New here, been a member of livingwithtn for a while

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I've had the worst cranial pains for almost 2 years, atypical cranial neuralgia. I went as far as having an MVD surgery on the trigeminal nerve back in April....pain went away for 7 weeks completely before coming back. 7 weeks for $74k lol

So I went to the ENT while waiting to get in with my neurologist after the pain came back, and the source of one of my pains in the back roof of my throat, he believes is the calcified thing. I did a CT and he said it's long on both sides, injected lidocaine into the back of my throat and it seemed to help so he referred me for surgery.

I went to my neurologist and he said it's in no way related to the nerve pain in the front of my face, he's 100% certain, but I'm going ahead with it anyhow to rule it out.

Meanwhile I take 125mg of nortriptyline, 120mg of cymbalta, and 5mg percocet. I was also on 1200mg oxcarbazapine but I weaned off after my MVD.

Here's my scar from the MVD:

538-surgeryscarsmall.jpg (147 KB)
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Hi shindig. So sorry about all your medical issues. I just had a right intraoral styloidectomy July 25. One of my constant symptoms was a burning radiating pulling pain & numbing feeling on the right side of my face, under my eye and mouth and lips. After my surgery, I haven't experienced them. Granted I am still healing but am hopeful they are gone! My surgeon took out 2 1/2 cm from my right styloid that was curving inward toward my spine. My surgeon told me the 3D CT Scan didn't show clearly the end of my styloid and he was surprised it curved inward that much. Sometime scans don't pick up on important things like that and don't tell the rest of the story about pains. I truly believe my styloid bone was pressing on the nerves that affected my face having gone through that pain for five years. I disagree with your neurologist on that issue. Wishing you an uncomplicated surgery and a swift uncomplicated recovery. I will keep you in my prayers that all goes well for you. Take care and God bless!

Viperbone w/o her curved viperbone

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wow, that is alot of money and a huge scar for something that did not work, I am so sorry! I hope you are able to get to the root of the problem and if it is ES and get the styloids out. I hope you get relief soon! Did they not notice your styloids before the first surgery?

RB

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No they didn't look at the styloids before the first surgery. I'd been seeing neurologists and had 3 MRI's over a year and the only thing they turned up were compressions on the Trigeminal nerve so he sent me to the surgeon. Now I have a titanium plate covering the hole and teflon pads wrapped around the trigeminal nerve.

I went to the ENT for the first time a month ago and after showing him the point in the back of my throat where I have terrible pain he said it could be ES and scheduled a CT. At the follow up he injected lidocaine back by the tonsil and the pain there seemed to relieve. He checked my CT and said the styloid was long so he referred to surgery for ES.

I also have a pain behind my left nostril which I think is causing the nerve stuff in the cheek. But the worst pain I've had is the feeling of an ice picks tabbing through the inside of the eye back to the tonsil. He said the growth on the MRI in my sphenoid sinus was weird but he doesn't know, said he was going to take it to a tumor conference.

When the pain started a couple years ago, the left half of my face went numb and I get a burning tickle/tingle/numbness to my pinky and ring finger on the left side where my pain is. Also a "knot" feeling in the side of the neck. Then it turned to pain. The worst burning, searing, tearing pain, constant all the time.

I scheduled the ES surgery for the 20th so I'll know soon enough if it's related.

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Hi shindig. I had facial pain and eye pain before my right styloid was removed. I still have sinus pain behind my right nostril. I had surgery in April so I'm hoping it will go away eventually. Do you ever get jaw pain or ear pain? -Dawn

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Shinding,

Ouch!!!! And that really sucks!!! Are they removing it intraorally or extraorally through the neck? I hope that having it removed will give you some over due relief.

I am symptomatic on both sides but the right side is the dominate side that likes to make me beg for mercy. I have/had a painful knot on the right side of my neck for over a year.

I have facial pain, eye pain, teeth pain, sinus pain, occipital pain, neck pain, ear pain, jaw pain, scalp pain, etc.... along with the pain in my upper chest/pectoral & in my shoulder running down my right arm into my wrist (like I have a tight rubber band on it all the time) that goes into my thumb, pointer finger, ring finger and pinky. The pain runs down the back of my neck into my trapezius muscle and around my scapula into my ribs on the right side.

I am 2 weeks post op after having my right side removed externally. 24 hours after having the right side was removed I had pain in all of the above 100x's worse than I ever had before. I am now back to the pain level I was before the surgery in all of those places. I hope it will get better with time.

I have multiple issues from the chest up. I also had my C5-C6 fused in my neck 3 1/2 months ago. I have to get my left styloid removed and I have a severely deviated nasal septum with a spur that could be causing some of my facial pain. I have not been diagnosed with Sluder's neuralgia at this time but it is a possibility concerning the septum.

I will also be seeing a vascular surgeon to rule out or in Thoracic Outlet Syndrome concerning my right arm, right pectoral, shoulder, trap, etc.... Since I have a calcification in the upper right lob of my lung and I injured my right arm/shoulder over a year ago it is plausible. That is when all the pain became so unbearable and I think that was the thing that broke the dam and we have found all these issues over time. Knowing is half the battle. Good luck and keep us posted on your progress.

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Damn that sucks having more pain after surgery. When I had my MVD I was feeling great from the moment I woke up in the ER.

The ENT said they'd go in through my mouth to chip off the styloid.

The neurologist said I should try the gamma knife rather than the ES surgery, but I'm 29 and that's a destructive process so I'm hesitant, but at the same time I'll try anything.

How much downtime do you expect from the oral ES surgery? I'm trying not to take off work more than I have to.

For a while with my neurologist we looked for causes of the nerve pain. He thought maybe thalamus pain syndrome but they didn't see anything on the MRI.

On the MRI there's a big blob in my sphenoid sinus, and it feels like something is pushing on the back of the left sinus, and everyone I've shown the MRI to said it looked weird but they weren't an expert and didn't know what it was. Even the ENT said he was bringing it to a tumor convention but I never heard anything else about it.

Behind it is the pain from the styloid...basically left of where your sinus comes into the back of your throat. It gets agitated and "flares up" and pain radiates from it.

I'm not sure if the eye pain is related or not, but when I move it in any direction I get a sharp stabbing pain deep behind it.

There's constant nerve pain on the front half of the face across all 3 branches of the trigeminal nerve. From my salivary gland forward to the eye, down the nose to the upper lip, and down the lower jaw, and across the temple to the forehead. It feels like a razor blade is in there cutting the skin away from the bone constantly. Sharp, searing, ripping pain.

The back of the throat, when flared up feels like digging at an open wound with a dental pick, just constantly poking and agitating. It sends shivers down my spine when it pulses.

For me the nortriptyline helped more than oxycodone for the neuropathic pain, but I can't up the dosage anymore and it's less effective than it used to be. I added cymbalta (similar drug) but have maxed it and still want to kill myself to escape pain.

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Hold on Shindig!, Let's not talk about that way to escape pain. Lets be practical and sort out what health issues should be addressed first. First, I understand being given the run around by doctors. I dealt with that merry-go- round for over five years. I learned that you have to be your own healthcare advocate and be aggressive to get answers to health care problems. In your case, the thing that is really concerning me is the big blob in your sphenoid sinus area. I would do a lot of research and push the issue with those doctors and surgeons to find out what the hell it is. I don't think that is something you can put off because it may be something far worse than Eagles Syndrome. That is the direction I would take at this moment. Sorry but I am concerned because I remember watching a health segment on one of the network problems with a man who had something similar and it did not turn out well. I don't want to scare you because it could be a big oversized polyp but some of the behind the eye and facial pains were similar to that man's. That is my own personal opinion. Please get that thing checked out as soon as possible. O.k. Take care of yourself and I will keep you in my prayers that you will be o.k. and make wise healthcare decisions.

With kind regards,

Viperbone

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Whoa!! Hang on there kiddo. I did not share my story to scare you or to make you think it is not ES or it will not get better. I understand what you are going through. Everyone heals differently. My pain maybe worse due to the back to back surgeries in the same area. I also have several issues that over lap in symptoms. For me all of the surgeries that I know I am going to have are needed. It will take a while and that is draining. I get so tired and exhausted from the pain too. But I continue to search for the answer and find good doctors. I continue to question them and expect answers.

Do not give up! I agree with Viperbone. Look into finding out what the blob in the back of your sinus area is. You may have more than just one issue that will need to be addressed. I am not waiting until I have my other 2 surgeries to find out about TOS. I should have been more clear when sharing my story. I am not waiting to see if the next surgery will fix everything. I am being my own advocate and everything found on all my images I am finding specialist to treat them or to rule them out.

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If it makes you feel any better I had the Mvd for no reason to was told I had a compression on the glossopharyngeal nerve ,don’t think I wrote that right,I still had symptoms after the eagles surgery don’t get me wrong it helped a lot and would do it again but want all symptoms gone ,he packed my head good with the Teflon I even got a video of my surgery on YouTube there is was no compression like he circled on my MRI I stared a little 4 part blog on YouTube still haven’t made the last video probly should (depressing) anyways look up eagle syndrome glossopharyngeal neuralgia on YouTube if you want to here me talk about my symptoms the eagles surgery isn’t nothing compared to the Mvd, good luck buddie

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Thanks Deleone, I was starting to worry about the ES surgery.

During my MVD there were 2 arteries and a vein compressing the trigeminal nerve so they stuffed teflon around it. I went back to work full time 9 days after brain surgery, it was bizarre but I felt great from the moment I woke up in ICU.

It's frustrating not knowing what the cause is. I've been to numerous specialists at 3 different hospitals, Swedish neuroscience (they came to diagnosis: "tolosa-hunt syndrome"), University of WA (gave diagnosis: "eagle syndrome"), and Northwest Hospital(diagnosis 'atypical cranial neuralgia" including TN). I have racked up over $100,000 in medical costs to my insurance, and am no closer to a solution than when the pain started 2 years ago. There's not really anything else to try after I do the ES surgery. The neurologist is saying to use the gamma knife to damage the nerve, but everyone tells me not to because I'm young and it's a permanent, damaging procedure.

In the past year I've had 3 mris, a spinal tap, every blood test imaginable, an endoscopy, a CT, etc and I've been through and failed treatments for "tolosa-hunt syndrome", "trigeminal neuralgia", and soon ES. And still have worst nerve pain imaginable, always, never stops, feels like an ice pick stabbing my eye every time I look left/right, going all the way back to my tonsil. Then across my cheek it feels like a razor is cutting it away from the cheek bone, or coating the bone in acid just constantly eating away at my face.

The same time the face pain started I got the same pain in my rib cage on the same side, right between the ribs and it feels like a combination of a cramp and pinched nerve, but it's always there, and it sends a shooting sensation to my armpit and down the back of my arm to my pinky and ring finger. No doctor has any idea why. I even got an endoscopy because I thought I had an ulcer it hurts so f****** bad.

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One of my worst symptoms before my bilateral styloidectomy was facial pain. Actually, far surpassing the IIH symptoms which were shitty in of themselves. I felt like someone was jamming their fingers into the front of my face and had a clamp being tightened around my head.

I was disabled, depressed and in a really bad place. One I had my surgery I have not had that pain since. Everybody has a slightly different anatomy. And for some, compression of one nerve branch causes referred pain to others.

If you had long calcified styloids then having them removed seems like a rather safe bet, or something to cross off the list. I know it sucks to hear it like and another surgery is no fun, but you need to do what you can do to get your quality of life back. You deserve that.

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Hi Shindig, this is an older thread but when I saw your comment about how your pain started it struck me how similar it is to the way mine started as well. Left half of my face also went numb and I also did experience nerve sensations all the way down to my pinky and ring finger, isn’t this bizarre? And like you numbness eventually turned to pain. Not as severe as yours but bad enough that at some point I was considering an MVD surgery but after consulting with two top US neurosurgeons they deemed there was no compression and what I have is not TN. I sure hope you have had styloidectomy and have found relief from your symptoms, wishing you the best :heart:

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