Thanks, Snapple! I will be sure to ask how many he has done. It makes me feel better knowing that the ES surgery was not as bad as what I am imaging. I have a wedge that I sleep on now so I have that covered. I just hope he agrees to do the surgery because I am desperate to get rid of this pain in my throat and side of my neck/face/ear. I will know tomorrow…appointment is at 8:00am.
I know one other thing. Some doctors have certain criteria for qualifying for a surgery.If you find one that says your styloid is too short or some other pain symptoms that dictate whether he will operate, do not give up.
I am not sure, but I believe the doctor out west who has done many excellent surgeries and for the most part successful and with little pain is the same doctor who refused to reoperate on my left side. He was willing to do the right side, but I knew from years of pain o the left side and none on the right that I could not tolerate a surgery on the right without first fixing the left. That is one of the reasons it took me so long to get help.
I finally opted for Dr Jason Newman at U of Penn because I knew he was familiar with his own patient needing a recuperation that he had done perfectly before.I sent him my records and he was willing to see me.I was looking for places to stay, travel and transportation arrangements when I was introduced to a surgeon in my families hometown. The surgeon knew about pain that I had never mentioned because most doctors dismiss it. He went directly to the pain and we were on our way to surgery in 3 weeks, barely enough time for me images, tests, preop etc.
So if there are 3 doctors I NC, you have entry hope.
The styloid that remained was swollen and looked like a marble in the center and the left stylohyoid was calcified to the hyoid making it hard to swallow. It felt like a stick in my throat.
The surgeon that I found got rid of it all. It has taken me 21 months and I still have some nerve pain on that side, but therapy and TMJ care have minimized it.
I am grateful to the doc out west for doing the 2 D CT in 2016 and consulting over the phone. He gave me the info I needed to be believed. From his 2D CT, my spouse made a 3D view with 3 D slicer and a tutorial posted on this site. So always take what information you get and move forward. Be grateful for each step. We hope that all of you who are being diagnosed can find help more quickly. I know that is one of my goals in life now. To advocate for more knowledge about Eagles.
May you find healing soon and then bring your reports to all your health care professionals. You will be surprised to find 4 or 5 people in your circle of contacts that are suffering and not on this forum I have.
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Emma, so Dr. Jason Newman did your surgery? Where is he located?
Dr Jason Newman, Dr Jason Lee, U of Pennsylvania, 800 Walnut Street
18th Floor, Philadelphia, PA 19107, (215) 829-5180
(head and neck, skull base surgeon) https://www.pennmedicine.org/providers/profile/jason-newman
Thanks so much Jules
No he did not, but he was willing to see me for a redo when other surgeons were not…I will send you a private message.
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Just got home from my consult with Dr. Patel at UNC Hospital. He has done this surgery many times, but not for ES. He has removed MANY styliods and ligaments due to cancer. He has operated many times on the head/neck/skull area with successful results. He is willing to do my surgery and remove my styloid and ligaments from my left side. My right side is worse than my left however, since my left is bothering me now, he will do the left first. I am scheduled as an outpatient (to go home after surgery) but he told me I may need to stay overnight depending on drainage. He said this is a very uncomplicated surgery and the percentage of possible nerve damage is 1%-4%. He wants me to start gabapentin today. I am finally hopeful that I will get my life back soon. I will have the right side done in the near future. I am terrified but I can do this! I have to …
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Also, Dr. Patel and Dr. Hackman work together. Dr. Hackman has performed a successful surgery for one of our members I think.
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Yes, he has. That’s great news, head & neck surgeons are a good bet! Really glad that he’ll help…hope reading post op experiences on here will help you be as prepared as you can be. Feel free to ask any questions! Let us know when you get a date.
Hopefully the Gabapentin will help while you wait- it can take a little while to build up in your system so may not work straightaway.
Got a date for my surgery: June 29, 2020. 10 Days and hopefully the beginning of the end of this nightmare. Soooo scared but I know its the only way to be free of this.
Yay, not long to go! I was really nervous before surgery, I was worried about how I’d swallow afterwards & my family were worried that I might have some facial paralysis…I’m not saying recovery was a piece of cake but it was nowhere near as bad as I expected! No problem swallowing & just numbness in my face. Many members go on to have their other side done, so that must say it’s worth doing. As you say, it’s the only way to be free of Eagles!
Jules, did you take gabapentin or just the pain meds, ibuprofen and tylenol? Dr. Patel does the external surgery, so I hope there will not be swallowing issues. I’ll be sure to ask.
I take Amitriptyline, I still get some nerve pain, but it’s better than it was before surgery.
Do you mean after surgery? I was lucky & not in too much pain after surgery, they gave me morphine immediately after the op (I’m in the Uk, it’s a bit different & they keep you in overnight here), but once I went home I only needed paracetemol, that’s pretty unusual though!
luv4pj,
It is important to know if Dr. Patel will Rx a course of prednisone along w/ your post op pain meds. Prednisone & ice went far toward helping my throat swelling post op. A very sore throat for a few days after surgery is also not uncommon because a breathing tube is used during surgery & that can irritate your throat. My throat was terribly sore after my first surgery but not after my second. The second side gave me my worst ES symptoms but the first side was giving me potential vascular symptoms so my doctor chose to do that one first. It was a longer more challenging surgery & a more difficult recovery.
I’m with Jules, ES surgery gave me my life back. I’m very active & had to slow way down until I had my surgeries. It took many months for my nerves to heal after each one, but it was down time well spent as I’m up & out now. Jules & I had our surgeries around the same time so we can attest to the long term good effects of well done ES surgeries.
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Thank you Isaiah. I read what you wrote about the way you took your pain medications…alternating tylenol and ibuprofen. Did you take anything else? Gabapentin? I’m a nervous wreck. I’ve had this throat pain with burning and horrible feeling of something stuck in my throat for so long. I hate to know it gets any worse than this but apparently, it does after surgery.
Jules, I have been reading quite a bit about glossopharengeal neuralgia. I wanted to ask your opinion since apparently are very familiar with these issues. My symptoms are throat pain, burning in throat and feeling like I have a nail stuck in the side of my tonsil. The pain, burning is constant. The “nail feeling” comes and goes throughout the day. It hurts when I swallow. I also feel the burning in my nose. My throat is my issue. My left ear hurts a little but is tolerable. Those are my only symptoms. I am having ES surgery in 9 days and I am just wondering if removing the styloids will help if I do have Gloss. Neuralgia. What is your opinion?
Hopefully in time the surgery will resolve this, with a skilled surgeon. It doesn’t always get worse with surgery- sometimes members have had pain go straight away, but we try to be honest so people know what to expect. During surgery, nerves at times have to be moves slightly out of the way, which can irritate them & cause a flare up, & if the nerve has been compressed or rubbed by the styloids then this will take time to heal. But generally having the surgery should improve GPN- ES is listed as a possible cause. Certainly if you don’t have surgery, the pain won’t go, & could get worse…
Hope that the next few days pass quickly for you & with less anxiety! Isaiah & I will be praying for your surgery to go well 
Thank you so much Jules. I cannot tell you how scared I am. I am so thankful for you taking the time to help me. I am going to ask to speak to the surgeon again because I have several questions regarding the surgery.
- What type of meds will I get after surgery? steriods, pain meds
- Do I need an MRI to help rule out GPN?
- How will my swallowing be after external procedure? will it be affected?
- How long will I be out of work?
I am a Registered Nurse and I have not been able to work for over a month now. I’ve wondered if I will be able to work after a month or so…
Hi luv4pj,
Good questions for your surgeon. I will offer my opinion here:
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If your surgeon doesn’t routinely Rx prednisone post op, please tell him you would definitely like a 2 week course along w/ your pain meds. Prednisone is a huge help in reducing post op swelling which is a large contributor to post op pain. Ice & keeping your head elevated when at rest are other vital factors in controlling post op swelling.
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If I were you, I would wait to see how surgery affects your tongue & throat symptoms rather than going to the expense of an MRI at this time. There is a very good chance getting your styloid(s) removed will end those symptoms. As Jules said, the symptoms can go as soon as surgery is done but more often they linger for awhile after as it takes time for the nerves to heal.
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Your swallowing will be fine after the external procedure. Your throat may be sore for up to a cpl weeks post op both from the surgery & from the breathing tube used during surgery. Sore throat post op is not uncommon but also isn’t always present.
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Some ppl go back to work within a few days but most wait at least 2 weeks post op. It depends on how demanding the job is & how you feel. Since you’re a nurse, you may want to start back part time as being on your feet for 10-12 hrs in a day will likely not be doable till a month or so after surgery. Only you will be able to tell when your endurance & tolerance for a full work day have returned.
I hope this info is helpful. I’m glad your surgery is coming up soon. Try to relax & face it w/ great expectations for an excellent outcome. A positive mindset going into surgery pays great dividends. As Jules said, we’ll be praying for you.
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Hi Luv4pj,
I know this is scary stuff but it sounds like you have many reasons to feel optimistic about this procedure. For me, the surgery was a cakewalk compared to how I felt prior to the procedure, but everyone is different. You have already received excellent advise from others about what to expect post-surgically. Given that you are a nurse but not knowing your specific duties, I will add that I recovered extremely quickly in many ways but was slow to be able to lift or carry much weight unless the items were loaded into a backpack, and my jaw got tired from talking pretty quickly for about a month. Like some others have posted, I took Tylenol alternating with Advil for a few days after surgery. And gabapentin has helped a lot with my symptoms. As others have said, I think it’s important to have the expectation that your recovery will wax and wane a bit and that temporary worsening does not mean the surgery was unsuccessful. I hope it all goes beautifully!
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