Hi Patty, I'm in the same position as yourself. I had my first MRI done 3 months ago and was told there was no abnormalities at all. The doctor basically said I had "idiopathic" TN and just said I'd probably have to take tegretol for the rest of my life and sent me packing! I'm still waiting 3 months on for a referral to a proper neurosurgeon...I had no idea up until recently that the people I had been seeing were actually maxillofacial doctors.
I completely understand how you feel, as odd as it sounds, I felt completely gutted when they said there was nothing to see.
Very interesting replies everyone regarding the MRI's...I'm now going to push for more answers and possibly a 3D one if it's available.
Well Clarey, It is obvious that we are not in this alone. Thank goodness. All the best with your upcoming appointments. Keep me posted. Thanks again for sharing friends.
Thank you Rick...I was gonna see if anyone had mentioned the FIESTA MRI before I did...I am scheduled for one in March. The other MRI said everything was just fine...but WE KNOW BETTER!!! It is to be read by my gonna be neurosurgeon and we will schedule a MVD for the summer.
RickRI said:
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.
Happy to hear you are having the FIESTA MRI. It will help your NS determine "what's up".
One thing I would like to add for all is, irregardless of image results ( there are many false negatives), something is causing your TN pain. Best advice is to make sure you are being seen by medical professionals who have seen MANY cases and can use that experience to help you. Good luck
I had bone pressing on the nerve and no it did not show up on the MRI. The blood vessel did, but the bone is what caused the bigger problem and major surgery complications.
Not sure why you use the word infamous, but that does not sound positive to me. Are you truly sure you want this surgeon to operate on you?
The MRI everyone is thinking of is a Tessa thin slice MRI. It must be done in a machine that has a strength of 3. MRIs can not legally go any stronger than 4 out of concern they will do damage due to the strong magnets used in the machines.
I have a similar situation that you may appreciate hearing about. I have ATN on my right side that I got suddenly with chronic migraines and on one day, we don't know why. I have also had 2 MRI's in the last 10 months, and they can't see anything. (Well, they did, but that is a whole other unrelated story.) I saw a first neurosurgeon and he said I wasn't eligible for anything. I spent more time on this site and started to do research on other surgical procedures that might be available and my neurologist referred me to a new a neurosurgeon. He is younger and more aggressive, willing to attempt surgeries that the older surgeons have basically given up on. He looked at my records and conferred with a TN specialist at another hospital before he saw me. He said that even though there doesn't seem to be a compression in my case, he wants to do MVD! He said that when he gets in there, he will use the Teflon if there is any compression issues. He has also found, more importantly, that he would handle each nerve and just be doing that, the nerve sheath can rebuild itself to be stronger and regenerate. I am going in tomorrow to schedule the appt! Let us know when you make some progress! -Aimee
While compressions often do not show up on MRI the fact the neurosurgeon refuses to order one concerns me. Did he tell you why he made this decsion?
Mimi said:
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 understand your frustration completely! It can be unbelievably depressing and frustrating trying to get help from a Doctor who appears to doubt your description of pain. What I would add to the good recommendations above about being proactive and looking for a more compassionate Doctor is to keep a daily pain impact diary. I did that for 6 months and took copies to my GP, Neurologist, and Neurosurgeon. They appreciated it and it has made a very positive difference in their dealings with me. The pain can be so intense and all incompassing that it can be difficult to describe without sounding like you’re just throwing in every little imaginary thing. Telling someone “when I blink, my eyelashes touching my cheek hurts” made me sound like a total idiot! I think the written word has more impact…Good Luck!!!
QqThanks Rick - Dr Casey - about 8 hrs from me - (yep, the one that ‘wrote the book’) referred me to Dr Tew - has done this procedure numerous times---- I have spoken with the WHOLE team there and they have been absolutely wonderful!! It is still a 4.5 hour trip from home, but feel we are moving FORWARD instead of just standing still!! I am excited and totally nervous!!! ALL the stories, comments, and even warnings have been so helpful. …just hope can wait til June!
RickRI said:
Hi Cris,
Happy to hear you are having the FIESTA MRI. It will help your NS determine “what’s up”.
One thing I would like to add for all is, irregardless of image results ( there are many false negatives), something is causing your TN pain. Best advice is to make sure you are being seen by medical professionals who have seen MANY cases and can use that experience to help you. Good luck
MVD surgery works for the causes of the shocking Typical TN or TN1 pain. If you have the shocking pains the MVD would be the way to go, but if not the surgery could make your ATN worse. You mentioned something did show up on your MRI. Is this something that could be helped by surgery? I have heard of suborbital MVD helping mirgranes, but have not heard of it helping ATN.
pinkpdx said:
I have a similar situation that you may appreciate hearing about. I have ATN on my right side that I got suddenly with chronic migraines and on one day, we don't know why. I have also had 2 MRI's in the last 10 months, and they can't see anything. (Well, they did, but that is a whole other unrelated story.) I saw a first neurosurgeon and he said I wasn't eligible for anything. I spent more time on this site and started to do research on other surgical procedures that might be available and my neurologist referred me to a new a neurosurgeon. He is younger and more aggressive, willing to attempt surgeries that the older surgeons have basically given up on. He looked at my records and conferred with a TN specialist at another hospital before he saw me. He said that even though there doesn't seem to be a compression in my case, he wants to do MVD! He said that when he gets in there, he will use the Teflon if there is any compression issues. He has also found, more importantly, that he would handle each nerve and just be doing that, the nerve sheath can rebuild itself to be stronger and regenerate. I am going in tomorrow to schedule the appt! Let us know when you make some progress! -Aimee
I felt the exact same way when I had my MRI. While I don't want a tumor, a tumor is visible and has a straight forward treatment. TN has a, "Try this an I hope it works" treatment.
Patty said:
Thanks for your prompt response Mimi,
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
