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Hi,
I’m curious, of those who have found they have CCSVI, which side of their necks do they get this head, neck to shoulder pain in, is it the same side as the wide engorged jugular vein, or the other one ?Hi Barb, my son and I both have the BIG, oversized veins on our right side, but both of us have neck pain on both sides. Interestingly, though, my right side is MUCH more affected than my left (more subluxations, low muscle tone, looser joints, livido reticularis is worse, etc). As you know, I’m not a huge believer in coincidences! 🙂 Diana
I believe I may have CCSVI, but nothing is confirmed. I do have most of my pain on the right side, and of course, if I have the enlarged veins, I don’t know which side, but suspect the right. Does anyone know anything about MRI’s? My MRI shows a huge vein on the right side of my head above my ear and going up and across the back of my head. Perhaps this is normal, but I do get very sharp pains on the side of my head above my ear where it shows that vein. It’s a very different kind of pain; it feels vascular to me.
Hi, I’m not sure without seeing your MRI but do you think it could be your transverse sinus?
Regards
BarbaraHi Barbara. Thanks for your reply. I looked up some MRI images on line, and I’m not sure, but yes, it could be the transverse sinus. Why, does this mean something?
Hi,
Yes. Checkout Dr Diana’s info/videos on CCSVI, chronic cerebrospinal venous insufficiency. Basically, problems with the transverse sinus can be related to this. It’s probably one of the causes of several neurological conditions but the good news is that there’s something that can be done about it! I should have it investigated.
Regards
Barbara
(UK)Thanks Barbara. I checked out a few videos. Will check out more, but it is making my neck sore lol!!! I actually sent Dr. Diana a copy of my MRI, but I know how crazy busy she is. Dr. D, can you just tell me if you received my MRI on CD? I sent it the old-fashioned way and I just want to be sure it did not get lost in the mail. Please take your time in looking at it – I know you are spreading yourself a little thin. Please take a look whenever your schedule calms down. Much appreciated and many thanks. MJ.
Hi Barbara. This vein on my MRI – it is the only vein showing on the MRI and I didn’t think that veins showed up on MRI’s. This is why I am concerned (well, and plus that is where I have sharp pains). Do you know if it is normal to see a vein like that on an MRI (I know, difficult question w/o seeing the MRI)?
MJI can see my transverse sinus on my MRI, certainly the fat one!
As for other veins, I suppose it depends how big they are and how they run, according to the direction of the slice of MRI. For instance, Dr Diana shows an example of an engorged Jugular Vein, going through a slice of MRI, taken across the neck. I checked my MRI and yes, I had that same sign.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! and oh, I forgot Arrhythmias – confirmed as runs of Bigeminy and Trigeminy.Does Eds cause hard knots in your temples and in the back of your head.
I’m not sure, but I have EDS and I do have some sore spots and a bumpy sore spot on the back of my head. If I press on them, I get pain behind my eye (on the same side I press) and pain running down my neck (on the same side I press). I can also feel my heart POUNDING (I assume where the veins are) on the back of my head on both sides if I put my fingers there – does anyone else have this?
I have EDS and my neck pain has been with me my whole adult life. I’m 48. It is practically gone now since I stopped eating wheat and eggs. Does this make sense? I’m so happy. Now for the other pains……
I would like to find out anything I could about pain in the back of your head that radiates down like that. I have no idea what is wrong with me except have MS and just diagnosed with dysautonomia and have the same long symptom list others do. Is dysautonomia ever trauma induced? over the last couple of years i have been developing more and more symptoms I thought was so crazy and am only now seeing how many others are having the same symptoms.
Thank You
BethHi Beth,
My experience is that yes, trauma can cause it, I was fine until I bashed my head. I experienced the pain you are describing for 5 years before I was put into a Philadelphia collar and brace – such instant relief was amazing!What it did was, it held my head in a better position, in relation to my neck, which allowed the cerebrospinal fluid (which bathes the brain and spine) to flow more freely. It also took the strain off my neck muscles, that was trying to hold my heavy head up, after the ligaments (that hold my head on) had been injured.
Did your MRI’s ever report low-lying cerebellar tonsils (hind brain, sometimes referred to as cerebellar ectopia)? It can trigger dysautonomia, by subtly pressing the brainstem, this can cause the feeling of nausea. If you also have a retroflex odontoid (peg-like bone in the top of your neck, that points backwards) nausea can be brought on by looking down (head in flexion), so try and avoid this movement and see if it eases.
The pain in your eye (which I get) could be caused by raised intracranial pressure (which I also have), I should ask to see a neuro-opthalmologist, so he can look more closely at what could be affecting your eye and try and address it.
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!Hi,
I’m curious, of those who have found they have CCSVI, which side of their necks do they get this head, neck to shoulder pain in, is it the same side as the wide engorged jugular vein, or the other one ?Hi Barb, my son and I both have the BIG, oversized veins on our right side, but both of us have neck pain on both sides. Interestingly, though, my right side is MUCH more affected than my left (more subluxations, low muscle tone, looser joints, livido reticularis is worse, etc). As you know, I’m not a huge believer in coincidences! 🙂 Diana
Hi Barb. I now know, and have proof (please see attached pic), that I have over-sized veins on the right side of my neck. And, interestingly enough, like Dr. Diana and her son, the right side of my neck is much more affected than the left. Does anyone know if this means I have CCSVI? This vein appears with any type of neck movement (so basically every thing I do) and ALL of my symptoms are simultaneous with the neck pain and enlarged vein.
Hey, yeah that’s prominent, other than that, I’m not qualified to comment.
I just tried to look and see if I’ve got one, removed my collar so I could see, lifted my chin up and . . . . no vein but I went DEAF in my left ear (the one that’s usually just high pitched tinnitus) – so I won’t do that again!
Regards
Barbara
(UK)Hi Barb,
Yeah, I almost passed out after taking those pics, and my neck still hurts from tilting my head back. So, I hope you aren’t still deaf in your left ear LOL! You may want to look in the mirror more often to look for veins while you are ‘in motion’ so to speak. I get that vein from brushing my teeth, rinsing with Listerine, washing my face, just walking, tilting head forward and backward just to name a few. Anything that ‘jiggles’ my head and neck around causes that SEVERE neck pain and symptoms, and I look in the mirror – and there’s that vein! I NEVER noticed the vein before, and I NEVER would have thought to look for it if it weren’t for Dr. Diana’s neck vein video (where she breathes in and out).
Hi,
Deafness slowly cleared thank goodness!I’m not sure what that vessel is, do we know? I know when you brush your teeth, although your head is down, for some it’s swivelled with your face forwards (if you’re checking in a mirror, for instance). That head down but face forwards position always increased my dizziness, so I avoided tasks that included this ‘pose’, things like looking into low cupboards.
I’m certain for many of us, with having less than perfect supporting neck structures, specific head positions play a part in our demise. I can’t help noticing that your vessel appears to suddenly stop at the bottom, I know it doesn’t, it’s obviously bending inwards to go behind the bone. Maybe it’s that, above the bone the vessel is being pushed outwards.
I know my neck structures can expand (inflammation from the mast cells maybe? yet to find out). I know this because I have a ‘headmaster’ collar that I wear for a while, when I’m too hot in my Philadelphia collar but then, after I’ve cooled down, when I put my Philadelphia collar back on, I can’t fasten it in the usual place, it’s like my neck has expanded. I have to tighten it up gradually.
Have you been tested for mast cell activation, or are you on the mast cell treatment ?
Regards
Barbara
(UK)
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