Just wanted to say hi to everyone I know some of you probably have seen my youtube video ,I know that because the constant hours I spent online looking for any kind of answers ,unfortunately for me I was misdiagnoised My brain surgeon went as far as printing up part of my Mri to show me were the compression was but if you watch my surgery there was no compression he just removes scar tissue Just wanted to say stay strong and if your thinking of Mvd I wish you the best ,
great post!
How can you tell there was no compression?
Well If you search youtube and type In eagle syndrome ,glossopharyngeal neuralgia,mvd I started a little blog but which actually includes my surgery What I was told on from a brain mri is that I had a artery compressing my Glossopherngeal nerve but if you watch the video there is no artery there and was told by the surgeon that he didn't find what he was looking for he did remove a lot of scar tissue but you will see nothing compressing the nerve or lieing against it yet he still packs Teflon all around the Nerve im just kind of at a lost know and not sure what to do
Is your MVD help your GPN? I have a combo of GPN and geniculate neuralgia and they have said I do not have eagles. I have a horrible “lump” feeling in my throat but doc just says it’s nothing and it’s in my head. Most I my pain is located in my ears and around the outside of them, and occasionally in my tonsils and throat. Just taking meds right now but heading for a 5.5 hour drive to see dr. Stephen Griffith in Kansas City, mo. My cousin just had MVD for trigeminal neuralgia a few weeks ago from that doc and he feels great. My great grandfather also had tn, so it seems to run in our family althought thy say it’s not hereditary.
How did they check for eagles for you,is the lump right were your lymph nodes are mine feels like it’s under the corner of the jaw ,my ear feels slightly better but that’s it I wouldn’t do the surgery again for the results I got .
Do you ever experience tooth pain with your GPN? Especially lower molar pain?
It feels like part of it could be in my root of lower molar
Do you feel the pain in the base of your tongue? If so, what does it feel like? Is it painful?
Hi Deleone,
I did google MVD and found you post operation discussion (did this prior to seeing you on this Website. Actually recognized your face) Anyway, seeing how well you look like you were doing 8 days post surgery gave me comfort. I'm going in for MVD surgery on Wednesday and was a bit worried. I've been dealing with GPN for 10 years. Hope you are still doing well and are pain free.
Glad the video gave you some comfort I felt the same way ,you really want to see as much as you can before you go in good or bad yeah I finally just did a another update video unfourtuantly for me I was misdiagnosed and didn’t have Gpn I felt good in post opvideo but think it was the drugs Mvd didn’t do anything in fact if you watch the surgery video there was nothing compressing the glossopharyngeal nerve yet the Dr still put in the Teflon .Lawyers won’t take my case I guess malpractice is hard to sue for.
Good luck on Wensday though don’t mean to worry you but I had eagle syndrome and still had symptoms after they removed my styloid I told the Doc that brought in my ct but did ask him to check me for Gpn then he said yes you got it after he saw a compression on my Brain MRI that wasn’t there when he got in.
Hi Deleone,
I read your posts and even watched the youtube videos. I want to thank you for taking the time to share your story. It actually brought back the worst memories for me and I actually cried for you. I'm so sorry you are struggling with this kind of illness, well an illness that no one seems to know anything about. I guess your story also touched me because Dr. Duma was my doctor and he is my godsend. I was diagnosed finally and you can look under my name "lee" for my story/posts & detail. But Dr. Duma was my doctor and I am pain free/medication free. I thought he was absolutely incredible and I met at least 3 other brain surgeons.
Anyway, Your symptoms are very different that what I've ever read as far as Glosso.
I really hope you find the correct diagnosis and get your life back.
I'm available to talk anytime 714/■■■■■■■■ or ■■■■■■■■■■■■■■■■■
Take Care
Cyndy
Just wanted to say that your Youtube video helped me a lot…just diagnosed recently with gpn.I swore up and down the neurologist was NOT the person I needed to see when my ENT referred me there after my tonsillectomy didn’t help.but it turns out that was who I needed to be seen by.I’ve only been dealing with this for 6months, but I feel it gnawing away at me already.the part in your video where you talk about how its affected your mood and how you feel all that pain has changed you, helped me to know that I wasn’t the only one feeling this way.I’m sorry to hear that your surgery did not alleviate your symptoms much.I hope you find your answer and also treatment. Much luck. Take care.
Thanks Lee and Cassi,Yeah I really liked Dr Duma even though he saw a compression in my MRI that wasn’t there I wish he spent a little more time going over my Ct with my styloid process in but as far as how well my surgery went and him as a person I would recommend him sounds a little weird since he misdiagnosed me,And Cassi what are the Neuroligist telling you and giving you?Ive been living with a sore throat so long now it’s my new normal lol I do feel its kind of a mental game now people around us don’t know are daily struggle and it’s easy to get frustrated at them or are own situation not to sure what I might do next saw a pain management place they just gave me tramadol and lyrica which I didn’t care for and stopped taking I’m thinking of taking anti anxiety pills it’s tuff knowing I’m not gonna wake up feeling 100% ever again Thanks though really glad my video brought some comfort like Ben Munez said we shouldn’t have to go through this alone
Good Morning Deleone,
Just curious, were you ever prescribed Tegretol? That is the number one medicine prescribed to treat Glosso. Have you been back online to try and find support with another diagnosis? Glosso just doesn't seem like the correct one.
I believe anti-anxiety could definitely help. Just don't abuse them and be sure to start with low doses as they can be addictive. I did take them for approx. 3 months and it really seemed to help.
Good Luck! ONE DAY AT A TIME
Cyndy
I’m just in the very beginning of everything, so she started me on amitriptyline and was going to do Gabapentin, but I’m extremely nauseous all the time, so she decided against that one for now. I actually have an appointment today for a med check. One of my main concerns is that I’m severely off balance, which I didn’t see as being a symptom of GPN. I know my struggle with doctors isn’t anything compared to all of the years you’ve went through it, but man, what a battle! I’m a veteran, so my healthcare is through the VA, and all but two doctors there have been acting like I’m faking it. The ENT doc kept telling me that all this pain was from my tonsillectomy, even though just before they said this they told me I had healed the fastest they’ve ever seen! And mind you, this was 7weeks post op.lol.I was wondering what meds you’ve tried and some of the side effects you experienced with them…hope you have a good day that is at least tolerable!
Hi Cassi,
Have you actually been diagnosed with Glosso? What symptoms are you experiencing?
Take Care Lee
Yes I have been, just recently. I’ve had it for about 6months now. My symptoms are on my left side …clogged sensation in my ear along with constant pain and random severe stabbing pain, tonsil area pain, back left side of tongue feels like ice is on it all the time, lose my voice when talking, hurts to talk, laugh, sneeze, swallow,cough, cold things are not tolerable to eat/drink, lymphnoid-like pain in jaw line under tonsil, pain radiating to my shoulder and collarbone, irritating cough,migraines, can’t stand breathing in cool air, having wind in my ear.I have several attacks per day that only last for a few mins, but they are getting longer and more frequent. Also have the bradycardia during attacks
Hi Cassi,
I'm so sorry to hear about your pain. I can only relate to part of your symptoms though. I couldn't not talk, swallow, sneeze, cough or laugh either but no jaw pain, headaches or shoulder pain. Have you been prescribed Tegretol yet? I tried numerous medications and that was the only one that worked. When it stopped working or the dose got too high is when I opted for the MVD surgery. I know the pain your feeling is horrific and I can relate to doctors thinking we are faking too. I went to numerous Emergency rooms only to be sent home with pain medication, which does not work for this illness.
Good Luck with future appointments. Do not do anything to inflame the nerve even more. I use to whisper or write things down on a pad of paper. Swallow slowly and don't drink anything to hot or cold.
I'm here if you ever need to talk/when you can talk :-( 714/■■■■■■■■
One day at a time
Cyndy