It’s been a while since I’ve posted. Ive been focusing on my jaw issues the last few months as I learned my jaw joints have significantly deteriorated in the last couple of years (been diagnosed with osteoarthritis in both of my TM joints since 2018) and that I need to get bilateral total joint replacements.
In January I was able to schedule a consult with Dr. Hepworth here in Denver (where I live). One of my newer symptoms was a clicking/snagging in my neck/throat when I turn my head. I suspected it is my hyoid bone because my styloid is actually rather small, though a cm in the middle of the ligament is calcified, and that it could be due to the fact my lower jaw is moving backwards and up due to the deterioration in my condyles. My plan was to keep my consult with Dr. H so I could establish care and also ask him about the hyoid bone and the clicking. I thought maybe it would get corrected by TJR since it will give my lower jaw more projection.
I finally had my consult with Dr. H this past week! He is as great as everyone has said he is. Sarah, his PA who I saw a few days before my appt with Dr. H, ordered a jugular ultrasound. The ultrasound showed my left IVJ is pinched, and Dr. H said my right one may be as well even though the velocity isn’t as high as my left IJV. (I get tingling in both hands and can lose my ability to raise my right arm to 90° or higher). He ordered a CTV and prescribed me blood thinners. We scheduled a follow up in 6 weeks.
Dr. H recommends we do surgery in December, which is probably much sooner than I will be able to get TJR surgery for my jaw. I’m still meeting with surgeons for consults and working with my insurance since the TM joint is excluded from my coverage huge eye roll and will likely need to get braces before surgery so they can move my teeth around to where they need to be.
I feel validated by the IJV compression diagnosis but also overwhelmed. I honestly hadnt prepared myself for the possibility of having to get two very serious surgeries in the next couple of years.
Has anyone here also been diagnosed with degenerative joint disease or condylar resorption? I am curious about your experience treating both.
Also curious if anyone can take a look at my ultrasound results. Is it the case the compression is occurring in two places on the left side? My acupuncturist did a test for TOS when I saw him yesterday and he said he could barely feel my pulse on my right side even in the “neutral/baseline position. He said he had never seen that before. My left side wasn’t as bad, which I thought was interesting since the compression appears worse on that side.
Since your blood flow velocities are high at C1 & base of neck on the left, it appears you may have two constrictions on that side. It looks like compression on the right is mild as your velocity at C1 is somewhat elevated.
Your right arm symptoms & lack of pulse in that arm could be symptoms of TOS. I’m sorry you may be looking at yet another surgery to resolve that although there is a small possibility getting ES/IJV & your jaw joints taken care of could reduce the TOS symptoms. It’s kind of crazy how interconnected our body parts are.
I’m sorry I can’t answer the TM joint degeneration question. I know my TM joints are both in bad shape but the pain from them went away after my styloids were removed so I haven’t pursued care. I did have braces in my late 40s/early 50s to realign my bite which was helpful for several years with stopping my jaw from locking open.
We have had a few members with TOS & ES; some have found whichever surgery they do first can alleviate the other symptoms, others have had to have surgeries for both…just another thing to add into the mix!
Again with the jaw joint some find that surgery has worsened it due to the positioning/ intubation during surgery (if you do opt for surgery with Dr H it’s certainly worth mentioning), others as @Isaiah_40_31 says have found it improves…
I’m UK, TMJD is not something which seems to be as commonly diagnosed here!
Hi, based on my own jaw surgery experience I’d say do not rush in to jaw surgery if guards/physio or other less invasive methods could help. I’d focus on JV decompression first and recovery time. Then reassess next steps. Take care. D
Tbh I think my TMJ issues came first. My styloid is very small and not in an unusual angle, but i’ve had TMJ issues since I was 14, and skeletal abnormalities in my upper and lower jaw that made me more prone to TMD. I have read somewhere that calcification of the ligament can occur due to the extra stress put on the muscles surrounding the TMJ bc they overwork to compensate for what the joint can no longer do (in the case of degeneration or displaced disks)
@Rlr286 - I can’t recall if you ever posted how your appt. w/ Dr. Hepworth went. Was it “a go” in May as scheduled? Was it helpful in providing you with some next steps?
wow great memory! yes i had my consult with Dr. Hepworth last month. sorry for not providing an update!
his PA ordered a jugular ultrasound earlier in the week, which Dr. H reviewed with me. it showed IJV compression at C1 and the base of my neck, predominantly on the left side (which is the dominant vein). unfortunately the office didn’t upload the CT scan i had sent them ahead of time to their portal so Dr. H wasn’t able to review it. it was w/o contrast anyway, so he ordered a CTA/CTV of head and neck. we scheduled a few follow up appts in 6 week intervals, so he will review the CTA/CTV at my appt with him on the 18th. he also put me on blood thinners but i didn’t start them until last week bc the medical assistant forgot to put the order in and i had trouble getting into contact with them (finally had success reaching out to the surgical coordinator and asking her about it). the blood thinners do actually seem to be helping, which is pretty sweet.
Dr. H suggested scheduling surgery (left styloidectomy) in December, but said we can always cancel it, he just wanted to get something on the books. so i’m scheduled for dec 4th! he also advised i check my pituitary and adrenal function with my PCP, as well as test for auto immune diseases, and see an ophthalmologist to get tested for papilledema due to double vision.
i’m very curious to see what he says at our follow up later this month. for now my pain levels are manageable with the blood thinners and muscle relaxers. i’ve also started going to acupuncture which has been very helpful!
Thank you for your quick reply! I’m really glad your appointment with him went so well & you have a plan to help you move forward with treatment. I spoke w/ Dr. Hepworth today & the disorganization in his office is being addressed. He said it will be Aug. before things are finally corrected, but I just wanted you to know it’s in the works.
oh that’s great news! i feel fortunate that i live 10 mins from his office because ive told myself if i ever NEED to get through to someone, i could just show up in-person lol. im sure this will be sooo beneficial and a huge relief for all of his out of state patients!
also i owe you a huge thank you as you were who told me in January that he was accepting new patients; i had given up after many failed attempts at the end of last year. i’m grateful to have been able to get one of those spots. you have been so invaluably helpful to me the last 6 months, as well as @Jules.
it’s such a blessing that there are such strong senses of community/camaraderie with all of these rare chronic conditions. what would we do without the internet! haha
I’m so pleased that the blood thinner & muscle relaxants are helping you while you wait for testing & surgery, that’s really good, and glad that you have a date if you decide to go forward for surgery @Rlr286 ! @Isaiah_40_31 has a great memory keeping track of members’ appointment and surgery dates!
@Rlr286 - I’m very thankful that you’ve found good help & support here. Both @Jules & I have been where you are now & appreciated the support we got from this forum immensely, so it’s our pleasure to give back to our forum members now.
BTW you made me smile w/ your comment about living 10 min from Dr. Hep’s ofc…
