Hi LoriNola,
Many people on this forum have used phone consults w/ far away doctors to get a second opinion. Many of those have subsequently gone to the second opinion doctor for surgery even though it meant traveling. There’s something very settling about seeing a doctor who affirms you/your symptoms & is willing to help you.
I’ll write more about my gut on another post lol…don’t want to hi-jack Headcase 
But I do wonder this… Headcase I also have C1-2 issues and dystonia that I’ve wondered if the ES makes me hold my head oddly and causes spasms in that area, or if those are a whole separate issue. I guess there’s no way to know without surgery.
In the meantime, I have found that massage and cranio-sacral therapy (if you can find someone who does it) can be helpful. But if massage is too aggressive it makes it worse. I’ve also gotten Botox, but it’s hard to say if that helps or not. Muscle relaxers do help.
How did your consult go?
Hi LoriNola,
Go ahead and hijack the post. I am totally good with that.
The C1 and styloid live right next to each other, so yes, I can imagine that inflammation and spasm near one, could affect the other.
My consult with Dr. Cognetti went really well in that he seemed very knowledgeable and honest. I was impressed.
He feels that my pain is likely more TMJ related and I think I’m in agreement.
I almost feel jealous of you true ES patients. I wanted so badly to have the surgery and fix this problem.
Feel good.
Headcase
May I ask how y’all contact the doctor and ask for a phone consultation? Does insurance cover this? If not what does something like this cost? I had a doctor here in SC say he would do the surgwry on one side only but he wasn’t sure if I had Eagles or not and I don’t feel comfortable enough with him because of his lack of confidence yet willingness to do the surgery.
Hi brookiejunk,
To get a phone consult, you’ll need to call or email the office of the doctor you want the consult with to set up an appointment & find out what information the doctor will want from you ahead of the appointment (usually a copy of your CT scan & the written report). Doctors do charge for phone consults but I’m not sure of the amount (it’s likely different for each doctor so you would need to ask when you make the appointment), but I know it’s at least several hundred dollars. Doctors doing phone consults usually give you the time you need to discuss your symptoms, & then they will give their opinion as to the best course of action. It’s not a quicky 5 minute event. Many medical insurance companies will cover at least part of the cost of a phone consult. You should check with yours ahead of time so you don’t get sticker shock if they decline to pay after the fact.
I think you’re very wise not to have surgery with a doctor you don’t have confidence in & I agree that the doctor you’ve seen doesn’t sound very experienced with ES.
As far as we know, the US doctors w/ the most experience who are listed in our doctors list are Dr. Samji in San Jose, CA; Dr. Milligan in Phoenix, AZ; Dr. Cognetti & Dr. Newman in Philadelphia, PA.
I hope this helps!
Hi Brookiejunk,
I have a phone consult with Dr. Cognetti May 8th - it was booked over 3 weeks ago!!. He does not accept my insurance and I do not have out-of-network coverage. I was told that the cost for the phone consult would be a minimum of $450 but could go much higher. I somehow missed seeing that there is another doctor in Philly and may give him a call. Has anyone here had surgery with Dr. Newman?
I had to send in my images and reports before I could make an appointment. This process takes time so patience is key. I get strength and encouragement from my fellow Eaglets here on this site.
All the best to you.
BG
BrooklynGirl,
Dr. Newman did 4 double styloidectomies on a boy who at age 12 was finally diagnosed w/ ES after his mom spent years of researching debilitating symptoms he was having. Because of his age, his styloids both grew back w/in a couple of years even though they were removed at the skull base. He did have two more ES surgeries to resect them again. Dr. Newman did all of his surgeries. As of this writing, I think he’s in his late teens & has had no recurrence. His mother wrote a book about her research called “Connecting the Dots” by Sherri Jonas. It’s available on Amazon. You can privately message her to discuss her experience w/ Dr. Newman. She highly recommends him in her book. Her screen name on here is Earmom.
Thank you Isaiah.
I understand that the best approach is externally, one at a time - besides the 12 year old boy has anyone had the external surgery done on both sides at the same time?
Internally is known to work but the risk of the ES issues coming back is much greater. Can the both right and left be removed internally at the same time?
I know that I need to be patient, but wouldn’t it be better to have them both done at the same time so that I can get back to life? I am approaching 60 and I feel that life is so short as it is. Between work and ES I feel that there’s not much else to my life right now - and my work suffers. It may not be the right way to think about it, but the less invasive internal surgery done for both sides would provide relief so that I can move on. If surgery is needed again years later I would (hopefully) be retired and have more time to heal.
I’m thinking out loud here. Also praying for patience and guidance. I am grateful for the support.
BG
Hi BG ~
Thinking out loud is good. Praying is even better. You need to have the type of surgery that makes the most sense to you. The most important thing is that you feel comfortable with your surgeon & his/her level of competence in doing a good surgery.
I was totally in your camp when I was diagnosed. I was 58, not working but caring for a friend who had aggressive breast cancer. I figured having both styloids removed at once would be more like having 4 wisdom teeth removed all at once rather than one at a time. The ENT who diagnosed me wanted to do bilateral external surgery in the hospital w/ at least one overnight stay. I went for a second opinion w/ Dr. Samji (after finding this forum & his name). His surgical strategy & the “one at a time” approach made much more sense than my original ENT’s so I changed doctors.
There are two main reasons for doing bilateral ES surgery in two surgeries: 1) Post op there is quite a bit of swelling in the throat & neck (w/ both types of surgery) so from a safety standpoint, many doctors feel two surgeries are better. 2) The second side may can become more symptomatic post op but in some cases does not. Thus, there is no need for the second surgery.
There are cases of forum members having either bilateral intraoral ES surgery or external ES surgery in one operation. The healing time is about the same either way. We’ve seen people get back to pretty normal in a week or two after either type of surgery (when done unilaterally) then for others it’s taken months. There’s no way to predict how a person’s recovery will go. Most people are functional enough to go back to work two weeks post op. Bilateral surgery takes longer to recover from, from a functional standpoint. The thing that is most cumbersome post op is fatigue. Because your body is fighting to repair itself, it wants rest, thus pushing self in the first month or so post op can slow healing progress - again, this is not dependent on type of surgery. Normally having even one side repaired - regardless of which type of operation is done - provides sufficient relief to step back into life more normally .
If you’re a brave soul, you can watch both the intraoral & external surgeries on YouTube. That might help you to better understand what’s involved in them. I like to know what lies ahead so that was a must for me. Unfortunately when I had my surgeries done only intraoral ES surgeries existed on YouTube so I wasn’t able to see what I would go through.
Thank you Isaiah.
Those with ES suffer and life feels like its been put on hold, but thankfully its only a major “pain in the neck” and not life threatening, like breast cancer. You sound like a good friend. I feel it here in your responses.
What you say about the swelling makes sense. There is a lot to consider. In the meantime I will keep praying - and being the squeaky wheel to be heard. What else can we do?
Peace to all.
BG
Sorry I’m just getting back to you, but i’ve been thinking and wanted to just let you know some of the things that help with my neck pain that might help you too since we both have a crazy C-1. You’ve probably tried most, but I find ice and/or heat really help - ice on the head/C2-3 and heat on the shoulders. I also get a prescription lidocaine gel made that also has muscle relaxer in it. I’ll put the formula below. And the last thing is vodka lol. I don’t know why, but it woks better than prescription pain killers. I guess it’s like a muscle relaxer. I’ve also gotten botox in the neck and shoulders that help…especially if they put a little in the scm muscle.
Sorry you are disappointed about the surgery, but I hope there’s something else that will help.
Here’s the pain cream:
Says on tube: Keto/Lido/Flex 10/4/1%
i think it’s ketoprofen 10%, lidocaine 4% (if you can get 5% even better) and flexeril 1%
I have 2 tricks also…ask them to put into 2 small tubes instead of one large and I also use a contact case to keep a small amount in my purse so it doesn’t take up much room or weight.
That was mostly for Headcase…I thought it would show up under their post, not at the end. Anyway, hope it helps somebody else too!
I also found that a drink of alcohol does wonders. I agree with your theory about it relaxing muscles. This actually prompted me to request a muscle relaxer (flexeril) prescription, but I don’t like the way it made me feel, so I didn’t continue taking it. Didn’t realize it came in gel form though! This would be great since, unfortunately, the alcohol effect only lasts about 30 min for me. For what it’s worth, I also have a long C-1/atlas bone.
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Hello Everyone, thank you for being so “purposefully” funny. It looks like you have woven humor into physically painful lives and use it to allay fears and ease the anxiety we feel every day with not being heard. So the humor is with purpose and I appreciate it! Having lived with one headache for the past seven months and a host of other complaints, including the choking thing, it is great to laugh with people who understand the pain and frustration before surgery and look forward to the joy in healing. I’m not post-surgery, but I can imagine the thrill of getting a little of my old self back after so long… Until recently I never looked back at all of the things I stopped doing because they made me feel ill or tired. Now, because of the mention of ES, another forum and this forum, I look forward to my last vacation later this year where the pain of travel is so bad it almost ruins the entire vacation. Thanks for keeping it positive and helpful.
SewMomma
I hope you are well and happy. If my memory is correct, I think your second surgery is this week. I just wanted to let you know I am thinking of you. I’m so happy for you that you will be click-free soon and I wish you a very speedy recovery.
Thank you for all your help during a stressful time. You were my little ES angel and I really appreciate you.
Big hug to you.
Headcase
Well hello there! How are YOU? Has anything gotten better or improved for you. You’re very thoughtful to remember me. You are right, it is Thursday. Time to say goodbye to the second click and hopefully be able to enjoy eating again. Sherbet: check. Robe: check. I’m ready!
Seriously, how are your symptoms you were having?
I’m so happy for you. Hooray.
I’m still a bit of a mess. Headaches continue every second. Having a TMJ procedure done on June 6. Injecting lidocaine into TMJ (thankfully under sedation). If that temporarily resolves headache, then good clue that TMJ is to blame and then I will have surgery. Waiting list for TMJ surgery is LONG. At the earliest it will be August but likely even longer.
In the meantime, I’m icing, eating mushy food, medicating and going on with life as a busy mom. Not much else to do.
Eat lots of ice cream and make sure Xavier continues to vacuum for you while you’re healing.
XOXO
Lol I do love watching my kids clean ha ha. You have a great memory!
Goodness I hope the injection works!!! Hang in there gal 
Hi Headcase,
There’s a good chance the styloids tangling w/ your jugular vein is what’s causing your headaches. Did you ever find someone to help you w/ ES? I guess TMJ is a place to start, but ultimately, you may need to have those styloids shortened to really get back to feeling normal.
I sympathize w/ your TMJ situation. I think I’m bone on bone in my right jaw joint at this point. Will be making an appt soon to have that looked at. Getting some padding put in there might make mine feel better. 