My styloids measure 4-5 cm. The left is longer and that is where worst symptoms are. Plus, I have Intracranial Hypertension. I had a shunt placed (before this diagnosis) and it only helps a bit and even less recently.
My neurosurgeon wants me to have a catheter venogram to measure the pressure gradient inside the jugulars. I am working on scheduling that test.
I am also waiting for Dr. Cognetti to call me back regarding imaging. He or his nurse was to call me this week, but did not, so I will call again on Monday.
Hi, kitty. Great to see your CTs. Hang in there with Dr Cognetti. I had to play the waiting game with him, too, (most of us have) but it was soooooo worth it! I had my first surgery with him last march and he did my left side on the 18th of this month. He is amazing! He is very kind and competent. You will be very pleased with him. I do know that he was out of town last thurs and fri (I wanted to have my surgery yesterday, but they said he was gone) so we scheduled it for last week.
Everyone on this group is amazing. Any questions just ask, someone will be able to help or at least can sympathize!
I hope things go well and you get some relief soon.
That you both for looking at my images! They are fascinating, but sure wish they weren't mine!
Everything I have heard about Dr. Cognetti has been wonderful. Seems the waiting game is common with many of the best doctors.
The big issue with me is that my neurosurgeon can and has done many styloidectomies for carotid syndrome. He really, at this point anyway, feels he needs those jugular pressures to prove it is the cause of my IH (worst symptoms) and then he would have no problem proceeding with surgery. I'd like to do the test, if only to show it is abnormal. But, if it isn't, then I will throw in lots of doubt.
I told him of Dr. C and he said well, if he recommends surgery, then you have a decision to make. He is supportive of my need for other opinions.
One thing is sure, I feel I also have symptoms typical of classic Eagles, not vascular alone. So perhaps I can just decide on my own to go ahead with surgery to address those (which are no fun as you all know) and then if I get relief from the Intracranial Hypertension, I will have won the jackpot!
The classic symptoms are bothersome, the vascular symptoms are debilitating and disabling. I have not been "normal" in 7 1/2 years and I believe this is why.
Thanks for letting me ramble there!! A girl can be hopeful, right?
Hi Kitty
I have the se thing. Styloid was compressing my IJV between styloid and C1 tubercle of c1 vertebrae. Neurosurgeon removed left styloid and IJV was stenosed. So I had IJV ballooned by venoplasty. I’m better but still have IH symptoms. Surgeon will not do right side.
Let me know how it goes with your surgeon.
Kitty
Do you have pulsatile tinnitus, headache, vertigo and unbalanced?
Have you had your temporal bone checked for dehiscence of semicircular canals? It’s all very complicated.
I DO have those symptoms- imbalance is the worst. 7 1/2 years now. Yes, I did have that checked when I went to Hopkins in 2007, only to leave with an "un" diagnosis of my previous Meniere's Disease and the not proud owner of another misdiagnosis of Migraine Associated Vertigo. (After being put through all the awful inner ear tests for the second time in my life! Horrible)
So your surgeon believes that as long as one IJV is "open" then you should be fine? I know that is the conventional wisdom, but if you still have symptoms then just yank out the other styloid!
Also, my Digastric muscles are also part of the reason for the IJV compression.
I will definitely write more after I speak to the surgeon. I feel like I am writing too much here in my current anxious state.
( I also have EDS and had cervical spine fusions to correct the instability I had, so it has been one long road.)
I think we are twins. I posted my CT venogram last January. The neurosurgeon took out the left styloid and then ordered a post op CT venogram. Since there was IJV stenosis I had a venoplasty of IJV. They said they could see the fibrous scar tissue expand on the IJV as they opened the balloon.
The pressure drop was only 1 or 2 mm Hg at that point.
I went back 3 times and finally the surgeon said he would not do the other side since they did not see any evidence of permanent damage to the right side.
I am better but I cannot look down for a long period of time - my head starts to vibrate-tinnitus becomes unbearable and it is so hard to concentrate.
They never did a lumbar puncture. So IH diagnosis is questionable but the pulsatile tinnitus wakes me up every night.
Ugh, the neurosurgeons like to use the pressure measurements/gradients to decide. I get that to a point. My NS wants me to have the catheter venogram to measure same.
The tinnitus has made me literally on the verge of crazy a few times. I'm sorry. :(
I know how you feel. I just went to UCLA to see a different neurologist to rule out SCDS. I have a CT of temporal bone next week.
I have been dealing with a group of neurologists in Los Angeles. My original diagnosis was otosclerosis. So I kept complaining about the tinnitus and they kept saying it was due to that.
So they are still saying the PT is due to otosclerosis. You are correct - this is totally debilitating. I am trying to work but it is very hard. Any head movement aggravates my head.
Have you tried to get an appointment with Dr. Samji in San Jose?
Yep- I had to finally stop working (what little I was in the end) for this same reason. I turned to the left one final time at work and nearly fell out of my chair, slammed down my hands and said I can't do this anymore. I also had C1 dislocating off of C2, almost completely, when I turned my head, so some symptoms were from that and went away with the fusion there.
If you have the the venogram they should do a test to provoke the symptoms - such as move your head.
My last venogram did not show compression of my right IJV - but my head was in a vice so I had perfect posture. Only thing is I do not live in perfect posture.
Hope you hear from Dr. Cognetti? Best of luck. Please keep me posted.
Yep - I lost my old job because the head pressure was so bad. I wanted a different workstation. employer thought is was all too crazy so they harassed me until the Tinnitus and pain was so bad my doctor said I could only work part time until he could diagnose what was wrong. My employer fired me. That was 8 years ago. I am trying to work almost full time at another job and it is killing me.
I can feel my C1-c2 move around. I can straighten out when I stand at attention. But if I look up it slips out and even my toes hurt!
Do your legs and arms tingle and hurt? Even the doctors look at me as if I am crazy when I tell them my toes hurt. My unbalance only materialized about 2 years ago - before it was just an annoying tingle at the back of my head. But when I turn my head from side to side it gets worse - tinnitus is bad.
I have talked to a vascular surgeon at Cedars Sinai. Who has dealt with vascular Eagles. But all these guys know each other. I think some of medicine is political.
I should go and see Dr. Samji in San Jose. That’s a good idea.
In my experience, lots in the medical world is political. No one wants to step on the other's shoes, even if it is the right thing to do for the patient!
Yes, do try. I hear so many good things about him. I am in Maryland, so trying Dr. Cognetti.
Before I had my fusions, I had a ton of neuro symptoms. So many to list.
I first had C3-6 fused. Both arms were numb and I could barely cut my own food or wash a dish, due to hand weakness and cramping. Those went completely away. That surgery was 2 years ago.
Then I had a decompression for Chiari Malformation and was fused from my skull down to C2. I will post the pic of my C1/2 dislocation. My skull also slid off my spine in flexion and extension. Two scary symptoms (among many others) was that I was once a quadriplegic for a few hours and unable to speak when I fell asleep with my chin to my chest. That was the skull slipping off and C2 pressing into my brainstem. The other thing I didn't even know about until after surgery, was that I could not feel hot water and much of the pain in my neck. At about 6 weeks, I was scalding my skin at the same water temp I used to use. That surgery was March of 2012. So 1 1/2 years ago. Lots of other things improved too.
Then last summer we discovered I had Intracranial Hypertension. I waited until this summer to get a shunt b/c I wanted to try the meds first. Shunt is not great, I think b/c I still have the IJV compression. That's my hopeful reasoning anyway.
Due to my EDS which causes lax ligaments etc, I had upright MRI's in flexion and extension that finally showed the problems and explained many of my symptoms.
The arrow on the image shows the exposed surface of C2. It was 80% dislocated with me only turning my head 68 degrees to the left. Sorry the image is so small.
