As of now, I get scalene relief in spurts from (3) things: working with an advanced orthogonal chiropractor (who uses a specialized sonic pulse adjustment that is very minimally invasive), and then getting the regenerative treatments, as well as working on cervical curve (lordosis) correction with a properly certified doctor.
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Same here. I think I spent around $10k on prolotherapy and it did nothing. They just kept recommending more. Iād be interested in hearing more about the PICL Dobbs. Where do you have it done? Do you mind if I ask how expensive it is? Thanks and happy that itās working for you.
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I tried atlas adjustment for about 3-4 months last year with an orthogonal chiropractor. I didnāt have any luck but that was before my surgery.
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CCI is essentially a spondylolisthesis. One vertebrae moves more forward or backward than the one above or below on flexion/extension. There are different grades as well. Physical therapy can also help this by strengthening the muscles to support the vertebrae with the loss or stretching of the posterior longitudinal ligament. Chin tucks are essential to support the spine. With elongated styloids this would be virtually impossible to do. For example, I canāt do them due to my styloids.
The thing with physical therapy is finding one whoās competent and isnāt treating 5 patients at the same time.
Also, Thoracic Outlet Syndrome should be considered as well. A flexion/extension x-ray will show you CCI as well as the measurement of the spondylo (movement) and what grade it is. Instability (spondylolisthesis) have different grades. Grade I is less severe. Grade 4 is very severe. Any doctor or spine surgeon will be able to measure and let you know the grade. Physical therapy helps very much with a grade 1 or grade 2.
The spine is continuous. For example, if you have an issue with C1 or anywhere in between C1-C7 it will affect your entire spine and the muscles involved. If the scalenes are involved, the pectoralis and scapular muscles may also be involved. They all effect each other. Itās not a one stop shop or segregated as it seems. What seems like CCI could also be coming from other areas as well that are exacerbating those muscles. A tight scalene muscle can wreak havoc on your life. A rib thatās out can cause the same symptoms as CCI.
A flexion/extension x-ray WILL show CCI. That is the gold standard.
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Thank you for this information, @Danielle1. Very helpful!
Have you made an appt. yet to see Dr. Hackman?
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@Isaiah_40_31 Yes! Iām flying in next week! My appointment is on 12/20!
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@stuuke Definitely try Atlas Orthogonal now with your styloids removed! It didnāt help me either. I couldnāt hold the adjustment for more than a day or two. I really think the styloids play a big part in not holding the adjustment.
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HOORAY! Iām so glad your appointment is coming up so soon!!
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I have EDS and considered mild instability in my neck (at least per x-rays and MRIās - grade 2) although it doesnāt feel mild. I have a long history of TMJ, and primarily ligament tears and nerve compression caused by scar tissue.I went thru prolo therapy in the 1990ās with some benefit but not long term. Long term chiropractic, massage, PT, injections. Cranial sacral therapy with a highly experienced provider has helped me the most.
I did not notice any changes in my neck stability after (2) Eagles surgeries. The surgeon did mention how tight my neck was when he sliced me open though. I suspect those with very bad instability and CCI might be another story and should use some more caution. EDS expresses itself so differently and there is no one size fits all approach to surgery.
Im 2 years out and having residual numbness under my chin almost ear to ear. I suspect its scar tissue from the Eagles surgery now compressing nerves. I am now having some re-occurent symptoms in my neck and ears that I had pre-op. Prior to Eagles diagnosis I was referred for injections related to TOS. This eventually led me to Eagles diagnosis. Im coming back around again to TOS worsening and been formally diagnosed with it. Although a new doc has suggested possible āgreater auricular neuralgiaā, " among a few other suggested things related to nerves in the neck that is causing my pain and that possibly the elongated styloids were not the source of the pain. I think when you have clear cut IJV compression from styloids, its an easier to sort out in some ways.
I had diagnostic botox in my scalenes and pec minor recently that put me off the deep end in pain. That is one thingā¦ I have no doubt my scalenes are a major problem for me and they are tight as hell. PT has only minimally provided relief. I feel sometimes like I am playing whack-a-mole trying to get to the source of the problem.
After seeing a couple TOS surgeons, I have come to the conclusion that they donāt want to touch me due to the EDS because they have seen patients get worse after surgery such as in hyperichards case. Damned if you do, damned if you dont.
@Snapple2020 Iām so sorry youāre still having so much pain and difficult issues. For TOS (I just recently was diagnosed with this as well), physical therapy (as you know) and also massage can help. I went to a massage therapist today who specializes in neuromuscular massage and he dug in deep! He found all the spots. As you know, TOS is muscular at itās foundation that causes the additional issues (vascular and neurogenic). Iām very sore but I can move and raise my arm without feeling the horrible pain of my rib snapping. Maybe try massage?
The neck is such a complicated thing. I had a 1 level fusion and a foraminotomy to avoid a 3 level fusion. I was scheduled for the 3 level fusion this month because they missed a disc protrusion on my MRI and need to go back in. Thatās a pretty big mistake they made. I have neck pain from Eagles but not a ton of neck pain near C6/C7 where the protrusion is. Most of the pain is at the base of the back of my skull and on the sides by the scalenes and SCM. When I do a chin tuck to aggravate the styloids the pain reproduces in the back of the base of my skull and on the sides of my neck down to my clavicle, as well as the sides of my head and around my jaw. Sometimes it feels like my head and occiput are very heavy. Looking down makes it worse as well. I know where the eagles pain is, and the constant tinnitus, but not sure if the rest is related to eagles.
I know C6 and 7 donāt cause pain in the occipital region. Iād rather look into the eagles symptoms before getting a 3 level fusion. I just wish there was a test to tell you exactly. Wishful thinking!
Iām right there with you on the different issues and itās so frustrating. Iām going to see Dr. Hackman next week for a consult. Iām hoping he can shed some light on what heās seen with eagles that are outside the āclassicā symptoms.
Try the massage for your TOS. Iām a bit sore but it definitely helped. Iām going again on Saturday.
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@Danielle1 - The pain in your occiput absolutely could be related to ES. I along with many others had that as an ES symptom & it did go away once our styloids were removed. The pain in your face & neck is likely being caused by your trigeminal &/or facial nerve(s) & neck to clavicle would be the accessory nerve all of which are commonly irritated by an elongated styloid process. Some of our members have even been relieved of TOS type symptoms once their styloid(s) is/are removed.
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@Isaiah_40_31 thanks for letting me know that!!
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Thanks Danielle,
I get massage on a regular basis and it is helpful but short lived. Since Im on medicare now, I have to pay 100% out of pocket so I cant get it weekly like I was. I have found dry needling to be helpful to break up the muscle tension. Botox/lidocaine injections have helped with TMJ and sides of head around ear. I feel that heavy head just like you. I dont have the pain when raising my arms or snapping rib pain. It is difficult to hold the arm for very long though. Feel so weak.
Ever since my bad experience with the botox in the scalenes at base of neck in August, I have stopped all botox and focusing in on diagnostic injections to pin point problems. My right scalenes and eye lid starting to spasm and my upper arm. My nerves definitely are unhappy and I will probably try some meds to calm them down. I have no doubt the TJ and facial nerve is a component like Isaiah mentioned. I know by my CT scan that I still have some small calcifications in my neck that were not removed and may be irritating nerves.
I have a pretty good PT and been doing PT for several months. Although I have been getting mildly stronger, my TOS symptoms have not changed. My hand goes cold at times and is worsening. I have issues at C5-C6 but they do not think it contributes to what is going on. Doc now suspect C1-C2 contributing (rotates out of position all the time) and my occipital region has been a problem for years. The chin tucks bother me as well along with SCM and scalenes - so many nerves run thru neck. I am learning way more about the neck that I care to. It is so very complex and hard to decipher what is causing what. Add in elongated styloids and calcifications and its a hot mess. I dont regret having Eagles surgery, I always knew it would not take care of all my chronic pain issues. Its a process of elimination.
I feel very lucky I have not had to endure fusions like you. That adds even more complexity to your case. I have found the complexity of my case and the instability scares doctors off from taking it on when they have a straightforward case thats easier, why take a complex one that takes more effort? That is pretty bad they missed that disk protrusion! Id rather do Eagles surgery before a fusion. 
I hope Dr. Hackman is helpful and he does shed light on your symptoms. Your in the right hands to figure it out.
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havenāt been around in forever, figured iād update. I had 0 improvement from the surgery. I had a follow up mrv and my jugulars are still 0 flow. Iāve been in a holding pattern, Iām just unfortunately not convinced thereās an answer for my particular case. I plan on eventually pursuing the c1 shave, but right now treatment is a moving target even among the very best doctors, and the consensus on a āproper approachā continues to change.
I donāt regret my surgery. Hackman is a wizard, he took both styloids in under 90 minutes, I was up and moving 24 hours later, and back to 100% in far less than a month. My scars are basically invisible. Amazing man, amazing surgeon. Just unfortunate that wasnāt the answer for my issue.
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Thank you so much for sharing this with us!!! I am so glad you got help and had a good experience with Doctor Hackman. My family is in Ohio and itās where I spent much of my childhood (southeastern, Cambridge area). I havenāt been able to visit as often since COVID hit but do love it there. I hope you continue to recover and feel better a little more every single day! Also, I canāt believe I never considered ES contributing to my extreme insomnia.
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So sorry that surgery didnāt help re-open the IJVsā¦I hope that you can get somewhere with a C1 shaveā¦
@Msdstc - It sounds like youāve been given a number of different opinions about how to approach your IJV situation which has made determining the best next step a challenge. Assuming you having current scans, it should be obvious if the transverse processes of C-1 are at fault. Have you been able to see any images that have helped you understand the current situation?
Since you had your ES surgery, Dr. Lo in NY has been added to our Doctors List. He is experienced w/ doing the C-1 shaving & is in the same part of the country as you are. Perhaps getting an opinion from him would be worthwhile.
ā¢Dr. Larry Lo, 850 Northern Bl, Floor 1, Great Neck, NY, (516) 773-7737,
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I actually had a consult with him, but I was a bit put off by the fact that he sometimes would cutoff arteries entirely.
@Msdstc - Thatās the first anyone has said anything about a possible negative consequence of getting C-1 shaved. Definitely worth asking about for those who are in the queue for ES surgery w/ C-1 shave w/ that pair of doctors.
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@Msdstc would it be possible to elaborate of what I suspect was Dr. Loās statement of cutting off arteries?
And so very sorry for all youāve been through.