Frustrated!!
 

I am currently 4 weeks post mvd. Can anybody tell me how long the facial numbness lasts? Also, my jaw on the left side, which is where the TN was affecting me, doesn't seem to open all the way. Has anyone else experienced that? If so will that go away with time? Any advice would be appreciated.

Thanks

hello Tracy I am glad you found your way here . I have no experience with MVD but I knowplenty of people that have gone threw MVDs. This is from the stickies at the top of this page ... Ella's MVD diary (it is a good read with lots of info ) --- page 1 -
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. also on page 2 of Ella's MVD diary -- 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
allot of us are on face book and some leave email or way to contact . I know Ella will gladly respond if you send her a email.so dont be shy please feel free to contact her. I am sending you positive healing thoughts and pray your MVD continues on a smooth path to successful ending. we are all here to help each other or at least try the best we can .If you have more questions, want to chat ,vent or need more contact with others who have had MVD do not hesitate to post here and me or one of us will be along to help. :grouphug:
Peace
BMW

Thanks for responding and for the info. I will read Ella's diary for sure!! The good news is the TN pain seems to be gone and after being on Norco for 15 months I finally stopped it 2 days ago. Knock on wood no withdrawal symptoms!! I started weaning off my other meds, but I'm on such large doses I know it will take a long time. My daughter is getting married in October and I'm hoping to be off of them for good by then. I think the hardest thing with having TN is most people don't understand the amount of pain you are in. You're not wearing a cast or any other outward sign that you have a problem and they just don't get it. I actually had 3 veins wrapped around my nerve, which my dr. said was very rare and it involved manipulating the nerve tremendously. I'm hoping all of this will resolve once the nerve calms down and repairs itself. I'm so glad I found this site and hope to get more input as well. Thank you so much for your prayers and your offer for yourself or someone else to just listen. It really means the world to me.

A Very Thankful Newcomer
tracyh

You are most welcome. Congratulations on daughter getting married :) I know it does not seem like much ya know talking/venting but it really helps. None of us are doctors or anything. But I know for a solid fact T.N. sufferers hide as much of this horrible monster from our family and friends as much as we possibly can. We feel like a burden and no one can see the monster chewing on your nerves sort to speak . and we sit and we wonder and are afraid . that is why Neurotalk is such a great place . I found a "new home" when i found this place and I hope you do too. I will contact those who have had MVD and send them here to reply. it may take a bit being the holiday is coming and such so be patience . I will be around tho . Blessings to you and hope to get others here sooner rather then later.
Peace
BMW

I didn't have any issues with numbness and jaw opening, so I'm not able to answer either of those questions for you. I hope they resolve soon. Are you taking B-12 to help your nerve heal?

I wish you the best of luck in getting off all your meds and being pain free. My MVD was 8 months ago and it helped my pain somewhat, but I'm still taking several prescriptions and getting nerve blocks every 6 weeks. I hope your results are better than mine.

Here's wishing you a speedy recovery. I hope your TN goes away completely and forever!

I'm sorry you're still having to take medication. That's the main reason I wanted the surgery. I didn't know about the B-12. Is that just a supplement that you take?

I have noticed, today especially, some twinges in my teeth. I'm hoping that's just from the nerve repairing itself, so I would definitely be open to trying anything to speed up the recovery process!!

Thank you so much for replying!! I'm hoping I won't be one of the 2% that had this numbness forever. It's the whole left side of my face, but I suppose it's better than having all that pain. Maybe I'll just have to get used to it, but it's just soooo annoying.

B-12
 

B-12 was one of the first things they checked when I started having facial pain. I was in the low normal range and my neuro told me to take 1000 mcgs per day. It's supposed to help keep your nerves healthy. I'm now taking 500 mcgs every other day and my levels are in the high normal range.

I hope your numbness goes away. That would be a very weird feeling. Did you have any twitching with your TN? I have twitching in my cheek, lip, nose and under my eye. It's usually not visible, but I can feel it. If I mention it, the doctor just says something about it being a different nerve and won't give me any explanation.

I hope your recovery is going well.

I never did have any twitching. Just some pins and needles where the numbness is. I'm hoping it's like when you go to the dentist and that means the feeling is going to come back soon.

I am going to try the B-12. I also found out fish oil is supposed to help keep nerves healthy, so I'm going to add that in as well.

I actually e-mailed Ella and got some reassurance from her that I'm just beginning recovery and to be patient with healing. That the numbness takes quite awhile to go away.

I'm going next week for my 6 week follow up and hope to find out this jaw pain is normal!!

I hope you're doing well also. Hopefully those injections will start to help!!

I did not have MVD as an option but I did get twitching ALLOT . I thought others could see my lower lip and right cheek twitching and spazing out but they could not see it . I was told it was /is nerve misfiring. I dont have it happen so much any more. I too also take vit B12 since I first broke lower jaw in 99. It was one of the first thing dr. reccomended for nerve growth.Oh for some T.N folks numbness is better then the eletrical zapping but both suck. Glad Ella got back to you. Take it one day at a time. Sending low pain and some good days . Peace. BMW

I guess the twitching isn't so bad, but it can get pretty annoying. At my next appointment, I'm going to ask about Botox injections. I wanted to try Botox for facial pain, but was told that my insurance wouldn't cover it because I didn't have classic migraines. Maybe they'll do it for twitching.

I have an atypical form of TN with mild to moderate constant pain on both sides that moves around every few minutes. I finally had a high-resolution MRI and was offered surgery because they saw a vein touching my nerve. But when they went in, they found an artery looped around the nerve. The weird thing about the surgery is that it was done on the right, but the left-side pain was almost completely gone after the surgery and the pain on the right is still there.

Tracyh, are you hanging in there? I hope every day of your recovery is a good one.

Hi Cheryl,

I am hanging in there. The pain seems to be much better. I didn't even take any Advil yesterday, so I'm seeing the light at the end of the tunnel.

My face is still numb, but I think it may be improving slightly. It's just so hard to tell because it's everywhere and I've been tricked before. It tends to get better in certain places, then the next day it comes back with a vengeance!!

The jaw pain/tightness is getting somewhat better. I will be seeing my neurosurgeon Wednesday for my 6 week follow up.

I drove for the first time yesterday. I know I could have done it sooner, but my neck felt so tight I didn't want to chance it. I guess you have to pull the band aid off sooner of later. Everything went fine. Now I'm mobile again!!

I will be starting B-12 today and checking in very soon.

Good luck with your injections and keep me posted

You have to be easy on your self my friend . You just had MVD your nerve was manipulated and Major surgery like brain surgery . It takes time to heal and bounce back. Do not be so hard on yourself if a bad day or a little slip back to pain happens. It sometimes seems like two steps forwards then one step back. One day at a time . Thats the dang hard part the waiting and pushing threw to the next day. I am so happy to hear you are driving again .It is getting back to doing the small things one by one that feels so good like a tiny bit of freedom in your pocket . Love that type of update. I think the vit B will help. Fingers crossed for both of you to keep rebounding and reach the light at the end of the tunnel and able to controll the ugly pain enough to get back to "freedom" and good days. Sorry my contacts are takeing a bit to reply i know with long holiday it would be like that. Theyll be by at least a couple of em soon . Low pain healing thoughts and Peace BMW

Although I didn't experience any facial numbness after my surgery, I do have a spot in the back of my throat that I can't feel anymore. What I had happen is my taste & hearing changed (things tasted somewhat metallic & certain sounds were off) for about 3 months before I started returning to normal. After 5 months, I was back to tasting & hearing normally.

I have noticed that food does taste different, maybe then I won't want sweets anymore LOL. My ear does pop a lot and feels like there is water in it. For some reason I think I have every symptom you can possibly have after MVD!!

How are you doing with pain? Any relapses?

Unfortunately, I have relapsed bretty badly since my surgeries. After about 3 months, the pain started to come back in my left ear. It wasn't as bad as it was before the operations, but by about 5 months post-surgery, I was back to having daily pain. I really hope you don't have the same happen to you. Unfortunately the doctors I'm dealing with in Alaska have no idea how to properly treat my condition, so we're making it up as they go.

Today was a bad day for me. Answering phone calls over the weekend aggravated my nerve more than I had though, so today my ears were a lot more sensitive to triggers & I experience more frequent attacks. Thankfully tomorrow is my day off, so I can keep everything away from my head & let it get back to normal.

I'm so sorry you're surgeries didn't help. I'm sending positive thoughts your way in the hopes your doctor's will figure out a way to control your pain.

Rest up on your day off!!

Going tomorrow for my 6 week follow up and hope to get some answers about my jaw. I recently had my braces taken off and I'm wondering if this could be contributing to the pain. I guess having it all done at age 43 probably wasn't the best idea!!

Itzag you should get as much info and copies of things that have helped others and then suggest /show to your docs . I know its the poops when you have something doctors dont know or have little experience with treating. its like you yourself have to guide, point,...kick them into the right direction .suggests meds or other options to them docs if they are stuck on neutral.I am sorry the operation didnt help as much as it has for others. I know more of the latter where it doesnt last for life.but it still helps thousands of others because each of us and or symptoms are different. as well as the surgeon . are you taking any meds now? did any meds help before the surgery? sending waves of low pain and good energy at you and relax on your day off.
Tracy hope your follow up is good and leads to some relief and answers.Also its nice to see you both connecting but I wish it was over something more positive. :grouphug: Peace
BMW (Tina)

I went for my 6 week follow up yesterday and found out the jaw issues I was having are NORMAL!! Apparently the trigeminal nerve affects two muscles that contribute to chewing. Who would have known? He told me heat or massage can help. Because of so much manipulation of my nerve ( 3 veins wrapped around it) this can happen.

I am very relieved and will start using these these tips. The massage actually feels awesome!!

I go back in 6 more weeks and he is very confident the numbness and jaw issues will resolve. I will continue to keep faith that this will get better with time. I guess we all just have to take it one day at a time

Even after everything I've been through I can honestly say I would do the surgery all over again. I will take the numbness and stiff jaw over the pain I was having before. My hope is to remain pain free!!

Thank you to everyone who has responded to may complaints. I will be updating everyone on my continued progress. I know where to come when I have bad days and I know there will be more with the continued decrease of medications.

Tracy,
I wanted to check up on you sooner, but have had out-of-town company for the past few days. They left this morning. It's dark and rainy outside and I'm sitting on the couch enjoying my quiet, empty house.

I'm glad you got good news at your follow-up visit. That's so encouraging! The odds are way in your favor that the surgery will be successful and you'll be able to get off all your medications.

Did you have to take steroids after your surgery? I think that was the worst part of my recovery. I ate constantly, but nothing tasted right. And I was in a terrible mood. I now have a lot of sympathy for those who have to take steroids regularly.

Did you get the excruciating zapping pains with your TN? Did it come on all of a sudden or gradually? How long did you have it before you had surgery?

I had never heard of trigeminal neuralgia until I got it. It took a couple of months before I could even pronounce it correctly. I'm so glad I finally found a place where I can talk to others with the same condition.

I hope you're doing well, Cheryl

:cool: happy to read your follow up was good yesterday Tracy. You gotta give your body yourself time to heal. The doc is Right your nerve was manipulated allot.As well as your jaw, neck . massage and warm /cold compress should help. YES t.n. sister KEEP Faith things will get better ! Your just starting to mend . Things will continue to get better one day at a time. :grouphug:

Unfortunately, I don't have a very good relationship with my Primary Care doctor, who also is in charge of my Pain Management. She's not abusive, and she seems to want to help in her own way. Unfortunately, her way involves me dropping all pain medication in exchange for physical exercise, which will somehow release enough endorphines to relieve pain all day, every day. I know that physical activity helps to relieve pain, but I have to be very careful with what I do & how much I do, otherwise I end up experiencing intense pain for at least an hour, or even the rest of the day.

Thankfully, I know I'm not the only one who thinks I'm not being treated correctly. When told of my treatment history up here, the doctors down in Seattle were shocked & couldn't understand why the Alaska doctors were basically shooting in the dark with their treatment plan. At least I know I'm not just crazy.

If anyone has suggestions on how to talk to your doctors when they aren't inclined to listen to you, I'd appreciate any tips. Would also appreciate any tips on what a person can do to relieve pain when it happens.

Maybe another doctor would be more helpful. I do know one does not get to pick and choose doctors at will and its more who is covered or in net work on your insurance ...if you are luck to have some or you are left with the one thats nearest etc. I found for me that Writing things down on paper and bringing them to doc apts and giving to the doctor was very helpful . it is the best way to have things on record and in your file with each of your doctors. I would write my questions why isnt exercise helping lessen the pain as your doc suggests... my "wonders" I wonder if this med would help more... My worries . i would sometimes go to my appointments with 4 or 5 pages of stuff . a copy for me and one to give my doc . the doc should put this in your file they have . it will give more time for the Doctor to read over and take in things . you can also print things off your comp or web sites to show your doctor. I did this with another issue unrelated to t.n. and the gastro doc took out his phone went to the website and promptly started me on the med suggested and I am doing good. Yes be careful with exercise because it changes the blood flow and that messes with the pain monster. I am gonna read some posts and respond to the pain relief question after . hope your having a relaxing night. Peace
BMW

Hi Itzagi,

I agree with BMW, write everything down and give your Dr a copy. But I would suggest keeping it to short, snappy, to the point Bullet Marks. That way you can run through your concerns together efficiently and your own words are set down in your Notes.

However, this doesn't always work. I did exactly this with my last idiot Neuro and got nothing answered - not even the most basic 'what is causing my compressed spinal cord, as shown on my MRI?' There is no getting around ignorant, but few Drs are SO bad that they will not work with you to your benefit.

Dave.

No steroids thank goodness. I don't do well on those. I've been taking Advil instead, but only when really necessary.

My pain started after a root canal. I had zapping pains in my lower teeth and horrific jaw pain. Nobody could figure out what was wrong. I saw my dentist who did a repeat root canal, an endodontist who said the root canal went great, and two general physicians. The second doctor finally gave the TN diagnosis.

I had never heard of it before either. As a nurse myself I finally started researching it.

I had the pains for 14 months before surgery....ugh!! That whole time I was on Norco for pain. Luckily I'm off of it with zero problems. I was scared about withdrawal symptoms.

I'm feeling pretty good 6 weeks post op. This site has helped tremendously as well

I'll keep posting as my progress (hopefully) continues to go well!!

Thank you so much for your kind words and encouragement! I'm taking it one day at a time and hope to continue to heal. I will keep you posted for sure!!

I'm happy to report yesterday was my last dose of Baclofen. I'm keeping my fingers crossed that I won't need it anymore. Next step is to get off my gabapentin and trileptal. I have decided however to wait to try to decrease any more meds until after my daughter's wedding shower. I don't want to possibly be in pain that day.

I seem to be doing pretty well. Other than the jaw issue. My husband made hamburgers on the grill the other night and it was very difficult to eat. Face numbness continues and I have realized I have paresthesia. I finally figured out what the "pins and needles" feeling was. Occasional teeth twinges, but nothing bad.

I'm still keeping the faith that the numbness will go away in time. My doc has said that when I see him at my 3 month follow up I will be amazed how much better I feel, but I'm putting up in the big guy upstairs hands. I have finally come to the realization that whatever will be will be and I can't keep worrying about it. I'm basically pain free after 7 weeks and I shouldn't be complaining.

To all my fellow TN sufferers I wish you pain free days and the hope that somewhere down the line you will feel as good as I do!! God bless :)

Hi Tracy,

So glad you are doing well, although Paresthesia sucks. I have it with Neuropathic Facial Pain and TN, so I know what you are going through.

I was going to have a mesh sheath put between my Trigeminal Nerve and the Arterial Knot causing all the problems, but I had a heart attack in '08 which made me unsuitable for anaesthetics. The Topiramate I take for Cluster Headaches, Lidocaine Infusions and Ketamine are the meds I rely on.

I do hope your improvement continues.

Dave.

;) Tracy your game plan sounds good. I would not all at once stop all meds either. a little bit at a time . and try to eat easy chew food when your jaw is sore. Agree that yes somethings you just have no control over so its in the Universes / God hands . pstt your not complaining when your have t.n. you live on the edge on the ready for the next pain flare up/attack . I am not so sure that really ever goes away even if one becomes pain free. sending many blessings and like English Dave I too wish for your improvement to keep a smooth and steady pace to pain free and med free happy ending.
PEACE
BMW

Hi Tracy, I hope things are continuing to go well for you. I'm so glad that you're feeling better in time for your daughter's shower. Have you been able to go back to work yet? Is your jaw starting to feel better?

I went to a headache specialist last week to talk about the new headache type I developed after my surgery. He spent an hour and a half talking to me and was very interested in my TN. His theory is that I never really had TN. He thinks I have occipital neuralgia that was triggered by a fall I took a few weeks before the pain started. He used the word inflammation a lot. He put me on boswellia serrata (natural anti-inflammatory) and asked me to try a gluten-free diet because I've been having mysterious stomach issues.

My son has terrible teeth and has had a lot of dental work lately. Since learning about TN and hearing so many people say that theirs started with dental work, I worry every time he goes to the dentist.

I have another question for you. Did your vascular loops show up on an MRI before you had surgery?

I hope your days age getting better and better. Take care, Cheryl

Hi Cheryl, I'm feeling somewhat better. Still having the same old numbness and paresthesia. I've been wondering if this is from decreasing my medications. It seems every time my meds go down the numbness moves on my face. Almost like withdrawal symptoms.

I'm wondering if anybody else found this to be true as well.

My veins did not show up on my MRI before my surgery, but because of my symptoms my neurosurgeon said I had typical TN.

I had to go in for a teeth cleaning and I was petrified. I understand your fear as well for your son. Make sure you see a reputable dentist. If work is needed that a specialist should do, go to a specialist not a general dentist!!

Believe it or not I'm a stay at home Mom. I currently don't work out of the house. I have a 24 year old daughter and a 5 year old daughter, but I am a registered nurse. Hopefully some day I'll get back to it!!

My jaw is still sore but I'm doing massage and exercises that seem to help. Plus I've been taking 15 minute "me" breaks to sit out in the sun. Relaxing really does help.

I hope your headaches resolve soon with the new medication. Keep me posted!!

English Dave, I'm so sorry you couldn't have the surgery. To date I'm doing somewhat better.

I'm hoping the paresthesia is transient and will go away once my nerve is completely weaned off my medication.

My daughter is in the medical field, just like her Mom, and continues to harp on me that nerves can take up to 1 year to completely heal.

I hope your meds are helping with you pain

Tracy

I'm sorry to hear that you had to go through all this while caring for your little one. I'm extremely grateful that my health problems started after my kids were grown and out of the house.
I hope your nerve is continuing to heal. I hadn't heard that it can take a whole year. That's good to know.

Tracy I hope you are having good days. That your nerve is calming down and healing as the pain lessens.we have something in common besides the t.n. my oldest is in the medical field too . she has a college degree in bio med and just finished her first year at med school in UNC . a first generation college for us tho. lol funny how things turn out she was in grade 3 when I had my accident and got this t.n. monster. She vividly recalls watching the helicopter land at the accident a block away from her school she was waiting for me to pick her up ... enough flash back for me on that ugly time back there. But sometimes the bad hard things do leave a positive impact and inspire in a good way. Sending you all the best and praying you continue to heal and become pain free.:hug:PEACE
BMW

My pain seems to be gone. I do get occasional twinges in my lower teeth. It doesn't hurt. It just seems to surprise me.

The numbness seems to be kind of traveling around my face now, so I'm trying to take that as a sign that it will eventually be somewhat better. It does this every time my meds are decreased. I'm still wondering if this is just because my nerve it having "withdrawal" symptoms and is just learning how to adjust without medications. I truly how that is the case.

I'm doing cheek and jaw exercises several times a day with massage without fail and I think it helps. I also do not have to wear the lower retainer anymore. I have gotten a permanent retainer instead. That also seems to have helped a little bit. Maybe it was putting pressure on my nerves?

So many questions and not enough answers!! It's been just over 2 months since my surgery and I'm sure I still have much healing left. Maybe because I had so much manipulation of my nerve, due to multiple veins being wrapped around, my recovery will take longer than most people?

Either way I'm definitely having more good days than bad and I am forever grateful to my neurosurgeon.

Praying for all my fellow TN sufferers to have pain free days

Almost 3 months post op MVD. Has anyone out there had withdrawal symptoms from Bacolfen? Currently experiencing depression fatigue and sleeping issues.

I have a hard time just getting out of bed in the morning. I find it strange that I had no problems stopping Norco, but this one is getting to me.

Not to mention the left side of my face and head is still numb. The past week has been extremely hard on me. Any advice??

I can help with that. I have had plenty of meds to try before anything else was even looked at.Each Med or combo of meds affect each of us different . I would definitely bring this up with your doctor so that you can safely and slowly reduces your med and also so the Dr. knows every things in your healing and recovery is progressing as they expect. I would guess that perhaps the Dr might switch medication to help with some of the issues . I found i was allergic to anit seizure meds by going to the er with totally body tremors.and other meds I have looked like i was detoxing from some bad street drug or something. It is a slow process it dose not matter the treatment I know it is so hard waiting for everything to just calm down and be off some of those meds. and that in turn can get the stress up and that wakes up the pain monster but just keep holding in there. I would call Dr before end of week it wont hurt to check in and get input. thats what he is there for . so do not feel like you are bothering the Dr. they are getting paid to be your doctor they serve you not the other way around.:hug:also dont forget you can contact Ella since she has had one . do cold or warm compression help ? sending low pain and healing thoughts to you. also if you need anything to I will try and help or just listen . Baby steps one day at a time . PEACE
BMW

Tracy,
I'm sorry you're having a set-back. Is Balcofen a muscle relaxer? I've tried a lot of different meds, but haven't had any experience with muscle relaxers. I agree that you should talk to your doctor about this. I hope you get to feeling better soon. Cheryl

You guys I'm losing it!! I stopped the Baclofen weeks ago (Cheryl it is a muscle relaxer). I had no problems with that. It's the Neurontin that's causing a problem.
I talked with the doc today and instead of taking it once a day I will be taking smaller doses 3 times a day. Hopefully by having it in my system throughout the day the jaw pain will improve.

My TN pain seems to gone!! I will see my neurosurgeon soon for my 3 month follow up. Maybe he will suggest physical therapy for this ridiculous jaw pain??

My mood luckily had improved!! My family is actually throwing me a "recovery party" this weekend. I am so looking forward to seeing all my family and friends. My Dad was beside himself when he found out about the brain surgery and this party HE planned helped him get through it.

Sending painless thoughts. Tracy

Neurotin MADE ME SUICIDAL this DOSE Not mean you or others will have same side affect but .... please please call doc if you start feeling depressed. So nice to hear tn. pain is evacuating .And your having rebound party. Sweet. Now at this party You kick back don't over do it. Big smiles thanks for update. :cool:

Tracy,
Are you feeling better with the neurotin dosing? How was the recovery party? That was a really nice thing for your family to do. I'm so glad that your TN pain is gone and I hope the jaw pain is getting better.