I had the same tumor removed 4 weeks ago! I still have that "first bite syndrome" and Horner's Syndrome. Still better than the pain the nerve was causing me. Thank you for posting.
Angie Jeanelle I'm healing well, slow, but good. I'm going to ask about Botox for the first bite at my checkup. Like morning sickness, it happens more often than the name suggests 😖
Definitely going to ask the same thing at my next appointment as well. It’s such a horrible pain to feel the first like 10 bites, when I brush my teeth, it even hurts to cry! It’s the weirdest thing. 😅
Wow! Your story is just like mine. Two years ago I found out I had a shwanoma! I also have horner’s syndrom. I was really concerned about the way my eyes looked but it got SO MUCH BETTER over time! Now it’s almost impossible to notice. One of my vocal chords was also damaged but after two years my voice is just normal... I hope you do well on your recovery!
Me too! I just had my schwannoma taken out 4 weeks ago in exactly the same place as Angie (only mine was much smaller, size of a cherry, and my incision is only a little over an inch long), I also woke up from the surgery with Horner´s syndrome. Only in my case nobody knew beforehand that it was a Schwannoma, everyone thought it was propably a cancerous lymph node. So nobody had an idea it was actually a tumour of a nerve. So to this day I don´t know on which nerve. Horner´s syndrome occurs when the sympathetic nerve gets damaged, so maybe the Schwannoma was on this one (like Angie´s probably), or on some other nerve and they just damaged the ympathetic one in the process. I have no idea. My voice is fine, but since the surgery my nose is always stuffy which is terribly annoying. And the Horner´s is really bad, the muscles around my eyes keep getting cramps so both my eye balls hurt from time to time and it gives me headaches. The bad this is, I already had a mild ptosis on my right eye lid since I was a little girl, it´s been there since birth. So it really shows badly now, I look so much worse than Angie :(. I so hope it will go away. I also have trouble reading, it just feels weird and exhausting. No idea where that comes from. At least I had no pain after the surgery whatsoever. But that eye is driving me absolutely crazy. They say it can take up to one year to heal, and if it doesn´t, only when the year has passed should I have eye lid surgery. But I definitely will! My muscles hurt, eye ball pain is really crazy. And I look like Quasimodo (Disney version). I´m so unhappy. Wish you all the best!
Hi! I know it has been 3 years now you posted that comment but I need your help. A year ago, I had a surgery on my neck and I have Horner's syndrome. It was much worse when I first woke up and it got much better a couple of months after the surgery and it is same for months now. 2 mm difference but it makes me so uncomfortable. I wanna ask you if you notice any progress after a year. Because my doctor doesn't wanna me to have an eyelid surgery now. And I don't think it will be better naturally even if I wait more.
@@AlfaStar... Well, I can only say what my eye doctor said and he is really good, does scientific research at uni most of the time and only sees patients a few days a week. He said that after a year the process is usually finished, meaning that after a year you have reached the final stage of healing with Horner´s. Unlikely that anything improves after that, he said. He says, if mine doesn´t improve, I can have surgery when one year has passed.
@@AlfaStar... Thank you, I can do with every good wish 😊. I have got one question, if you don´t mind. You said it got better 2 months after surgery. Did that happen gradually or did you wake up one morning and your eye was suddenly better? For me it is now almost 5 weeks after surgery and nothing at all has happened yet.
Hi, I appreciate you taking the time out to make this video. I have recently been diagnosed with paraganglioma in my neck. The next step is getting a genetic testing, more tests and surgery, depending on if it is safe enough. I plan on getting a second opinion from Stanford hospital. I don’t know what to expect so I’m doing my research. I appreciate you making a video on this sensitive subject for us out here going through the same or similar issues as you. I understand the more tests the better the physicians can help me but I’m not going to candy coat this. I’m starting to feel like a lab rat and the last thing I want to be is a guinea pig. I went from seeing the doctor x2 a year for checkups to a whirlwind of appointments for testing. Paraganglioma is rare and I need to be reassured those physicians and surgeons are experienced. I pray I am guided to find the answers and peace to what I am seeking. You are a very brave lady and I tip my hat to you. I believe with the right supplements, good nutritious food, plenty of water and natural topical creams, the scar will fade and it will only be a memory. I have heard of “Scar healing tape” that may be beneficial. Take care and again Thank you for sharing your experience with the world. I don’t feel so all alone now. Angel from The Bay Area, Silicon Valley, CA USA
I have a horner syndrome after neck surgery last 2014,,I use an eye drops and it help to open up my right eye..it works but I have to put the eye drops every 2 hours.. I have been doing it since then..
@@AngieJeanelle I use the medic’s Choice eye drops advanced,,it has the active ingredients of dextran 70 0.1% polyethylene glycol 400 1%, povidone 1%...lubricant,,
Thank you for posting this. I’m just in the beginning phase of this so I’m glad to see it was only painful to you for a few days. Sorry you’re so young and having to deal with this. Yours may be familial.
Hey @angie i hope you are doing well. A dear friend has gone through a sugery for schwannoma and is affected with a similar condition- horner. Can you please share the journey of your recovery around this? Anything that can make this get better quickly. It will be really helpful if you could throw some light. Plzzzz.....
I had this same exact tumor and surgery in 2001 almost 24 years ago. I have had 3 blepharoplasties to correct my eyelids over the years, all in all, that was my biggest challenge over the years. However, in the last few years, I have been dealing with arthritis in my neck. I deal with a lot of stiffness and joint pain around C1 and C2 - which is right near where the tumor was, likely due to the surgical staples used to close up my tissues after the surgery.
I'm currently dealing with Horner's Syndrome. It's been going on for 11 months and the Dr's still haven't found the cause of it after 10 scans, 3 MRI's and 20 Dr visits. I'm going in for another CT scan on the soft tissue of my neck later this month, maybe there's something there, I feel like theres something going on in the right side of my neck. There is a temporary solution anyone dealing with a droopy eye lid situation, try out the eye drop called UPNEEQ it get's your eye back to normal with one little drop, takes about 10 mins to kick in and last around 7 hours. It's an over the counter eye drop you can order online or buy at an eye Dr's office. I have a video of me using for my Horner's Syndrome. I hope this helps you and anyone else watching dealing with this issue. I hope we all get well and recover soon!
Thank you for this video, I had cervical surgery ADCF on levels c3/c4 & c4/c5. After this procedure i was suffering pain as one might imagine, I have had spinal problems since 2013 and had a previous ADCF on level c5/c6. Because of my long standing pain history I have been on many opioids and was given ketamine after this latest procedure because of my tolerance to meds, I complained of head aches and arm aches plus blurred vision post op both a new symptom. They removed the ketamine because they thought this was to be the cause, A neurologist gave me a very brief examination and said I had a stroke during my surgery. I had many different doctors including my spinal team and I heard the phrase Horners. After 2 ct & 2 mri scans with each having a contrast on 1 scan. I was then told I have horners syndrome which I have never heard of, I’m still suffering from eye issues but the strangest thing is non sweating on the affected side. They think the cause was pressure from the tool which opened my neck, I had a cage fitted in the procedure. All the videos are good to watch as no one I know has heard of Horners. The sweating is the strangest thing.
Hi! Where did you get the diagnosis? I have something inside my neck too, (submaxilar abd my eyelid drops) but I don't know what is it. I'd like to have a second opinion. Please, Thank you 🙏🏽
Hey there! I still have a bit of a droopy eye buts it’s totally not that noticeable. As far as my first bite goes, I still have that🫠 A few years ago, someone in the comments mentioned Botox injections in the jaw to help alleviate that. May have to try one day!
@@AngieJeanelle my consultant said with having Botox there's a chance of the face dropping on one side :( I'd rather not and just keep it how it is than have that 😭 I hope it goes away one day x
@@JustAmz1 oh no!! Yea…I had my doubts about it so this confirms it. I won’t try it.😄 When I told my surgeon about it he said he sees how that would work but wouldn’t recommend. I’ve grown to live with it. 🫠
Sorry to hear that! You’re so right. You do learn to live with it. It’s been a few months since my surgery and I’ve kind of gotten used to my eye being a little different than the other. The not being able to sweat really doesn’t bother me. 😄
Wow! You're done with it. Happy for you. What was the size of your schwannoma? How long was the surgery? After finding it out, how many months did it take to go for surgery? Please let me know ASAP. 😧🙏
I have done operation on 23/12/2021 , right vagus schwannoma excissision (removal of tumour) discharge on 26/12/2021, no complications.. before surgery doctor told to me " my vocal cord paralysis, gastro ,renal, cardiac issue s will happens ,, needed speech therapy atleast 18 months to recover my voice "but after surgery no complications ,,my voice good , no digestive system problems ,, we have to do PRAYER trust in LORD . HE WILL CHANGE ALL THE RULES BECAUSE HE IS THE FIRST DOCTOR ,AND FOREVER
Hi Diana, where did u get your surgery? I have a neck schwannoma as well, they are telling me that surgery will impact my vocal chords and swallowing function.
I had schwannoma tumor in my lung. I had surgery about 8 weeks ago. The incision is about 8 inches long and the first 4 weeks the pain was unbearable even now after 8 weeks I still have pain. Pain medication doesn’t help much. So I totally understand your pain. Glad it’s over for you. Hope it will over for me soon.
I was diagnosed with Horner's syndrome after a cervical spine surgery for one level on September 6, 2019. I came across your video after searching about Horner's syndrome. Just curious if your eye has improved. My doctor told me nothing needs to be done on my eye as it will heal on its own.
I’m sorry to hear! I hope you’re recovering well from surgery. As far as my eye goes, it’s definitely improved but it hasn’t gone back to normal. The first couple of months after surgery it was really noticeable. I decided not to go through with eye surgery to even it out. It hasn’t really been a big deal for me and I honestly don’t mind it anymore. It’s the new me😉 It’s not 100% how it used to be but we’ll see how it does with time☺️
@mtancab4293 hi, i am reading your comment now..i know it’s been 4 years, but could you please share ur experience regarding the pain after surgery, like how much it took u to feel painless in ur back; and most importantly, did your eye recover completely on its own as the doctor said or no?? Please let me know ur progress
Hi Angie, am happy for you..I have the same condition you my biggest problem right now is the last time i lost all hope is when i went to see a Doctor and the told me that there is no doctor for my condition in my country😥and i cannot afford to seek help else where.
Thank you for sharing this Angie. I have the same thing but no surgery yet--though based on the pain I'm having I suspect I will need to. It's either on the nerve of my vocal cord, digestion, right arm or eyesight. Very cool of you to make this video. You are beautiful and while you probably notice your eyelid a lot I didn't notice til you pointed it out. It sounds like it was super successful!
Thank you so much for posting this! I just found out recently that I have a schwannoma growing on my vagus nerve and will need to have surgery to remove it in a few weeks. I am still extremely nervous since I have never had major surgery before, but this video has given me some peace of mind. Thank you for sharing your story and recovery! It means a lot :)
@@maip2005 I am doing well! When I went in for surgery, they saw that the tumor was actually wrapped around my vagus nerve and connected to a cervical nerve. My voice was a little horse for the first few months after, but since they did not have to fully remove my vagus nerve, my voice fully recovered! However, my left eye does droop a bit now. I am almost a year post op and no real significant recovery from that eye, so I may get it looked at and fixed. Hope this helps!
@@jenjey7781 my surgery went so so well! I was never in any pain post op, but I did have some discomfort for a few weeks. Once the nerves in my neck started to "wake up" post opt, it felt like the side of my face was on fire or badly sun burnt. I would ice it to help and take over the counter pain meds. Besides that, my scar is healing so well! When I went in for surgery, they saw that the tumor was actually wrapped around my vagus nerve and connected to a cervical nerve. My voice was a little horse for the first few months after, but since they did not have to fully remove my vagus nerve, my voice fully recovered! However, my left eye does droop a bit now. I am almost a year post op and no real significant recovery from that eye, so I may get it looked at and fixed. Hope this helps!
Zoe- Did the surgeon use any special surgical technique to save your nerve? Mine is on the vagus nerve. It appears that a technique called intracapsular enucleation May help save the nerve?
Thanks so much for watching☺️ Unfortunately, there isn’t. But I’m no expert so who knows! I know the only thing that can be fixed is the droopy eyelid. There are surgeries to fix the droopy eyelid and even it out with the other eye.
Hi! If I’m not mistaken, I think you commented on here saying you had the procedure done on your eye, but then deleted it a while back. I wanted to ask how that went and if your eye looks about the same again? I’m really debating if I should have it done. (If I’m wrong then please ignore this comment😅)
@@AngieJeanelle Oh, don't worry i did comment before. Sorry im a bit insecure about these types of things. But yeah i did have an operation when i was around 3 years old but it was to lift up my eyelid (because my eyelid was closed). I still have the symptoms such as half closed eyelid, small pupil, different eye colours, sweating on one side of my face. Im just sad people look at me differently, idk im waffling lol
Of course it is! This doesn’t make you any less different than anyone else. Sure, Horner’s syndrome might not be the most normal but YOU ARE 100% normal and are still able to do everything anyone else can. Don’t ever let the way anyone looks at you change that.💛
I had exactly the same thing. I had it removed in 2019. I have horners syndrome too as result. No sweat on the right, pain in my jaw sometimes when o chew and a little eye lol gotta keep it pushing though!!!! Thanks for sharing your story with us
If you're dealing with the droopy eye lid, try an eye drop called Upneeq. It's a temporary fix, take 10 mins to kick in, and it last about 7 hours. Hope this helps.
@@tari80 I wish I could get Upneeq, but I can´t get it here in Germany! I found out by coincidence that Tetryzolin drops have the same effect, but only for 1-2 hours and you must not use it regularly, maybe one or two drops a week... But my eyes are so painful! I really wish I had Upneeq!
@Punki80 Hey du, ich habe Ende des Monats eine OP. Mein Tumor sitzt um den Nerv meines Rückenmarks. Mein Chirurg hat Horners nie erwähnt.. Jetzt hab ich ziemlich Angst davor. Ist es besser geworden mit deinem Auge?