Bilateral styloidectomy completed by Dr Hackman on 2/5/24 but symptoms still remain. I think we also needed jugular decompression but Dr Hackman doesn’t do those. Does Dr. Fargen offer jugular decompression surgery and C1 shave? Or does he just do the testing to find the stenosis? I’m just trying to figure out if he can do the testing and surgery or just the testing. Thank you for helping me figure out which doctors do what!
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I’m glad your husband’s styloids are no longer the problem but am sorry to hear he is still symptomatic. Dr. Fargen deals more with vascular tissues that haven’t responded to decompression surgery. He does stenting though recently we’ve heard that he’s begun doing styloidectomies. I’m not sure if that includes IJV decompression w/ or w/o a C1 shave. You’d need to call his office to find out.
Dr. Costantino in White Plains, NY, does vascular decompression & has a neurosurgeon associate who does C1 shaving. They have helped several of our members so he would be worth contacting as well.
•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS
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Thank you so much for clarifying! I think Dr. Constantino is the doctor best suited for my needs. As always, you have been so gracious and supportive. Those of us existing in this community would be lost without your support. Many thanks!
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Hi what are your symptoms of jugular compression?
I definitely needed a styloidectomy but it was not my only problem. Turns out I also had an undiagnosed tethered spinal cord since birth. That’s 53 years and one week undiagnosed. Try not to get discouraged, the next answer may be a simple one. What are his symptoms?
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@pk5 - Fargen does do full decompression and styloidectomies (started about a year ago I think?) although recently he has been referring to a local colleague for more straight forward cases (time management). He continues to refer all complex cases (as in complex for us already highly complex patients) to Dr Hepworth. Fargen is the King of stenting and of helping patients with IIH. He is a neurovascular neurosurgeon so very very adept at what he does. He is also incredibly humble, cares deeply, and straight forward. If he doesn’t think he’s at the top of the game for what you need, he’ll refer you to who he thinks is (hence the Hepworth referrals)
He does NOT do C1 shaves. Dr Hepworth does do these when he feels they are warranted.
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@Herd_Mentality_101 and @July123
Thank you for asking….
His symptoms are 24/7 chronic dizziness (not vertigo) like on a boat when it’s bad it makes him nauseous, headaches and head pressure that becomes unbearable at night starts at back of head and can move to the sides and behind the eye, light sensitivity, visual disturbances, neuralgia type pain in neck and up to the ear, stiffness in neck and traps, heart palpitations, digestive issues.
It’s miserable and debilitating! We had a telemedicine appointment with Dr Constantine and he wants a new dynamic CTV and some bloodwork to test for LYME, and a few other diseases. I understand he does a thorough jugular decompression and will shave C1, clip muscles, and do a fasciaotomy to free the jugular. Dr. Hepworth isn’t taking new patients right now and I feel the need to move forward.
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@akc thank you for the valuable information. You and this forum are such a valuable source of information. It’s absolutely amazing how much you guys know! So thankful to have these doctors that are willing to listen and help.
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All of these symptoms could be caused by a tethered spinal cord. Does he have a lumbar MRI? It is super easy to spot and would be important to rule out.
Sorry I don’t know your story but I’m assuming he also has a styloid or two? The presence of a styloid will restrict downward head nodding at C0-C1. This forces nodding to happen at C1-C2. That will over stretch the atlontoaxial ligaments and give him a CCI. I believe the sea legs sensation he is getting is called mal-de-debarquement syndrome which is caused by brain stem pinching from a CCI.
I would start with a lumbar MRI to rule out tethered cord before any surgery. Does he have ehlers danlos in his family?
Wishing you the best,
Kevin
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Yes, he has had a lumbar MRI and there were no reports of tethered spine. We continue to search for answers and healing. I’d like to rule out IJV compression, so that why I was asking which doctors do what.
Prayers that you continue to have success. Life is much more enjoyable when you feel good!
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Most surgeons and radiologists don’t know what to look for. Here is my MRI and the views needed to evaluate. The arrow in the right image was drawn by Dr Petra Klinge who performed my dithering surgery. I have a subscription to RadiAnt so I could do a cursory review for you to see if he looks like me. What are his genetics? I am West Bohemian on my father’s side which seems to show the ehlers danlos. I have met other Northern European mutts who have similar symptoms and histories. Lol, I guess we had some inbreeding. Not a surprise when temps got cold and resources were scarce
Here’s a recent lumbar spine MRI of mine. I can see a tarlov cyst at S2 level, but is there any evidence of tethered cord syndrome?
Trying to look at my imaging in comparison to yours and what I’m reading online. I still can’t work out what I’m looking for. I can see the arrow on the right. But what specifically is it pointing to? Is it that tiny little dot inside the white triangle? Or is it how the lighter stuff that’s going around the white triangle and then down which seems to have a gap and is not visible in that bottom part of the triangle? Sorry for piping in here but tethered cord is something that I’ve been curious about for myself as well. Thanks so much 
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I’m embarrassed to say I can’t see an arrow in the right image.
I am not a medical expert in any way and I am only just beginning to understand tethered cord. I asked Dr Klinge what she saw that was the MRI signature for my tethered cord. She drew the arrow in the picture below on the right side image. I have also added a zoom detail of the area and put a circle that is the fine dot of my tethered cord. This is from a 1.5 Tesla MRI so it is a little fuzzy. It looks much clearer on a 3.0 Tesla MRI.
So as I understand it, everybody has a filum terminale which attaches their conus to their sacrum. In some people, I believe many with hEDS, the filum terminale thickens and becomes more rigid. I am guessing that the more visible the filum, the thicker and more rigid the filum. But symptoms depend on where the conus is and how much tension the spinal cord is under. Mine was under a lot especially because of my 6 levels of spinal fusion. More speculation here but I think the conus height would be a product of how early in child development the filum started to thicken and stiffen.
It seems plausible for this to occur due to repetitive micro injuries from standard typical falls that all kids have. The filum terminale is basically just another group of collagen fibers. There is some kind of structural defect to a few of the collagen types in people with hEDS. We have loose joints that injure easily because of our weak collagen and our filum terminale also injures easily
Hope this helps 
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Thank you for the update, @Herd_Mentality_101. I was finally able to see the arrow on your first image after you sent the enlarged image. Just didn’t blow it up enough earlier. 
