It is 11 days post op styloidectomy external on one side only for my son. All throat pain is gone. Swallowing is not a problem. Eating is no longer a problem. 95% of his ear pain is gone (We think the other 5% is related to his tube which is coming out). This is miraculous. He still has some swelling near the scar, but the swelling in his neck is gone. He has better mobility of his neck, but turning toward the side with the scar will take some time. His neck pain is gone. The scraping with shooting pains is gone. Attached is a picture of his scar if anyone is interested in what it looks like. The steri strips came off yesterday. The doctor said it is healing nicely and that eventually it will be barely visible. That is really the least of our concerns. If anyone has any questions, please ask away and I will share as much detail as you would like.
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Terrific news, Ear Mom! Thanks for sharing.
Ear Mom! His healing looks great and the relief is basically instantaneous. like removing a splinter. This is a bit of a stretch as no surgery is easy and without risk but a styloidectomy turns out to be a simple procedure with complete resolution of symptoms (when done well-of course). Compared to the vast experiments done to people check if its anything else but ES. Getting to the surgery is the nerve wracking part-so glad you found the strength to keep pushing and leaving bad doctors behind till someone did what needed to be done.
Find out when you can put Mederma on it, that stuff reduced my scaring even 3 years post surgery.
This relief is a life changing event for him to be so young and in so much pain. Even old it sucked.
Glad you get all be on the mend and can put this in the file called "the past".
Shaw - that's a really good point. The surgery is so much easier than all the tests you have to go through because they don't believe you have Eagles. Also, the surgery is easier than all the things they make you go through to try to cure your pain instead of doing a surgery. The surgeries for me were by far the least traumatic part of Eagles.
shaw said:
Ear Mom! His healing looks great and the relief is basically instantaneous. like removing a splinter. This is a bit of a stretch as no surgery is easy and without risk but a styloidectomy turns out to be a simple procedure with complete resolution of symptoms (when done well-of course). Compared to the vast experiments done to people check if its anything else but ES. Getting to the surgery is the nerve wracking part-so glad you found the strength to keep pushing and leaving bad doctors behind till someone did what needed to be done.
Find out when you can put Mederma on it, that stuff reduced my scaring even 3 years post surgery.
This relief is a life changing event for him to be so young and in so much pain. Even old it sucked.
Glad you get all be on the mend and can put this in the file called "the past".
That is fantastic news and his scar, very similar to how mine looked, will be invisible in just a few months!
EarMom,
I answered in an email to you, but I also wanted to say on the forum too that I am so happy to hear about your son's improvement. That is just fantastic news. That poor little guy has been through so much. It's so good that he had you as such a positive and powerful advocate for him.
The incision looks really low....mine was up high towards my ear. What doctor did his?
Ear Mom I am so happy for your family and especially for your son. I have my appointment to tomorrow at UM. If I do go for another opinion I am gong to try and see both Cognetti and your doctor in Pennsylvania. I am a bit more upbeat now and hoping for the best. My styloid on the affected side is only 3.2 so although I have every single symptom of Eagle syndrome I have seen and CAT and MRIs they can;t find anything on I am still wondering how in the world could this be my problem? I see people with super long styloids, but I see that your son that if I remember correctly also did not have super long styloid is getting relief and it gives me hope. I guess I just don't understand how having tonsils out could make these styloids a problem without them getting real long? Does it change their angle when we have the tonsils removed? I have bee thinking lately about signs I may have had as a child. It hit me that I used to have what I called "hot flashes" and "electric shocks" as a child well into adulthood. If I turned my head to fast I would have an electric shock shoot up the side of my head. I used to be careful about how I turned my head. When it would happen I would have to croutch down and get myself together until the heat from the shock wore off. If it happened while I was talking to someone I would say "you know how you get a hot flash if you more your head to fast? Most of them just shrugged a few said what the hell are you talking about but enough said yeah me too that I thought everyone had this! Realizing now that the ones that said me to were just trying to be agreeable! Thanks so much for your concern it is a blessing to me.
My son's doctor was Jason Newman, Penn Hospital Philadelphia, PA and the placement is actually in the fold of his neck so when he is standing and talking, you really can't see it. You have to look for it. It is amazing how well he did that.
Loopylooper said:
The incision looks really low....mine was up high towards my ear. What doctor did his?
Peacefulbuttons: I am so glad to hear you are more upbeat and ready to tackle this!!! My son had the same symptom as you. Sometimes when he turned his head, he would hear cracking or scraping and he would have electric shooting pains up his neck and face. so, you too had this as a child and it just progressed to the point where you are now. It must be validating to you to know that you know your own body and you really had something going wrong with you. Now you know what it is and it can be fixed although for some it is not an easy road. The experience of the surgeon really matters as many have said.
Please know that Cognetti told me he has removed both long and short styloids. Cognetti said that the length doesn't matter. Those were his words to me. So, bottom line, if you are symptomatic, you have it done. Cognetti at Jefferson and Newman at Penn Medicine are only blocks away from each other in Philadelphia. It is good for you to see more than one doctor before you decide who you are comfortable with as well as finding someone who agrees to take on your challenges. Keep us posted.
peacefulbuttons said:
Ear Mom I am so happy for your family and especially for your son. I have my appointment to tomorrow at UM. If I do go for another opinion I am gong to try and see both Cognetti and your doctor in Pennsylvania. I am a bit more upbeat now and hoping for the best. My styloid on the affected side is only 3.2 so although I have every single symptom of Eagle syndrome I have seen and CAT and MRIs they can;t find anything on I am still wondering how in the world could this be my problem? I see people with super long styloids, but I see that your son that if I remember correctly also did not have super long styloid is getting relief and it gives me hope. I guess I just don't understand how having tonsils out could make these styloids a problem without them getting real long? Does it change their angle when we have the tonsils removed? I have bee thinking lately about signs I may have had as a child. It hit me that I used to have what I called "hot flashes" and "electric shocks" as a child well into adulthood. If I turned my head to fast I would have an electric shock shoot up the side of my head. I used to be careful about how I turned my head. When it would happen I would have to croutch down and get myself together until the heat from the shock wore off. If it happened while I was talking to someone I would say "you know how you get a hot flash if you more your head to fast? Most of them just shrugged a few said what the hell are you talking about but enough said yeah me too that I thought everyone had this! Realizing now that the ones that said me to were just trying to be agreeable! Thanks so much for your concern it is a blessing to me.
great news!! SO happy to hear of the excellent progress and thanks for posting the photo!
and taking the time to keep us updated!!
as a newbie waiting to have surgery in 7days time it is great to hear some positive surgery stories! I hope your son continues to heal well. Peacefulbuttons, as a child I had the exact same experience when turning my head fast and would crouch on the floor until the searingly hot pain traveled up my neck into my head and went off like a stick of dynamite, no one had a clue why it happened and I have never come across a single other person who has experienced this.....until now! If it helps anyone struggling to get treatment. I don't have elongated styliod, they are normal length, however they are malformed and hook up and crush surounding structures when I move my head and I have a venous outflow insufficiency in my jugular which causes a whole host of horrid symptoms which are like a permanent migraine, so nausea, dizzyness
PAIN!! Anyway hi all pleased to meet you!
Good luck brain surgerynovice! My son is doing fantastic. He has been pain free for 3 weeks which is a record period of time since this all started almost 6 years ago. I wish more doctors were aware and on board. I will be helping our surgeon write a medical article for the journals so that the world has one more unusual case to refer to. Keep us posted!
brainsurgerynovice. Is the venousoutflow problem related to the styloids? I just had an MRA done but they only looked at my arteries not my veins. Where are you getting surgery done? What kind of doc is doing the surgery? My styloid on the bad side is 3.2 on 3D CT. So not too long.. I dont know anything about the shape? How did you find this out?
I first got diagnosed with idiopathic Intracranial hypertension which means the cerebral spinal fluid builds and the pressure increases eventually after the usual treatments didn't work I asked them to look at my diagnosis again and had heard others with the same diagnosis having problems with their. Venous outflow. When you have venous outflow insufficiency you get a build up of cfs and pressure on the brain with all the symptoms of pain and balance problems eye pain , tinnitus pain all sorts. Anyway I had a mri and mra and then a ctv and then a catheter venogram as they were thinking of stenting the collapses in the vein and anyway when they were investigating the venous problem they found my styliod bones in the way and said when I move my head or lay down I go dizzy. Because the vein is being compressed by styliods, so having them removed by an ENT surgeon who specializes in skull base decompression in the uk.
HI brainsurgerynovice I am in uk too !! did you have your operation yet ? if so how are you feeling ? Can you let me know what doctor you are seeing for this ? is it trough NHS or private ?
Brainsurgery and peaceful have either of you found out you might had FMD? I was just diagnosed via upper limb blood pressure cuff test to a few specific areas checking outflow of blood, awaiting arteriogram (they can do these without Visipaque as my concern is the contrast may be accumulating in me, I have high amounts of Gadolinium form MRI's already dermal and bowel fibrosis, yet can't seem to get doctors on track, because they don't want to diagnose me due to NOT having kidney disease to begin with, they think stuff like this is only happening in those alread diagnosed w/KD!) I suspected i had arery issues many years ago when I told docs, "ICan FEEL my blood run thru me" It hurts, I was in extreme they diagnose "Fibromyalgia at that time" no WONDER< my arteries weren't feeding the mucles bones ligaments and tendons properly, which is why the styloid for calcified, seemingly elongated as the tendons pulled tissue back as well (I Have also been diagnosed with Dupuytren's) genetic causes contractures in hands feet and in men PEyronie's what is the =to it in woman??? NOTHING... crickets....I say IC/Vulvodynia and coccyxdynia, the reason i am posting about this is became I see many of us have crossover conditions that we might no t connect if it were not for that one person on the boards! LOL
I had suspected the pancreatitis I'd been suffering form believed to be related to my Sjogren's and a concurring hernia/hemtoma yes I have both, night be a problem with SMA *SUperior mesenteric artery) I had that checked at the time maybe around '11 or'12 or so, scheduling more tests,
I only wish I could finally *ACE one!
*ACTUALLLY CONQUER EVERYTHING
Cat
So glad your son is doing great!!!!!!! My scar is in the crease of my neck also. Of course I see it but when everyone ask where my scar is, I point to it and they don't see it. They continue to ask "WHERE"? :)
We are almost 1 month post surgery and the right side he had done is doing great still. No symptoms. But the left side is symptomatic. Feeling sad that he may need to go through this again on the other side...we always knew he was bi-lateral, but he was doing so well.
am a few hours post Stylioectomy. I have lost all hearing in left ear and all sensation left side of face. I have had trouble speaking swallowing but that is thankfully is already improving. I feel very emotional and quite low.