I have appt on the 26th I think the 2nd cranial nerve is what’s causing my pain
I thin it’s very dangerous to self diagnose a surgerical procedure. If you feel you must suggest invasive procedures to your doctor maybe you need a different doctor. Or at least a better care plan. Rule thumb is usually to avoid invasive procedures until everything else has failed. Remember invasive procedures always have the risk of making it worse.
I’ve wasted my time with all medications yes I’ve tried all the migraine meds as well if after 5 years of pain don’t you think it’s time to actually do something that might work no matter how dangerous it could it be the great ones take risks and the ones who never do never get better so if not now than when 10 years from now nah I’m good
Justus, to be clear, these are your decisions and yours alone. The members here, many of whom have had a great deal of experience and a great number of medical procedures, are simply offering their opinions. That is an act of generosity, and it’s perfectly acceptable to reject their kind advice while showing appreciation for their concern.
Seenie
Yea I appreciate most of there advice opinions and support I will.also try to show more respect if I disagree but I don’t know if you noticed there s been a couple people that have have been rude to me to telling me what and what not to post I treat people the way they treat me I’m only going to get closer by asking questions anyway so are there other procedures besides the retrobulbar nerve block or is that the only thing that’s supposed to help the 2nd cranial nerves
I did see some people expressing very strong and justified opinions, yes.
And yes, asking questions is an excellent way to gather information. But you’re going to ask the same questions of your doctors, right?
Seenie
Yeah I’m gonna do my best to ask as many questions as I can I’m just worried I might be out of nerve blocks to try and this is what this guy specializes in my pain is behind my eye I really don’t know if there are any treatments left for me to try unless anyone can name a few for me to bring up tomorrow I just want to be myself to be able to actually genuinely be happy again because no matter what I do I just cannot and will not cope with this
You need to understand nerve blocks are ART and SKILL and far less science. A single failure is a learning experience. For a block to work it has to be between the nerve sheath and the nerve. get it in the nerve and you are screwed, out of or in the sheath and it it will last but a very little bit if at all. Whether it is MRI guided, or sonogram, x-ray, it doesn’t matter. How well the guy on the other end can feel how that needle moves is all that matters. The nerves you are talking about are sooooo tiny, its a total crap shoot. The type of nerve block is less important than the skill in doing it. The type has more to do with longevity than anything.
The other thing you need to keep in mind is the nerve you are treating may not be the source of the pain it may simply be transmitting the “pain” from elsewhere. Obliterating the nerve (which you can’t do) won’t eliminate the pain signal. it may simply show up elswhere (and be worse) Often times this is what we call ATN (but not always) as regular TN can morph into ATN
Because of this, there are other things that need treated along the way or you have a situation where things get worse and worse and even more unbearable. This is where pain management can help although what they do in the tri cities I do not know beyond the fact My daughter who lives there is treated for chronic pain at St Luke up in Spokane with consult at UW. If you have had the pain for a long while it is likely to have a couple of connections that have nothing to do with the “nerves” but are either part of a Central Pain Syndrome or Hyperalgesia (caused by treating the pain) Pain management specialists are either able to deal with that or refer you to someone who can. The other possibility is that you are somewhere on the Spectrum which is similar to the first two, but a bit more complicated. THAT can be dealt with too.
In the meantime and as the pain specialist sorts it out there are literally hundreds of suggestions and ideas on this forum from folks who have found ways to cope. You have as of today read only 95 posts on this forum. 15 of them are yours. That is actually fewer posts than have been put up by members trying to help you in the 5 threads you have started. We are not doctors, just people like you who have a very painful condition and are doing their level best to get by. I wouldn’t suggest you ever tell ANY of us again we don’t get what you are going through WE do, myself included in spades.
Good luck with your appointment tomorrow. While you are waiting (you always wait) use the Dr offices free WI_FI to read some of the other hundred thousands of post that have some coping suggestions…
TJ
Thanks TJ I’m not at all trying to be a jerk i just want to be pain free again can you please tell me in simpler terms what exactly should my pain doc do to treat my pain ?..earlier you said the pain was coming from my second cranial nerve please with all respect just tell me exactly what treatment my pain doc needs to do because I’m lost & if I’m gunna do this I need ur opinion on what it is and how to make it better
I know your not Justus. My wife reminded of being your age again (It was a long time ago) Yes the pain is coming from your 2nd nerve (likley) but something else could be sending it there. Sometimes its called referred pain. Believe it or not among everything else your PM specialist can do, ther is a series most use know of just pain education. What causes it and how itgets there, That in and of itself can help as well as starting you on the road to gaining control of your body. They can teach you some great techniques. as well as medications etc. Ask him about pain education. If nothing else it will convince him you are not a drug seeker (which I know you aren’t but these days they consider that way too early in the process)
TJ
Well I’m glad you are understanding of my pain you probably have better things to do than deal with miserable people like me lol but I do appreciate ur advice that’s y I press so hard for it because other websites or just people in general when I try to get awnser s for my pain i just get made fun of do you think it would be the right move on my part to ask him about treatment or procedures for the 2nd cranial nerve? I’m gonna try to ask as much as humanly possible but because of all the failures I’ve had so far with treatment I’m going to push for something for invasive…Also i just wanted to say I’m sorry about ur daughter in law and if I offended you in anyway it’s nothing personal I just want to be able to enjoy my family again there all I got I’d feel really bad if I never got healthy enough to enjoy them
Justus, Seenie here. Please do your homework and have a written list of things you want to tell the PM doctor, as well as questions you have for him/her. The two copy system (one for each) works well. And yes, I’m a retired teacher.
Speaking of referred pain, I wanted to chime in with an example. I have TN2, I was trying head/neck/shoulder massage per my nuero suggestion… they massaged BEHIND my right ear and the pressure was felt on the right side of my CHIN. Odds are she was hitting the base of the nerve in question. The amazing thing was I didn’t feel a thing where she was massaging or anywhere along the nerve, just in the pinpoint place that I got the red-hot-nail feeling of TN2. Very odd.
At the end of the massage the numbness throughout the right side of my face was gone and stayed gone for about a week.
So, at the end of the day you have to be careful about where you think the problem is and where it actually is. I would have sworn 7 ways from Sunday there was nothing wrong with the back/side of my neck and I was proved utterly wrong during a 30 min massage. Referred pain can be very tricky and it can be very, very painful. Heck, another example is when I shattered my shoulder joint. My shoulder felt fine, the pain was just above my elbow on that side, almost like hitting your funny bone. Never mind that the ball of my shoulder was in five pieces and dislocated from the joint.
I’m sure everyone here, myself included, just wants you to be super careful and to locate the best care for yourself. The worst thing in the world is to see a post from someone where the pain has gotten worse after a treatment attempt.
Good luck with your appointment and getting a care plan in place.
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Azurelle, was it an RMT who did the massage for you? Do you continue to go?
On the theme of referred pain/sensation: when I put eardrops in, sometimes they hit a spot inside my ear and it feels exactly like I’ve plopped the drop smack on my eyeball on the opposite side. Weirdly funny, but an illustration of how some of these things work. With that thought, maybe Justus’s problem is actually in his ear? The body is such an fascinating machine, so full of mysteries, isn’t it?
Seenie
In terms of massage I first went to my local Massage Envy location (a spa chain in the usa). Then I had coupons for a different place. My face on the TN2 side had been varying degrees of numb for abt 2 years at that point. I went every 2 weeks for 3 or 4 months then once a month for 4 or 5 months and basically full feeling returned. Then I was distracted by shattering my shoulder and stopped going. It’s been 2 years and my face hasn’t gone numb like it was before. I really need to schedule another massage!
Justus mentioned going to an ENT I think but I wonder … I was reading an older post from someone who discovered a hole in an ear bone was causing facial and eye pain… And ocular migraines are poorly understood and oftentimes misdiagnosed …
Yeah I went to a chiropractor for the longest time who did the usual spine adjustments also did massage and at one point I thought maybe it was ocular migraines but everyone says those go away on there own and mine are chronic they never go away would migraine botox injection get rid of an ocular migraine if that was the case
Not all migraines stop on their own. You can get into Status Migraine where the migraine becomes self triggering. Which makes it hard to stop. For a “regular” migraine high dose steroid steep down often works along side other interruptors like triptans.
Based ion what you’re saying it sure sounds like inflammation of the or around the optic nerve. Have you ever tried straight high dose anti inflammatories?
Botox won’t help inflammation based problems. It’s a poison that interferes with muscle control. Not sure messing with muscles of the eye is anything to even think about