Hi Everyone. Just joined today. I’ve been through little over 2 years with so many symptoms. ES seems to be the culprit along with cervical instability. I live about an hour away from Philadelphia PA and 2 hours from NYC. Does anyone know of a surgeon that they would recommend? I reached out to Dr. Cognetti in Philadelphia and sent him my images. His team said that they’d call me to make the appointment as soon as they had an opening. I waited 3 weeks, called them again. Now another week has passed and still no call. I know I have vascular compression somewhere. I’m desperate for help. 
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@Taptap123 - Welcome to our forum! I’m sorry your symptoms are so bad & you’re getting a slow response from Dr. Cognetti’s office. He’s booking initial consults in Nov. or Dec. now. His office is extremely busy & you will get a call back, but you’ve done the right thing by following up when you didn’t hear back after 3 weeks. You shouldn’t hesitate to call again to try to get an answer as to when you might hear back from them rather than it being left open-ended as it has been.
We know Dr. Cognetti has to look at your imaging before he’ll recommend an appointment so it may be that he’s backlogged on doing that which is holding up the call back you’re waiting for.
If/when you do make an appointment, also request to be put on his cancellation list. We’ve had several members recently who had their appointments w/ Dr. Cognetti moved up substantially by doing that.
The other doctors you can try are Dr. Liu in Livingston, NJ or Dr. Costantino in White Plains, NY. Neither of them are booking out as far as Dr. Cognetti.
•Dr. James K. Liu, 200 S. Orange Ave, Ste. 265, Livingston NJ, Dr. James K. Liu | Top Neurosurgeon in Livingston, NJ
•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 .
Does do online or phone consults. Email Shantel for an appointment
While you’re waiting to get an appointment, you can help relieve your symptoms to some extent by sleeping w/ head/shoulders elevated at night. You’ll need to experiment w/ how much elevation makes a difference for you. Icing your neck for 15 min several time/day can also help. Put a thin towel between ice & skin to prevent ice burns. Buying a couple of gel packs that can be heated or frozen is helpful as in rare cases, heat seems to help more than ice. OTC lidocaine patches can help with nerve pain. They’re 5% lidocaine & are adhesive so they stick gently to your skin. They also come with higher strength lidocaine via Rx.
Some of our members have been Rxed a blood thinner such as Brilinta, Plavix or Xarelto which has helped reduce head pressure. That’s something you could ask your PCP or ENT about.
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Thank you Isaiah! All helpful information you’ve sent. I was approved to see Dr. Cognetti but just waiting for the appointment to see him. I will definitely request the cancellation list as soon I hear from them. I did know about Dr. Constantine and he’s sounds great but he’s not on my provider list so that’s a bummer. I’ll look into Dr. Lui. I certainly will try the ice packs too. After turning my head all day long as a dental hygienist, I know I’m aggravating so many nerves. Certain positions creates such head pressure but I somewhat trained my body to not move that way. People can notice I don’t move my neck freely like I should. I position my body in front of people when I talk to them because turning sideways is not a good thing. Thanks again for the information.
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Good job observing that certain head positions provoke your symptoms & avoiding them, @Taptap123! I can’t imagine being a dental hygienist w/ ES & IJV compression. I applaud you for sticking with it though!
I hope Dr. Liu is on your medical insurance, too. If not, we have a number of members who’ve had to do battle w/ their med insurance to be able to see/have surgery done by an out of network doctor when there was no one in network. At least you have Dr. Cognetti who is very experienced!
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I am currently seeing Dr. Cognetti. There was a 9 month wait and I was so frustrated. However, they will put you on a wait list and I got a call 3 months earlier. I took it. Just waiting now for them to call to set a surgery date since I had told them not until September/October due to another surgery that I had to have. Hang in there and don’t be afraid to keep checking in with the office. Hope this helps.
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Thank you! That does make me feel a little better. I really just want an appointment. If I have to wait months, I’ll deal with that but right now I can’t even get an appointment so I fear waiting 3 months for them to call and then wait another 9 months. I’m afraid that I’ll lose some cognitive since I seem to have vascular compression to my head. Well thanks for responding and good luck on your surgery. Please let me know how it goes.
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They will get you in and once you are in, I don’t think you will have to wait too long for surgery. I also have Jugular veinous Compression and Eagle Syndrome. Just a shortage of doctors that do this surgery. If you need a C1 shave, Dr. Cognetti works with a neurosurgeon Dr. Heller who does that during the same surgery. They only have operating times together on a Friday,so I was told. People come from all over to see him.
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I’m sure he is a busy guy and I’m sure worth the wait. I hate being a pain the a*# but I will reach out to them again. I know he approved to see me so I guess I just need to be patient.
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I don’t think you’re being more of a pain in the butt than I was. Lol. It’s called being proactive.
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Good advice @bs9652 , thanks for that!