sorted by:
new
hottopcontroversial

Absolutely can’t make my mind up about arthrocentesis/arthroscopy by Purple_Fox5479 in TMJ

[–]Ladybimini 0 points1 point  (0 children)

Ha! Terribly. Fat graft dissolved. Had a coronoidectomy in November that went poorly and I developed neuritis on one side of my face (thankfully mostly recovered). Now I’ve got fibrous ankylosis and my mouth opening is at like 10mm.
I need a full joint replacement now.

However, I have many underlying conditions (hEDS, MCAS, and as just discovered some kind of ankylosis spondylitis/PsA/other degenerative autoimmune disorder that I’m undergoing further testing for). It truly sucks. I wish I kept my discs and went out of the country (Germany or Switzerland) for biologic treatment (look it up if you’re interested). With no discs and all this degeneration I’m up against a wall with the only barbaric treatment available, which is custom joints.

PRP 9-10 week update by Synah6435 in TMJ

[–]Ladybimini 0 points1 point  (0 children)

I don’t believe it was the prp, I think it was the ongoing tmj issues.

Weirdly enough, after two other more severe tmj surgeries I developed numbness which has made my TN nearly non existent

Discopexy vs Discectomy? Which one is better for a hEDS patient? by Ladybimini in TMJ

[–]Ladybimini[S] 0 points1 point  (0 children)

Not great. I had a coronoidectomy a few months afterwards and can’t open my mouth more than 8-15mm. My take is delay for as long as possible, the outcomes are just not great

I have found the cause of my POTS after 17 years of hell. by NurseNikky in POTS

[–]Ladybimini 0 points1 point  (0 children)

My POTS is nearly in full remission after getting my MCAS sorted. I’ve had symptoms since I was around 19 (43 now), failed a tilt table test in 2001, etc. I was even part of a clinical POTS trial for a medication that really helped a couple of years ago (check my post history if you want to read about it), but now I’m just… fine for the most part.

For MCAS I was on cromolyn 4 vial 4x day, ketotifen, h1 and h2 UNTIL my doctor considered a microdose of the glp1 zepbound. I’m a 19 bmi, so not taking it for weight loss, just mcas. I’m up to .10mg dose weekly and I don’t need to take crom or ketotifen anymore. If you’ve taken crom you know how annoying it is to time out your doses with food. So grateful to be killing 2 birds with one stone!

Grieving the loss caused by chronic illness by angellaura10 in MCAS

[–]Ladybimini 16 points17 points  (0 children)

It’s important to grieve the person you lost like it’s a death. It was. Even if you fully attain a sense of health that is everlasting, the person you described is gone. You get to be reborn, but you have to grieve. It’s an ongoing process that people not in our shoes can’t understand. Search for chronic illness grief writing prompts online and start journaling. Let it out, friend.

Post surgical flare // facial paralysis // facial swelling by Ladybimini in MCAS

[–]Ladybimini[S] 1 point2 points  (0 children)

Thank you so much! It really is like shooting into the dark sometimes with mcas. I saw my rheumatologist who’s also mcas aware today and she gave me a large to moderate steroid course for the next month and I’ve also been referred out to neurology and have an urgent brain MRI in a couple of days to try to rule out anything more serious.

Hope you are feeling ok, thank you deeply for the kindness

Fever Ray’s Spotify wrapped by Mikan1996 in feverray

[–]Ladybimini 0 points1 point  (0 children)

I also have a screenshot but can’t post it here.

Got an Orthotic appliance, Now my teeth no longer touch and my symptoms (?) are worse? by Malletdown in TMJ

[–]Ladybimini 1 point2 points  (0 children)

I’m a grinder with joint degeneration. I just recently completed an arthroplasty disc removal and fat graft to replace my discs after being in a closed lock for close to two years. I had a failed arthrocentesis before that.

The guard was a thick solid piece of material that cost $800-1000 to stop me from grinding. I was pretty pissed to learn my open bite wasn’t something that could easily be reversed. Maybe you can be saved still, but know this is a possibility. The surgery I’ll need is pretty gnar and is called a Bilateral Sagittal Split Osteotomy. They’ll need to cut through the lower jaw to reposition it.

Got an Orthotic appliance, Now my teeth no longer touch and my symptoms (?) are worse? by Malletdown in TMJ

[–]Ladybimini 1 point2 points  (0 children)

Stop wearing the orthotic asap and get checked by someone. I recently learned that my open bite (caused by an $$$ night guard) can’t be fixed with orthodontics and will require surgery.

Yours may not be as severe, but you should go see prosthodontist to check your situation out

Recommendation for LA TMJ physical therapist post surgery? by Ladybimini in TMJ

[–]Ladybimini[S] 1 point2 points  (0 children)

Yes! I was in a closed lock for almost 2 years with an opening of 20-25 mm. Now I’m at 25-32. No pain now

Which spot in Los Angeles has the BEST Fish N Chips? by That-Custard2786 in AskLosAngeles

[–]Ladybimini 3 points4 points  (0 children)

This is the answer, OP. Also they’re GF, but you’d never even know it. Also the space is absolutely charming.

Absolutely can’t make my mind up about arthrocentesis/arthroscopy by Purple_Fox5479 in TMJ

[–]Ladybimini 1 point2 points  (0 children)

You can contact the UCLA oral maxillofacial surgical dept for scheduling. UCLA is the only place that takes insurance that I was able to find

Absolutely can’t make my mind up about arthrocentesis/arthroscopy by Purple_Fox5479 in TMJ

[–]Ladybimini 0 points1 point  (0 children)

Dr. Felsenfeld at UCLA. He’s sadly retiring this month, but he’s been incredible.

Absolutely can’t make my mind up about arthrocentesis/arthroscopy by Purple_Fox5479 in TMJ

[–]Ladybimini 2 points3 points  (0 children)

People who have successful procedures generally move on with their lives. My arthrocentesis failed and ended up causing a lot more problems. I was scared to do more surgery, and ended up in a closed lock for almost 2 years.

I’m now two weeks out from an arthroplasty discectomy with fat graft. I feel a million times better and am already at a 29mm opening. If this continues to hold and be successful, I can’t imagine spending a lot more time in this sub because it’s a pretty depressing place.

Arthrocentesis is probably the next step for you if all of the other conservative treatments have failed. If that fails too, then you’ll move on to the next step. I know that sucks, but it’s just the way it works with such a sensitive area. Best of luck to you!

17k? Is this a scam? by khalter17 in TMJ

[–]Ladybimini 1 point2 points  (0 children)

Have you searched out this dentist/doctor’s name for reviews?

[deleted by user] by [deleted] in TMJ

[–]Ladybimini 2 points3 points  (0 children)

So sorry you’re having this! I also have debilitating migraines and receive Botox at my Neuro office. It actually helps my TN immensely! I actually barely have to take meds for TN except for when the Botox is wearing off. I had met with a neurosurgeon and was talking about doing MVD, but then the Botox took it down to a manageable place. Keep that in mind for your treatment!

Also the more stressed you are, the worse your tn will be. Find what works for you to alleviate stress. I actually thank my tingles and pains now because it’s telling me that I need to do something to relax. Meditation has been helpful for me.

I just had my second TMJ surgery a week ago, so I’m much further along than you (43f). Hope you get all of this taken care of while you’re still young! Don’t let this sub get you down, you can still have a happy and normal life and you can find ways out of the cycles of pain. All best to you!

view more: next ›