. Drinking 60- 80 oz of fluid daily may also help w/ the gastroparesis. Things with lots of sugar or caffeine actually dehydrate you so try to drink water or herb tea. It’s ok to work up to that amount of fluid as it seems like a lot at first. Your body will thank you.

You can try looking for MR Neurography or CISS (Constructive Interference in Steady State) scans instead of FIESTA (Fast imaging employing steady-state acquisition) MRI.

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I will tell you about a test you can have run but Doctors dont know what to do with it. ALP isoenzyme test. My test came back with 0 intestinal ALP but total ALP was normal. This is problematic. Has to do with brush border enzymes, etc.

I started really dealing with pro biotics. I have never run the test again to see if that made a difference but I feel that it does.

I can really tell a difference when I am trying to treat the issue but i dont have some of the crazy symptoms i see here .

If you are taking antibiotics you really have to deal with the gut flora issues.

I did a quick search on Ciss mri imaging in India. I cant link at the moment but found one in New Town for 4500 india money so if you search around you may find it. I just did a us dollar conversion and almost fell over. Less than 100 us dollars
Found Fiesta in New Delhi. So you just need to search the area closest to you.

I think it might be easier to get a fiesta mri in india than the US. I saw several systems that allowed booking the MRIs dirt cheap as compared to US. Of course, you need to make sure their reputable because person reading the MRI is important.

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Thank you. When I look for CISS MRI it’s available in a city near to me.

I have seen FIESTA MRI mentioned several times, but I’m interested in cases on this forum where a FIESTA MRI successfully revealed some kind of unique or unconventional type of compression that doesn’t fall into the traditional category of Eagle syndrome, and whether this was subsequently resolved using some unique surgery.

Should this MRI be done with contrast for the best possible image? I’ve read about several risks associated with gadolinium contrast toxicity.

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The person I contacted said they do CISS MRI of brain only, not neck. Is that sufficient? Surely you need to do the neck as well, to visualize vagus nerve?

They say by definition it is done only on brain.