I would like to know how many of you had an MRI of the brain stem to confirm enlarged blood vessel pressing on the 5th cranial nerve before having surgery or as part of your diagnosis process with your neurologist or neurosurgeon. I just had one recently which was suggested by both my pain mgt neurologist(referred for 2nd opinion) & neurosurgeon. Prior to this 2nd MRI, my neurologist did a frontal brain MRI to rule out MS or any other neurological problems about 1 year after my initial TN diagnosis
I would be interested to see if this is a standard practice for all TN patients. Additionally, I was wondering if ATN versus TN patients have different results from their MRIs.
Referral for high resolution MRI is "becoming" standard in chronic face pain, though I don't believe it is universally practiced as a mandatory best practice standard. The procedure which has the best chance of localizing nerve compressions is a thin-slice (sub-millimeter) MRI with special weightings on certain of the device magnets, to generate maximum clarity in the area of the brain stem. Images should be processed both with and without contrast agent, and a 3-D map reconstructed after the procedure is finished.
In patients with ATN, it is less common to find compressing blood vessels than in patients with Type I "classic" TN symptoms. However, about 10-20% of those patients who receive an MRI do not show discernable compressions before an MVD procedure finds them during the exploratory phase of the surgery.
Red, thanks for the details and your feedback on my general discussion topic, Brain Stem MRI. My MRI was a high resolution processed with & without contrast agent. Your information comparing ATN & TN patients along with results noted that 10-20% of MRIs done on ATN patients do not show any discernable compressions prior to MVD is useful information for our "Living with TN" family!
One nuance, James: I don't have the MRI "false negative" stats isolated for ATN vs TN patients. My instinct is that ATN patients may actually have fewer "findable" vessel compressions than TN patients. The causative mechanisms in ATN are not as well known as for TN, but from what I've read and heard from patients, there seems to be a suspicion or intuition on the part of medical experts, that the mechanisms which cause ATN can be different in character from those which cause TN -- and possibly "systemic" or "distributed" along the nerve rather than "discrete" as a vascular compression is.
One thing that is promising, however, I've seen two small-series outcome reports in the past year that quote comparable outcome success statistics for MVD when used with ATN patients and TN patients. Those papers contradict a general trend on the part of many neurosurgeons, to recommend against MVD for ATN patients. The references are captured in our Face Pain Info tab on the page menu above, in the section on treatments for TN and ATN. And I've elsewhere drawn these papers to the attention of the membership here, for serious discussion with their doctors and surgeons before a final decision is made on the viability of MVD for those whose pain patterns include ATN symptoms. Might be worth a read for you.
Red, I will check out the "Face Pain Info" tab. Thanks for all of your feedback. You are a great resource my friend for all of us. Keep up the outstanding work!
There are lots of different kinds of MRI tests and boy are they expensive. I had the standard rule-out MS kind of MRI a few years ago, but it doesn't show compressions. My first neurologist initially refused to order the MRI/MRA series that shows compressions. After I begged, she relented and my results showed what they initially thought was a very deep but tiny schwannoma. The first neurosurgeon I saw refused to consider surgery in that area and referred me for a fiesta MRI which apparently shows more detail. The surgeon I finally found to perform my MVD looked at all of the tests before determining that I was a candidate for the type of surgery he performed. If you can have a fiesta MRI at the beginning of this journey, it will decrease the need for at least two other diagnostic MRIs. My surgeon explained that a compression found on MRI puts you into the TN category and a negative MRI puts you into the ATN category. I had a so far successful MVD last November based on my results. After the surgery my GP ordered another kind of MRI to assess post op bleeding/swelling to see if a stroke was the cause of post op weakness on one side. Good luck with this process - I hope your tests show something that is repairable.
Do you mind if I ask how old you are? I was told that at my age, my brain is so large that they would not be able to see "in there" to be able to tell if there is a vein compressing on the nerve. In your 40s, your brain starts to atrophy and only years later would this be possible. You don't look that old to me and I am a bit frustrated. Was this possibly because of insurance? I'm just a bit frustrated.
I am 47 now. I’ve never heard of the too big brain stuff but I do know that many neurologists don’t have much experience with TN. My first had not even heard of the endoscopic version of the MVD and did everything she could to keep me from having an advanced MRI to determine if I was a candidate. She even told me that suicide was the typical progression of the disease when all meds fail. It might be helpful to look for a doc with experience that respects the research you have done and is willing to let you be an informed co-pilot. This is an extremely complicated disease and there are lots of treatment options out there and unless your doc specializes in TN, it it unlikely that they understand it all.
Debbie, whoever made that statement concerning your brain being over-large was grossly incorrect or uninformed. If you're still with this doctor, fire him or her and find somebody better trained. And Shelly, your first neurologist should have been reported for medical malpractice to the appropriate State Board of Medical Examiners. Your insight on specialists is quite apropos. I sometimes suggest to patients who are interviewing a new doctor that they ask how many chronic face pain patients are currently in the doctor's practice. If the answer is anything less than 10 to 20, then the appropriate response may be to thank the doctor for their time and head for the door.
Debie, I am 58 yrs old and I agree with both Red & Shelly on their advice regarding your current neuro... fnd another one after who is experienced in TN. I did have an MRI intially to rule out MS or any other medical issues requested by my neurologist before getting a 2nd opinion with a Pain Mgt neuro who referred me to a neuro surgeon who has done 25 + MVD surgeries annually over the 5-7 years. Best of luck with your search. This is a complicated illness and you need a competent & experienced neurologist who is committed to his patient's best interests.
God bless you!
Jim
Debbie said:
Do you mind if I ask how old you are? I was told that at my age, my brain is so large that they would not be able to see "in there" to be able to tell if there is a vein compressing on the nerve. In your 40s, your brain starts to atrophy and only years later would this be possible. You don't look that old to me and I am a bit frustrated. Was this possibly because of insurance? I'm just a bit frustrated.
Thank you all. I didn't mean to make this post about me, but I was floored when I read what she said. I think I will be interviewing a new Neuro Surgeon at some point. He does seem to have a lot of experience but I believe he is very conservative and I guess I know why. Unless I just completely misunderstood - I am on those ugly meds. I guess I could clarify with him, but I'm pretty darn certain that is what he said. Thank you all again.
Shelly, thanks for all of your feedback on you MRIs. I need all of this information to make an informed decision on whether to get the MVD surgery. The last MRI did confirm a blood vessel was compressing the 5th cranial nerve and I would be a good candidate for the surgery. My neurologist thinks I should take the conservative approach and continue with medications. I tend to agree with him as long as the meds control most of the pain. How are you currently doing?
Jim
Shelly Michell said:
Hi Jim,
There are lots of different kinds of MRI tests and boy are they expensive. I had the standard rule-out MS kind of MRI a few years ago, but it doesn't show compressions. My first neurologist initially refused to order the MRI/MRA series that shows compressions. After I begged, she relented and my results showed what they initially thought was a very deep but tiny schwannoma. The first neurosurgeon I saw refused to consider surgery in that area and referred me for a fiesta MRI which apparently shows more detail. The surgeon I finally found to perform my MVD looked at all of the tests before determining that I was a candidate for the type of surgery he performed. If you can have a fiesta MRI at the beginning of this journey, it will decrease the need for at least two other diagnostic MRIs. My surgeon explained that a compression found on MRI puts you into the TN category and a negative MRI puts you into the ATN category. I had a so far successful MVD last November based on my results. After the surgery my GP ordered another kind of MRI to assess post op bleeding/swelling to see if a stroke was the cause of post op weakness on one side. Good luck with this process - I hope your tests show something that is repairable.
Its funny Jim - you take the conservative view that you would like to stay on the meds as long as they continue to work. I am on the other side of the coin. I am just praying and hoping that my next MRI shows the compression so I don't have to beg and plead to get the MVD. I just can't see myself being on these meds for the rest of my life when there is a possibility of fixing the problem. I know the MVD might not work - but I'm ready to jump at the chance. Different perspectives!
I was in the same dilemna as you are with the meds. I didn't want to explore brain surgery if the meds were working and I had lulled myself into believing the meds would work forever. Then they stopped working and they added others and those didn't work, so I was desperate and really in bad shape after losing 25 lbs and being unable to even drink water. The surgery itself was a good experience, I had the minimally invasive kind. Out of the hospital in 48 hours, double vision for a couple days but left side leg/foot/arm weakness with clumsiness, instability, poor manual dexterity and my right arm was ice cold. I found out later a disc in my neck became bulged probably due to positioning in the halo and that has caused the right arm issue. I have had PT and OT for the left side problems which has helped a lot but still doesn't feel 100% and gets worse when I am tired. The really important thing is that I have had no facial pain, no electric shocks so that appears to be repaired and stable. I still have days of brain fogginess mostly when I'm tired and don't yet feel like I am strong and healthy again but I'm working on it and every day I am grateful that my surgeon was so skilled and I have my life back. My insurance ended up denying payment for my pre-authorized surgery so this has been a very expensive and difficult emotional process. But, if I had to make the choice again, I would still definitely choose the surgery. I would highly recommend that you research your surgical options while you are stable on the meds because as I found out things can go downhill fast and if it does, you need to be educated and ready for a Plan B.
Elaine - I totally get what you are saying. I was soooooo excited when my neurologist called to tell me she thought I had a schwannoma (really was a compression) because it was something that was fixable! I'm sure the neurologist and all of my co-workers thought I had completely lost my mind but I knew it was the answer to my prayers.
Shelly, I am glad you had a successful surgery and have NO facial pain. Hoorah!!!! It must be such a fantastic feeling. I am so happy for you. I agree that I need to complete this research on my surgical options as a plan B if the meds stop being effective. Do you mind me asking what type of surgery you had? I know my neuro surgeon discussed 3 options that he would recommend. I will continue to pray for your complete recovery. God bless you.
Jim
Shelly Michell said:
Hi Jim,
I was in the same dilemna as you are with the meds. I didn't want to explore brain surgery if the meds were working and I had lulled myself into believing the meds would work forever. Then they stopped working and they added others and those didn't work, so I was desperate and really in bad shape after losing 25 lbs and being unable to even drink water. The surgery itself was a good experience, I had the minimally invasive kind. Out of the hospital in 48 hours, double vision for a couple days but left side leg/foot/arm weakness with clumsiness, instability, poor manual dexterity and my right arm was ice cold. I found out later a disc in my neck became bulged probably due to positioning in the halo and that has caused the right arm issue. I have had PT and OT for the left side problems which has helped a lot but still doesn't feel 100% and gets worse when I am tired. The really important thing is that I have had no facial pain, no electric shocks so that appears to be repaired and stable. I still have days of brain fogginess mostly when I'm tired and don't yet feel like I am strong and healthy again but I'm working on it and every day I am grateful that my surgeon was so skilled and I have my life back. My insurance ended up denying payment for my pre-authorized surgery so this has been a very expensive and difficult emotional process. But, if I had to make the choice again, I would still definitely choose the surgery. I would highly recommend that you research your surgical options while you are stable on the meds because as I found out things can go downhill fast and if it does, you need to be educated and ready for a Plan B.
Elaine - I totally get what you are saying. I was soooooo excited when my neurologist called to tell me she thought I had a schwannoma (really was a compression) because it was something that was fixable! I'm sure the neurologist and all of my co-workers thought I had completely lost my mind but I knew it was the answer to my prayers.
Elaine, I may still have the surgery, but right now is not a good time due to my wife's illness and I still have a daughter who needs my attention. My concern is if I had a poor result then I may be worse than I am now and I would still have all of the responsibilities. At least now, I can still function with the meds, albeit, I can't do my management job due to the med side effects. Best of luck with your MRI and I hope you are a surgical candidate for MVD. Stay in touch and I will pray for your best result. God bless you.
Jim
Elaine Iles said:
Its funny Jim - you take the conservative view that you would like to stay on the meds as long as they continue to work. I am on the other side of the coin. I am just praying and hoping that my next MRI shows the compression so I don't have to beg and plead to get the MVD. I just can't see myself being on these meds for the rest of my life when there is a possibility of fixing the problem. I know the MVD might not work - but I'm ready to jump at the chance. Different perspectives!
Thanks Jim. I too hope for the best for you with regards to your med options. I recently made a change with my meds and have had some improvements myself
Hi Elaine,
It’s been a long time since I got on this site. I hope you are doing well and getting relief. I’m now retired. I had to go on disability at 58 because my job caused too many pain breakthroughs. The Trileptal(oxbazapine) is effective for a majority of my facial pain. Enjoying retirement. Jim
I’m new here. My ct and mri came back fine yet I am in lots o pain. Carbamazepine helps a lot. Thought it was my teeth or a sinus infection until it moved all around my face. Is there a test that will be definitive ?