I was at the doctor and apparently he had somebody re-review my MRI from back in April. Not only do I have signs of nerve compression, I also have something called Petrous Apex Cephaloceles – a lesion inside a spot in the brain called Meckel’s cave .
I was diagnosed almost a year ago with TN, just on my right side of the face
My pain meds keep going up and wearing off so we were talking about surgery (if and when I need it, in a year or two) and he said this complicated matters.
I am just scared. He said the lesion is in the brain is much deeper than the vascular compression but that either one could be causing the pain. So he is consulting with a nuerosurgeon.
I have also had some other scary nerve stuff happening (pudental nerve pain/numbness – the ladies get this, you can Google it.) I have a different doctor for this (pelvic floor specialist) but I keep thinking – could it be MS? Etc
He didn’t say if the lesion is a tumor, or a cyst, or what. How can they tell?
I don’t know what to say expect this sucks. He previously has said I was an excellent candidate for surgery. Now I’m not so much because they don’t know which is which.
If you know anything about this – can you share any experience? I’m kind of feeling crazy about this because the information changed all of my assumptions on how this disease will progress. And it’s definitely progressing. So I am feeling scared.
Petrous Apex Cephaloceles, are more often than not, are not problematic but are incidental findings on MRI, meaning it’s there but unlikely to cause a problem, not to say it isn’t but rare.
How anyone can say surgery in a year or two, kind of says lets see how this pans out, as in they don’t know, but the time frame will help with our decision making- we haven’t a clue.
I’m sorry I can’t be of much help, but your medics at this point in time know nothing, and as such please don’t feel scared, to date you have had no bad news, consultation with the neuro isn’t going to clear the mud, just add an opinion.
At this point in time relax, take care of yourself as best you can and enjoy what you can. Don’t worry yourself to death, absolutely no need.
Well, something IS causing my problem and it’s getting worse, and they can’t say if it’s the vein around my nerve or this other thing. So of course I am scared because the breakthrough pain is getting worse and more frequent. They don’t know and can’t know if this or the nerve caused the TN – but they DO know that this new thing may rule out vascular decompression because it’s too close to the trigeminal nerve to ignore.
I went from 450 mg twice a day two months ago to 900 mg twice a day. Every month for the past 3 months I need more oxcarbazapine. And I am having other nerve problems. So I am scared. But I appreciate the opinion.
This stuff sucks so bad-but it seems like most people end up bumping up their meds.Today nothing worked for me-so I took an old clonazepam and it brought the pain level down to something tolerable.Good luck,and take care of the pain.
Yeah, it sucks. That’s for sure. I have been minimizing how bad it’s been lately and I swear that’s made it worse. I have a problem admitting that I feel breakthrough pain all the time. Like I’m disappointing people.
But when they tell me I have a new thing, I felt a little better at first, like that somehow justifies this pain. That’s the awful approach I take to all my chronic pain. I hate going up on meds, but I hate pain.
All my pain is breakthrough pain now.My MRI showed that I might have an infection of my mastoid.
I like to think that I am an old car and if they look they will find lots of things.Somehow ,I have adjusted.
However,this pain stuff is driving me crazy,and my specialist doctor quit,just like that.So I am scrambling.
I tell the doctors how it is.I tell them I am in pain and the treatment plan is not working.I tell them I can do one more year like this ,but that is it.
Let them sort it out.
If I need pills I take them.
Try and think of happy,smiley stuff.
As Aiculsamoth has suggested, a lot of different kinds of “lesion” can be involved in Peterous Apex Cephaloceles. Most are “incidental” - meaning not a specific cause of a specific outcome or symptom. Such features might not warrant surgery.
If you want to read in some depth about these variations and their significance or lack thereof, the following long paper may be constructive: http://www.ajnr.org/content/22/10/1867.long
My doctors have found more than one birth defect in the past year. So it’s all kind of weirding me out.
I like the car analogy!
I’m like a car with some of the wrong parts or put together by a non-pro. I have a congenital heart defect, too, that functions “abnormally” but doesn’t function in a way that could cause a heart attack. It took a lot of worry and sweat for the cardiologist to figure this out.
I’ll just take the pills. I get so stressed when I realize how tired they make me, but the pain takes away my ability to focus, so I guess it’s a trade off. Also have been using the wrong words etc. when I went up a dose but I think that will go away. I’ve had that before and eventually I adjust.
Doctor brought it up because he didn’t think it was incidental. I have a few other nerve pain issues so the Doctor (He’s at Georgetown University, so I do trust him and his colleagues) thinks that it could be pushing on my spinal fluid and causing a bit of sciatica.
I’ve been trying to “read up” but to be honest, about 80% of the stuff in medical papers out there are way, way over my head. He told me it was super rare, and I haven’t seen anything but papers on the internet, so I guess it’s really really super rare. Scary part is that it also causes hearing loss, which I actually have in both ears and thought was ear infection related. I’ve never seen or told a doctor about it, but I guess it’s about time for that.
I have waardenberg syndrome-which is a very rare facial disorder.Now it seems that it might have been the cause of all my pain during dental procedures.And I don’t know how it plays out in trigeminal neuralgia.They are both extremely rare.The old doctor that just left knew the connection.None of the others seem to.
I am so glad that I am 60 and not 20.That is the one thing I am grateful for.
Replied to a different post before reading this. Had absolutely no idea of what waardenberg syndrome was, and in relation to facial pain having investigated said condition the link to facial pain, is, so far as I can tell, tenuous at best. I’ll take a further look.
Hi there
The scientist dentist I had said there was a link between trigeminal
neuralgia and one of the types of waardenberg’s.He is gone now.No idea where.No idea what type we have as it was someone who wanted to study us
way before google.The pictures on the web are our baby pictures(not
really-but we all look just like that,plus one of my kid’s and my sister’s
kid.)So whether there is a link or not I don’t know.I am sure if they
looked inside my head once I am dead they will say AHA.now we see why she
was in pain so much and why she needed to be tied into the dentist chair
for fillings.Please.if you find something.let me know-but don.t go crazy
looking.Tears in my eyes that someone cares enough to try and search it out.
I am going for physio therapy for my neck and had two of my very best
sleeps with no pain in the morning when she did cranial sacral therapy on
me.With Tens first with a warm wrap on my neck and an icy one a little
further up.Could not get the same results again,but it was so lovely to
wake up pain free(which did not last more that 5 minutes on waking)but so
glorious.
Tears and thanks
Melissa: Thanks to Red’s reference I just learned about PAC’s. If you have a definite compression and you are in pain, why don’t your doctors recommend a MVD to fix the compression and, since they are in Meckel’s cave anyway, a repair on your PAC at the same time? I know it is scary but the MVD part shouldn’t be. Best of luck to you.
Whether or not they are incidental is based on symptoms. I would be curious about your blood chemistry… Its weird this would come up now (as a similar situation popped up on another community.) But the fact is those kind of lesions have multiple causes and fall into the Transverse Myelitis arena. It can be as simple as a copper or vitamin B-12 deficiency to “herniated discs” to (very Unlikely) something more sinister… It absolutely needs followed BUT you are as well off to ask a stranger on the street as you are a neurosurgeon.
MVD shouldn’t even be on the table until everything is sorted out. The most likely outcome would be no improvement or most likely making things much worse and unfixable in the future.
The first thing that happened when I made it to a neurologist was he took my blood to check for other causes of neuropathic pain. My methylmalonic acid level was high, which means that sometime in the past I had a B12 deficiency, but my B12 is normal so there’s no reason to treat it. My labs have not shown anything out of the ordinary since then. I have a lot of doctors for various reasons and get labs basically every three months at the least and while they always show mild inflammation they think that’s the endometriosis.
I have had TN for a year last December and it was horrific pain. I mostly get breakthrough pain but I have never had enough relief to think it wasn’t there.
I have had electric shocks in my hands and feet off and on since about April last year but my doctor said the causes for this sort of neuropathic pain could be about 300 different issues.
Mostly the oxcarbazapine made these symptoms invisible while it was working. But the dosage has been wearing off, and the electric shocks in the hands and feet have come back along with my face pain. Now I am getting signs of sciatica near my butt. (Also odd nerve pain…)
So this is the stuff my neuro thinks could be a part of the cyst in my brain.
My doctor is consulting with some of the residents at georgetown to learn about what the best course of action is. Meckel’s cave isn’t as easy to reach and from what my Dr. said, it’s just more dangerous to operate there, and they may want to drain the cyst while they’re in there because either of them could be the cause.
He seems to think because of Meckel’s cave they may need to do both the MVD and relieve the cyst. So I don’t know really. I don’t even know if the cyst in there can get bigger or not or if it’s really a cyst or just “cystic” as in tissue that is overgrown.
I will wait until the Dr. and let him explain my options next and hopefully be back with some answers, but I really won’t know more until late February when my appt is
Hi Melissa, just a note on B12. Be very, very, VERY wary of doctors and their “B12 is normal”. The figures for B12 in the US & UK are terribly out of date and don’t reflect current research. It’s quite possible that you have low end B12 that in another country would be considered as needing treatment. The fact that you have had B12 deficiency in the past is a huge red flag. If you didn’t get a copy of the exact figure from your doc, get a copy and check it against the data in the book “Could it be B12?”.
I am one of the very lucky people who went into remission after being treated with B12 injections (I still get them monthly). My B12 figures were “normal” according to the UK RDA figures, but those figures are seriously wrong (I only recently discovered they were based on data taken from 7 people in the 1940s who ALL had pernicious anaemia!). I had to compile a huge dossier of research on B12 for my doc in order to convince him to give me B12 shots. Lo and behold, in 3 weeks a years worth of pain, and ever-increasing meds, all started to go away.
So please, please don’t accept their evaluation on your B12. Incidentally, neurologists know zero about B12 issues, and care less. It is one of the most neglected areas of neurological damage. Even doctors are hugely ignorant about it and never consider it with neurological complaints unless you have paralysis in your legs!
Just in case you want to check it out - and again I’m going to urge you earnestly to do so, because you have so many of the symptoms of B12 shortage - here’s a link to the book:
I would also recommend the Health Unlocked pernicious anaemia forum. You’ll find a lot of people on there who have identical neuropathic pains in their hands, feet, legs etc as you describe. Of course, this does not mean you have the same problems, but it does highlight that you may have a problem that the sadly ignorant medical profession is overlooking. One of the problems with using specialists is they all tend to look for answers in their own areas of knowledge which means you could have a problem, like a B12 issue, that they just never consider.
I’ll also just mention here that a lot of people with B12 issues have “normal” figures, as I did, but they still have all the symptoms. Some researchers think this might be because although the body has the B12 it can’t get into the cells, and doctors just don’t recognise this as a problem yet. Anyway, I hope you’ll check it out. The great thing about B12 shots is they are cheap, easy and you can’t be overdosed on them - that’s how I eventually won my doc over to try them! Best of luck.
P.S I gave you the US Amazon link because I think you’re in the US?
I actually thought this about my other issues (not brain) – the hands and feet especially. To me it sounds exactly like peripheral neuropathy but no doctor will actually write that in my file. I don’t know why they are so hesitant about these things.
I will check the book out as soon as I can.
Do you or anyone you know have any experience with B12 patches, or are they kind of a scam? The reason I ask is that I am on Medicaid (government-paid insurance here in the US which is very limited in what treatments they pay for) and I am not sure that I will find a Dr. willing to charge my insurance company…
However, I think we have doctors here in DC that offer what they call “integrated medicine” and although they won’t be paid for with my insurance, they def. offer alternatives and probably a B-12 shot. I can save my money up for that sort of thing but it may take a while with the way things are going.
But if the patches have a good track record, they’re over the counter. So if anyone has any experience with B-12 patches, let me know.
I’ve been looking at things like CBD oil (medical marijuana alternative) and found that a lot of these things offered online are just fake and don’t contain things they claim. The FDA here tested a bunch of CBD oil and none had more than .5 percent of the part that kills nerve pain.
Of course with the B12 shots I would seek a real Dr. out.
So sorry about the new finding & exacerbation of your symptoms. I, too, have pudendal neuralgia (oh, my, all!). I have “atypical” TN, bilateral, with numb chin/lip & burning tongue. It’s all so very scary. Wouldn’t it be nice to find a specialist who could treat both upper & lower awfulness. So far I haven’t found one😅. As always, bless our meds. My neurologist has allowed me to break my gabapentin & baclofen in half to deal with the terrible pain while waiting for it to kick in. It really does help. (Max + doses on both). Good luck & I’ll try to follow your post for replies.
I have a congenital heart defect, too, that functions “abnormally” but doesn’t function in a way that could cause a heart attack. It took a lot of worry and sweat for the cardiologist to figure this out.