LUPUS UK
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Today’s Appointment: meeting my consultant- Oral and maxillofacial surgeon

Hey all, it’s a very important day.

Yesterday I had 2 hours of painful reconstructive surgery with my amazing dentist.

And today is important because we will be talking in detail about rare diseases & biopsies & investigations for PJS & TN disorder & TMJ Also with the surgeon I’ll be able to explain my severe electric shock (facial) pain & new symptoms. Also discuss impacted wisdom teeth removal. & my abnormal oral pigmentation- (melanin) lesions & growths, blood blisters & oral ulcers . My dentist referred me but as I’ve not been so well I couldn’t attend past appointments but today is the day I get to meet the lady my dentist speaks highly of. Hopefully we can figure out the missing pieces to my messy puzzle. I’ll let you know how I get on later x

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Hi Laura , wishing you good luck with your appointment, very interested to find out how you get on xx

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hey weathervane

thank you so much for your supportive message I really do appreciate it, sorry for my very late reply not intentional. as you can see from my update not long ago I was in a strange frame of mind, but after writing it I received a letter for oral surgery just under a month away. I hope your ok, how is life and health treating you? xx

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Thanks v much for posting laura: Well Done 👍

Please do post updates! Am wishing you every best wish🤞🤞🤞🤞🤞🤞

Your experiences are especially interesting to me because lifelong i’ve been managing v early onset recurring & persistent oral inflammation, erosive ulceration, gum recession and bullous blood-filled lesions + osteomyelitis/necrosis of the upper jaw (all linked to my SLE + SS+ hEDS slow transit mouth to a**s dysmotility)...lucky for me, my wisdom teeth were successfuly removed way back when i was 16 in the 1960s...

Take care

🍀😘🍀😘🍀😘 coco

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hey coco,

jeez, thank you for sharing that, its unusual for me to hear that someone else is or has gone through the same thing. its quite extensive stuff, and no one that I know has never experienced this. so as much as I'm horrified that you have/are struggling with this it also brings me comfort knowing I'm not alone. my jaw symptoms are very bothersome, I cannot rub my right side of my face or a slight brush against my jawline brings electric shock pain and its very intense. I know its definetly nerve related. a slight touch to my jaw sends bolts of pain to right eye which then seems to linger between half hour to an hour.

who diagnosed your osteomyelitis/necrosis of the upper jaw ?

I'm intrigued to hear how the process went prior to your diagnosis...

x

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Very lonnnnnng, involved story....20 years of dentist saying symptomatology following upper jaw molar root canal...finally infant onset SLE diagnosis recovered at exactly the same time osteomyelitis revealed after troubled molar extracted & lab reported +++ nasal passage infection...which made rheumatology order GP to get urgent xray of upper jaw & associated sinus. Osteomyelitis lucency reported on xray (the possibility this might’ve been osteonecrosis was on,y mentioned, but never pursued...i just bear it in mind...)

Then straight into care with Maxillofacial + ENT clinics during 5 months on daily high dose oral flucloxacillin. Meanwhile immunosuppression treatment continued. Eventually discharged when imaging of jaw & sinuses was “clear”. But my case remains “open” because am in care with immunology for early onset PID (hypogammaglobulinaemua G,A,M) and on daily anitbiotics indefinitely to control chronic pockets of bacteria driven sepsis (the osteomyelitis + sinusitis + gastritis + utis with pyelonephritis)

Hope something in there is helpful. Am feeling for you. My experience of this was bery painful indeed, but fluclox was v effective, although it is one of THE most unpleasant antibiotics i’ve ever had to take

😘🍀😘🍀😘🍀

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PS just read your long update, below. I agree: all the medics caring for me were VVVVVV off hand about my case. It was a DREADFUL ordeal! My good GP kept saying: multidiscipline care is hard on medics & patients alike. It was as if no clinic wanted to stand up and lead...and no clincs wanted to follow either. Hang on in there...am so glad you’ve got such a good dentist!

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Wow Laura, you have to be the bravest lass to go thru all this!. Fingers tightly crossed you get answers that you need!. Look forward to your updates and TAKE CARE. Lots of TLC as you do deserve it!. X

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aww hey Misty,

Thats the most loveliest thing that I've heard in a very long time. Thank you so much.

Were All very brave indeed.

Thank you, TLC is most needed, and it starts with a hot bath, relaxing music and a bath salts ! that's my plan for this evening.

I hope things are running smoothly for you, and your pain isn't to bad at present, take care of you and please keep me posted on your progress or simply don't hesitate to stop by and say hello xx

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Hey girls,

I’m sorry for my late reply, I’ve been struggling to get my head out of the rabbit 🐇 hole!

I was due to seen DR A (female) instead I saw a member of the team, DR T (guy) I assumed I would have time to discuss the possibilities of PJS- (Peutz–Jeghers syndrome) & TN- (Trigeminal neuralgia) I couldn’t get a word in edgewise. DR T was like the White Rabbit from Alice in wonderland.. it was an important day for me but all I was doing was taking up his precious time ⌚️

Before I could sit down in the chair he was rushing me, time watcher. Pen clicker, eyes were rolling in the back in his head, he was very condescending

I hadn’t even opened my mouth at this point... talk about judging a book by its cover. He had a such a bad attitude & negative approach towards me.

Anyway I handed him a X-ray taken by my dentist a couple of days before, it allows the surgeon to see the extent of bone loss from the abscess that took a year to drain. But he chucked it on the side, didn’t bother looking at it.

It was extremely awkward but I persevered. I decided to speak up & ask some questions.

Long story short, he rushed me to the chair, examined my mouth. Expressed vaguely about the abnormal tissue of the pigmentation on the floor my mouth, I asked what it could be & again his eyes were rolling & I said abruptly “it’s important for me to know if it’s benign or not OBVIOUSLY! “ Silence.... yes it’s abnormal but we don’t know what it is until we Biopsy & remove the abnormal tissue & cells. “But If it was anything sinister I don’t think you’d be sitting here right now ” not very professional. & dam right rude to be honest & not correct ! My dentist was concerned about the dark pigmentation & how it’s continued to spread along the floor of my mouth & under my tongue . DR T on the other hand just couldn’t be bothered to investigate.. that was the main reason why I was there!

Inbetween being prodded & poked, I took the opportunity to mention the X-ray again & TN... DR T said it’s a rare disorder.. not sure you qualify..

PJS- He didn’t know what it was & yet my dentist explained that during training they all were educated on the rare disease & have not yet come across a patient in there care who has it. But it’s not impossible, he looked it up on google!!!! And he said well unless you have pancreas issues & systemic problems, having a colonoscopy or investigations you don’t really fit the bill. I SAID LOOK AT MY MEDICAL QUESTIONNAIRE THAT YOU MADE ME FILL OUT!! I’m awaiting a colonoscopy & tests ! I do have systemic issues, I’ve been very well unwell for a very long time! I’m sure if you look through my case file you would see the extent... “ I haven’t the time”

He couldn’t access my medical records. Didn’t receive an update on my recent dental findings, Assumed the pain in the right side of my face was a ABSCESS!!!! No no no !!!! If he looked at the god dam x Ray it shows there is no bloody abscess but there is something growing on the tip of the sinus cavity. It’s clear on the X-ray but he was to blind to care !!

So I have two growths on the soft pallet, & two impacted wisdom teeth, lesions in my throat. Reoccurring blood blisters & ulcers.. he quickly booked me in for day surgery under GA. (Which was the one good thing). So I asked about the time frame- 4-6 months !!

(Removal & Biopsy of everything listed above)

I came out feeling Angry! I was treated poorly, I got my hopes up thinking it was going to turn out great & yet again I’m let down & feeling completely pissed off! Ive had a meltdown the last few days emotionally AWOL & I’ve also got in touch with PALS. I need some advice. Because every appointment I go to each individual consultant seems to have a personal Issue with me & I want to know why. I know I am a complex case but seriously there are others out there just like me who are struggling to be heard & yet denied of care.

I wrote a personal email to my dentist, she is great & she told me if I ever have any issues & im not happy about certain things then to contact her.

I explained that I was dissatisfied with my appointment at the oral & maxillary facial clinic, the surgeon wasn’t what I expected & I wasn’t happy with the way I was treated. You made me aware that my biopsy’s would be classed as urgent but the time frame now is 4-6 months. If there is so much concern why isn’t it being brought forward & why if it’s abnormal am I not being taken seriously.

I would like to be referred to the DR A only & get a second opinion please.

I always feel like I get the short end of the stick, I’m always polite towards these medical professionals. I don’t enter there office like a bull in a china shop. I’m not arrogant and I don’t have a bad attitude. I’m meek and shy & respectable. But there are times when I feel like being abrupt, direct and straight to the point. I think before I act!

If I’ve done something wrong I hold my hands up but I’ve only been understanding patient & listened to what these people assume is the problem with me. I haven’t argued back, but I am not willing to spend another year in limbo in the hands of medical professionals who don’t actually give a flying shit if I lived or died.

I don’t trust anyone with my life anymore. I am doing what I can do help myself, but I’m running out of ideas of how I can convince these doctors that I am actually sick !

Despite all the positive blood results & abnormal findings I am just an invisible soul. Even if my head was rolling off I would be classed as an option.

To know I have abnormal evidence Is worrying to some extent. But wouldn’t it be easier to sort it sooner rather than later and at least then I’ll be out of there Hair!

I do feel like a burden, I do feel like there is no end to this tunnel. I feel as if I’m on a treadmill & I’m running but stuck on the same spot. I’ve got nowhere. At times when I think I’ve made progress I hit a wall, or come to a dead end and it’s safe to say now that I know, no one wants to help me.

Why are all my posts negative 👎🏻? Because I’m being referred to consultants who don’t have an ounce of empathy or wisdom to help me. I’m COMPLEX! & a extreme case that no one has time for.

What is the point being a DR If you don’t care about your patients wellbeing. I’m sure the ones I’ve met and dealt with enjoy my misfortune!

I’ve drawn my body on paper, (anatomy) and I’ve put arrows and a brief description along side it to explain what’s wrong with each organ.

If I could take this to my Gp and Say referrer me to each specialist run some tests and eliminate the problems one by one. Then that way I will have some indication of what is going on inside me! I know I have an exhausted list but I need someone who knows about rare diseases & deserve some time spent finding out the root cause. Instead of being thrown from pillar to post. I know the NHS are up to there eyeballs, but surely the vulnerable should have a chance too.

The only professional that’s ever wanted to really help me is my dentist. She’s picked out umpteen amount of problems that she knows I’m faced with daily plus she takes me seriously. She really does care and I feel that! She’s as angry as I am that my Gp/hospital/and various past & present consultations have been a complete waste of time. Why is it she has time for me & others do not.?!

God..., one day I will have a genuinely good experience with the NHS service, but until then it’s up to me to find a good doctor out of my county. Someone who’s clued up not clueless !

Actions speak louder than words...

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I am simply lost for words with regards to the way your appointment was handled. Dreadful!!😡 I am sure I read an earlier post of yours re all of this and it seems you have been dealing with it for a long time? 😏

You truly have my absolute sympathy. I feel cross and angry for you. It troubles me the way some Drs/Consultants conduct themselves in a way that gives you no confidence whatsoever in our NHS...(I have story I could tell but that is perhaps for another day). Certainly knocked my confidence a number of times. No one should be made to feel like a burden. - ever! So pleased you have contacted PALS - it has to be done!

I know I haven’t added anything to help your situation as it is right now, but I wanted to send my support. There is nothing worse than building yourself up for something like this only to be knocked completely back by someone who doesn’t give a flying fig! Sounds to me as if completely out of his depth! Maybe the time to stop thinking before you act?

As for negative post - phew! No wonder...who wouldn’t feel negative after that???

A massive dose of TLC is the prescribed medication of the day.

Unfortunately a bad day today but tomorrow you will get yourself back on track and even more determined 🤞🏼

Sue. X

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I feel the same as minnskimoo , you have been treated appallingly, it really is un believable. My heart goes out to you and I hope that the second opinion comes up with positive results . Im sending you ALL my positive thoughts and wishes. Please let us know how you are 💐💐💐🌺🌺xxx

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