I’m brand new to this wonderful site. Here’s my story:
I was diagnosed after a long battle of figuring out what this horrible pain was when I was 19 years old. Since then I have been to two neurologists. My first one got me an MRI and ruled out MS and Tumor possibility. He told me it was likely that I had a blood vessel or artery pressing on the nerve. He prescribed me carbamazepine 200 mg and sent me on my way. I took them for a week and my attacks DISAPPEARED! I thought I was cured … I (unknowingly) went into remission for almost 2 years. It hit me again in February of 2015, at work. I had to be sent home because I couldn’t go a minute without an attack. I started taking the old prescription for tegretol and made a follow up with my neurologist… and he was booked for 3 months! Well, before getting to see him again…I went into my second remission… this year around late January I starting having tinges and by the beginning of February I was having extreme full blown attacks again. I made it a point to see a NEW neurologist… and she again, gave me medication but it wasn’t what I had before … this was carbatrol carbamazepine CAPSULES not tegretol carbamazepine TABLETS. I didn’t question it and I took exactly how it was directed. It relieved most of my pain after about a week so I continued to up the dose as advised and then I had A TERRIBLE reaction to this medication. Fever, chills, broke out into sores in my mouth; awful. So I made an emergency appointment with my neurologists assistant (my neurologist was on vacation) she told me to TAPER IMMEDIATELY and gave me a prescription for baclofen and klonopin. I am currently weening off the carbatrol and taking the baclofen and klonopin …and unsure of what to do next. I’m hoping this group can help me cope and give some answers. I am only 23 and I just want my life back.
I want the MVD surgery so badly. I am in the process of looking for a neurosurgeon that accepts my insurance to do the procedure. My insurance is Anthem Blue Cross/ Blue Shield. In my desperate searches online I have discovered the Cleveland Clinic, in Ohio. I live about 3 hours away. On their website there’s a doctor that claims he does the surgery I need…and accepts my insurance. Does anyone have any MVD expieriences with the Cleveland clinic in Ohio? I am so distraught and dealing with terrible twinges every day I’m tapering from this awful carbatrol. I need some help. Anything
please.
Please don’t rush into an MVD. There are lots of other medications out there, and I think it is very possible that one will work for you, and also very possible you can go into remission again. For instance you could try amitryptiline, lyrica, gabapentin, oxcarbamazepine, etc…as well as topical treatments like lidocaine.
Going in to look for a compression, when one is not obvious on the MRI, sounds very risky to me, especially for someone your age. Most MVDs don’t seem to head off the pain forever, and there are so many terrible side effects that can happen from any surgery of this type.
I know how hard it is to be patient at all when dealing with this, but find a neurologist that you can trust and communicate with, and push them to trial medications until you find something that works. I’m sure you will eventually. In the meantime, take very good care of yourself and keep your diet top notch, perhaps consider supplements, so that your nerves have what they need to heal.
If you look hard enough I’m sure you will find a surgeon who will love to take you and your insurance companies money but BC/BS has some pretty strict requirements for MVD as it is now considered an elective procedure by most of the Medical Community so their approval is far from a given. Andre Machado is brilliant but I don’t believe MVD is something he promotes or does The cleveland clinic will not do an MVD unless the MVD Protocol listed here is followed and met:
Sequences
T1
sequence: whole brain axial and sagittal (volumetric when possible)
purpose: anatomical, brain screen
T2
sequence: axial, limited to posterior fossa (medulla to the upper pons) with thin slices (e.g. 3D CISS and FIESTA)
purpose: assess the trigeminal nerves from their origin at the mid pons anteriorly, through the prepontine cistern until the Meckel’s cave (trigeminal ganglion)
the most common cause of trigeminal neuralgia is an enlarged looping artery (most commonly the superior cerebellar artery) or vein pressing on the trigeminal nerve at the cerebellopontine angle, which is best depicted by this sequence
FLAIR
sequence: whole brain axial
purpose: white matter signal abnormality such as in multiple sclerosis
T1 C+ (Gd)
sequence: axial and coronal
T1 C+ (Gd) fat sat considered in at least one plane
In other words unless they find an enlarged looping artery (most commonly the superior cerebellar artery) or vein pressing on the trigeminal nerve at the cerebellopontine angle, they and just about any other legitimate medical center will NOT consider MVD nor will most insurance companies approve it if it doesn’t meet the defined protocols. MVD is to correct this particular situation and no other. @Ziggy gives advice. As you read through this site you will find the few who have found a meat market neuro surgery practice and gotten an MVD without those criteria being met have had bad results. The success of MVD when those conditions are met doesn’t dramatically exceed the known “Placebo Effect” of any surgery and the problems return within a few years (usually with a vengence) If MVD is going to work there is usually no doubt.
Andre Machado does treat Facial Pain, but there are a large number of other procedures that can be done
I appreciate both of your comments. I thank you for your opinions as well… I just find it so hard to grasp that I will be on medication that makes me feel awful… with terrible side effects …and generally makes me feel like another person… for the rest of my life. It makes me so depressed and I lose so much hope over it. I just had my neurologist office fax over a referral to Dr. Machados office… and they said they would be in contact with me about making an appointment. @ziggy@ModSupport on his website under the specialties tab it lists MVD…so I don’t know. …I’ll attach a picture. The last MRI I had I feel like was not right… I would love to have a new one while I’m having active attacks/twinges. What else could be happening if I do not have MS or a tumor…? I have to have a blood vessel or artery pressing against it right? I’m so new to all of this … and I just want relief more than anything in my life. I’m so exhausted and scared. My fiancé has been here trying to cope with me but I know he’s tired too… as I would be if I were him. Since I’ve been weening off the carbatrol I am feeling a lot better mentally and physically …but I’m having twinges (for the last 3 days) and it’s scaring me. Do twinges always mean an attack is inevitably coming? Do you of know any anticonvulsant drugs specifically that are more “gentle” than carbatrol in terms of side effects? I think I am hyper sensitive to it. Could you possibly tell me any other procedures besides MVD that could give me reliefs and how I could go about looking into them with a doctor? I’m so sorry for all the questions. I have been pretty much dealing with this alone as none of my family or friends really know what this disease is…I know they try to understand and my fiancé does as well… but I still feel very alone and very scared. I am so thankful that I came across this site and was able to join this wonderful community. Thank you so much … I just need all the information you can give me… advice …anything really. I am so panicked… it’s very hard to eat, talk, & drink as I am scared my twinges will turn into a full attack. Any tips on that? I’ve tried using straws and I’m still getting twinges. Thank you both again, so much. Heres the pic from the Cleveland Clinics website:
The biggest thing that will help is an accurate history. For example. Did this thing just start, was there an event etc. At 23 you are a prime age for Wisdom teeth (3rd molar problems) Was there an extraction? Should there be? Jaw damage (TMJ) isn’t unusual either way. A detailed list of every trigger etc.
When you get in you may or may not see Dr. Machados but you will for SURE see his team of residents who will leave no stone unturned and ask more questions than you can imagine. This frankly is a good thing. My experience is if you overwhelm the residents with information and history the Big Guy will sort it out…
As I added to my post. he approaches TN from a multitude of ways.
@ModSupport I am not exactly sure how it started. I would love to find out why. I’ve had a lot of dental work in my past, as well as 3 surgeries. Two on my neck to remove cysts on the thyroid, and one more under my tongue to remove a calcium deposit in my salivary gland. I ALSO was told I had TMJ by my dentist before this TN pain ever started… as my jaw would pop and click severely when my mouth opened and closed. I hope I get an appointment and they find out the root of my problem, and can give me the best option on how to maintain. I just want someone who actually understands my disease and can provide insight, and leave “no stone unturned” like you said. I am in a poor area in Ohio. My neurologist is located in Pennsylvania, 48 minutes from me. The Cleveland Clinic is almost 4 hours from me …I will drive anywhere to get actual answers and help. I appreciate all of your help. You have no idea how comforting it is to know there are other people that deal/have dealt with this monster of a disease and I’m not alone.
Cheyane, I don’t have the classic trigeminal neuralgia, I have ATN, which is a different kind of torture. But there are many here who deal with the very same issues that you have, so please take some time to check out some of the posts, and you will see that you are not alone.
I think the fact that you have gone into remission a few times, and had a good response to a med in the past, bodes very well for you. There are many meds that are not so brutal as carbamazepine, and over time the side effects of any of them lessen. Hopefully you would not need to be on anything forever.
Focus right now on getting into a neurologist (I’ve started booking two at one time, with the plan to cancel one appt.) and reading everything you can get your hands on about this awful disease and all the treatments available.
@ziggy Thank you so very much. I have found so much comfort in this group! I feel like I’ve learned so much already from reading the posts in here. I am SO happy I have found this website.
I am sorry but I disagree highly with the opinion that one should keep taking toxic pills that have bad side effects, do nothing for my pain at least, and do no better than mask true torture laying in wait.
This was my mistake after first surgery to brows, then way too much needlng(nerve blocks that barely worked), meds after meds then helped some & no longer work because they were hiding real extent of at least my nerve damage which is horrific.
Cheyane I am so sorry to hear you have this so young, I was in my late 30s, that I thought was young enough. I am glad you have seen some remissions, I have not been so lucky there. I have GPN. I use hot tubs, Daith piercings and acupuncture for relief in addition to my medication which is Topomax. I’m with you I am long overdue for getting my life back.
I had my first MVD at UPMC in Pittsburgh by Dr. Peter Janetta (RIP). Successful for almost 9 years. Post op care was wonderful in the neurosurgery unit! I then went to the Cleveland Clinic for a repeat MVD by Dr. Joung Lee. Excellent surgeon and had pain relief for 9 wonderful months before it came back. The post op care I had there was horrible. I was transferred to a regular room and treated like I had just had minor foot surgery or something. Although the surgeon was great and highly recommended (he had operated on several friends of mine), compared to the care I received in Pittsburgh, I would never go back to CCF.
I would highly recommend reading the book “Striking Back” and check out UPMC’s TN program/Drs. http://www.upmc.com/services/neurosurgery/brain/conditions/cranial-nerve-disorders/conditions/Pages/trigeminal-neuralgia-and-atypical-trigeminal-neuralgia.aspx
So nice to hear about your success! Sadly, my insurance is currently feuding with all UPMC affiliated hospitals and I wouldn’t be covered for surgery there I don’t believe. I have Anthen Blue Cross/Blue Shield. I believe my only hope is the Cleveland Clinic. I reached out to a Dr. Machado but I believe when and if I get an appointment (fingers crossed) they can point me to a surgeon who best fits my needs. I am just so exhausted mentally and I physically feel trapped in my own mind/body. Something’s gotta give at this point. I am trying to keep hope but it’s proving to be so difficult. I would give anything for a pain free day. It’s extra bad today as I am currently transitioning to gabapentin from Carbatrol because it gave me a severe reaction (fever, cold sweats, ulcers in my mouth) … I hope this medicine in combination with baclofen can provide some relief if only for a while. I would give anything. I really want the MVD but I am scared … all I know about my MRI is that the risk of MS and and tumor were ruled out. I don’t know if there was a compression shown or not… will they do a MVD if no compression is present on an MRI?
I would like to clarify: I am not scared of MVD I am hopeful that I can somehow get the surgery. I am scared of not being able to get the surgery if there is no compression shown on my MRI. I am limited in options of surgeons it feels like… and I have heard of surgeons finding compressions once they open up the skull… I am just hoping I can locate a surgeon who will do the surgery for me in hopes of finding a compression and not just deny me because there isn’t one shown on an MRI. I feel so stuck and scared as I don’t really know how to handle insurance companies and stuff like that… I’m lacking in education in that aspect. I need help from someone who can talk to my insurance and find out for sure who I am covered for and what I am covered for. I want this MVD so bad… I want just a CHANCE to have my life back. I’m 23 and I feel like my life is over.
You can contact the department at UPMC and they will automatically let you know about your insurance coverage. The whole department is full of wonderful people who go out of their way to be helpful. I felt like I was treated as a real person with individual and unique needs there…and very carefully monitored post=op. Not to bad-mouth the Clinic…they do great things there…but I felt like merely a number and no one cared about my specific needs. Once I got back to my room from recovery room,I was basically left on my own to deal with puking, needing help etc. It was hell. A friend of mine had brain surgery there after I did, and I advised her to hire private duty nurses (which she did). To this day she claims that advice saved her. I do know that I would not be a patient there again without a private duty nurse taking care of me. Keep me posted on how you are doing. Is the Gabapentin helping you? I had bad side effects and could never get to a therapeutic dose. Wishing you some relief soon.
Hi Cheyane . . I was diagnosed with TN just over 4 years ago. I suffered with the pain and almost as much with the drug side effects so I understand what you are saying. They altered my life in a way I couldn’t live with. I ended up having a successful MVD 9 months after my first symptoms. I was lucky to be diagnosed very quickly and went through many doctors on my path to having surgery. I had two MRIs/MRAs and with those two radiologists, two neurologists and two neurosurgeons couldn’t see a compression (the second neurosurgeon said he saw something “suspicious”). After doing a ton of research, I traveled out-of-state to see Dr. Ken Casey (author of “Striking Back”) and he clearly saw two compressions. He did my successful MVD surgery and I have been pain free and drug free now for 3 1/2 years. I would do it again in a heartbeat. It gave me back my life. Please be thorough in your search for a talented neurosurgeon who is a true TN expert. There are several out there who are very good. Dr. Casey is in the Detroit area which would not be too far from you. I’m going to give you a link here to a story I wrote and published about my TN journey and how I made the surgery decision. I hope it will help you and others. Trigeminal Neuralgia: How I Survived the Worst Pain Ever
Hi,
I’ve been to Paris, Oregon, Johns Hopkins and now Cleveland Clinic. I have your same insurance. I finally feel I have real help at Cleveland Clinic. You might get surgery. But, see Dr. Mark Stillman, MD the best neurologist. He will bring in neur, pain docs into room and all will talk with you. You can make a video exam for $49.00 that you pay for directly and a few of these docs will speak to you directly on your tablet, smart phone or Computer. There are more options than MVD. I did this at Hopkins and it did not work. You are SO young, I am very sorry. But truly this is the place. You can even stay at the Holuday zinc on campus reasonable, rent a microwave for $15 and bring your own food or heat up your pad for your face. Dr. Stillman has a 23 year old patient now. I saw him full of tears eyes. He treats the whole of you. Use my name: Jean Fagan. If so get cut off so will return with his number. Hang in. You will use different mess, you will do different things but hang on. New things are coming. Technically and in drugs. I have been working in medicine all my career. Even call me 708-■■■■■■■■
Thank you so much. I really appreciate this. I am waiting to hear back about the appointment scheduling for Cleveland Clinic … they told me a few days ago that I would hear back by this passed Friday so tomorrow I am going to call them again. I will tell them I also heard about the dr you mentioned. Thank you so so much.
Have you ever had an infusion ( a cocktail of drugs taken through an IV to cut the pain or cool it off so they can then evaluate best options? This helps many even me. It does not take long to get into this which is usually for 3 days for 4 hours. You read, sleep or listen to your music. You must sit in the chair are alone but anyone visiting with you can come in and out quietly once a half hour. There are other patients in there too with high pain from TN or headaches.
Jean
Please excuse typos and brevity as this was sent from my iPhone and honor my request for confidentiality if written. Thank you.
…I’ll attach a picture. The last MRI I had I feel like was not right… I would love to have a new one while I’m having active attacks/twinges. What else could be happening if I do not have MS or a tumor…? I have to have a blood vessel or artery pressing against it right? I’m so new to all of this … and I just want relief more than anything in my life. I’m so exhausted and scared. My fiancé has been here trying to cope with me but I know he’s tired too… as I would be if I were him. Since I’ve been weening off the carbatrol I am feeling a lot better mentally and physically …but I’m having twinges (for the last 3 days) and it’s scaring me. Do twinges always mean an attack is inevitably coming? Do you of know any anticonvulsant drugs specifically that are more “gentle” than carbatrol in terms of side effects? I think I am hyper sensitive to it. Could you possibly tell me any other procedures besides MVD that could give me reliefs and how I could go about looking into them with a doctor? I’m so sorry for all the questions. I have been pretty much dealing with this alone as none of my family or friends really know what this disease is…I know they try to understand and my fiancé does as well… but I still feel very alone and very scared. I am so thankful that I came across this site and was able to join this wonderful community. Thank you so much … I just need all the information you can give me… advice …anything really. I am so panicked… it’s very hard to eat, talk, & drink as I am scared my twinges will turn into a full attack. Any tips on that? I’ve tried using straws and I’m still getting twinges. Thank you both again, so much. Heres the pic from the Cleveland Clinics website: 
