My pain would come and go. I had it over 12 years and there were many periods of remission. The pain episodes would be gone for as long as 6-9 months and sometimes as short as a day.
When the episodes were happening it was sometimes horrific and constant other times sporadic and I could deal with it. Over the years I learned coping mechanisms, but it was a really awful thing to deal with. I am so glad I had the surgery and haven’t felt that horrific pain in over a year.
I forgot to say how it felt…like I was being stabbed in the throat with a knife and stabbed in my ear with an ice pick…horrible.
When you had pain how many weeks or months would it last? I'm not certain I have GPN because mine has been constant for 8 months. Every single day, my tongue, ear, molar tooth hurt and its very painful. My tongue burns and hurts in the base of the tongue. It never lets up. Have you had this same kind of pain?
Laura said:
My pain would come and go. I had it over 12 years and there were many periods of remission. The pain episodes would be gone for as long as 6-9 months and sometimes as short as a day.
When the episodes were happening it was sometimes horrific and constant other times sporadic and I could deal with it. Over the years I learned coping mechanisms, but it was a really awful thing to deal with. I am so glad I had the surgery and haven't felt that horrific pain in over a year. I forgot to say how it felt...like I was being stabbed in the throat with a knife and stabbed in my ear with an ice pick...horrible.
That’s on mine feels like Portland with a pressure swollen lymph node feeling in my throat 13 years straight now it’s just bad and worse never has left since it started not even for a second
Even the tongue pain and tooth pain Deleone! Where does your tooth hurt? Mine is the back molar on affected side.
Deleone said:
That's on mine feels like Portland with a pressure swollen lymph node feeling in my throat 13 years straight now it's just bad and worse never has left since it started not even for a second
Deleone, does your tongue hurt? Mine hurts constantly in base of tongue and burns also. I can’t seem to find people on here who have a lot of tongue pain.
Hello Laura, I read this post of yours several Months ago. It was & is of great encouragement, so thank you! I went to see the Dr. Who did your procedure. I am Scheduled for my procedure in two weeks!!
Hello Jubilee! So glad to hear you are having the surgery. In my opinion it is the only thing that will really help/cure this disease. I am still totally pain free after over a year and have no complications at all.
Where are you having your surgery? I have been wondering where Dr Horowitz was practicing now. Shortly after my surgery I got a letter saying he would no longer be at UPMC. Is he at the Mayo now? I wish you luck and feel that you are in great hands!
Hello Laura! I am really Glad that you are still pain free!!! Happy to see that you have your life back:)
I Did find Dr. Horowitz after reading your blog a few times.. He is still practicing in PA at the Butler Memorial Hospital. He said that He really likes the facility. I am very Thankful that you posted about your procedure. I have found that Dr. Horowitz is a good fit for me as a surgeon as well. I am extremely nervous, but hopeful at the same time. Praying that He will find something in there pressing on a nerve! LOL! Also wanting to wake up with hearing, normal vision etc. I have had this pain originating in my left ear since Christmas. It has also gone into my throat and a bit into my tongue as well. I have seen several specialist with no definitive answers. So, this will be a Huge leap of FAITH! It is Worth it though if it helps. I was wondering about your first week after and such. If you have any pointers as what to bring, and suggestions of things that helped you feel better or pass time. Feel free to inbox me as well. I am not afraid of details about what happens. I just truly want to be as prepared as possible. Thanks again & God Bless you!!
Jubilee, I am so glad you found him! I have absolute faith in that man. I also was afraid that when they got in there they would nothing. I remember in recovery when I was told that they found 2 large vessels I felt so relieved.
I stayed 2 nights in the hospital after and then a week in a nearby hotel. I vomited in recovery once. On being brought to my hospital room I got off the stretcher and walked to my bed and asked that they please remove the foley cath, which they did. I was hyped up because the procedure was over, they found the cause and fixed it, they pain I had felt for years was clearly gone, I was alive, and fully functioning! However, I began to feel a little rough soon after. I became extremely tired and the left side of my head felt like it was under water. My hearing was very muffled. I didn’t want to open my eyes, but did as needed. I would walk into the bathroom, but didn’t do much else. I couldn’t look at the tv or my phone until the next day. The stimulation bothered me or something. I had a rough time sleeping and did vomit once the first night. I was kept connected to the heart monitor and it beeped non-stop. I couldn’t move well to reposition and I would feel super hot…then I would move slightly and would feel super cold and shiver like crazy. This had to do with swelling on the brain stem and went away after 2 days. The head under water thing lasted about a month. This was all mild and nothing compared to the horrific pain I endured for years. I know everyone is different and you will probably have a different set of issues, but in the end I am absolutely fine. I can feel the plate in my head when I touch that area…it not bad though. Please feel free to call me. 315-■■■■■■■■. Leave a message if I don’t answer and some times that are good to call you. You can text me also. Oh and please tell Dr Horowitz hello. I know he is a busy man and probably wouldn’t remember me, but he saved my life and he should know that.
Laura, Thank you so Much for everything!! If you do not mind, I really would like to give you a call sometime. I will send a txt or something to give you a heads up to find a good time to chat for a few minutes:) Talk to you Soon, JULIE aka Jubilee.. My are code is 248.. So if ya see a number like that, its Me!
HI, so glad u r out of pain. I was wondering if u had any problems with your voice after your surgery other than the expected voice problems. I ask b/c I'm a singer and I've heard some say that the surgery can really mess up your voice. Just wondering. Thanks
Happy to hear you are doing well, and the surgery has succeeded.
I saw Dr. Fukushima in Raleigh for GPN the day you had your surgery, and he looked my MRI and said "see that? It's a big looping PICA which is causing your problem". I scheduled my surgery for October 25 at Duke Raleigh hospital. I had an attack in his office at the end of the consult. My pain Doctor had started me on Tegretol, and it has helped but I have this off and on for 6 years, and it comes and goes, this time for more than 5 months. I am ready to try something which might get me off of these meds, so I can go on with my life.
Thank you for providing some hope for those of us who are facing the same procedure.
First of all, I'm very happy for Laura and the success of her surgery. Secondly, for Vicdoc, I wanted to add a few encouraging words.I know as the surgery date approaches things can get a little nerve wracking. Dr. Fukushima and Dr. Zomoradi did my MVD at Duke Medical Center back the first part of May. I woke up pain free for the first time in 5 years. Needless to say I was very pleased. I had a few complications but all in all everything went OK. Good luck to you. You are in good hands.
One of my symptoms was that the left side of my tongue was numb. It was actually one of the symptoms that triggered my second neurologist to be able to make the proper diagnosis. I often had a sore throat on that slide as well. My tongue never burned through. MVD surgery resolved that along with my other symptoms.
portland72 said:
Deleone, does your tongue hurt? Mine hurts constantly in base of tongue and burns also. I can't seem to find people on here who have a lot of tongue pain.
Hello LAURA, SO GLAD I HAVE JUST SEEN YOUR POST. I LIVE IN ENGLAND . HAVE HAD A Diagnosis of glosso. Neuralgia FOE 2 YEARS AND BEEN ON TEGRETOL FOR MOST OF THAT TIME. THE MEDS ARE REALLY HARMUNG ME in many ways. THE TEGRETOL HAS REDUCED MY SODIUM LEVELS SO MUCH I WAS VOMITING, CONFUSED , COUKD NOT WALK OR BALANCE PROPERLY PLUS THE GN PAINS HAD RETURNED SO IT WAS awful and still is as my sodium levels are still. Dry low. A few weeks ago I ADMITTED AS AN EMERGENCY INTO ENLANDS LARGEST NEuralogical HOSPITAL in queens square. They DID A CT SCAN AND MRI. TOLD ME I HAVE ELONGATED STYLOIDS Both sides OF MY NECK PLUS BLOOD VESSEL COMPRESSION ON MY GLOSSO. NERVE. They told me THEY COUKD NOT DO Any of the surgery required to rectify matters as none of their surgeons had any experience if doing MVDs for glosso. Neuralgia. AAlso none had any experience of shortening styloids. So it would be too dangerous for them and me to do any of this surgery in me. WHAT A NIGHT IT WASAND STILL ID. I HAVE MANAGED TO FUND AN EAR, NOSE AND THROAT SURGEON WHO MAY BE ABLE TO SHORTEN MY STYLOIDS .I HOPE TO SEE HIM NEXT WEEK. BUT I HAVE FOUND NO ONE WHO CAN DO AN MVD FOR GLOSSO. NEURALGIA. SO PLEASE CAN YOU HELP ME MORE LAURA OR ANYONE ELSE ON THIS SITE. I. WOULD ADD ONE OF THE PROFESSORS AT THIS HOSPITAL TOLD ME ONLY ONE ONE MVD HAD EVER BEEN PERFORMED IN THE USA FOR GN AND THAT WAS UNSUCCESSFUL. THANK GOD FOR THIS SITE AS I CAN NOW SEE SHE WAS WRONG . All they did was to put me on another form of TEGRETOL. TEGRETOL retard, the slow release stuff Si i am desperately searching for an experienced surgeon to do an M D FOR ME . GOING TO THE USMAKES SENSE. HOPE I CAN AFFORD IT. SO I AM PRETTY DESPERATE FOR HELP NOW. Please could you also send me your email number. I will be SO PLEASES TOHEARFROM ANYONE WHO CAN GIVE ME ANY INFO OR ADVICE ON THIS WEBSITE. XXXX
SO SORRY FOR ALL THE SPELLING MISTAKES AND BADLY DRAFTED REPLY ABOVE. I COULD HARDLY SEE THE TEXT IN THE REPLY BOX AS IT WAS SO FADED ON MY IPAD MINI AND WANTED TO REPLY TO TRY TO GET SOME HELP AND FEARED IF I DID NOT DO SO QUICKLY I WOULD NOT BE ABLE TO REACH THIS PART OF THE WEBSITE AGAIN. SO MANY APOLOGIES TO ALL. I DO NOT WRITE OR SPEAK LIKE THAT IN REAL LIFE ! FROM SANDY, THE POST ABOVE
Hello Sandy!!! I will try to call you, but cannot today. I hope you can come to the US for surgery. I highly recommend UPMC in Pittsburgh Pennsylvania. I know they can set up consults and surgery in the same week for people that travel to them.