Undiagnosed, New to ES

Ahwh Gwen. I was thinking of you and wondering how you are doing. Stay away from the UW docs. They are arrogant and dismissive. Not to mention, after having had a surgery there, I would never ever have one again. Although I know UW being investigated on this issue, I dont know the final outcome. It appears that someone in the OR or Recovery room was stealing drugs. They have a high rate of turnover and alot of traveling nurses. Its ripe for this kind of stuff to occur.


So excited you got your CT scan order!!! :woman_cartwheeling: :dancer:
I cant remember if I asked if you had ehlers danlos - hypermobility re: neck instability. YOU very much have been down the same path I have trying all the treatments. I do recommend you make an appt with Dr. Hogan in Tacoma. Just get it on the books and can cancel if needed. He is such a supportive kind doctor and his injections have helped me. I apologize if I have forgotten your answer. My daughter had an expander and I recall it wasnt a good ride with the adjustments.
Gwen suggested to me a long time ago to see TMJ/Oral facial specialist in Seattle by the name of Dr. Pehling. He really is a wonderful doctor but expensive. He is not in network and services must be paid at time of service. You have to pay $100 deposit to get a consult appointment with him. He did a cone beam CT of my jaw in his office and reviewed in depth with me. I discovered I had pretty severe osteoarthritis in one side and alot of remodeling and flattening in the joint making it jam back on the other side pinching my trigeminal nerve and causing a pretty big bite issue. He walked me thru what was wrong and I really had a good understanding when I left his office. I had already had on ES side done and went ahead with the 2nd in Dec 2020. About 2 months ago, I went ahead and got the suggested appliance ($2250) to reposition my jaw and interrupt my clenching.Im curious of this jaw surgery you had and what type of doc suggested this treatment you had. Have you ever tried botox in the massetter muscle to relieve the tension?
Im glad you found us here. Getting diagnosed is half the battle and you are almost there. :smiling_face_with_three_hearts:


If you see Dr. Pehling, count on dropping $800 to cover cost of consult and jaw CT. It is worth just for the consultation alone.


I had seen several chiropractors who never mentioned cervical instability or ehlers danlos. I actually think my issues started becuase of some of the standard high velocity cervical adjustments that were done on me. I was eventually diagnosed with cervical instability (but not ehlers danlos) from a cervical specialist in Florida who did 5 prolotherapy treatments on the cervical ligaments. I can tell there is more stability (my head doesn’t feel like a bobble head anymore), but it didn’t help any of the ES type symptoms.

One of the first specialists I saw was a TMJ specialist who referred me to an orthodontist in Lynnwood who specializes in neuromuscular dentistry and remodeling the jaw to decompress the joints. He did a bunch of testing including a CT (I don’t think it was a cone beam) and ultimately discovered that I had forward head posture and that my upper jaw didn’t fully develop, causing the lower jaw to compress the joints. He applied a growth appliance to my upper teeth, which basically grew the bone and allowed space for my lower jaw to move out. It sounds like this might be a similar appliance to what you currently have. He did do a couple of botox injections, but I didn’t seem to get much relief. TENs massage doesn’t seem to help much either.

Thanks for the recommendations for Dr. Hogan and Pehling, I will reach out and get some additional info. Hopefully by this time next week I will have a more definitive course of action.

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Hi alwaton,
Ive had prolotherapy myself for cervical instability back in my 30’s & 40’s and have seen chiropractors for decades since a couple whiplash accidents in my early 20’s. Im now 65. The orthopedic surgeons who were doing the prolo injections were one of the earlier users of this. They also did a cocktail in the injection which included chondroton sulfate. They felt my neck had been overadjusted and wasnt holding anymore. They mentioned I was hypermobile and had fibromyalgia but it wasn’t until about 13 years ago were my youngest daughter & I given a diagnosis of Ehlers Danlos-hypermobility by a geneticist. My son has some mild symptoms and my other daughter was diagnosed with Regional Pain Syndrome.
My youngest daughter has had a narrow palate and had an expander and then two rounds of orthodontics. I am now taking her in to see TMJ doc in a few weeks as she is having jaw issues as well.

I have found that a few botox injections not helpful and the dosage was upped. Dr. Hogan said it can take up to a year or more of quarterly injections to get the full benefits. The steroid injections I noticed more quickly. I had some acupuncture in my jaw with a tens unit attached to the needles which I never had before and it seemed to really help. I was surprised. Every body acts differently to differently techniques and the key to finding the right ones.
When my neck goes out, I have no choice but to get a chiropractor adjustment as it si all that works to get things back in place or I have severe headaches. I do this with a regular massage regime. I will say at times before ES surgery, sometimes massage aggravated it.
Of the many things I had had done and not till later in my life is craniosacral therapy. It is very gentle subtle but powerful work and would not interfere with Eagles stuff. It is very hard to find a good practioner. Dr. Pehling just recommended a good DO in Seattle and I hope to try him. I live across the pond from Seattle so it isnt always easy for me to go to regular appts. Here is website: https://seattledo.com/

Hope this helps.


Hi Snapple,

I am sorry your family is dealing with some similar issues. It is amazing how genetics can affect us. My mom has some similar issues with arthritis and fibromayalgia, so I wonder if we could have Ehlers Danlos.

Thanks for the information about the botox and steroid injections, I will definitely look into those in more detail depending on my CT results.

I live on the Eastside of Seattle as well, so I know how difficult it can be to get into Seattle for appointments. The first specialist who referred me to the orthodontist was a doctor who specializes in craniopathy (the Sacro Occipital Technique). He is in Bellevue, which may be a bit more convenient for you. I only saw him once so I can’t provide a great recommendation, but I did have a great appointment/treatment. His name is Dr. Jason Scoppa. https://www.structuralmed.com.

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I got the results of my CT and here are the exact findings:

“The left styloid process approximately measures 2.8 cm in length. The right styloid process approximately measures 3.0 cm in length. At the distal tip of the right styloid process there is an additional 5 mm slightly discontinuous linear calcification that is oriented in the same direction as the styloid process. This could be due to a chronic fracture of the tip of the styloid process versus focal calcification of the stylohyoid ligament.”

I am not exactly sure what to think about this. The length doesn’t seem to be the cause of the issues necessarily, but maybe the potential fracture is? It almost sounds like the right side was 3.5 cm and then it got fractured. Either way, I think this would explain a lot of the issues I am having on my right side. Has anybody else had similar results? Do you think this would be enough for a consultation with Dr. Samji?

Thanks again for all of the help! I am hopeful that these results will finally explain everything!

I think you should send your results & CT scan to Dr. Samji. It sounds to me like your symptoms can be justified by the CT findings. He will measure the styloids himself from your CT, & his measurements are often different (i.e. he measures them as longer) than the radiologists do. It may be that he adds a little for the gaps that naturally occur between each CT slice which would give a more accurate styloid length.

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It is definately worth a consult. Anything over 2.5cm is worth a consult IF you are having symptoms.

I was told I had segmented calcifications too by 2 radiologists however this is why Dr. Samji reads his own scans. He showed me as well as explained that he often finds it is all contiguous and not in segments. He has seen enough of these scans to get a good idea of this. He explained that when they do CT scans or MRI’s, they do them in slices. The software then interprets what “might” be in between the slices. Many radiologists are not as experienced reading ES scans as Dr. Samji. Its quite possible your styloid process and this “discontinuous linear calcification” is connected making it 3.5 cm.


Thank you both! I just mailed off the scan to Dr. Samji. I just realized this isn’t the specific kind of scan he requested, so hopefully he still accepts it.

Snapple - does Dr. Pehling do the steroid injections? I think it would be worthwhile to see someone locally to try and get some temporary relief until I can get into see Dr. Samji.

Actually, if Dr. Samji believes you have ES based on your CT results, you’ll receive an email to set up a video consult with him so you don’t have to travel to CA for that initial appt. After the consult, you’ll be able to schedule an appt for surgery.

Hi again. I am sick again but saw your messages. If there is a fracture in there, something is definitely wrong and I think you are on the right track.

Dr. Pehling does do steroid injections. I also get Botox injections for my eye and other areas. I found him in late 2016 when almost all doctors thought I was having mental psychosomatic pain. I will never forget him telling me that my pain is physical and real. I was crying and a super nice nurse (his wife) just let me cry and talked to me forever - she said that people fly in from other states to see him.

Like you I had weird symptoms. He stuck by me and wouldn’t give up. His wife used to work in the office but not as much now, but the staff is great.

I have been paying out of pocket- they can print insurance invoices- I just have bad insurance. That has been hard but the relief and help is priceless. (Dr. Jason Pehling)

Snapple - my dog ate my appliance- OMG. It had been over a year so new impression and due to that the replacement cost 2/3rds, and he changed it a bit. I would lose it everywhere because it is clear.

I got it in pink this time - I just need to not be sick and have an appointment to pick it up. I haven’t had one since April due to illnesses and it has been really really hard.

I don’t think anyone will see the pink when I am wearing it. I jokingly asked for sparkles.

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Has anyone paid out of pocket for Dr. Samji? (I have to have an insurance policy through Medicare Advantage, and it varies by state. Mine doesn’t cover it, but if I can change it for next year… I just don’t know if there is a policy available here they will take)

I have yet to get my CT scan as opposed to the 3D cone CT scan. Hugs

I’m sure Dr. Samji has had patients pay out of pocket, & I know for a fact he’s seen Medicare patients from other states. Medicare requires surgery to be done in a hospital w/ an overnight stay. There is no insurance that I know of that has a procedure code for a styloidectomy. Dr. Samji bills ES surgery as a craniectomy. Your current Medicare plan may pay for that. I don’t think he gives a cash discount for a video consult, but he/his business ofc does for surgery. Snapple2020 wrote a long explanation about how to negotiate w/ the business office, hospital/surgery center &/or doctors themselves to get a lower price if you’re a cash paying patient. It’s embedded in a recent thread. I’ll try to find it & send you a link.

He won’t accept a cone beam scan for sure so get well soon so you can have your CT scan done.

I’m really sorry you’re sick again. Sending you a hug. :hugs:

Found it! Cost for Canadian to travel to US for surgery? - #8 by Snapple2020

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alawton, Dr. Pehling does do injections but it likely will not be covered by any insurance as he contracts with ZERO of them. Rarely can I get anything covered by insurance with his office and they require payment at time of service. Dr. Hogan in Tacoma however is covered by most insurances. It may takes months to get into see Dr. Hogan but if you press them they may be able to get you in sooner. You can usually get into to see Pehling pretty quickly. Count on injections of about $200 and OV of $180+

HI Ms. Gwen :smiling_face_with_three_hearts:
OMG about your dog eating your appliance. :rofl:
I was wondering about the replacement costs because I had to have a tooth extracted 3 weeks AFTER I paid and received mine at $2250! My teeth are moving because of it and I am hoping I dont have to do a new one! I showed Dr. Pehling an appliance case my daughter gave me that glows in the dark. He seemed pretty interested. Its nice to have on the bedside table.

As for your medicare advantage. I just was forced onto medicare now in June and chose a Regence advantage classic PPO plan (about $87 month) with a dental add-on that does allow for travel. Dr. Pehling’s biller didnt bother to disclose his office opted-out of medicare at the same time they said they would bill insurance. He also gave me RX for expensive compounded medications they were denied by medicare as well. I spent a week arguing (while in extreme pain) and appealing with Regence when medicare just plain does not pay for compounded medications. Injections are rarely covered by any insurance with him as I just learned after a $380 visit that included emergency injections. I’m pretty upset with how the office biller rides the razors edge about disclosure of actual medical coverage for all his services. There is no reason not to disclose this to patients up front or help advocate for them the best they can within their medical plan. grrr…sorry for venting.:rage:

So back to medicare advantage. I do know that Dr. Samji is contracted with Regence so he may be in network with Regence under medicare advantage plan. You just need to make sure you pick the right advantage plan level. You can call Bass medical group billing to find out which plan is covered. I just did this with my daughters billing PT group and will likely change hers come NOV. I have found out the hard way the past 2 months that medicare sucks and there are hidden loopholes and mine fields everywhere especially if you need specialty care. Check and double check coverage with medicare prior to services and find out the contract end dates as many docs don’t renew their contracts.


I just had a follow up with my PCP who I convinced to order the CT. He completely disregarded the results, saying everything looked normal, including the calcification. Hopefully Dr. Samji disagrees! He has received all of my paperwork, so hopefully I will hear something soon!


Most PCPs have no clue about ES, alawton3214, so it’s not surprising that yours would have been dismissive. Letting Dr. Samji be the judge is the best plan. The good news is, if he thinks you have ES & he can help you, you will be contacted to set up the consult. The bad news is, if he doesn’t think you’re a candidate, you will receive that information & no appointment. I hope you’re able to get a consult soon!

I had my consultation with Dr. Samji on Friday and he said I would be a good candidate for surgery! He measured my right styloid to be closer to 4 and most likely fractured/angled inward. I just booked my surgery for Nov 1st. I can’t wait to get this out, but am also nervous. As he was describing the surgery process, it was making me cringe! I didn’t realize he has to dislocate the jaw in order to get access to the styloid. I have been going through a lengthy TMJ treatment process over the last couple of years, so I need to talk to my orthodontist to see how that could affect the progress I have made. Overall, I am excited! I will be combing the site over the next few weeks looking for recovery advice. Thanks again for everybody’s support and guidance!

Very pleased that you have a date for surgery with Dr Samji! I’m UK, so not seen him myself; maybe others who’ve had surgery can chip in with info. But I’ve not heard that the jaw has to be dislocated for surgery to get access for the styloid, Dr Samji does external surgery so gets access through the neck incision. The only jaw issues I’ve ever read about are when members have soreness after being intubated, but that’s more because of TMJD issues & the intubation causing that to flare up from my understanding.
If you search for what to expect after surgery it’ll come up with lots of discussions about that & info, plus you can search for the surgery shopping list for ideas of what you might need afterwards.