I had an MRI two years ago at the suggestion of an ENT (I was going the route of ruling out TMJ w dentist, then ruling out ENT issues, etc.), followed by a TERRIBLE consult with a neurosurgeon they sent me to. He found a small benign tumor and focused on it, and said things like “you know you could go blind,” and then started to talk about how he was going to approach cutting it out. I informed him I was there for information on my fifth trigeminal, because the pain I had seemed to be TN2. He then said, dismissively, “oh yes, there is a vessel pressing on the fifth trigeminal.” He then told me to have repeat MRI in six months cause of the small tumor, and he ignored totally my complaints about the jaw/tooth/ear pain. Two years later, I saw a neurologist cause my jaw/tongue/tooth/ear pain is so bad and constant. He ordered a new MRI, also mentioned the small (benign) tumor, and we discussed my pain and he prescribed gabapentin. When his nurse called me with results from MRI, she tells me all about the tumor, and that was it. I asked about the trigeminal. She said, “well, if he’d seen something, I’m sure he would have said something.” I disagreed and asked her to please go back to him and ask him to read the MRI as to the fifth trigeminal as well. I agreed to go to a neurosurgeon for consultation as cautionary step re the other small benign tumor. Days later, I again talk to her and ask if he has reviewed MRI again as I asked. She says “didn’t I already give you MRI results?” I explained she had told me ONLY about the tumor and not about the nerve that is giving me excruciating pain. She blew me off and said “well maybe the neurosurgeon we referred you to can help you.” So now I have appointment in three weeks with another clown who likely won’t listen or do anything about the reason I came in the first place, and I am taking gabapentin now for two weeks, which makes me feel soooooo foggy/cloudy and does not seem to be helping much with the pain. I will try really hard to get the next guy to LISTEN to me. But I am not holding my breath. So very frustrating.
AlexsMom, I understand your frustration. So the first doctor actually confirmed that the MRI showed nerve impingement? And no plans to address it? Unbelievable. Please keep us posted on how the next appointments go. Wishing you solutions and healing.
(Incidentally I also have, as you mentioned, “jaw/tongue/tooth/ear pain” – but nothing turned up on MRIs so far, and I’ve seen many doctors who don’t know what it is. Neurologists prescribed gabapentin and nortriptyline. One facial pain dentists thinks it’s all related to TMJ (aka TMD) because an MRI showed mild degeneration plus anterior disc displacement. I don’t know what to believe.)
Best wishes with the next steps. Let us know how it goes.
I know this is really hard, but do everything you can to not go into this next appointment with a chip on your shoulder, it’s not this doc’s fault you’ve had problems in the past. In fact, I would use those to your advantage!
Start the appointment saying “I’m so glad I was referred to you! I was told you’re the person to talk to about what I was told was a blood vessel pressing on my trigeminal nerve, you have the MRI, right? Could you explain it to me? I’m not sure I understand how a blood vessel is creating such blinding pain in my face…”
That way you’re setting up the appointment to be about what you want it to be about you, you’re telling the doc you have pain and you’re telling the doc that he/she is the expert you need. Hopefully this will open the correct channels of communication for you. After all, flattering does tend to get you everywhere.
And go in ready to take notes. This is good for you, it gives the doctor the feeling you’re taking them seriously, and even more importantly you can say something along the lines of “let me write this down, the pain is so huge and so distracting I’m concerned I won’t get all this information the first time…” that way you can reintroduce the level of pain you’re experiencing and give a concrete example of the problems it’s causing you.
I hear your frustration. Some of these doctors are horrible and many don’t wen know what the nurses are telling you. They each have their own opinion which makes it very hard. I have TMD and he doesn’t believe in neuropathic pain, my facial pain doc says it’s atypical facial pain. Keep pushing through, gabapentin , be patient with, either will or won’t work, go up slow. Please let us know how your next appointment goes, what state are you in
I’m in Idaho, and my next appointment is not until April 5th. Thanks for the kind words. I am sticking with gabapentin at 1200 mg for the moment for a bit longer.
I’d also ask your doc to read your MRI with regards to your neck, as a large proportion of the trigeminal nerve pathway sits there. At least in the UK radiographers don’t look at it because there not trained to. Too busy looking for vascular compression and indeed tumors
Hi. I live in Ca. Traveled to Oregon OHSU to dr Kim burchiel. I liked him a lot. I also went to dr Linskey at Uci (Irvine). So if you’re ok to travel. May be worth the trip if you’re still not satisfied with your new neurosurgeon. I had gamma knife surgery on dec 4th. It helped the pain. I have atn and milder classic. It also helped what became chronic eye tearing swelling and itching of my left eye- everything’s on the left for me. I’m not saying I’m cured, but have found some relief. It’s not a curative procedure and it’s not really surgery. I cannot take ANY meds due to sensitivity to side effects. I wish you good luck and hope this new dr and you develop a good rapport. It is very frustrating when we aren not listened to. I’ve been to 5 neurosurgeons over the past 14 years since first diagnosed. Some were very nice and compassionate. Take care and please come back for support. This site has helped me to cope many times.
I am almost afraid to start this post as I won’t know when to stop, but I will try. I agree with your pain when it comes to Dr.'s. If they don’t know or understand TN, you’ll be the last to know. btw, I was right , I didn’t know when to stop cause i just deleted the rest of this post back to here, lol They really get irritated when you do research on the internet, however had I not I would probably not be here today typing this now, ( that’s a whole new story). They will lie to you: After a failed MVD I asked about the metal that was used to cover up the area where the surgery was done. Oh, you have nothing there, they just super glued the piece of skull that was removed back in and stitched over it and stapled it shut . After six years of getting pushed back out of MRI’s and CT scans asking me about the barrette in my hair, I finally called the Neurosurgeon’s office and asked why this kept happening, they said oh, that must be the titanium plate and six screws, I asked that they send me a copy of that report which they did. I was speechless.
What it amounts to is you have to do your own research, these Dr.'s think they have better things to do than to have to research to try to help you plus sometimes it’s just quicker and easier for them to lie to you instead of having to tell the truth.Here I go again starting to get carried away. I will stop it for now, I can only wish you the very best.
I have to say your experience with dr’s is not limited to facial pain, in fact I do not believe it is limited to any profession where a university degree can be acquired, but the medico’s are the worst imo. I have had a surgeon tell me straight out “I am the dr, I have completed years of study, so I know. You? You are just the patient, you wouldn’t know…” They can get VERY annoyed when you consult ‘Dr Google’, but they cannot prevent you from doing your own research. For years I worked in social services, I have a certified accreditations but not a degree. The people with a relevant degree like to believe they are better, but their knowledge comes from a book and when it comes to first hand, practical experience they are limited. If the answer is not in their books, they are stumped. Lateral thinking is not taught, it comes from experiences. It is much easier for many of these professionals to treat us like mushrooms ie Keep us in the dark and feed us up on bullsh%#, by doing so they believe they keep their control. But as the saying goes “forewarned is forearmed” keep yourself informed, even if it’s only to save your own sanity.
Merl from Moderator Support
Thank you so much for your answer to my post. Oh yes, google is my friend and I try to not let Dr.'s know that. I had a relative that a Dr. had written her an RX for something . While we were on the phone, she stated that she wondered what the drug was. I told her to Google it. OMG!!! she came unglued and said that so-in-so told her that anyone that used google to Dr. themselves were damned fools. I said well I guess I’m a damned fool. If I hadn’t been a damned fool I may not be here today. (the Dr. was going to put me in a wheel chair within the next week, she said later that I gave her nightmares) I told this person , “you have got to use a little common sense” You don’t just use the first answer that comes up, you research by visiting sites you feel most comfortable with. We may not be Dr.'s, Google isn’t a Dr. but what else do we have? We have to be able to basically take care of ourselves, just don’t let the Dr.'s know what your doing, lol. I think Dr.'s are becoming more accepting of Google as I have had them tell me to look it up. I think the problem is when someone looks at symptoms for something they think they have it and I can see how that would be a problem.
Hello - I started having pain 25 years ago, about six months after I had jaw surgery.
(I was born with congenital problems on the left side of my head. The surgery involved breaking both top & bottom of my jaw & putting back together with titanium screws. I can provide more details about how / why I ended up consenting to this surgery. ) I consistently described the pain feeling like an ice-pick going straight into my left ear. Until I read your post today, I did not realize that my description likely explains why NO ONE had any idea why I had that pain. A more accurate description would be an ice pick straight into the left side of my head. Picture someone with giant screws on either side of the head, like Frankenstein.
Because the pain started after jaw surgery, most doctors immediately assumed I had TMJ. Or, based on my description, doctors assumed the pain was caused by a problem with my left ear. It took YEARS, two more surgeries & countless trips to different doctors & medication & (fill in the blank). When I could get a doctor to look at me and point exactly to where the pain originates, more than 80% would tell me that “they believed I had pain… but that there is NOTHING THERE that could cause pain.” Eventually, a neurologist suggested it might be a nerve… “like trigeminal neuralgia, but NOT because it does not involve those nerves.” Even my college friend’s spouse, someone I have known for more than 30 years, assured me that it could not be nerve pain. He has an MD/PHD and practices medicine & does research & is kind and loving… and apparently also could not see outside the labels.
Jump ahead to 2014… finally, a neurosurgeon suggested I might have “atypical facial pain” involving the “nervus intermedius.” One fancy MRI (fiesta…) & two consults later, I ended up having MVD surgery. Many nerves were compressed… Sadly, the MVD did not relieve my pain.
I apologize for not editing this reply. I have a great practice medicine using google “story.” Next time.
Maybe it’s my approach, or, maybe it’s the doctors I have decided to work with, but my doctors never have an issue with me doing my own research. I’ve often started appointments with the statement “You know I love Google, I need your help…” and then start a discussion about whatever it is I found that could apply to my situation.
Maybe it’s because I’m setting it up that I’m coming to them for clarification? But I have many, many discussions with doctors based on internet info or other research I have found on my own.
If your current doctor is unwilling to discuss your personal research into your personal condition I tend to want to tell you to find a new doctor. (Which I know is often easier said then done, but you only get one life.)
I don’t think it is anyone’s specific approach when talking to doctors that gives us negative experiences. I believe it is just so hard to treat us that they are frustrated to say they have no answers. I was told my atypical facial pain should respond to medication and after years of trying different prescriptions I gave up. It was only then after 8 years of horrible pain did a pain doctor ask me if anyone had looked for Eagle Syndrome? A CT scan later and surgery along with TMJ treatment I can function again. It appears my trigeminal nerve was being poked by a bone/Eagle Syndrome and tight muscles in my face, neck and shoulders added to the pain. I can no longer lift heavy bags or weight, must be very careful with my neck positions and can’t use a computer but I am doing well. I hope everyone can find solutions but what I have learned is you have to unwind the pain. I work on my health a a whole, eating healthy, exercising and resting. It is not the life I dreamed of but it is a life worth living now. Keep asking questions and look for solutions for living in pain is just not fun…Good luck to everyone who reads this.
I do agree with your statement BUT the whole process could be so much easier if they would admit, they don’t have the answers rather than putting it back on us. Some people do respond to treatment, and that is great, but for those that don’t simply saying ‘…it’s a psych issue…’ is not of any assistance. Society in general seems to place dr’s on a pedestal as having all of the answers, but when they don’t, rather than admit the fact they don’t, they often put it back on the patient and that’s an issue. It was insinuated that I am in my present position by choice, like I choose to be in debilitating pain. Who on earth would choose this? NOBODY!!! Finding other individuals in this position is difficult and that is where I find Ben’s Friends an absolute godsend. There are others in this position and we can all meet here.
Merl from Moderator Support
Very well written…no one would ever want to live in the pain we have suffered through…most people can not even imagine what this pain is like including doctors…but I believe in hope and that is what carries me through each day…
I agree with your comments. One of the reasons I love my primary care physician, whom we have known for 25+ years, is he will say “I don’t know” without hesitation when he doesn’t. He will look stuff up and figure things out, or he will refer to a specialist, but he indeed admits not knowing. And he never puts it back on the patient, as so many of these practitioners do (which is what they are doing when they say it is psych issue simply cause they can’t figure out what is going on physiologically). Thanks for your intelligent thoughts.
Again I agree Anna4. A very good friend once told me the worst pain in the world is a toothache. I wanted to slap him into next week. But then I thought about it, if the worst pain he has ever had is a toothache then that’s as far as his pain level goes. Jeez, give me toothache any day over this. Whilst in hospital, post neurosurgery, I was asked to give my pain a rating out of 10. I said ‘15’, young nursie said to me “ohh it can’t be that bad” I’m laying in bed in the fetal position clutching my skull to prevent it from exploding and her comment sent me off “Well, you lay on the floor and I’ll boot you in the side of the head” “Ohh there’s no need to be so offensive” she replied “Then stop making stupid, selfish comments” I told her. Seems I’m not a nice patient when I’m in agony, but then who would be?? I’d quite gladly swap my pain with anybody willing to take it from me, but I’m yet to find any willing takers.
Merl from Moderator Support