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MVD-post surgery daily diary
By posting this diary here, I hope it will continue to help as many people in this forum as it did in the old one.
MVD July 22/2005 Days 1,2 & 3 I go in and they do a cat scan and put these little electro tapes on my head in different spots..something about lining things up in the surgery. I speak to the anesthesiologist and he puts in an IV and makes me good and stoned. So far it's nice. I wake up in recovery with a small pressure bandage behind my ear covering the wound. They start grilling me on my name, the date, where I am etc. In the meantime the dr went out to speak to my husband and sister and told them there were 2 arteries on my trigeminal nerve and he put in several teflon pads to separate them from the nerve. As I wake up they put me in a step down unit which is like an ICU. I was no nauseous or dizzy at all. Maybe because the anesthesiologist gave me gravol in the anesthesic cocktail. The dr forgot to order pain meds for me and I really really needed them. Finally he called and they gave me morphine. It didnt really take away the pain but it took the edge off. The pain subsided within a few hours and I cut down the morphine. After 24 hrs they put me in my own room and I chose to cut down the morphine to tylenol #3 (codine). I stayed on that only through the next night and then went on 2 extra strength tylenol every 4 hours. My lower lip and half my tounge are numb and I have had 2 TN twinges since the surgery. They told me that was normal and it would take time for the nerve to heal as I have had TN for 13 years and they manipulated the nerve. It's interesting that the numb spot is exactly where the trigger point was. So I've cut down my tegretol form 1200mg to 800mg and will cut out a further 200mg every week until it's gone (hopefully). Sometimes I think I'm about to have a twinge but it doesnt happen. I never vomited as I read many others have. I was not dizzy except for the medications they had me on. I'm reletively pain free from the surgery except for a bit of soreness. Now I will keep my fingers crossed and hope that this surgery worked. It was a ***** to make the decision to finally have it and I went through **** up until the day of surgery but it was not that bad...so far. Obviously it has only been 3 days so I'm sure much can still happen but I'll take 1 day at a time and I'll keep you posted on my progress. Tomorrow I will try to wash my hair. They took the dressing off before I left the hospital. Day 4 after MVD surgery. I woke up and my eyes were swollen shut. I freaked when I looked in the mirror. I went to my family Doc this morning and she said that when ever someone has surgery and is intubated (as I was) they have to keep your eyeballs from drying out so they put gel, pads and tape over your eyes to keep them shut. It seems I had an allergic reaction to one of those products. I look like one of those people who you see on TV after they come out of face lift surgery!. Anyway the doc said cold compresses and antihistamine meds for 3 days or so and it will be gone. As far as the rest goes, I had a shower and washed my hair today. No problem there. No twinges so far today, not even a headache. I finally went to the bathroom (#2) today after 5 days. It was like giving birth. Enough said. As a matter of fact I'm rather bored. I guess that's a good thing. I'll keep you all posted as the days go on so anyone else thinking of having an MVD will know what to expect. |
Day 5 post MVD
Eyes still swollen but getting better. Woke up shakey though, don't know what that's about. I find that besides all the physical stuff happening, there is a lot of emotional stuff going on too. Every little pang I feel I think will be a TN twinge. I'm sitting on the edge of my nerves wondering if this thing worked. I'm also having a hard time adjusting to the numbness in the lower quarter of my face tonge and teeth. It feels weird. Looks like I'm about to develop a couple of really nice canker sores on that part of my lower lip too. Head pain in still there but not to bad. I hardley took any pain meds yesterday and today I took 2 Advils (Ibuprofen) at 5:30am and nothing since. It helps to keep busy and not think about myself 24/7. My husband took a digital picture of my incision yesterday so that I could get a really good look at it on the computer. It was a bit freaky to actually see the slice in my head. I have about 15 staples holding it closed. If anyone wants to see that pix I have no problem emailing to you. That's all the news for now. Day 6 post MVD Today I really feel a bit bitter. My eyes are almost back to normal. I got up and took a shower washed and blow dryed my hair (very carefully). Put on a bit of make up and went out for a walk with my husband and dog. I plan to go to Costco and out for dinner. (we'll see) but the way I feel now it can be done! The pain is minimal, there is a cold sore developing on my lower lip but other than that you'd never know I had a gash in the side of my head! My skin on my face is very dry. Very unusual. It is flakey especially on my chin where the numbness is. I've been moisturizing and we'll see how that goes. I wonder if the numbness is permanent or temporary. Only time (or my neurosurgeon who is on vacation) will tell! One Week after MVD This really seems to be a small turning point. Yesterday I was able to go out and have friends over for a bbq till 1:00 a.m. and not fall asleep or feel yucky. Of course I did none of the work, my husband did, but I was able to be part of the world again. It was also the first night I was able to sleep on my left side (the incision side) I've been missing that. Don't get me wrong, it is still sore and yesterday I started to feel the healing itch. I still get the odd feeling like I'm about to have a twinge but it hasn't come. Not even when I'm eating and that was a big problem for me, especially hot food. My skin is getting better slowly but still very dry and flakey. My eyes are not swollen anymore. My lower lip and half my tongue are still numb. I'm down to taking Advil maybe 3 times a day instead of every 4 hours. Tomorrow I will be cutting down my tegretol another 200mg. I will be taking 600 instead of the 800 I am taking now. I know the doctors would like me to go down faster but I'm afraid so I'm doing it my way which is 200 down every week. I started at 1200. Today I plan a manuicure, pedicure and dinner. Life is coming back slowly but surely! 11 days post MVD Today I had my staples removed. I was nervous but it took all of 1 minute and it was no big deal. Wasted energy on worrying. My incision is itchy and still a bit sore. I still have some pain in some areas where they screwed on that halo contraption. My numbness is getting better (I think). It's hard to tell, but I can feel my tongue now. I have reduced to 600 mg 3 days ago (originally was 1200mg). I am having some sort of sensation or twinge from time to time. It is nothing as strong as a TN pain but never the less it makes me nervous every time it happens (and it happened a few times today). I don't know if it is because the nerve is healing or because the numbness is going or because the reduction of meds is letting through some TN pain. I certainly hope it is not the latter. I still tire easy. After my staples were removed today I went to the local mall and tried on about 10 outfits. Then I came home and slept for a few hours. Shopping is hard work! |
2 weeks post MVD
Today is my 2 week MVD anniversary. I working on getting my strength back. Yesterday I walked a mile on my treadmill and today I walked the dog for 1/2 hour (alone). Up till now I havent ventured out by myself. I drove for the first time too. I went grocery shopping and carried the groceries and I have a doctors appointment this afternoon that I plan to drive to on my own as well. So on the recuperation side, things are moving well. My numbness is starting to go away slowly too. I can actually feel my bottom teeth slightly when I brush now. What I am not so happy about it I still get a twinge now and then. They are not nearly as strong as before the MVD but it scares me. Does that mean it didnt work for me? Is that the way the nerve feels when it regenerates? Is the nerve healing from all the years of TN? Should I continue reducing my meds even with the presence of twinges? I finally got hold of a neurosurgeon this morning as the dr that did my surgery is gone till mid Sept. He said he takes his patients of meds cold turkey after an MVD. My meds are only in half at this point (600 mg of tegretol) He said he wouldnt be concerned about the twinges for at least another month, that some people do have twinges. (sure, isnt it easy for him to say). I don't know what to do. I don't know if I should reduce further at this point. It's a lonely place inside my head right now. I guess I will have to take one day at a time in regards to the twinges. 3 weeks after MVD I'm just about fully recouperated now. My incision is closed and most of the scab has fallen off. It is no longer sore. I no longer have bad headaches. I don't tire so quickly either. I am down to 300 mg of Tegretol but I am not twinge free. I still get the odd twinge and it still freaks me out. Old habits die hard. Twinges have always freaked me out. I get a rush of adrenaline running through my body every time I have one. It's a really weird feeling. The twinges I get now are not what they used to be though. They are not the same intensity or duration. What is very nice is the heavy zombie state the tegretol causes has let up. I am no longer asleep on the couch at 5:30 in the evening. I used to walk around yawning and sleepy all the time on 1200 mg. Sometimes someone would talk to me and I would be staring right through them not really listening. Almost like sleeping with my eyes open. My friends are constantly refocusing me to listen when they speak. Fortunately they dont take offense. I stopped doing public speaking in the last year too. I write an advice column in a newspaper and am invited to speak to different groups from time to time. I found my mind was wondering in mid sentence sometimes and I was to embarrassed to continue. Maybe after I'm off Tegretol (if I can be) I will start speaking engagements again. Many things might change. I haven't flown in 13 years either. Maybe I can start travelling again too. It's almost like there is a light at the end of the tunnel. As long as the twinges don't get any worse I can handle this just fine. It's so hard to believe that this MVD is behind me now. It was so consuming for so long. TN engulfs your whole body and mind. It really is an affliction and a terrible imposition on life. My numbness is still there, however I am confident that with time that will be gone too. I feel much more than when I came out of surgery and am sure it will continue to regenerate. The areas where they screwed in the halo are no longer sore either. 1st day back at work after MVD Today was my first day back at work just a little over 3 weeks after surgery. I have an office job so there is no manual labour involved. Everyone was telling me that it is too early but I really do feel fine. I drove fine, worked fine, and left early on everyone's advice and you know what.....everyone was right. I was feeling just geat but when I got home I was crashed out on the couch and slept for a couple of hours. The dog woke me to eat otherwise I probably would have slept longer. I guess sometimes you have to listen to the people with the experience. I know my Dr. told me I could go to work after a couple of weeks and to tell you the truth I thought I could too but I stayed home the extra week just in case. I'm sure it's just a matter of gaining strength back. Today is the 5th day I've gone without a twinge. I am still on 300mg of Tegretol and will probably get more twinges once I stop all the meds which I plan to do on Thursday. 4 weeks post MVD Most of the physical recouperation is now over. Just a bit of soreness where the bone is still fusing and still a bit of numbness in the lower lip area. The big stuff is in my mind. I know this will be different for everyone but for me it is difficult to forget the pain of TN. Yesterday I stopped all Tegretol. However it was on my mind. Was the pain going to return? I put away my pill timer which I had been relying on for 13 years and there were no pills on my night table beside my bed. One thing I never realized was that Tegretol with all it's side affects was also a drug that kept me having very comfortable deep sleeps every night (and sometimes days too). Now with no Tegretol I was up till 4:00 a.m. tossing and turning, reading and watcing TV. Nothing helped. My mind was active and my body not tired. When I finally did fall asleep something weird happened. I had a terrible TN attack. I immediately woke up and after a few minutes I realized that I did not have an attack at all. I had a dream that I was having an attack and that was awful. It proved to me that the memories of TN are here to stay. They may have fixed the nerve but they can't fix the memory of the pain I felt for so many years. I guess only time will help fade the memories of the years of TN. 5 1/2 weeks since my MVD. I was feeling a bit tender around the base of my incision on Saturday evening and when I felt it, there was a small lump there. I'm not at all sure what that could be. My incision seems to be closed and healed. I wonder if it is an infection starting or maybe a swollen gland. I was about to go to the emergency dept. of the hospital I had the surgery in but then the thought of sitting there for hours ended that idea. I waited till Sunday evening and after I came back from a wedding I attended in the afternoon I called the after hours hotline for my medical centre and spoke to a RN (Registered Nurse). After asking me many questions, she didn't feel I had to go to emerg but that I should have it check by my doctor in the next 24 hours. So this morning I will call and hope to get an appointment today (not so easy here in Ontario). It is swollen and tender but no leakage or fever mmmmmm......wonder what it is. Things were moving along nicely. I hope this is just a small blip. I went to the doc yesterday and she said that raised sore area is part of the healing process. She said the skin underneath was coming together and the nerves that were cut along the incision are starting to regenerate. Where before along the incision line it was fairly numb, now it is sore because the nerves are coming back. I was so glad to hear it wasn't the beginning of a CSF leak. That's all I could think of when I felt that little lump. I thought fluid was starting to pool there. I can't believe after all I've been through with this surgery that I still have a "glass half empty" attitude. I have so much to be thankful for, I'll just have to give myself a big slap and a good shaking. These minor aches and pains will have to take a back seat to life. |
8 weeks post MVD
This is the first time I have been back to see the surgeon since the operation. Here is what I asked and what the answers were: Q. What constitutes the 95% statistic of a successful MVD? A. A successful MVD is when the patient is pain free and medication free. Q. When is the healing and the pain comfort level as good as it's going to get? A. Approximately 6 months. Q. I have been getting these ice pick headaches. Could it be related to the surgery? A. Ice pick headaches is a general term used to describe sharp brief headache pain. It is a benign condition and not related to the surgery. Q. I haven't been able to fly in over 13 years since I've had TN. Do you think I would be OK to fly now? A. Go for it! Q. My incision is still sore sometimes? A. It's normal, it's still healing. Q. I still have numbness in my lower lip area. Is this permanent? A. The feeling may still come back in time. Q. The pain in my V2 branch is gone, however the twinges still happen in my V3 branch from time to time. Will they go away eventually? A. After doing over 200 of these surgeries, he has never had an MVD that was "partially" successful. Usually the patient is completely pain free. However he is not closed to something new happening to a patient that he has not come across before. He asked me to monitor the pain and if it gets bad to go back on the Tegretol for a short while as a diagnostic test. Because Tegretol has worked for me for so many years, if the Tegretol takes care of the pain then the twinge I am feeling in that area is TN. If the Tegretol does not take care of it, chances are it is something else other than TN. Possibly dental? If it gets any worse he would like to see me again. Well that's it in a nutshell. So on one hand I feel relieved that chances are the twinges I get in the bottom tooth are probably not TN related. I can't imagine that I would be the one patient that is different than all the rest. I guess I will have to explore other avenues where that is concerned. On the other hand, what else could it possibly be? I guess I'll go back to the dentist and maybe have a root canal. 3 months post MVD and the news is good. My twinges have deminished dramatically. I still have a twinge if I let something really hot touch the back of my front lower tooth but I'm fairly convinced now that this is not TN which means....the MVD was a complete success. My incision is still sore to the touch and I have a dent where the cut was. I wasn't expecting that. My hair is about 1 1/2 inches long where it was shaved and I still have a small area of numbness in the lower lip area. I have been reading that a few of you are now on the MVD waiting list like Gidge and Sunstorm, and I want to wish you both all the luck in the world. I hope you have the same experience as I did. Once you get past the first week things pick up very quickly. The pain of the surgery is definately manageable on minimal medication. I think the thought of surgery was far worse than the surgery itself. Would I do it again if I had to?.........in a heartbeat!!!! 4 months since MVD Today is my 4th month anniversary and everything is going well. My incision is getting better every day. The TN seems to be gone. I was petrified to go to the dentist today (old feelings stay with me) but everything went well. I even let him work on my tooth that is bothering me and no pain! Was I ever relieved when it was over. I hate the dentist. He is a lovely man but I hate the drills, the noises, the smells. I'd rather go to the gyneacologist any day of the week instead of the dentist. I still have some numbness but I'm getting used to it. The doc said at 6 months I would be as good as I'm going to get so maybe there is still a chance the numbness will go away. Even if it doesn't, I can honestly say this MVD is the best thing I have ever done. Good luck to all of you who are about to embark on the same journey. With a good surgeon, and a little help from the man upstairs your results should be just as positive. I AM NOW PAIN FREE AND MEDICATION FREE |
6 months post MVD
Unless something unexpected happens this will be the end of my diary. I've chosen to end it at 6 months because my neurosurgeon said "at six months it will be as good as it's going to get". So this is as good as it's going to get....not bad I say! On the positive side (which far outways the negative side by 100%) I'm still pain free and medication free. That really was the goal and it has been met. On the negative side I still have about a one inch square area around the lower left side of my lip/chin area that is numb. I did get the feeling back in my cheek, teeth, tongue. Although this is a bit uncomfortable it really affects nothing. Not the way I look or eat or feel. I have a indentation where the incision was made. I'm sure that it is permanent as well. It feels like the bone just healed that way. Once again it affects nothing. It's not noticable unless I touch it. My hair is still growing back. That seams to be taking a long time. I figure it will be another 6 months before those little pieces fit in with the rest of my do. I still get these ice pick headaches from time to time. They are sharp pains that last for a few seconds and then disappear. There is no rhyme or reason for when I get them. I don't believe they were caused by the surgery as I had them before also. I just thought they were all part and parcel of TN but I guess they are a separate issue. My life is so much more normal now that I am off the meds. All you people out there that live on these megadoses of anticonvulsive cocktails know exactly what I'm talking about. Coming off the meds was literally like the fog just lifted and the sun came out. Everything is bright and clear. What a way to live! Let me just add. If there is anyway I can help any of you contemplating an MVD or healing from one, please allow me to do so. I am staying on the forum with all my friends that helped me through this. I would like the opportunity to return that kindness. You can PM me or just start a new thread. I will answer. |
Thought some of you might be interested in the clinical description of my MVD which was written by my neurosurgeon. It is a little clinical and graphic. This is an excerpt for the letter sent to my family doctor.
"Routine opening, routine craniotomy at the sigmoid transverse junction guided by the Stealth stereotaxy. The dura was opened and the operating microscope brought in. The cerebellum was retracted inferomedially and pleanty of CSF was released. The arachnoid was opened widely over 7, 8, 9, 10, 11, and the 5th nerve. The patient had a relatively small superior petrosal vein which looped along the nerve root entry zone and up along the nerve. This vein was coagulated and divided. Anterosuperiorly, there were branches of the superior cerebellar artery clearly pressing against the nerve, These were separated from the nerve along its course all the way to the nerve root entry zone with Teflon pledgets. The rest of the nerve was then inspected circumferentially along the nerve root entry zone and no other offending vessels were identified. Meticulous hemostasis was thus ensured following which the microscope was taken away and routine closure undertaken." |
I'm so happy for you. You're so brave.
How gracious an act in sharing something so personal... KD |
Thanks Ella
I am grateful for your diary of your MVD experience. I am hoping that my next visit with my neurologist in November 2007 will be one when we make an appointment with MVD. I am on reduced work hours because of my meds and I hate the fog that I am in. I get breakthrough pain especially when exposed to cold. Thanks again for sharing your story. |
a bump to top ,...for this post should be at top .
Ella thanks for sharing so much and posting this .. it is priceless help . many blessings. peace BMW |
2 Year Anniversary
i had this on the Braintalk site, so I thought I would update this one too.
July 22, 2007 2 year anniversary of my MVD. Just thought I would let you know how I am doing two years post MVD. Physically •Still off all meds •Still pain free •Managing to sleep well even without Tegretol (that took a while) •Some twinges or sensations once in a while, which may or may not be TN related and often related to the timing of my menstrual cycles (a few days before or during). •Small area of permanent numbness in the lower lip/chin area Indentation in the bone on my scalp has not gotten any better or worse. Wearing sunglasses for an extended period of time still bothers me . •The ice pick headaches have definitely gotten better. Not gone altogether, although I’m still not convinced they are TN related either. Emotionally •TN still has an emotional hold on me •I still assume that every sensation I feel is TN coming back, when at my age (50 in a few days) the sensations are probably more likely caused by my receding gums. •I’m still afraid to fly for fear of setting off an attack •I’m still afraid to go to the dentist for fear of setting off an attack •I still carry a few tabs of Tegretol in my purse along with my Advil and Tylenol So for me, day-to-day life has become very normal. It’s the underlying damage that Trigeminal Neuralgia has done to my confidence to move past this long and painful chapter in my life, that I can’t seem to get over. I continue to not take any day without TN for granted. I was one of the lucky ones for whom the MVD worked thanks to an excellent experienced MVD surgeon (and whomever was watching over me upstairs ) I would be very happy to answer any questions for anyone who is about to venture on this journey. Please just pm me. |
Questions to ask your Neurosurgeon
As I started this diary after my surgery, I never included a list of questions to ask prior to the procedure. But now after having gone through an MVD, there are many questions I wish I did ask before the procedure and never knew too, so here is a list of questions I might ask if I had to do it over again.
Remember, there is no such thing as a stupid question. Go in with all your questions written down and it’s best if someone is with you, as it is amazing how much you miss when you’re nervous. Neurosurgeon Choice •How many of these surgeries have you performed? (If you are having the procedure done at a teaching hospital you may want to make sure the surgeon you are speaking with is the one that will actually be doing the procedure.) •What is your PERSONAL success rate? •What do you consider to be a successful MVD? Some doctors will tell you “being pain free” and some will tell you a “reduction in your medication”. •Do you think I am a good candidate for MVD? Actual MVD Procedure •What are the complications that may arise? •I’ve heard some people have a feeling of “ear fullness”. What are the chances of that happening to me and if so how long does it usually last? •Is numbness after surgery something I need to be concerned about? •Do you put my head in a halo and if so will there be pain from that after the surgery? •What do you use to separate the nerve from the offending vessels compressing the nerve? •Is there a chance this substance (usually teflon) will be rejected by my body? •Is there a chance it could move? Even under severe movement (like a roller coaster for example)? •How large is the hole you will be drilling into my skull? •How large is the incision? •How much of my hair will be shaved? •What can I expect to happen when I check into the hospital that day? •Should I expect to be nauseous or dizzy after surgery? •Will I have headaches after surgery and if so, how long will they last? •What can I expect to see and feel when I awake from the anesthetic? •Is the relief from TN immediate or can it take time till I feel relief? •What do you use for pain management after surgery? •Can you prescribe something for presurgery nervousness for the few days prior to surgery? Recovery •How long will the recovery be? •How long will I be in the hospital? •When can I resume regular activities? •When can I return to work (make sure he knows if you have a desk or a physical job)? •When can I drive again after surgery? •When can I wash my hair after surgery? •Will I need help for a while and if so, for how long? •If I have a question during my recovery, is there someone I can get a quick answer from? •How do I wean off my TN medication? •Can I wean off the medication slowly? •How long after surgery will I have a follow up appointment with you? Obviously you will need to tailor these question to suit your own situation. |
Thank You So Much For Your Diary...on Sept. 2006 I Had My First Encounter With Tn...i Don't Know If It Was Just Coincidence, However, It All Started After I Had "shingles"...
It Landed On The Left Side Of My Face...it Felt Like I Had A Spider Under My Skin Crawling Around And Making A Spider Web...my Left Eye Felt Like I Had A Spider Web On It...i Kept Brushing My Eye With My Hand, Thinking It Would Go Away...but It Did'nt Go Away...the Itchy, Tingling Sensation Was Driving Me Crazy...i Decided To Go To A Neurologist...he Said, He Thinks I Might Have Tn...so, He Put Me On Lyrica...expensive...i Asked The Phamacist If There Was A Generic And He Said I Could Try "gababentin" 600mg/3 Times A Day...i Went To Another Neurologist...had An Mri,spinal Tap And All Came Out Normal... The Gababentin Has Helped, However, I've Gained Over 25 Pounds...ouch...i Don't Have The Pain That You Had, But I Do Have Numbness On The Left Side Of My Nose, Cheek, Lip And My Tongue...sometimes My Tongue Has A Sensation Of Feeling Frozen...wierd... I Plan On Going To #3 Neurologist In May 2008....i Will Bring Up Mvd...if I Have No Success With That Dr....can You Give Me Your Dr. Name And Where He Is Located...i'm A Us Citizen, However, My Husband Is Canadian...we Really Don't Have A Home...we Live In A Motorhome On Wheels....my Husbands Job Requires Us To Move Around The "us" And It's Easier To Move When You Have A House On Wheels...so, If I Have To Go To Canada To Have The Surgery, It's Not A Problem... I'm Glad You're Feeling Better...has The Numbness In Your Lip Gone Away Yet? Anxiously Awaiting Your Reply.... |
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I was unlucky in that my MVD, done by Peter Jannetta in 1979, was not successful. It also left me with a facial paralysis of the left side of my face. There has been some movement return but it is almost 100% gone still in my forehead and the smile looks like, as one stranger commented, I had a stroke. It also causes my eye not to close completely and I have had to have it sewn shut a few times over the years. (It was supposed to be closed permanently after the MVD but it was so ugly I had opened AMA.). I have friends who have had successful MVD's and when they work, as with you, it opens up a whole new life. Again, congratulations for your success. And also for your staying here. Often, once people no longer have the pain they leave the groups they are with/on not wanting to be involved anymore. It is a true kindness that you want to stay and help. leej |
I agree with that !!! Ella very kind and caring to keep sharing support and posting.
big thanks from me too :Thanx: :hug: |
MVD Post Surgery Diary
Hi Ella,
God bless you for sharing your story. I hope I am still a long way from surgery as my Neurologist wants to try more meds. first. But, he also just referred me to a Neurosurgeon, so it's defiitely a possibility. I loved reading your story and it has helped me, as it did others, very much. Thank you....Bonnie |
Update
July 2009
Hi All, Haven't been in here for a while, but I thought I would check in and give you an update on the results of my MVD. This month marked the 4th anniversary of my surgery and I am pleased to report that I am still pain free and medication free. :yahoo: That is not to say that I haven't had the odd twinge or shock, but I have been able to find a common denominator. If I have an episode (and it is only a couple of times a year) it is always within a day or two of the onset of menstruation. The other interesting thing, is that in the last 3 years I have always had an episode in the month of April. Conclusion: Menstruation + change of season = TN symptoms I am thankful for everyday the sun rises and I don't have to suffer the pain of TN or the side effects of the medications. I take no day without TN for granted. TN still has a strong emotional hold on me. I doubt I will ever be free of that. I am always available to help or ask questions. I do not pop in here as often as I should. If you would like to reach me, please send an email to ellacjn@gmail.com |
the 30th of July was my 7th yrs aniv of my stim implant
I am still med free but not tottaly pain free tho have good enough control over things most times. still have those days. so high five to you and me :highfive: Thanks so much for posting an update I dont ever go to b.t. so it is great to hear from you Ella and I see Jean C posted too always great to hear about old time contacts :) MAY YOU ALWAYS stay pain free and many blessing to you and yours . PEACE BMW...Tina |
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Hi Ella, Are you able to share your Doctor's name and/or contact info. Thank you. |
My MVD Experience
Thanks so much for this diary of your MVD experience! It helped me a lot. I had my MVD on the 27th of April 2010 in BARTS Hospital in London c/o Mr Habib Ellamushi. I was very scared of this procedure and was due to have it in 1998 however the surgeon at that time said there was no evidence of artery compressing the TN and instead we opted for alcohol/glycerol injection. That lasted about 6 Months as did the Gamma Knife the following year. Last year after 14 Years of pain I decided to go for MVD. The first MRI scan didn't show any compression however interestingly on the 2nd examination it did show up quite clearly. Now at 5 weeks following surgery I have had a very similar experience to you. I have been adjusting to sleeping normally again without all the drugs, especially Tegretol! I used that for nearly 14 Years!!
Post surgery I am now feeling much better. I was deaf in the right ear and had tinnitus and that has now pretty much gone back to normal. I too have numbness from my ear down through my lower jaw and along my tongue. I guess that may or may not return to normal but I can live with that if it means I don't have that TN pain! They took bone from my leg to repair the hole they made in my skull. :) I am very pleased with the result. I am not taking any medications now. I have also had a few weird pains but they are not like the electric shock, stabbing burning pains that I was having all these years. I thought they could have been pains from the incision and where the bone is healing post op. I am getting used to cleaning my teeth without biting the toothbrush because of the pain and washing my face and splashing water. Also talking, shaving, walking, swallowing and wind on the face. All new experiences and I'm praying to god that this is it and no more pain. 14 Years is a long time. I've been through many procedures including MVD and have taken anti-depressants, anti-convulsants, had countless sessions of accupressure, accupuncture, massage etc and nothing has worked. They even sent me for a years psychotherapy! I return to work 09th of June and am looking forward to reengaging in the world - pain free! Long may it continue. I wish you well. I agree with you that the actual surgery was nowhere near as bad as I had imagined it. Prior to surgery I was in a state of collapse and now having been looked after by an excellent surgical team and also having such a positive result this is something I would definitely have done again, no doubt. :) |
So happy to read of your good results, Enfield. I had a MVD in October 2009 and am medication and TN pain-free. I have some very mild twinges now and then and some hypersensitivity on my scalp and ear on the TN side occasionally but they are nothing like TN pain (and not in the same place), so I think they are a result of 3 kinds of surgery over the years (and only noticeable because the numbness from those surgeries is almost all gone now). I hope you continue to do really well!
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Awesome thread!
I was not a member of the forum when Ella posted her original entry, but just want to say thanks to her and all who contributed to this thread. It is one of the best threads I have ever read. You are commended for sharing such detail and I so hope for your continued relief. You have been very blessed!
On another note - Seems most of the sucessful surgeries have been performed in Canada. Here in the US there is currently such a debate on healthcare reform that I was just curious if there have been any sucess stories from the US. We have all been lead to believe down here that the Canadian healthcare system is absolutely horriffic and that we should not support any sort of government health system. Any thoughts on this? Not to stir up a debate, and if this is too off topic moderator, please remove. Thanks! |
Yes, there are success stories from the US. MVD was done in Pennsylvania.
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Thanks Jean, glad to hear that!
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:( Sadly Ella's pain has returned after 5 years of freedom :(. She is back on meds and is starting to get a bit of relief with the meds .
:hug: PEACE BMW |
I am happy to be able to correct the post above. My pain has not returned, at least not permanently. :D
July 22, 2010 5 year anniversary of my MVD This year was a little different. I had a few more shocks than last year. Still had my usual seasonal blip in April like I seem to have every year. When I say blip, I mean about 5-7 hours of mild shocks, maybe 2-3 every hour and then it disappears for another year. This year in June I had a 2 day problem. I had a huge shock in the middle of the night that jolted me out of a deep sleep. The attack continued very strongly for two days. I actually was convinced my TN had returned in full glory. I went back on a low dose of Tegretol and it seemed to work. I stayed on the Tegretol and had no shocks for a few days and then reduced till I was off the drug. The shocks were gone and I have not had any since. That weekend was a horrible stormy hot and humid weekend and my hormones were all over the place. I am starting to go through peri menopause and besides the TN, I have lots of other lovely symptoms that go along with this. How am I now? Nervous. I am concerned and watch the days on the calender to try to time when the next possible attack could come (to coincide with my cycle). I have read how a sudden spike or drop in estrogen can affect the trigeminal nerve and I am convinced that is what is happening to me. I believe it falls under the heading of "Menstrual Migraines" http://today.msnbc.msn.com/id/4465789 I have an appointment booked with my neurosurgeon for October just to see if he can rule out another compression, but I am pretty sure that if it was a compression the TN would be more consistent. Physically, I am fine and 95% pain free and 100% medication free. Emotionally, TN has a strong hold on my life. I still don't take any day for granted without TN and without Tegretol. |
Hi Ella,
I was just reading through your post and thought maybe you could help me figure out what's going on. First of all, I'm so happy that you have made it 5 years doing as well as you have. I had my mvd June 16, 2009 and also gamma knife done May 2009. I did really well the first year. I wasn't able to go completely off the tegretol. I take 600mg a day now since my surgery. I also notice I will start having some shocks around the week before my period. Last month and this month it's been a little more consistent. This is day 9 of experiencing the shocks. Sometimes 4-5 a day, and the last few days only about 1 a day. I went up to 700mg when this started happening. Usually they're mild shocks, but occasionally a sharper one. I'm starting to wonder if the tn is going to come back full force. I'm afraid to eat and to brush my teeth again. I'm just wondering if you could share any thoughts as to what you think may be going on with me. My original problem was veins that were growing and compressing my nerve. I'm worried that maybe they're growing back already. My neurologist, (not my neurosurgeon) doesn't really have any idea what the problem could be. Any thoughts would be appreciated. Thank you, Laureen |
Thank You
Hi Ella,
I'm scheduled for an mvd on November 17 and your diary has been a great comfort to me. I am very anxious about the surgery but I suppose this is normal. Thanks very much, m3guitar:) |
Hi and thanks for your diary. I am getting an mvd in 2 weeks. I'm quite anxious about it but determined as well. Your experience has prepared me. Thank you, Mark
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Hi Mark! I just read your first post and was about to write and tell you to read Ella's account of her surgery - looks like you found her!
Do you mind sharing with us where you are having your surgery? I live in Nashville and was just curious. If I ever decide to go with the surgery I will most likely use Vanderbilt, but my last neuro doc was over there and I quit going to him because they were too quick to suggest surgery - and thank God I am not at that point yet. Good Luck and let us know how you are doing!:grouphug: All the best for a successful procedure, Rhonda |
MVD tomorrow
I'm not sure you will get this since none of my posts have showed up but thank you, you have given me courage to go ahead with my mvd. Mark:)
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Toronto
Hi Ella, I am also Canadian. Just DX with petrosal vein compression of the CN5, and awaiting MVD.
Doctors have not yet referred to TN, only using the phrase spasms. I have spasms both right-&-left side of my face. Question: Are there any local support groups in Canada...? Thx michatki |
hi ella- I am soooo happy for you, i ma new to this and your story gives hope and is aspiring!!! Thnak you!!!!!
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T.N groups in a few different countries
Michatki ,
I hope this helps you and others that are "long distance"-- American Pain Foundation: Trigeminal Neuralgia http://www.painfoundation.org/page.a...045.htm&menu=1 Trigeminal Neuralgia Association http://www.tna-support.org/ Trigeminal Neuralgia Association Australia Inc. http://www.tnaaustralia.org.au/ Trigeminal Neuralgia Association of Canada http://www.tnac.org/ Trigeminal Neuralgia Association UK patient support http://www.tna.org.uk/ these are from the list of useful websites thread which has many more links and helpful info for lots of us here s the link to that thread http://neurotalk.psychcentral.com/thread169.html .... I will see if I can get Ella to check in ... PEACE BMW |
Well, BMW summoned me on Facebook. Sorry for not being around much. Often people from these boards and the BrainTalk communities will contact me through email if they have any questions or comments about my MVD diary. I answer all my emails. My address is ellacjn@hotmail.com.
There is a huge support community on Facebook as well. Both sufferers and family members from all over the world, post support and ideas. When we are going through a rough patch, ultimately we are alone in our pain. Since there is no outward sign like bruising or blood we look perfectly fine. Only a fellow sufferer truly knows the desperation of this relentless affliction and although they can't help your pain, they can hold your cyber hand from anywhere in the world. I would be happy to be "friends" on Facebook with any TN sufferer and introduce you to the other members. Here is my link, just let me know you are from here. http://www.facebook.com/ellabc It's a great place to go when you are hurting in the middle of night all alone. Because of time zone differences, you are never alone in cyberspace. Michatki, I'm sorry for your suffering. You did not mention where in Canada you reside. I know there is a group meeting in the Toronto area on the last Sunday of each month. Here is the email address of the person who sends out notices about those meetings. Jan@catna.ca. If you are in the GTA, contact her for further info. I have never attended one of these meetings so I cannot comment on how they work or how big they are. At www.tnac.org you can click on "support" in the nav bar on the left side and it will give you the links to all the support groups in the difference provinces. As for me, my TN has been behaving. Since that weird blip in June, it has been quiet. Going through perimenopause, I find a definite correlation between my TN and hormone surges. Although I do not get shocks anymore, sometimes, before my [irregular] period, I can experience a sensitivity that feels like it is about to be a shock, but it does not come. Sometimes it comes in the form of a premonition. I know that sounds strange, but I actually get a premonition, just before one of these sensitivities. A subtle reminder that this monster is lurking in my head somewhere and keeping me in check, so I never get to forget or take it for granted. Since my MVD in 2005, I have been able to get on with my life. I work full time, I am still writing my advice column and now have embarked on writing a novel. I know most people posting in these threads have failed MVD's, because the ones who have successful ones, can't wait to put this chapter behind them and never enter anything which reminds them of their suffering. This is why I posted this thread in the first place, so others can see there is hope. The numbers don't lie. For Classic TN the success rates are in the high 90th percentile. As for ATN, I think each case has to be looked at individually to assess the success rate. But the fact still remains, in the hands of an experienced surgeon, you may have a good chance of beating this thing. The surgery sounds far worse than it actually is. Recovery time is a lot shorter than going for plastic surgery which people do all the time these days. :wink: I lost 13 years of my life being afraid of MVD surgery and living on high doses of Tegretol and pain. If I had only polished up my crystal ball, I would have not lost those years. Doctors always said, "If the meds work, stay on the meds", so I lived in a Tegretol fog for all those years. Please feel free to contact me on Facebook or by email. I will do my best to answer any questions about the surgery or just talk and offer some friendly support. :Dancing-Chilli: Ella PS Thanks Tina for reminding me to come back.:Thank you: |
July 22, 2011
6 year anniversary of my MVD Well today is July 28th. My MVD anniversary came and went and I didn't remember. That's huge!! Maybe the emotional hold is loosening it's firm grip? This year has been quieter. Very few shocks and even those were so mild the average person wouldn't even realize it was TN. Because of this diary I kept while I was recovering, I have people writing me all the time, from all around the globe (ellacjn@hotmail.com). TN forums are a great place for support, but let's face it, most people with successful MVD's have no reason to stick around. They want out and never want to look back. Who could blame them? What that leaves is an unbalanced view of MVD success rates. I urge anyone who is thinking about taking the MVD route, to look further than this or any other forum. Look at statistics, speak to neurosurgeons, read textbooks. It's serious and it's scary, but for the right candidates it may give you back the life you've lost. Whether it be surgery, medication or another procedure, I only wish that everyone could be lucky enough to find the right solution to live pain free. It's a luxury most people never think about. Tomorrow is my birthday, and I can't think of a better gift than the life Dr. Michael Tymianski of Toronto, gave me six years ago. :D |
July 22, 2012
7 year anniversary of my MVD This year has been very typical for me. Very few shocks. Still had my usual small flair in April, but nothing that required meds. This is the first year I am in peri-menopause and guess what girls, without that monthly rise and drop in hormones, the difference is extremely noticeable. Far fewer problems. Now all I have to be concerned with is the weather and atmospheric pressure. For all of you that are going through MVD this year. Good luck. I know what a hard decision it is to make, but once you make it you are on to a new beginning to an old life. I still know that I have TN. I always will. The memories and thoughts are never going to go away. You can't suffer so intensely and so long and just wake up and forget it existed. Whether it be surgery, medication or another procedure, I only wish that everyone could be lucky enough to find the right solution to live pain free. It's a luxury most people never think about. :D |
mvd curious!
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your story will benefit hundreds of people considering this option as it has me. i had full on tn for 2 years about 10 years ago. never left the house and became a recluse except for dr's and hospital appt's. 4 months ago it has resurfaced, at about half its original intensity. i cannot go through this again if it gets up to full speed. i'm 43 and care for my parents one of which has dementia. STRESS STRESS. i just hope that your results with mvd are typical results and not something out of the ordinary. thanks again and take care trevor |
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Have you contacted the TNA support group in Florida?? They go by the Facial Pain Asociation now,,but they usually keep postings on every group they know about,,,can't hurt.... I had an MVD an although for me it did not work I am still very Pro having them if you are the right candidate,, sounds like they think they see something so you probably are. Although I have a high tolerance for pain,,the first night was bad but I was up and walking the next day and have had back surgeries that hurt more,,,you'll be fine Keep us posted on your journey,, we are with you |
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