Hello all, I was diagnosed yesterday after a hospital stay for a few days with severe trouble swallowing. I’ve had several stroke like hospital admissions with Bell’s palsy like symptoms and no actual help except for finally a diagnosis. Because my symptoms resemble stroke like things, I quickly researched and found dr Osborne. I meet with him on Thursday. Is there anything that can actually alleviate the compression symptoms? They are scary and I’m just trying to get some peace of mind. I’m so grateful I found this site and don’t feel so alone.
Sam
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Stroke like symptoms tend to be more common when there’s compression of the carotid arteries, and it can often happen with certain head positions. Other than avoiding any head positions which bring on the symptoms, there’s not much which can be done about it for the time being. If you’ve had a CT with contrast and it shows vascular compression then an anti-coagulant medication can be prescribed.
With IJV compression, it can (very rarely) block the blood vessels enough to cause blood pooling & then potentially a clot, again if this is the case then medication can help. Sleeping propped up can help with headaches and head pressure. Are you getting any other symptoms like head pressure, off-balance feeling, dizziness?
The styloids can also irritate the facial nerve & the trigeminal nerve, which can cause facial paralysis , drooping mouth or eyes, pain or numbness/ tingling, so this could possibly be causing your Bell’s palsy type symptoms?
I’m glad that you’ve been able to get an appointment with Dr Osborne, he’s very knowledgeable and has helped quite a few members with a diagnosis & surgery.
Let us know how you get on tomorrow!
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Hi @Jules
My appointment with dr Osborne went so well today. He was kind, knowledgable and so patient. For the first time in over a decade I felt heard. He validated all the symptoms I’ve been having and it explained it so well. Looks like I’m in need of the surgery and he’s the best one to do it near me (California) I am still so nervous about potentially having the vascular ES so I’m wondering if anyone on this forum has seen a vascular specialist who’s familiar with this type of compression here in California?
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@Samk13 - Dr. Damrose at Stanford Hospital in Palo Alto, does surgery for ES w/ IJV compression. Any doctor who does styloidectomies can operate to liberate a compressed ICA, but the IJVs require a more specialized surgery thus the reason so many doctors don’t do those.
•Dr. Edward Joseph Damrose, 801 Welch Rd, Palo Alto, CA 1-650-723-5281 Edward J. Damrose, MD, FACS | Stanford Health Care
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Otherwise if you can travel Dr Nakaji in AZ is very experienced with VES…
I’m glad that Dr Osborne was so helpful; lots of members have said the same!
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This might be a dumb question, but if there’s suspected compression to arteries as well as a possible upper cervical instability, would seeing an UC chiro alleviate any of that c1 compression using UCC methods? I come from a place of using holistic therapies and I understand this is a syndrome where surgery is medically necessary, but is there anything like UCC or physical therapy that could alleviate those compressed arteries while we wait for surgery? I apologize this is all just so overwhelming to me.
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If you’ve lost the lordotic curve in your cervical spine (many of our members have) from spending years looking down at your computer & cell phone screens, reading books, etc., restoring the curve can help reduce symptoms. Straightened neck vertebrae are referred to as military neck. When the cervical vertebrae straighten out, it causes the styloids to change such that they can come in closer contact w/ nerves & vascular tissues in the neck. Restoring the curve can help move them slightly away again. Depending on how long & what shape your styloids are, & what they are compressing, this approach may be helpful in reducing symptoms.
As far as UCC goes, adjustments usually don’t “stay” & getting adjusted repeatedly can cause symptoms to flare if the chiropractor doing them isn’t familiar w/ ES & very cautious w/ how the adjustments are done. High velocity neck adjustments are definitely out once ES has been diagnosed. PT can sometimes be helpful if the therapist is familiar w/ ES & especially w/ exercises to help restore the cervical lordotic curve ,but AVOID chin tucks if they’re suggested. In most cases they make symptoms worse.
My cervical curve isn’t totally gone but isn’t great. A chiropractor I saw recommended using a neck orthotic called a Denneroll to restore my cervical curve. It’s not super comfortable to use, but w/ consistency & following the instructions it does help.
Sizing:
- Large Cervical Denneroll – Patient Height: ≈ 5’9” & up= Large Cervical Denneroll;
- Medium Cervical Denneroll – is generally indicated for people that are ≤ 5’8”.
- Small Cervical Denneroll – is generally reserved for pediatric patients, or beginners to the denneroll that have a difficult time with cervical extension.
Here is a link to a very informative discussion about loss of cervical lordosis w/ helpful links for exercises that can help w/ restoration:
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I just want to thank you and this forum for being so knowledgeable in this diagnoses! It’s broad and rare and searching the internet for hours provides very little information. I can imagine you’re making so many of us feel less alone.
I ordered this Denner roll and can’t wait to try it out! Hoping to alleviate some of that extra upper cervical pain while I navigate how to move forward! Thanks for the UCC info, you’re right about that, the small re alignment doesn’t hold very long.
I was able to get an appt at UCSD with dr Pannell. I had to leave some voicemails for his assistant and she ran my diagnosis by him and he agreed to see me early august. I saw a few of you on this thread post about him being able to diagnose vascular ES. He’s only about 2 hours from me. Again, I thank you for so much of your knowledge! I’ll keep you updated on this journey
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