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Eagle Syndrome - Online Support Group

3 Weeks Post Op

BFresh,

Everything you’ve gone through post op will be worth it when your ES symptoms subside over the next year. If the other side gets to bothering you (as in Weezie’s case), you may want to plan for round 2. As bad as that sounds right now, it’s soooo worth it to have the styloids outta there & to really feel good again. I speak from experience!! Surgical recovery is no fun, but I shudder to think where I’d be now if my styloids/s-h ligaments were still in place!!

Weezie65 -

So glad you’re continuing to see good progress in recovery. You hit the nail on the head as far as your remaining symptoms go. The second elongated styloid often becomes more symptomatic after one is removed. Not just sure why but it’s not uncommon. Hopefully your symptoms will continue to be mild.

Full energy recover took 2 months to return for me after each surgery. Some people are up to speed much sooner. I wasn’t completely down, but definitely moving less & at a slower pace than is normal for me. Be assured your energy level will rebound.

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Sorry to hear of your continued troubles, fingers crossed things will improve now the scab is gone. :crossed_fingers: I agree though, never really thought it would stay as long as it has, it has been quite a haul but the surgery has already improved my life so very, very much. Hope you will see the light at the end of the tunnel soon @BFresh.

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Thinking of you, I hope that you can get some reassurance from your doctor at your next appt.

Two nights of not sleeping well and back on Tylenol 3s. Looking as best I can in my throat I have a very dark burgandy colored sore where the incision was located I’m guessing. The white scab that used to cover it is gone and this sort of open sore like the meanest canker you’ve ever had is exposed. Anything touching it is incredibly painful… salt, cold, sweet, just about everything it seems. I got in to see my family doctor and the good news is that everything looks healthy - I mean no infection of any kind. Because this is so rare, there just isn’t a standard book on recovery, timeline, supportive medication, etc. It’s a bit trial and error I guess… anyway, I’ve got a prescription for a mouth rinse consisting of nystatin, lidocaine, benadryl and tetracycline. It’s kind of a “hit everything just in case and numb it while you’re at it” rinse. Anti-fungal, anti-biotic, anti-histamine and numbing agent. Just the numbing part alone makes it worth a try!!

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Sounds like a cure all!! Glad your doctor knew about that product & I hope it makes a huge difference in how you feel & helps accelerate the healing of that area. Your recovery has been quite interesting but I’m sure you’d have preferred not to be the “guinea pig” here. It has served a good purpose for forum members to get to know some of the many possible post op problems that can arise. I’m glad your body is healing & am praying it will become a more straight-forward process from now on.

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Hope that it helps!

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We call that magic mouthwash! It’s a real miracle worker for those who need it.

Sharon from ModSupport

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Well, I kind of suspected what the surgeon would say and unfortunately I was correct. After looking and poking and prodding, the surgeon took the rather definitive position that either my nerve has been damaged beyond the point where surgery could help or there is some other reason for my pain (such as a blood vessel compressing the nerve - glossopharyngeal neuralgia). I asked whether the nerve could continue healing over the coming months and he was honest, which I appreciate, in saying in his experience he’s only had 1 patient continue to improve beyond this point (6 weeks). This patient had symptom resolution after 9 months and the surgeon wasn’t sure if the surgery was the reason for the relief or if it happened for some other reason. I know there will be those on here that disagree and we’ve read cases that continue to heal for up to a year… fingers crossed I’m in that camp! He did say my throat was completely healed and looked great, the “magic mouthwash” was unnecessary except for the lidocaine numbing benefit.

It was quite difficult to hear and quite depressing but at this point, I need to be realistic and start looking at next steps. With that in mind, I started taking Carbamazepine today in addition to my Lyrica dose. Hopefully that will help the pain while I sort things out with my neurologist. I need an MRI done to see if there is a blood vessel compressing a nerve, so I will get in line for that. Sorry to be a downer on here but I promised an update and I guess they can’t all be positive.

Hi BFresh,

You’re right! I will be the first to disagree w/ your doctor’s assessment about nerve healing. I had some major nerve “damage”/irritation that occurred during my first ES surgery. It caused paralysis of half my tongue & extreme First Bite Syndrome. For 6+ months, I couldn’t talk or eat normally because of the issue w/ my tongue & the FBS was excruciating. By 9 months post op, my tongue was pretty close to normal again (95%) & my FBS much less intense. I’m now 5.5 years out from my first surgery (didn’t get FBS w/ my second so only have it on one side) & have noticed in the last 3-4 months that my FBS symptoms are nearly gone. It has taken five & a half years for those nerves to heal BUT they have!!!

Nerve tissue regenerates very slowly, but it most often does recover. Six months post op you’ll have a much better idea of what is sticking w/ you & what may recover. That said, it is important for you to deal w/ your current pain in the manner most acceptable to you, & Lyrica & Carbamazepine are fine options. As a matter of fact, if they help reduce your pain significantly, you may find those nerves will recover faster. Pain makes our bodies “tense” especially in the area where the pain occurs. It’s another sometimes unhelpful body response to protecting the area that’s injured. When that area can relax w/ the help of pain relievers, then recovery can begin to occur more effectively.

I hope this information makes sense to you & is an encouragement. I believe you will recover more completely & may eventually be able to stop the nerve pain meds. It will be a gradual process though.

Hi all, I had my 6 week post-op follow-up today and I am healing nicely, @BFresh sorry to hear your post-op follow-up was not what you wanted to hear, I do hope that you will continue to see more relief as nerves heal. I still have a little pain but nothing like I had daily before surgery, I believe I will get to or close to 100% relief.

I am almost pain free on my surgery side, I have a lump in my throat at the surgical sight that feels like a chunk of food stuck in my throat, it’s quite annoying but Dr. O’Connell believes it will eventually resolve itself. I have noticed a great deal of improvement over this past week, which is a good sign for me.

I do still have daily headaches and, still dizziness and vertigo turning to my right side. Tinnitus is still very loud in both ears and that terrible first bite syndrome, I’ve learned to brace myself for the pain which seems to make it less terrible if that makes sense?

Dr. O’Connell is going to schedule me to remove my right SP also, which I am very pleased about, although again, he stressed he could in no way guarantee a completely pain & symptom free outcome. All I know is that my life has changed drastically since surgery, it was by no means an easy go at first but I feel, so so much better. I have family and friends commenting on how different I seem, I’ve been told I’m glowing, heck yes because I’m not in agony anymore and can walk without stumbling like a drunken sailor!

After 5 years of pain/ symptoms and fighting to find a doctor to listen, I am so very thankful to finally have relief and know that I was not crazy and it was/is all real (I’m sure I’m not the only one who was questioning their own sanity)!

This past weekend I was able to run around and play badminton with my family, my husband keeps commenting on how he is having to get used to me walking and not wobbling all over the place, all I can say is it’s a good problem for him to have lol!

Again, so many thanks for the love, support and guidance I have received from fellow sufferers on this forum, you all gave me hope again. I will be forever grateful. :pray:t2:

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Weezie,

All I can say is AMEN! I’m so glad you’ve seen such drastic improvement already. That is what we’ve come to hope & even expect from a good ES surgery. Surgical recovery can be the pits but once we get over that hurdle, the physical, mental & emotional recovery that occurs can be nothing short of miraculous. I hope your next surgery goes as well & that the final annoying symptoms disappear entirely.

:gift_heart:

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So sorry that surgery hasn’t improved your pain…I hope that the carbamazepine does control it. I would still hold out hope that things will improve with more healing, I think it is still early days…Let us know how you get on with the neurologist. Ben’s friends also have a facial pain group which includes GPN, you could have a look at their site & read up on tests & treatments if you’re interested. And don’t worry about being a downer- it’s important for other members to read honest stories.
Thinking of you…

So glad that after all this time you’ve seen so much improvement! To be up to playing badminton with your family must be amazing, so pleased for you!

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Hello my friends, I am four weeks post Op from my second/left side!! (Tuesday June 2) Same Dr as Weezie and B Fresh
Surgery itself went very well, and the first few days were typical, although I had more swelling and pain then my first side and less pain control. This styloid was longer And I think more bound in there… I used to have an egg like lump which was instantly gone!!
5 days after surgery (Saturday night)I felt a pop and suddenly could hear myself in my head… o looked and the tissue beside my incision had ripped apart :flushed: I luckily have an ER nurse and a nursing professor as neighbors , they both looked and assured my that they’re as no infection or inflammation and to be patient until Monday when dr O’s office could get back to me… the wait almost killed me!! Lol
Anyway Monday morning they called me and told me not to worry and that it would all heal nicely from the bottom up… I was sure they were nuts and didn’t understand how awful it was :joy: I got more antibiotics and pain meds but that’s it… and sure enough here I am 1 month later and I am healed nicely and feeling great! I have a phone call check up next week!
Feeling amazing and thrilled my eagles is over!

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Hello @Diasy! So glad to hear you have healed up nicely and feeling amazing! So glad your Eagles journey is over! Thank you for your support and for pointing me in the right direction, so very grateful. :smiling_face_with_three_hearts:

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So glad that you’re through it, sounds really grim, so pleased for you that it’s over! Useful neighb :wink:ours
Thanks for the update, hope that your follow up & recovery go well!

Bfresh , do not panic yet. After my intraoral surgery, it took 13 weeks for me to feel better.
At about 2 months, I consulted with another doctor who told me that the surgery had been done properly, and it takes 6-9 months to sometimes feel better. It took about that long and I still had some symptoms after that, for awhile.
I would get an MRI, but I would not, repeat would not go for any other surgery especially MVD, unless I got a new 3 D CT scan of the styloid and consulted with a head and neck surgeon who does cancer skull base surgery. Specifically skull base. Even saying that, you need to give time for this surgery to work. At least 6 months.
If you are still needing drugs at that time, the new 3 D CT would be my next step. If you want more info, you can message me

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Weezie65, so glad you are doing better. Yes, you having energy is a good problem for your husband to have. Glad you are having fun. Also, great to know someone still plays badminton. I loved that game and volleyball. They were the only two things that I was able to do decently.

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Thank you @emma, I am thrilled to be feeling this good so soon after surgery; I still have some healing to do and another surgery to get through but I keep looking up…that’s the secret of life. :smiling_face_with_three_hearts:

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