Hi!,
I have had TN since 2001. In 2009 I had MVD which lasted for about 2 years. I have been on 300 mg of carbamazepine 3x times a day and 150 mg topiramate a day until this past week. When they put me on additional 300 mg gabapentin 3x times a day. The pain is still unbearable at times. I do not get to see the doctor until this Thursday. On my first MVD the trigeminal nerve was being compress by the artery coming out of the brain stem. They put Teflon sleeves between the two. Who has had a second MVD and what did they do? Who has had the trigeminal nerve cut and what are your side effects?
While I have not had a second MVD, this procedure has a somewhat lower success rate but not every neurosurgeon will want to do it. Why? I can only surmise that (a) because the success rate is lower somewhere around 80-85% or (b) it is more difficult and time consuming since there will be adhesions that have to be taken down. I know many who have had successful, to one degree or another, with a second MVD. I was considering it when I went into remission and I am still there after 10-11 years. I attribute this to large doses (5000 mcg) of V-B12 taken sublingually on a daily basis.
Hi Steph -
I had a second MVD about 9 years after my first one. On the second one, they found that the teflon paddies has slipped out of position and there was a lot of scar tissue pulling on the nerve. They cleaned up the scar tissue and put in new teflon pads and I awoke without any TN pain…although with a whopping headache! Alas, my pain relief only lasted about 9 months and then the TN came back worse than ever. I then had a stereotactic procedure (like Gamma Knife but with a different name)…but it did nothing to relieve my pain. I am currently just on chronic pain management because the neurosurgeon said that I am out of options, as he felt any further procedures would only make things worse for me. Not sure why my second MVD was not as successful as the first one (with 9 TN free years) but I am assuming that I formed more scar tissue that is tugging on the nerve. I am unfortunately one of those people that form adhesions (scar tissue) quite readily. Wishing you some relief in this New Year.
What tests did your doctor do before your MVD. I am scheduled for a CTA and a MRI. They have change my meds to 600mg Oxteracarbazpin 3x times a day 600mg gabapentin 3x times a day and 20 mg Baclofen 2x days. It barely touches it. I can only drink through a straw on my left side very carefully. Touching my lip, chewing, talking or nothing set the shocks off. It even wakes me up at night. The doctor said we have to go through this protocol again before I can see the surgeon He has already called to get an appointment which may take a month.
I had a special protocol MRI done. Unfortunately, I do not remember the exact name; but it is done in a specific manner to better visualize what’s going on around the TN at its base (coming out of the brain). None of the meds you are on helped my pain either…and for me, the side effects were intolerable. All I did was try to dull the pain enough to survive until I had the surgery. Before having a second MVD, I did a lot of research to find a doctor who has done multiple repeat MVD’s (with good results). I had to get special dispensation from God (aka my insurance co) to go to another state for the surgery. The insurance neurosurgeon I was seeing does MVDs, but he had never done a repeat before and I was not about to be his first. I spent a lot of time explaining this to the insurance company before they finally approved it. A repeat surgery carries more risk due to scar tissue formation, etc., plus I was almost 10 years older than at the time of the first surgery. I am so sorry that you are suffering so…this disease is hard for anyone to understand if they have not lived it. Who is currently treating you? Neurologist or GP?
I am being treated by a neurologist. My surgeon actually has written several books on TN and is one of the first surgeons to do the MVD in this state. I don’t know if he has done repeat surgery or not. He was recommended by Mayo back in 2009. The side effects of the meds are tolerable at this time. But the pain is so intense at time that it is intolerable. It is very hard to explain to people what you are going thru. Luckily I have a very understanding husband. I try to exercise to take my mind off it when can. I use Anbesol to numb my mouth so I can brush my teeth and eat. I can only hope that the test can show something. I know that usually they do a 3D MRI for TN we do not have that in this town. But if I go to the surgeon he may order one for he is in Indianapolis. I guess the funny thing is my neurologist’s name is Dr. Paine. So I always say I’m going to see him for my pain.
Great that you can keep your sense of humor. My first surgery was done by Dr. Peter Janetta in Pittsburgh and I had fabulous care at the UPMC. I went to the “world famous” Cleveland Clinic for my repeat. I can’t remember the surgeon’s name, but he studied under Dr. Janetta and primarily does TN surgery. He was also highly recommended by my colleagues (I’m a CRNA, retired now). My surgery was great, but my after care in the hospital was less than adequate. I wish I had gone back to Pittsburgh, even though Dr. Janetta was retired by then, his surgical staff was top notch. Don’t know much about Indianapolis(except the speedway is there…lol). Where do you live? I’m Fran, btw.
Humor is sometimes the only way to cope. I live in a little town 100 miles from Indianapolis called Hymera. It is 25 miles from Terre Haute. It is in one of the poorest counties in the state. I am retire not by choice. Our plant (Pfizer) closed in 2010. I worked for them for 26 years and my husband worked there for 29 years. I have been a caregiver to my neighbors and now my Mother who has stage 4 breast cancer that has spread to her bones. Both of my neighbors have since passed but we still take care for another neighbor and my Mother-in law. Both my Mother-in-law and Mother had heart valve surgery this past year through the groin. They are both doing well plus my Mother-in-law broke her hip in March. They did a pinning of it and she was in rehab for only 13 days. She is 89 years old and my Mother is 81. So, I really didn’t have time for this TN to come out of remission. My name is Julia.
I am retired not by choice also. I planned to work full time until I was at least 65 and then work whenever I felt like it. Unfortunately, my post 2nd MVD recurrence happened in September 2007 and I have been unable to work since then. At first I thought I might be able to work if the meds controlled my symptoms, but not only did the meds not work…they interfered with my ability to think clearly…definitely not a useful quality for someone giving anesthesia! I was literally forced unto disability. Now it’s almost 10 years later and I am no better off with regards to the TN but also financially, as I was not prepared to retire My bad for poor planning. After my first MVD, I forgot about how debilitating the pain could be and after 5 pain-free years, I thought I was cured! Guess I got careless with having good health. I would be totally screwed except for the fact that I had a good disability policy that I paid into for my entire career. Social security is such a pittance. It pisses me off when I hear elected officials complaining about their salaries and “retirement”. They (most of them) have not a clue what real life is like.
Anyways…Kudos to you and your hubby for taking care of others. I know from experience that is not an easy job…and it seems no one wants to be bothered anymore…even with their own flesh and blood…so bravo to you. It can’t be easy to do while trying to deal with TN. I did not know that Pfizer had closed any of its plants…I thought the entire pharm industry was booming. Were they outsourcing their production?
I have a HS friend that lives in Bristol, Indiana…but I have no idea where that is in relationship to Indy…I just know it’s a smaller town. She is a part-time librarian and writes a blog for some local paper.She also has an online blog called “Yvonne’s Musing”. Are you on FB at all (send me a friend request if you are)? I think you may enjoy reading her articles…they always bring a smile to my face. I am originally from Ohio (Cleveland area) and moved out here to Oregon 12 years ago before my daughter had her first child. She had moved out here with her husband (for his work) about 10 years before that…and I decided I wanted to be closer to her than in Ohio after they finally decided to reproduce when her “clock” started ticking. I also have 2 sons, one still in Ohio and one in Denver. You know the old saying that a son is a son ‘til he takes a wife, but a daughter is a daughter for the rest of your life? Turns out it’s true…lol She now has 2 kids (8 & 11) and they only live 0.5 mile from me. It’s nice to able to get hugs from them…so therapeutic, especially on bad days.
Hi,
I just want to let you know today has been the best day I have had for over 3 weeks. Hopefully the meds are kicking in even though they cause me to have blurred vision and sleeplessness. I go for my test this week and hope for some results. I will keep you informed.
Glad to know you are doing better. I have just had the worst week in a long time. Saw my Dr. yesterday and she increased my antidepressant dose and my pain med. She also wants me to go back to neurosurgery to see about a peripheral nerve stimulator. Did some research on them a while ago and decided against it. But I will revisit it…maybe they’re better by now.
Good luck with your MRI. Keep me posted. Hopefully the blurred vision will be temporary for you.
I had a few good days before I had the worst attach ever. It happened after exercise class and on my way home. I was driving and it kept striking and the burning sensation which I had never experienced before was unbelievable. I managed to get home and suffer for over 30 minutes of continued shocks. I took a drink of water through a straw which has been my mode of drinking for weeks. I received my results from my CTA and MRI and as one would expect there was no abnormalities. The blurred vision is still a problem but is helped with glasses which I never had to wear all the time. It usually subsides a couple hours after I take my medication. I would really like to know what it is like to bite into a sandwich again. That is out of the question let alone sometimes any other utensil. I am sorry to hear it was the worst week you had. I hope the increase dosage of meds have helped you. I see my neurologist on the 27th. They have me on the call in list if they have a cancellation. Keep me posted on how you are doing and I will do likewise on how I am doing.
So sorry your symptoms are getting worse. Don’t be too disappointed by the MRI results…they often do not show anything. My first ones were uncertain, but they went ahead and did the MVD based on my symptoms and poor response to medications. I had almost 9 blissful, pain-free years after that.
What meds are you taking now that you actually find reduce your pain? I am being sent back to see Neurology (square one) and my insurance (Kaiser) doesn’t even have a neurologist that has a special interest in TN, let alone is an expert about it. I feel like it will be a waste of my time and especially my $25 co-pay to see a specialist. Plus they want an MRI…but I question that also. It most likely is not going to show much of anything…and so what? It will not change the course of treatment at all. I am not having a 3rd MVD…too risky at my age. Hope things get better for you.
I am currently on 600mg gabapentin 4 times a day 600mg Oxcarbazepine 3x times a day 150mg topmax 2x day and 20mg baclofen 2x day. It helps with the pain but hasn’t taken it completely away. When I see the doctor he is hoping to get me into the surgeon who did my MVD. I wasn’t surprised by either test which I knew wouldn’t show anything. They likewise found my compressed nerve when they did the MVD. I just hate taking these drugs. I do manage to get a workout in everyday if my face is not acting up. It is the only thing that gets my mind off of thing since it cold out and I can’t be outside. I really hate the cold. I just had an attach a few minutes ago but it didn’t last as long as the last one and wasn’t as intense. My lower lip is one of the trigger points. So you know eating gets to be an issue. I drink protein drinks when I can or at the least soft foods that I can drop into my mouth. I can’t seem to find any of my friends who want to join me on this liquid diet. lol
I finally got an appointment with the surgeon. I go next week on the 25th. It was after I called and got the appointment over my neurologist office. They had been calling for 2 weeks and couldn’t get through and said they had left messages. I called and asked to speak to someone. Once scheduled they called the doctors office to get my records. Miracles never happen. lol They have me on so many drugs right now I can’t function. 900mg of gabapentin 4x days 600mg Oxcarbazepine 4times a day which I don’t take already a zombie 150mg topmax 3x day and he gave Oxycodone which I didn’t fill if I needed it.
I feel like I am on a drunk taking this amount of drugs. At least my doctor allows me to adjust the dosage. I am trying to figure out what I can take that will keep the pain away. Believe the pain is gone with this dosage but I can’t function but I can’t live like that. I will let you know what I find out next week. It is nice to be without the pain not the drug effects.
Just getting over another flare-up and was thinking of you. How did your appointment with the surgeon go? I can sympathize with you about not being able to function when taking those meds. I have tried gabapentin and the newer version (Lyrica, forgot the generic name) several times…and each time it is the same reaction of feeling drunk (dizzy, unsteady) and not being able to think clearly. Additionally, they did not seem to help my pain, although I was never able to get close to a therapeutic dose…but I just could not live like that. This is truly a miserable disease. Anyhoo…wondering how you are doing and what’s in store for your future. Hope you are doing better.
Fran
Sorry to hear about your flare up. It is so aggravating. I got a call today and I am scheduled for a Gamma Knife Radiation on Thursday February 9th. I go for a consultation on Monday. I have reduced some of the drugs so I can function. The drugs leave a aftertaste in my mouth and it is horrible. I have a hard time eating or drinking without a after taste. Salty things seems to be the best. I am looking forward to getting this done and hopefully reducing these meds to nothing. The surgeon did say a second MVD was not a option and this was one of 2 options. The other was the balloon but this had a longer effect and less complications. I will let you know how things go.
Best of luck to you
Good luck, Julia. I hope your Gamma knife procedure is most successful for eliminating your pain! Please let me know how you are doing post-op. I’ll be thinking of you and sending healing vibes out to you next Thursday.
Hello Fran,
Just letting you know I survived the Gamma Knife procedure. It was not bad. The worst part was the halo they put on me. They injected my head with lidocaine to screw it into place. I slept from the Ativan they gave me through most everything. The lidocaine is now working it’s way down my forehead into my eyelids and face. They said it would. They would like for me to keep on my same meds for the next 3 months before reducing them. My equilibrium is a little off at this point. Normal they say plus headaches and tiredness. All which is temporary. I will hope to reduce the meds myself before the 3 months. I hope you are feeling better.
Glad all went well And you are right, that halo was the worst part! I would definitely try to follow their advice and wait for 3 months before you start to taper meds. That gives a longer time for the procedure to do what it’s supposed to do. Take it easy while you’re tired and having headaches and I sincerely hope this procedure eliminates your pain and it doesn’t EVER come back. Please let me know how you are doing over time. I am especially interested if you notice any problems with “scrambled” past memories or new short term memory problems. They say it doesn’t happen, but that was not my experience
Feel better!
