It has been 1 1/2 years since first MVD surgery and 1 year since second (attempted to correct problems from first). Will I ever be "normal" again? I still have a multitude of problems in addition to the deafness and facial paralysis on right side of face (now head) which were a result of original surgery performed 6-2007. Facial pain (similar but not the same as pre-op) on rt side, pain at and around surgical sight, sensations vary throughoout scalp, temple, forehead (all rt-side), pain & inflammation also runs down neck, rt shoulder and even back, etc.
I guess my question is...What now? My PCP treats pain, ear infections(at least 1/2 dozen since surgery-never had one in my life before 6-2007) and listens to my, what seems to be endless, list of complaints. My ENT concluded that all my symptoms are related to nerve injury/damage most likely caused by surgeries. He suggested to give it a year/year and a half to see if there would be some "reorganization of her neuropathway system" to relieve some of the symptoms before entertaining another procedure such as a facial muscle sling to improve appearance of facial paralysis (cosmetic surgery was suggested by surgeon the last time I was able to get a call returned).
This is the thing...I am used to looking at my face in the mirror now! I could live with the right side facial paralysis, I just wish I was warned about the drooling, having to drink out of a straw all the time, my right eye runs or tears up for no reason, yet if I go to have real cry tears only flow from one eye, and yes, I have a 'crooked' smile (only the left side will turn up), I have to wear my glasses all the time because the right eyelid doesn't close properly to hydrate contact lens and I forgot to mention skin problems (sores,lesions that never heal completely) that appear to be caused by nerve inflammation/problems in that they run along nerve(s), they are around and above right ear and along right jaw-line...I can live with all that but back to my point...WHAT ABOUT THE PAIN?...The only time I get any sort of relief is when I am laying down!
Is there an unlying problem or is this just how it is going to be? I had went to the ER locally (per out-of-state surgeon) right after returning home from the second surgery because of watery drainage in right ear, back of throat and nose. At that time the out-of-state surgeon thought I might have a cerebral spinal fluid leak but after he spoke to local ER Dr., I was sent home. Could this be the ongoing problem? I have constant drainage down back of throat that never clears up even when on antibiotics (which I seem to need to get back on as soon as I am off of them because ear infection and/or bronchitis reappears).
But 'what about the pain'? I know hundreds of thousands of people have chronic pain and I am sorry for that, but wasn't that the reason for my surgery? I had the surgery(ies) to alleviate the chronic pain of Trigeminal Neuralgia. I had already lived with it not knowing what it was. I had been to dentists, endodontists, periodontists and oral surgeons receiving treatment for dental pain without success, not one of them suggesting I could have neuralgia. I was just treated and retreated and then basically told that the pain couldn't be there and I just wanted meds. I finally got a correct diagnosis years later and we tried to manage pain with meds. After little to no change, surgery was suggested as an option. I had missed so much work and so much life that I, along with my Neurologist, agreed this was the best option at this point. I didn't have the surgery for another six months as I continued to go back and forth in my mind with this choice. I would have to go out of state for several days, there was the financial thing, transportation, the house, the dog, the fear, etc. and TN was not life threatening. When I did finally go it was because I couldn't take it anymore. I had the surgery unfortunately without desired results.
So my question is...'What about the 'PAIN' ? I do not want to be on pains meds! that was a good part of the reason I opted for surgery, I did not want to have to have meds to rid the pain. But now I have a different kind of pain, still chronic, and a lot of other problems that came along with it.
Is there any thing I can do? and if it is just a matter of healing time, do you have a guesstimate of how long? I guess I thought when healing occurs you see improvement like decrease in pain, increase in movement, etc. I see none. If I have to live with it, how do I live with it (I'm only 43 and today I hope to have a lot of yrs left although I don't feel like that too often). If there is another problem, what can I do, where do I go now, who do I see?
Please, if you have any info that would help, let me know? Thanks for listening and responding. j
I just read your post and I want to wish you the best with your circumstances. I had MVD surgery in June 2008 for Glossopharyngeal Neuralgia. I was diagnosed two years ago and was on pain medication until the pain got to the 'no return' point. I then opted for the surgery. I wanted to ask where you had your surgery? I had mine done at Allegheny General Hospital in Pittsburgh PA. It has been successful in that I don't have any throat pain. I have stiffness and tightness where the incision is and I feel it more so in the cold weather. I have been fortunate that everything is going well at the moment.
I just wanted to let you know that I am willing to talk to you about how you are feeling. If you’d like to talk, you can reach me at elantra2006.
Thank you for taking the time to read and respond to my letter. I am not familiar with the disorder you have, however, I am familiar with the pain we both share. Like you, I opted for surgery after pain meds wouldn't cut it. And, I too, had my surgeries (June '07 & Oct.'07) at Allegheny GH. I'm happy to hear about your outcome. :) The cold seems to intensify the symptoms with me, also. I had to get in the habit of wearing a hat and scarf whenever I go out. I got over the pride thing of not wanting to mess up my hair or leaving my coat unzipped. Ahh, to be young again, ha ha. I just continue to struggle with pain and no one seems to have any idea when, or if, relief will come. Thanks again for your support, I don't feel all alone anymore. I hope to hear from you again soon.
I would like to know who did your surgery? The disorder I have has to do with the nineth cranial nerve being compressed by a blood vessel. Actually the doctor said that my 9th & 10 cranial nerves were being compressed. It is somewhat like TN but it affects the throat, inner ear and the like. I thought I just had a normal sore throat and it went away then came back and after dealing with the PCP for several weeks asked to be sent to an ENT. Fortunately the ENT diagnosed the situation right away although I thought neuralgia was a way of saying "we don't know what is wrong". Upon doing research on the Internet I found that it was a true disorder, rare indeed. After dealing with the ENT and on medication for a year, the pain became intensified and he told me that he couldn't do anymore for me and sent me to AGH to the neurosurgeons. They wanted to do MVD right away and I said "no", I wasn't ready so they upped the medication and I was good again with brief pain breakthroughs for another year then the pain started again and they put me on another medication also. The combination made me sick so I finally said 'enough' and opted for the surgery. Like I said before, so far so good for me to this point. The stiffness & tightness hopefully will subside but I think it is going to be one of the outcomes of sugery. I will have to opt for a hat and scarf and say the heck with the hair-do also...just haven't made it that far yet.
Anytime you want to talk, I'll be here...it does us good to have someone that can relate to what we are going through. Good luck to you and I hope you find relief fast. And remember you ARE NOT ALONE!
Do you know how I can be notified when you send me a note? I had a few notices come to my e-mail address to let me know someone wanted to talk but I can't remember how that happened?
I only have a minute but I wanted to send a quick note for now. About notification...MedHelp automatically sends me an e-mail wenever there are new postings with communtities I have joined. I'm guessing it was probably a default setting when I sent first posting, I had enough trouble bringing myself to send something let alone choose options. I've been out of the work force for few years now (due to this neuralgia stuff) and you could say I'm a little bit behind in computer skills (try in the 90's :) ha ha!).
Back to the question...I believe there is a box in upper right hand area of Log In screen that says "Watch Discussion" and if designated a notification will be generated automatically whenever there are new postings. I am not sure how often it updates new activity, I don't think it is immediate. Remember, I could be wrong about the whole thing but it is worth the try.
I have so many things I'd like to talk to you about, here are just a few of many questions.
Are you from Pittsburgh area &/or how far did you have to travel to get there?
How old are you? I ask only because from what I've been told, most people who suffer w/this are older (60-70 yrs+). I am 43 now (don't tell anyone) and dealt with 5,6,7? years before actually being diagnosed (nobody really knows when onset occurred) and about 3 years since.
Who performed your surgery and how long were you in hospital? I'm not trying to be nosy, I am just happy someone else can understand where I'm coming from.
What kind of time frame for healing are you anticipating?
Do you still experience the type of pain that led to surgery? and if so, has it at least been relieved in some measure?
Couple facts about my situation...mine all began with dental pain, which led to extensive dental work to no avail. I was eventually labeled as having "drug-seeking" behavior by the dental professionals involved. Not one of them ever suggested neuralgia or the possibilty of my problem being something other than dental. I do have resentment that stills rears it's ugly head. I never used to where a hat, scarf or earmuffs because I did not want to mess up my hair or makeup...I do now. I realized that the lyrics from the song "Love Will Keep Us Together" (you're probably too young to have heard of that song) are true..."someday, your looks will be gone". I hope mine aren't gone, just on hold :). This is when phrases like..."beauty is on the inside" and "beauty is in the eye of the beholder" come in handy.
Well, gotta run. Have a great day! Thanks for listening and for your support.
So happy to hear from you. I think this is going to be my salvation talking to people with the same types of situations.
I checked my account settings and I do get an update daily for the communities I'm in but I thought there was an e-mail sent if someone spoke to you. I could be wrong. Maybe you have to post differently.
I will be happy to talk with you in any form you'd like. I could give you my phone number as well as my personal e-mail address if you'd like.
No, I'm not from Pittsburgh. I live in Prospect PA about 40+ miles north of Pittsburgh. My ENT that diagnosed me with glosspharyngeal neuralgia referred me to AGH's neursurgeon, Dr. Peter Jannetta and his associate Dr. Raymond Sekula. I am not ashamed to say that I am 48. When diagnosed, I was 46. In my disorder it hits people age 40 and older.
Your diagnosis took a lot longer than mine. I was diagnosed within months after I quit playing around with my PCP. I finally told them to send me to an ENT and during the first visit, he diagnosed me. I was under his care on medication for a year with breakthrough pain now and again. Then the pain became worse and he said he couldn't do anything more for me and referred me to AGH. I truly am thankful for him and his quick diagnosis. My mother-in-law suffers from TN and it took well over a year for her to be diagnosed.
Again, you are not being nosy...how else do you learn from each other? Dr. Peter Jannetta and Dr. Raymond Sekula (AGH) did my surgery. I had it done on a Friday June 13, and came home Sunday June 15. The first week was hell but every day got better. I talked to Anne the nurse and she told me I had to give myself time as I thought I was going to have surgery on Friday and be out driving Sunday. It didn't happen like that. I had a hard time swallowing for a few days and my voice was gone (not myself) for about three weeks. I had been off work for five weeks including the week of prep for the surgery. I am fortunate to work for a small family business that was behind me 100%.
I feel I am doing very well. I am not on any pain medication and haven't been since the surgery. I was so sick to my stomach for several days that I didn't take the medication so I thought 'why would I start it again just to wean myself off'. I have only the stiffness and tightness where my incision is behind my left ear. Seems to be worse in this cold weather.
No, I have had no pain that orginally led me to the surgery, at least for now. I'm always on the lookout for it though.
Oh hey there girlfriend, I remember the song "Love will keep us together"! You know the older I get, it is very true that 'beauty is in the eye of the beholder' and REAL beauty comes from within.
I am so happy to talk to you and can't wait to chat again. And thank you for being there also!
Thank you for writing again, you do not know how good it is to talk to someone who understands and has experienced the same thing. I'm sure my family and friends tire of me talking about med-related concerns although they would never say so. They been so good to me. I want so much to talk and laugh about normal things but it seems I always gravitate to how I'm feeling that day. It it very selfish of me, but I always end up trying to explain away my behavior (lack of energy, unsteadiness, isolation, lying down &/or napping a lot, etc.), although no one ever questions it or has judged me. I have a great sense of worthlessness because I know in my mind that I still have potential and goals and someday could be a blessing but right now my body is not cooperating very well. Wow, my eyes just teared up just typing that even though I'm in good spirits today.
I am told that mine is a "unique and unfortunate" situation so please understand, I'm not trying to cause you worry that you might have any of these complications. Your surgery was a SUCCESS :) and an awesome testimony of what gifted surgeons coupled with technology can achieve. Your original pain is gone and the tightness and stiffness you are experiencing now will fade away in time.
I was made aware of the risks involved with this type of surgery, but, by the time I had gotten this far, I was willing to take those risks. I felt this was my last hope because I was not sure I could take another day of the pain I was experiencing at that time. I will say that I did not really have a concept of all that went along with the post-surgery problems that I was warned of. Everything I am experiencing is on the right side only where the pain originated. I now have right-side facial paralysis but I didn't think about what comes with that...occassional drooling, lack of facial expression on right side, continuous tingling of cheek, jaw and temple (feels like a few too many novacaine shots) which is strange in that I don't have other feeling on that side, I cannot blink or close my right eye properly so I can't wear contact lenses (I am very near-sighted so now I wear my glasses all the time) and although I cannot cry real tears that eye willl tear up with any kind of stimulation like when I eat spicy food, drink something hot or even sometimes when I brush my teeth. These are mostly inconveniences that I have long since adjusted to. The deafness in right ear is more difficult to accept, I'm told it is most likely permanent, but have not accepted that verdict. I believe anything has a chance to heal, it may not occur in the time-frame we'd like, but I choose to believe this is a temporary impairment. The tough part is that there is a constant, never ceasing whistle-like buzz in that ear. I thought deaf meant deaf, nothing, null, notta, zip but I was wrong. I also thought a hearing-aid was an option but I'm told that with complete hearing loss it is not. I've gotten adjusted to this also. I think the hard part is that I used to sing and play the piano for church and at home for my own peace of mind, I had just started recording some original songs on a CD ( had completed 2 of them) prior to the surgery but have put that project on hold. I could still get by without the hearing, but my equilibrium is messed up - vibration from drums or piano or even the bass from speakers in a car passing by aggravate things and I can lose my balance, have vertigo and usually get a headache and what I call a "bobble-head" feeling (I liken it to those bobble-head dolls you see on dashboards). These problems are temporary and usually go away with in hour or so. You also said that you had trouble swallowing after surgery, I did too. Mine has gotten better but I still have trouble. I told you I used to sing...I still can but now I can only make it through one song and by the end I'm a little jacked up. I don't know why, but I do not have the capacity the sustain notes like before and by the end I must lay down. Actually, my dad said that my singing is better than pre-surgery (I think he is just being nice :)) Having my voice and hearing are definately not a necessity, it did not put food on my table, bit I am finding out now that it played an important part of who I am and I truly loved that part of me even if it was just for me.
Enough of that, I just want the pain to be gone. That is why I had the surgery originally, and that is what led me to this web-site and the blessing of meeting you. I don't want to blow it by constantly whining and trying to get you to join in on my pity-party. So I look a little funny, I don't notice if I don't look in the mirror, ha ha. This is a challenge for me - if you only knew how self-conscious I used to be before. I only ask for a somewhat productive life where I am not a burden 'cause that's how I feel most of the time, like I'm just taking up space. Enough, enough, no more self-pity, right now anyway!
Dr. Janetta performed my surgery, too, and Dr. Sekula assisted. Small-world. They were great, Anne was great, the whole hospital staff were good, also. I stayed longer than originally planned. I was in ICU for 4 days and in a regular room 1 more before being released. My parents and I then had to stay another week at a local hotel before I was okayed to make the trip home to Michigan. It was quite a bit different than what I had envisioned, the DVD and info I got prior led me to think I would be walking around the next day. My second trip in November was a little better. Same surgeons but no ICU, and only 2-day hospital stay. Originally, the 5th & 7th nerve were the target, but they ended up doing more extensive surgery involving 8, 9, 10 and 11, I think. My parents were told my veins, blood vessels, arteries and nerves were entangled like spaghetti, Dr. Janetta even penciled a little picture for them on some scrap paper. I'm keeping it for sentimental reasons ha ha. This may be why a second surgery was necessary, who knows. Now I need to revamp my life seeing everything has changed. It is kind of like being given a blank slate and I can design my life now and make it whatever I want, I just have different factors to work in. It is all in how I choose to look at things.
Enough (I must have said that a coulple of times already), enough of all that.
I am so glad you are doing so well. Maybe, between the two of us and all the others that have or had neuralgia, we can make sure people know and are educated about the disorder. Thus eliminating the time between on-set and diagnosis, mis-diagnosis and not seeking medical treatment at all because of never hearing of the problem. I also hope the dental community will realize that all toothaches are not caused by dental reasons. They may begin to listen closer and develop an open-mind to other things. I hate even thinking about another individual labelled as having "drug-seeking" behavior and being passed around from professional to professional like they're an inconvenince.
Moving on... I would love to visit Pennsylvania some day, what I saw of it was sooo beautiful and there is so much history. Someday.. and definately not for medical reason :) ! Thanks again for being there for me, I look forward to hearing from you again.
It is just me again. I do not want to bug you but I wondered if you would humor me and listen to a song I recorded only a few months prior to my first surgery (June 2007).
The video was made recently in my parent's living room but my CD was played and I just sang along with it because I can't do the song justice yet. It is me singing but you might want to close your eyes or look away from the screen and just listen because my face is a goofy looking. Please keep and open mind if you do listen to it. I made recorded the song basically for my self that was actually completed from start to finish. I wrote the lyrics, along with melody and basic chord structure and a nephew in Detroit of a good friend did the instument arrangement/accompaniment and recording. His name is Mark Dixon.
If interested, you can find it on YouTube. Just look for "You Have Gathered In His Holy Place" in a search in the video category. The song is really entitled "Holy Spirit Come" but my cousins that posted it used other title. I had no idea it would ever go on YouTube or I would have probably chickened out.
I am not sure of your religious background/beliefs, I only want to have you check out the song because music used to be so important to me. I am not trying to push anything on you and have no other motive than have you see who it is you are talking to.
Yes you can, I would add you too except I am sort of internet challenged. I only posted something for the first time in my life in the last few days after checking out a few sites from a google search. You are the first and only person I've ever actually connected to. I may navigate around and educate myself a little some day. Right now I am not venturing out because the very first time I tried to respond to you, after typing a nice letter free of typos, I hit something-I don't know what button-and the whole letter vanished and I had to start over from scratch. Honestly, I was hesitant to try to send the new one because I thought might have sent the first by accident. I was afraid I'd look silly if you had gotten one and then another with the same stuff in it. I trust you didn't get two back to back?
Did you notice that "to make it long story short" is foreign to me..ha ha.
Side note..I didn't edit the last note I sent, please forgive the mistakes/typos, I obviously neglected to proofread :)
I just had to check this site. I am so excited to have someone to talk to. Like you, my friends and family are wonderful but are probably tired of me talking about the surgery and other issues. As for the type o's...they should have spell check!
I have tried to add you as a friend and it doesn't seem to want to do it. I don't quite understand how this site works. I am not an expert with computers but 8 years ago I went to a small private computer school to learn about the computer and Microsoft programs. That is how I ended up with the job I have now.
Anyway, I just wanted to drop a short note. I have a full day: I have a dentist appointiment this morning and an oil change appointement this afternoon. I hope to be back home before the snow comes in. One thing about me is I am terrified to drive in the snow and ice but that is talk for another time. I haven't had a chance to go to 'you tube' yet but I will. If you think that maybe you would like to talk through regular e-mail, my e-mail address is: ***@****. I realize that everything you type on here can be seen by all.
I am getting back to you finally. I did a few chores that I usually do on Thursday’s because that is my day off. I am technically part-time at work. I work four days, 7 hours a day for a small family owned business in Butler PA. They are such sweet and caring people that I am happy to know. And they are very good to me.
Now to your posts. I feel the same; it is nice to have someone to talk to that has experienced the same things or almost the same things.
You will have to learn not to explain yourself. You feel the way you do and you are entitled to feel that way. Unless you walk in someone’s shoes, you do not understand how they feel or deal with the constant pain. I have several wonderful friends and family and like you, I feel they get tired of hearing the same things but are too kind to say very much. I am fortunate that I haven’t had to talk much about the situation lately. And I so wish the same for you. You should not feel worthless; you do have potential and maybe being on this site connecting with others with the same condition is where you are to be right now. I believe that God has us all where we should be at the present time. It is hard to think of us not being the vibrant, useful people we once were and it does a tremendous number on our self-esteem.
I do believe from what you’ve told me that you do have a unique situation. And you are not causing me worry. As far as I can tell so far my surgery was a success. I still wait for the pain to come when drinking or swallowing and most likely in time that will pass. As for the tightness and stiffness I have, if it follows me all the days of my life, it is a small price to pay to be pain free. I can adjust to it.
I too was told of a few risks with my surgery but when you are in pain, the pain out weigh the risks. I had done research on the surgery itself but there wasn’t much written on the recovery period and the doctors really don’t tell you much.
You seem to have dealt with and come to terms with the outcome of your surgery and I commend you for that. I don’t know if I could have done so if things went so wrong. Eventually I’m sure but not right away. The things you described are nuisances to say the least. Your attitude is wonderful and sometimes it is o.k. to feel sorry for what you use to have and don’t have anymore. I think the music is good for you, keep singing and playing the piano. It most likely is your salvation and will get you through the tough times. It is mind over matter so they say.
I know that my ailment led me to this website. I looked through several sites but this one I liked the best. Meeting you is a blessing also. People come into our lives for a reason and the reason in this case is to help one another where others might not understand. You said you look a little funny, don’t we all???
Lucky you, you got to watch a DVD, I had nothing to go on except what I learned on the Internet and the little they told me but I am a questioner and I ask A LOT of questions. I think sometimes the doctors don’t like me for that but it is MY body and I know it better than anyone. So if I want to know something they will tell me until I am satisfied! “(I will sometime tell you about my first meeting with Dr. Sekula.) I too thought I’d have surgery Friday and be driving on Sunday, WRONG! Dr. Sekula made a drawing for my husband and I still have it also…so crazy we keep stuff like that. You are so right, now you have to modify your life to suit you and I’m sure you will. You seem to have a good handle on it so far!
As I said earlier, that is why we were brought together on this site to help and educate others that maybe have nowhere to go. It is sad that you were labeled ‘drug seeking’. And that it took so long to be correctly diagnosed. I know my mother-in-law has TN and it took her well over a year to be accurately diagnosed. Luckily I was diagnosed right off by the ENT I was seeing. I recently wrote him a letter expressing my gratitude on how efficiently and promptly he diagnosed me so that I could find the treatment I needed. I thought it was important to let him know incase he had another patient with the same condition. I will tell anyone that if you are not happy with the doctor you choose then by all means move on. They work for you, not the other way around.
If you should ever come to PA you will have to look me up. That would be awesome! And I too am glad for you and want to hear from you again.
This is to your second post;,
I will listen to the ‘you tube’. Again, I have not had a chance but hope to tonight. As for my religious affiliation, I am Catholic but not practicing at the present time. That doesn’t mean I don’t believe but I’ve had some issues in the past that have led me away from the church. I will tell you about it sometime. The picture in my profile was taken in Montana in 2005. My husband and I celebrated our 25th anniversary with a trip to a working cattle ranch. It was something I’ve wanted to do for a long time. I am afraid of horses but love the creatures and my horse and I became friends by the end of the week we were there. It was a most amazing time.
I did not receive a duplicate letter…and you will soon learn that I LOVE to talk also so I don’t know what a short note is either!
Well, I’d like to send this off so I will close for now and until we chat again…take care of yourself and remember I’m here to chat with. Would you want to exchange phone numbers to talk in person? You are finally added as a friend! Awesome!!
I aonly have about 2 seconds but I wanted to thank you for responding again, it makes my day. I'll write back in detail sometime later today.
The song title is " We Have Gathered In His Holy Place",well that is the title my cousins put it under. There will be couple of minutes of introduction by Billie and Willy (cousins from out west) and then I will come on, lop-sided face and all. :)
Talk to you shortly and have a wonderful day.
P.S. Remember, keep an open mind and you might want to close your eyes. Ha Ha!
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