I just had my second MRI in 9 months. Both have been clear. That should be great news except that now my neurologist is hesitant to send me to the neurosurgeon. The infamous Dr.Kaufmann has spoken at a support group meeting I attended and said that most often he does not see anything on the MRI but once in surgery he finds the culprit vessel and deals with the problem.
So basically my question to you is this: If you have had the MVD surgery did the culprit vessel show up on your MRI? I feel back to square one and while I should be relieved I am sad and frustrated.
Patty, all my mris have been basic mris. Not looking for compression. Basic mris to eliminate ms and brain tumours …
In my consult with Dr. Kaufmann he never required a more in depth MRI prior to agreeing to do my mvd. His assistant said that if he wanted one done he would request it prior to my surgery. He does not feel its necessary in my case.
You need to tell your Neuro that you would like the referral to Dr. K regardless of your MRI results. You’d like the consult to inform yourself of your options and get Dr. Ks opinion.
Did you tell your Neuro what Dr. K said at the support group meeting?
You have to be a little pushy with some of these Neuros unfortunately.
Good luck, Mimi xx
I am so angry right now. While I did not want a brain tumour I did desperately want something concrete to be visible so that it could be fixed. I hate being off work, loopy, dizzy, in pain and basically feeling like the village idiot from the medication. I guess I will need to be a bit pushy and hope for the best. This MRI was an indepth one. The neurologist said he did not want to send me to Dr. Kaufman as there was nothing for him to do
That’s not his decision to make. In my opinion Patty.
Well you can just email Dr. K with a short detailed medical history and request his opinion. You can always pick up a copy of your MRI and send him that too.
It may take a few weeks but Im sure you’ll hear back.
(( hugs)) Mimi
PS Dr. Ks assistant did tell me that he often sees compressions on basic mris that other specialists miss…so it wouldn’t hurt to send him your MRI and get a 2nd opinion.
Hi Patty, regardless of your MRI, the only one that can tell you if you are a candidate for surgery is the neurosurgeon. I agree that you should push for a referral from your neurologist if you can. I am assuming you need a referred because of your insurance? I did not need one and even though my neurologist was against my seeing a surgeon, I did so on my own, and am having MVD at the end of the month.
Shindig funny u say that about your side pain my pain startes in my face but went to the back of my neck and down the right side which is my bad side of my face the nerve pain went halfway down my right arm and halfway down the right side of my back I am also on nortripyline only 20 Mg right now but since ive been on it I havnt felt the pain in my arm back or neck! @ patty my first MRI showed nothing my 2nd was a 3Tesla and showed compressions
Dr. Martin, UCLA, didn't see a major issue and sent me to Dr. DeSalles. He said in my case the damage was from the ceiling fan falling and hitting me and it appeared that many small nerves were damaged to the extent that they wouldn't show on the many mri's I had. This was one of the main reasons that the stereo tactic was best for me. While it took two tries, it has made my life so much better, even at the worst of it!! I have learned too that being pushy gets stuff done especially when it comes to drs. thinking it is "all in my head" Keep us posted. May you have an evening filled with no pain! Blessings~~
I did sen an email to Dr.K last nite. I am ready to do my own MVD just so I can bet back to my life. I can manage the pain while on the meds but I can not manage life in a fog. I hope that someone at his office reads my letter and feels inclined to respond. Not the conventional course but...
Mimi said:
That's not his decision to make. In my opinion Patty. Well you can just email Dr. K with a short detailed medical history and request his opinion. You can always pick up a copy of your MRI and send him that too.
It may take a few weeks but Im sure you'll hear back.
(( hugs)) Mimi
PS Dr. Ks assistant did tell me that he often sees compressions on basic mris that other specialists miss...so it wouldn't hurt to send him your MRI and get a 2nd opinion.
The MRI that my neurosurgeon used to find compressed veins was a three dimensional type. Unfortunately, I cannot recall the name of it. My understanding is that it is not a common type and only some MRI facilities can do it. A regular MRI, with & without contrast, showed nothing. The 3D one showed compressions.
Ya know what im just curious of the statistics of people without facial pain on how many normal people that have compressions …I thought that if they did find compressions that I wud be more relieved but that wasnt the case
Hi Patty,
I’m glad to hear you sent him an email. It may take 2-3weeks but you should receive a reply . Unfortunately it has been my experience that we must “do” for ourselves. Doesn’t mean your neuro doesn’t care for you, he’s just following his protocol for referral based on his perceived notion of what kind of TN pain needs referral.
I hope for you that you’ll be able to get his opinion.
Sending positive thoughts my friend,
Mimi
Thanks for sharing your experiences with me. I have another appt to see my neuro on January 30. You have given me hope to keep trying and advocating for myself. Last nite I was so frustrated. How can he doubt that I have TN? Only a month ago he firmly diagnosised me with TN. Like a person would fake this! Onward and upward.
No compressions were ever found in my MRIs. I have had more than 5 done. When the NS went in for my MVD he found 3 nerves being compressed by 2 arteries. My neurologist was skeptical about me seeing a NS and having surgery, but I’m glad I took the chance.
Nope! My top well known surgeon does not do MRI -- uses McGill Pain Scale instead along with patient story - google it and fill it out for your doctor. FIRE your neuro!
Most the time you can't see until you get in there.... during my MVD they found 2 places and took care of them. My neurologist did one intitially to rule out MS / Brain tumor. This is current best practice.
Very often a compression of the Trigeminal nerve by a vein or artery does not show on an MRI. In addition, the radiologist who assesses the MRI may not be all that familiar with TN. The MRI needs to be looked at by a neurosurgeon who has done many MVD's because they can tell much better.
As mentioned there are different types of MRI's. A thin slice, MRI, often called FIESTA ( trade name) is much better at detecting compressions of the TN nerve.
The radiologist who looked at my original FIESTA MRI did not "see" a major compression. My neurosurgeon had no doubt and when he did my MVD he found 2 compressions. Then he fixed them.
Please, see a neurological team that has experience in dealing with TN and MVD. That experience can make all the difference.
Let me know if I can elaborate further. Good luck.
Patty,
I don’t think your Neuro doubts your TN diagnosis, I think he is being cautious about referring you to a neurosurgeon because maybe he feels he and you haven’t tried all avenues for pain relief as yet. Usually I’ve read, that in order to be considered for surgery you need to have tried at least 3 different medication regimens with no success at relief before they’ll consider surgical options.
I think at your next visit you should just reiterate that you would like to get an opinion from a NS on options available to you so that you can make an informed decision before your pain gets out of control and your desperation for relief clouds your judgement.
Hang in there, and don’t write your Neuro off yet.
(( hugs)) Mimi
@Rick, thanks for the great description above of mris and reminder that people need to seek out a neurological team experienced with TN.
I do appreciate all the wisdom you are sharing. Some days I feel very discouraged but when I read all your words of wisdom and experience I feel so much stronger. The second part to this is : when you finally had your MVD and went off of the meds did your sense of balance, steadiness, mental reasoning and word retrieval return? My GP said that usually they do but not always. I would be so, so sad if after all that I still could not work due to those lingering symptoms.
Yes, once off the medication(s), very shortly after MVD. My mental acuity returned. Tegretol ( Carbamazapine) ruined my ability to think. Word retrieval especially. If I had stayed on the medicines I would be disabled.. As Mimi said , generally medicinal treatment is preferred, but if you cannot tolerate it, or it doesnt work, you are certainly within your rights to consider alternatives, and you should.. As my PCP said, before I finalized my MVD surgery date , "you gave it the good ole college try". I did. the medicines were/are lousy, not to mention the possible long term effects. Everyone has to make their own choice but for me, FIXING it was the best way to go.
Continue to ask questions and I believe, most importantly, find medical professionals EXPERIENCED with MANY TN cases.
can anyone tell me what kind of MRI I should have to diagnose /see this correctly. I have had MRA MRIs CAT scans etc… … Just went to a face paralysis specialist in Boston who is sending me for an MRI at MAss Eye and Ear. SHe said it would be very detailed on right side face structure. I am hoping she is doing the right most detailed MRi but how can I be sure? I work in the medical field. You know what I am calling the MRI dept at Boston Hospital and asking what kind of MRI will detail these structures!!! WIll let you know
so her is the inside scoop.
Get your MRI appt before 4 pm during normal work day. WHy radiologist is there.
Radiologist will set the protocol for your test …the structures they will highlight look at more carefully …the day before your test. If you need changes you need a radiologist there to do this.
Day of test ask what protocol they are using. WHat are they looking at in detail. If you have TN they should be looking at trig nerve. If you have TN with ear pain they should look at TN and ear. If headaches they can add on brain studies.
The tech I spoke to said this MRI had four protocols.
1.inner ear
2. trig nerve
3. trig nerve and brain
4. inner ear and brain
the radiologist sets the protocol based on the patients medical problem so dont be shy about speaking to the radiologist.
