Ooppss hit the button to soon. He tells me that he’s went in to do surgery totally convinced it was the styloid processes and found nothing on patients and he doesn’t want to make things worse. That’s fine but don’t put me in a box based on other patient’s outcome, shut up, request my imaging and look them over with this radiologist your talking about, then call me with an INFORMED opinion. So it’s the waiting game for 2 weeks.
That is soo frustrating, I’m so sorry that you’re dealing with all this, again, and the worry of MS as well. I just wish that maybe we could get these stupid doctors to talk to other doctors who do actually realise that ES causes vascular problems. They clearly don’t bother reading the research papers that get published showing this !!
Maybe your situation all sounded a bit much and he got a bit scared off? I can’t believe he suggested that because your symptoms are worse one side than the other you didn’t have it!! Usually that’s the complete opposite of what most ignorant doctors believe- we’ve had so many members fobbed off saying ES only affects one side, and that it can’t be ES if they have pain both sides- aaarrrrghhh!
So 2 more weeks waiting… I really hope that he re-thinks.
I hope so to. I don’t see how he could of been overwhelmed every time I said something he shut me down and that’s not eagles lol. So I I just let him run his mouth for an hour lol. We’ll see what happens after he looks at the images. If he’s not going to do anything I’ll fine.someone else, I hope lol. Thanks for lending an ear it helped
Have you tried making an appointment with either of the doctors listed on the 2017 ES Doctor’s who are in your state?
WI
Chippewa Falls
Dr. Robert DeFatta
Chippewa Falls
888-■■■■■■■■ toll free
or
Dr. S Nalwa
St. Marys, Janesville
(no contact info listed but you could try Googling this one)
Not yet I’m giving him a chance to request my imaging from aurora so it’s in froederts system because that’s the network I’m in. If he sees what he’s looking for and doesn’t do the surgery I’ll check out these other two you mentioned. Hopefully he finds what he’s looking for.
YES! Hopeful is what we need to be!
Yes hopeful indeed! It’s been pretty bad lately. I moved my spinal tap to December 1st because I wanted to see the MS doctor first ( and because I was scared lol). Now I’m regretting it. Last night I slept with a ice pack on the back of my head and another on my eyes. Then I noticed that as I was laying there with my eyes closed I was dizzy, everything was a bit spinny. I have no idea what that was about but it’s been happening when I close my eyes. Yesterday my best friend noticed my head bobbing like a tremor. I’m thinking it’s probably the MS? I don’t know if ES would cause that? Well anyway it’s scaring the heck out of me so I’m calling to bump that spinal tap up ASAP. I’m hopful they figure something out sooner. If my symptoms get worse today I’m going to the ER. Again isaiah thanks for lending an ear it’s much appreciated!
Sounds more likely the MS, wonkly, but the dizziness is more likely the IH through ES… do you sleep propped up? I ended up sleeping downstairs in a reclining chair before my first op, laying flat was horrible. Had a wedge and V shaped pillow too. I used to get weird falling sensations too, even when sitting down.
Hope thay can do something for you sooner…
Yeah I sleep with three pillows. I sleep better on the couch putting the pillows up against the arm of the couch but my husband gets mad when I sleep downstairs. My family is not very supportive with all this going on they really don’t want to hear about it.
There’s another member on this site who is having surgery a week from Mon. She has the head movement issue. It will be interesting to see if her head movement stops after she has ES surgery.
I agree w/ Jules that your vertigo is probably ES related. It sounds a bit like positional vertigo which was my first ES symptom, as it turns out - only affected me when I’d lie down. It may be that the supine position puts your head at such an angle that your styloid is further compressing your vascular tissues or that it increases your IH. Good thing you’re sleeping w/ your head up.
So sorry your husband isn’t understanding. That must be very hard!
Hopefully the other member will keep us posted I’m curious if it stops to. I’ll continue to sleep elevated for sure.
Just went to my primary doctor. She wants me to bump up my spinal tap sooner. She’s checking my vitamin D and zinc levels and referring me to and infectious disease doctor for the epstein barr virus. And set up an ultrasound for the lump on my breast bone area. So hopefully I can get the spinal sooner and the Eagle’s doctor calls sooner than two weeks Lol!
Lets hope that things get moving soon then x
Just got the phone with the ES specialist he said my styloids are fine not elongated and didn’t tell me what angle because it doesn’t matter only lenghth. I asked what would be compressing my jugulars and carotid and he said that’s irrelevant. Said that they wouldn’t do any damage to those veins because they are tougher than regular veins so just because it showed compression on the angiogram it’s fine if they get pinched when the head is at a certain angle. And said there is no calcification of ligaments. I’m gonna have a nervous break down over this.
Zebra, I think you need to get to a doctor who understands Eagles. Can you call dr Samji’s office and find out their procedures to have him read your scan? You need decent help now.
I agree w/ heidemt. Here’s the contact info for Dr. Samji’s office:
■■■■■■■■■■■■■■■■■■■■■■. Phone number is 408-■■■■■■■■.
Kim is Dr. Samji’s medical assistant. You can ask her what the cost will be to have him look at your scans & talk to you. Make sure you give him your additional info about your situation especially regarding the compression of the vascular tissues & your symptoms from that. I wouldn’t talk about MS up front, only the ES symptoms & CT scan. He does charge a sizeable amount for a phone consult, but he’ll give you the time you need to discuss your situation. Kim can tell you his phone consult fee & how long a phone consult would be. I can guarantee though that he won’t rush you. He’s very good at listening.
Sorry this situation has gotten so out of hand for you.
Where is he located? Will insurance cover the consult? I wonder if he can look over scans and my cerebral angiogram results proving there is compression. Question awhile ago I sneezed hard and heard a crack there was and explosion of pain in my jaw, all around my ear front and back to the base of my skull and down my neck, could I have fractured my styloid processes? And if I did would there be fragments floating around in there causing problems?
He’s in San Jose California. I live in Honolulu and I’ve had two corrective surgeries with him.
I’m not sure about insurance covering the consultation. That would be a good question to ask Kimberly.
I personally don’t think you need to have him confirm the compression. You just need someone who knows about eagles to evaluate the styloids and take them out if he thinks they should be. He’s not really so concerned about vascular vs “regular”Eagles from what I remember. But I understand he now defines Eagles as 2.5 cm or greater, which is a more generous standard than doctors who haven’t seen it that often. He’s seen many many cases and he will give you a good read on your case.
Before I saw Dr Samji, I had vascular Eagles on my right side and I saw a doctor at the Cleveland clinic who didn’t believe in vascular Eagles and didn’t even want to hear about the symptoms. And he didn’t see compression on my CT scan either apparently. But I convinced him to do the surgery because I felt so horrible and the vascular symptoms were resolved immediately. He later told me that my styloid had been compressing both the carotid artery and jugular vein and was longer than it appeared on my scan.
So I don’t think it’s reallly necessary to have to confirm vascular symptoms and issues. You just need someone to take the styloid out.
I forgot to address your other question. I don’t know. I guess it’s possible but I’ve never heard of a styloid fractured from a sneeze. Do you still have the pain? Hopefully others could answer that better than I could.
Yes to the possibility that your styloid could have cracked from your sneeze. They have also been known to crack from yawning, laughing & coughing. It doesn’t necessarily mean you have pieces floating around though. I think there are enough muscles, nerves, & vascular tissues in the area to hold a broken styloid in place.