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Living With Facial Pain

Bad Doc, Good Doc - Should Doctors even try to preserve our hope?


#1

I just had the worst experience with a doctor. With having seen more than 25 just for my facial pain (sphenopalatine neuralgia), I’ve seen more than my fair share, so my experience overall has been pretty good. Today I got a taste of the other side.

Basically I walked in for botox injections for migraine, my third round with this neurologist after I had a change of insurance last year. So I’m not a brand new patient, but likewise we don’t have an extremely long history with each other. I brought four or five ideas of new treatments for my facial pain.

He shot them all down, one by one. I was talking about an easier nerve block, nasal lidocaine, oxygen treatment, capsaicin, and CBD oil. He told me that the equipment was expensive, heavily marketed to them, I don’t know - go see a pain doc instead (I lost mine in the change of insurance a year ago), capsaicin is too superficial, the oxygen is too short of a duration, they only use that for cluster headache patients (btw that’s the same diagnosis I have, just that my pain doesn’t present the same way). Then he told me that pain docs are in such high demand that they are picky about cases and insurance they take, insinuating that I might not even get one to accept me.

My hope was crushed (again) and I was in tears as he started the injections. He asked if I was “ok” and I said yes, you just burst my bubble. He was silent. Silent! No softening of words, no glimmer of hope, just botox crunching into my face (for which I am very grateful).

As I sat in my car all I could think of is why am I not worthy of trying some of these treatments? Why is my pain not worthy of attempts to fix it? If all of my ideas were junk, then couldn’t you offer something else instead? Or because I’ve had it so long does he just see a lost cause?

I want to write him a letter and tell him what I think, but can I risk losing him for what his specialty is? Did I just bark up the wrong tree? I just mustered the courage to pursue getting some answers and trying more treatments and this is an emotional setback for sure.

I try to see his side of it: 20 years of chronic pain is a long time, probably tried everything. Those things are long shots, I should tell her and not lead her on to think anything might work.

But I just don’t get that. I would much rather have a little hope that something might work, so that I could keep on trying and fighting. I’m sure he didn’t think that what he did today was cruel, but to me it was.

Tomorrow it will be better, I will get back up on the horse and go again. I won’t stop until I find something that helps. Today just sucked, that’s all.


#2

I have stopped going to doctors,I just live with the pain of TN2.My doctor said why would I go to med school for years & then waste my time studying alternative treatments .He also said cabamazapine or nothing.So I will not be trying to find another A$$0 doctor, no empathy at all.So far, they have all been the same,they have no idea of the pain level.If anyone has tried anything to help I would like to hear your experience.In dealing with this illness I find no one really cares.


#3

I am in Canada.My last experience was similar.I am so sick of the doctors that have no idea the pain we go through and even our anxiety about the drugs that we are now being removed from because of the opioid crisis-with NOTHING to replace them.
Before this pain I took ZERO drugs.
Now I just want to numb myself enough to function to get my house in order for the eventual.
I really do hope actual doctors review these comments,and not just their legal weasels.


#4

Hi Ellen5, where in Canada are you? I’m in Toronto and I have been astounded in the past 3 months (since my onset) by how passive the doctors have been about this, and how hard it is to get some active exploration or plan going. I did meet a few good doctors in recent months, although they were not able to directly help with the face pain since they specialized in things that didn’t seem to be directly related to this pain. Were you able to see any neurologists?


#5

HiDawn, sorry to hear of your disappointment. I imagine it would have been helpful if the doctor had a least offered some kind of alternative, or another possible route for solutions, instead of just saying no to all of your suggestions and leaving it at that. I too find this kind of thing pretty demoralizing – when they seem to shut the door on further solution-seeking. I wonder if there is an additional doctor you can talk with. Glad to hear the botox helps, though! Wishing you a happy and pain-free day!


#6

“active exploration or plan” YES! THIS!!!

I’ve long been searching for someone with kind of an inventor’s mind or a tinkerer’s mind in the form of a doctor, just someone who is curious and wants to work on a puzzle. Hard to find, especially in the Doc in a Box culture that is emerging.


#7

This makes me so sad, @ellen5. We all deserve to find some relief. Our lives, our pain matters. I think doctors sometimes just want the quick wins, but we are stuck living it out and living with it so we don’t have that option.

One of my personal mantras is “To the persistent go the pickles!” (after a friend and I tried for 30 minutes to open a pickle jar) Persistence is our greatest weapon. We are worth it, don’t give up.


#8

To those in Toronto or Windsor, think about crossing over into the states and paying cash for an American doctor. I know it’s not ideal but it might be better than what you’re dealing with right now.

I live in America and if I wanted/needed to I could go get a MRI during lunch next week. It’s that simple here. We’re also dealing with the hysteria over pain meds but at least you could get into see someone quickly! Of course there’s no garauntee that you would connect with the next doctor either, but, in America at least we still have strong competition for patients and you may not be as easily dismissed – especially if you stress you’re traveling internationallly seeking help.


#9

Thanks
I try and smile.makes people laugh.little kids surround me to see who has
more teeth.
For me the motto is turning out as to the persistent go the pills-because
that is all that is left at the bottom of the barrel.
Want this monster gone.Have figure out a wat to scare it


#10

As the bookend to my first post, I just had the BEST experience with a doctor!! I’ve been looking for a primary care doc since mine moved out of state. Yesterday I finally got to meet him, I went in with very low expectations - in fact I was just hoping that he might be able to refer me to a new pain doc. I reminded myself to be approachable and go slow with the information. (20 yrs of history is a lot to dump on someone in 10 minutes.)

He started out by saying that because he’s in a larger practice, he gets all of the “tough” and “interesting” patients, well that was music to my ears and he even had a smile on his face. Good start. The more we talked, he was knowledgeable about a lot of what I’d already tried, he skimmed over my written summary nodding. He said he wanted to go slow and get to know my case before he just started prescribing things that had already been tried. He listened, he actually listened to the ideas I had. He said that his preference is to find long term relief rather than just short term (as in the duration of the nerve blocks from lidocaine). All sounding pretty good to me. I cautiously approached the idea of CBD oil, telling him that I started a trial just a few days ago. His eyes lit up, he said he was going to ask if I had. He warned me about inferior products and I told him what I did and which brand I bought - he was delighted and called it the “gold standard” of brands.

We talked about the type of pain the level of pain and his eyes lit up with more treatments to try. Things I had never heard of, so that’s interesting because I’ve tried a lot. He talked about being the quarterback of my team, as my primary care doc, but he also said that on Monday he is finally opening his pain management team, who he has recruited and developed locally and from around the country. At this point, I don’t know how I lucked into this, and really I have to thank God because I found this doctor from Yelp reviews and he’s only 3 minutes from my house.

He asked me if I’d be open to seeing a pain psychologist. My response was “I’m open to it! And what do they do exactly?” The doc says “Well pain puts a different kind of stress on your life than say if you were in a bad marriage. So pain psychologists study the specific stresses and adaptations and coping strategies that are common among those with chronic pain, and what might help to improve those coping skills.” Ahhh that makes sense to me too. How refreshing to have a doctor that is up to the task of being on a team trying to solve or better life with chronic pain. It was so amazing, I was actually shocked.

So there is hope!


#11

Hello and I am new and was reading your posts…I am SO glad you got a good doctor response as you deserve! I kept thinking how we put our lives so often in so many doctors hands, how is that NOT the most personal vulnerable place to be? We tell doctor details some people in our lives never know. Our health is all about our most personal truth that affects our lives we are talking about, isn’t it?!?

But truth is Doctor’s are human, they are people in coats we give respect & we deserve the same even w/out the coat or degree. Dr’s are people who have different temperaments and styles of treating patients, easy to forget they may be having a bad day or worse that is how they treat complex patients or all of them! Scary but true.

We must remain strong. Never let a doctor make us feel “less then” and strive for the therapy we believe is possible, available and find what works it may be the treatment that works or Doctor that heals! We could be 1 Doctor or treatment away from even a cure, right?

In all my many procedures/Doctors/therapy (I did Botox for TrigeminalN and had allergic reaction! Doctor thought had to be something else! It even gave me migraines for a month I had only had few before then after month I had for a year worse then ever, but can’t say I didn’t try)

I have noticed 4 things about those that shoot down my ideas & maybe you can relate:

  1. They don’t do those treatments & admit they don’t or worse they “don’t” even know what the treatments are and why they don’t reply or silent when you ask because c’mon we know some Doctor’s have HUGE EGO’S

  2. They don’t want to try other treatments for issues of getting paid/insurance to cover them plus they may have realized the equipment and/or Medicine costs more then they make & financially doesn’t benefit “them”

  3. They don’t want to refer as could be competition to them

  4. They don’t understand our conditions and therefore don’t want the liability of us or to be the first to try something new even if they know what we are asking… silence speaks very loudly

Bottom line, if a doctor isn’t confident enough to admit they don’t prescribe/offer or do whatever we are suggesting/asking they are often protecting themselves. They will go home & think not once about us while we are confused, frustrated and upset as is human but then lets them steel our joy.

I think that if a doctor isn’t recommending a other doctor, therapist, treatment or just encouraging us to seek someone out…they either are new maybe to field or area or just want simple patients & want to push those of us who need the most help out & away or to submit to what they will do and just take it and be grateful.

I have a awesome doctor (not all of them but 1 for sure) she is always open to treatments or therapy or Doctor’s that can help me. She doesn’t have best connections but backs me up. She is their to help heal, ease pain & listen. She doesn’t even care if I seek help from same Doctor as her…why is she this way? I believe because she is confident in herself but most: “she cares I get better in any way possible.” Her attitude, style and person she is puts me first and that has taught me so much. When you leave your doctor even in pain they can’t fix but feel better anyways, that tells you a lot. When support was just received and your doctor gives you hope that you even in a storm they are their for you…that is the how it should feel. They can’t fix it all but should never stop us from seeking getting better.

Never give up, be confident in yourself and know your ideas, your situation & your pain is real to YOU…

Easier said then done but we must always keep striving to grow & heal. Those moments we are trying to seek help it is way too easy for just 1 Doctor or family/friend or even stranger to make us think we are being anything other then what we are…a person in pain or struggling trying to get better.

We should never feel bad to be honest. We must stay strong even when we are weak. Dream and live long & allow our feelings to just be.

Any doctor not having our best interests that steels our joy or worse our momentum to getting better seeking treatments and therapys may be a expert in a field but unless is helping us and we need guard our feelings for treatment they provide we must acknowledge what they are doing to us that is making us worse by holding us back. Yes, some experts have no bedside manner but they better be helping something to be worth tolerating in my book!

Awesome for you though for if you had given up & let that doctor make you feel as was natural but let him keep you from pressing on and seeking the healing treatment options you so deserve…you may not have met the doctor helping you now. I SO hope you are doing better and always have hope for betters days and years ahead. You are a example to us all to not give up and thank you for your deep felt honesty and being a inspiration for us all.

I think some doctors like one you posted would best serve society working on cars NOT people. Something without a brain, feelings and real pain that doesn’t run on oil changes.

All my best to you!
-Charlotte


#12

Thank you so much for your in depth reply, Charlotte. I agree with you, that most likely my ‘bad doc’ was struggling with item 4 you mentioned - he doesn’t know anything about my condition and is not comfortable exploring it.

Thankfully I am doing better, actually I had a breakthrough yesterday and actually got my pain down to 50% of where it normally is! Aside from nerve blocks that hasn’t really happened, but CBD treatment has been amazing (and a little frustrating) but mostly amazing. I’m still in search of just the right amount, but I have so much hope in the future having less pain. That’s what I want for all of us!

Aloha and thank you.


#13

Something you need to always keep in mind is that from the earliest ungrad days docs are taught to be scientists. The simpilist way to understand what that means is to be like a TV defense attorney. Every statement made by another receives the same response “Show me the evidence”

In an earlier life I was on of those dreaded “peer reviewers” I evaluated and check the stastical validity of articles for publication. Even then we rejected more than we accepted because the evidence wasn’t there. Number 4 in the list above is the most likely but not in quite as cynical a manner. There is a serious question of ethics. No GOOD doc will make his patient the subject of an experiment. EVER.

Although my experience was professional and scholarly, I do read the internet A LOT. Almost without exception the internet is either a year ahead of whats really happening (someones “theory” is presented as fact) or two years behind (someones anecdotal experience from something that never quite panned for others out is presented as fact)

Your docs far more on top of things than you may imagine silence is sometimes the best answer because there isn’t an answer. Patients want/demand answers. Docs would love to have them. More often than not ANSWERS don’t exist.

Look at how this site has evolved. The two main topics used to be “How do I get more and BETTER pain meds” and not if but “when will I get my MVD and cure this thing” although those options were pretty much dismissed in most cases years ago, the perception of being the best has persevered until very recently.

TJ


#14

I’ve been on CBD oil and vape for about 5 weeks now, I’ve been “microdosing” hourly to find the right dose for my system, which has been revolutionary and has already changed my trajectory. This CBD journey is largely self driven, but I’ve mentioned it to my Good Doc and he’s on board. Today I went in to have a follow up with my Good Doc. I had a bad pain day for me (7/10) instead of my normal (6/10) but I greeted him with a big smile because my hope in finding a solution has been restored! I’ve had 3 days (non-consecutive) where my pain has been decreased by 50%, that’s HUGE for me.

He listened, he complimented me on my “almost scientific” style of logging and tracking my dose and my pain. He thought my expectations were “reasonable” because I’m not looking for one treatment to provide 100% relief but more of a combination and getting the pain down as low as we can. He even said that I’m the kind of patient that he wants to present as a case study.

I asked him if I was a candidate for high-flow oxygen (one of those things my Bad Doc dismissed out of hand) given that my technical diagnosis is the same as cluster headaches and he agreed! So we have home oxygen tank on order for me! I am over the moon.

Since my pain has been so constant for 20 yrs despite all of the opioid trials, I finally feel like I’m on the right track and getting some dependable relief. Part of the Good Doc’s team is a pain psychologist who helps me with meditation and hypnosis to find comfort, even if I have no change in pain. It’s basically neuroplasticity work to rewire my brain to ignore the pain and focus on comfort in other parts of my body. It’s very relaxing and I think it also helps. This multi-pronged approach is really working.

At the end of my time with the Good Doc, he smiled at me and said - Wow, Dawn I get very excited when I think of where you will be in a year or two! I almost burst into tears of joy because for the first time I can actually see a possibility of being pain free, in a year or two.

It’s so encouraging to be listened to, believed, respected as part of the team to solve my pain. Yesterday just felt awesome.

It is really possible, I hope each and every one of you with facial pain finds a doctor who is as open and receptive and helpful as my Good Doc.
Aloha


#15

Good luck with the oxygenation! I used it forever ago when it first came out as a way to treat cluster headaches, I don’t have them but I have migraines so why not give it a whirl, right? While I found some help with it it wasn’t enough for me to continue but it did do something. I hope it does something for you that really helps! And it’s just oxygen so even if it doesn’t help lots its not going to hurt! My fingers are crossed for you!


#16

Oxygenation does help. Its one of several reasons you come out of surgery with oxygen on. BTW one of the other reasons is high flow oxygen helps you metabolize and use your meds better. Oxygenation therapy may not be much better than placebo but hey if it helps? Fake surgery works on a number of conditions 35% of the time. It may actually be higher than that with real surgey having a placebo effect, as there are number of conditions that return after several years following surgery that one wouldn’t think would if the surgery worked…

TJ


#17

Not sure it’s been done, fake surgery, never found it, but if not the case, it should be in the case of MVD for TN.

It would be of interest, and i’d actually put my half of the house on it being greater than 35%.