[Waterfin]

Im new to this forum.

I've developed and been diagnosed with TN since Jan this year. I jumped the 6 month waiting time for a neuro appt by going private initially.

The neurologist agreed it sounded like TN, transferred me to his NHS list and sorted out an mri/MRA for me. I got the results yesterday.

The letter confirmed that I have an artery in contact with the trigeminal nerve, most likely the cause of my pain. I will be referred to Prof Eldridge at Walton who will tell me that surgery isn't worth pursuing as I am mostly managed by my medication.

But it also says that it shows several high signal areas in the white matter in both sides of my brain. It says that they may indicate inflammation or a vascular problem but that the dr who looked at the scan couldn't tell. I'm to be admitted to Walton as a day patient to carry out further tests including a lumbar pictureand blood tests.

I'm not sure what to make of it. I'm not sure what the lumbar puncture is to test for, apart from to try and rule out ms.

Any ideas welcomed .

[justjane37]

Hi,

Sorry you are going through all of this. First of all if they found an artery in contact with the trigeminal nerve you are, in a sense, very lucky. Most times this cannot be seen on an MRI, even if there are compressions.

As for you not being a candidate for surgery--I would question that. How long have you had TN? What type of TN do you have--Type 1 or Type 2? There is a video by Dr. Ken Casey that you should watch. Google "the tides of neuropathic pain". It is an ask the doctor series. It is two hours long but VERY informative. TN can be progressive and if surgery is an option, the sooner it is done the better your chances of complete recovery.

I do not know a lot about MRI. I think the areas of white matter can be due to MS but there are many other reasons they could be there. So the spinal tap is to test for MS. How old are you? Have you had any other neurological symptoms??

It sounds like you are being well taken care of and following all of the right steps for a proper diagnosis. Have you found medication that has helped? Are you still in pain?

Originally Posted by Waterfin

Im new to this forum.

I've developed and been diagnosed with TN since Jan this year. I jumped the 6 month waiting time for a neuro appt by going private initially.

The neurologist agreed it sounded like TN, transferred me to his NHS list and sorted out an mri/MRA for me. I got the results yesterday.

The letter confirmed that I have an artery in contact with the trigeminal nerve, most likely the cause of my pain. I will be referred to Prof Eldridge at Walton who will tell me that surgery isn't worth pursuing as I am mostly managed by my medication.

But it also says that it shows several high signal areas in the white matter in both sides of my brain. It says that they may indicate inflammation or a vascular problem but that the dr who looked at the scan couldn't tell. I'm to be admitted to Walton as a day patient to carry out further tests including a lumbar pictureand blood tests.

I'm not sure what to make of it. I'm not sure what the lumbar puncture is to test for, apart from to try and rule out ms.

Any ideas welcomed .

[Waterfin]

Thanks for your reply. I've only developed TN since Jan this year. I think it's typical TN. Pains when unmediated would be severe and sustained for a few minutes at a yield, like labour pains. I couldn't eat or drink hot things, brushing my teeth or even breathing was awful.

Happily, although carbamazepine made me ill, I'm tolerating gabapentin pretty well and am 95%pain free. Completely pain free on warm, sunny days.

I'm happy it shows compression as it's good to have an official cause for the pain.

I have a good friend who developed TN a few months before I did and I've followed her through the route of being diagnosed by the same gp, being referred to the same neurologist at the local hospital, being sent for an mri at Walton, then being referred to Eldridge upon the mri results.

She went expecting to be a good candidate for surgery. Younger than 40. Eldridge dashed her hopes straight away. She was too young for surgery. He wouldn't consider it until she's exhausted all medication first. He said time from him seeing someone initially to then operating was about 7 years. I will see him in the next couple of months and expect to be told the same.

I have a small twitch from time to time, but I think that's a side effect of the medication, not any neurological symptoms. I also have memory issues, but again I think that's the meds.

[justjane37]

I am glad that you have found medication that works for you and it sounds like you are being well taken care of. Funny that you mention being pain free on warm and sunny days--I have noticed my pain is always worse on stormy days. It does sound like you have Type 1 and that is why I am curious about the surgery. Please look up that video that I mentioned. You are in the UK? I am in Canada and the video is by a doctor in the States. Dr. Casey is a leader in TN research and his views are not shared by all. He states that Type 1 TN if operated on within the first few years have an 80 to 90% success rate.

Many doctor's are not up to par on the latest research that is being done and I am not sure how your medical systems favours in the UK. TN can be progressive and many people have a difficult time controlling the pain as time goes on. Just watch the video.

I have Type 2 Bilateral TN so my experience is very different from yours. It is important to have MS ruled out first which your Dr. is doing. You are also fortunate to know someone that is going through the same thing.

I am going to send you a private message with some more info.

Originally Posted by Waterfin

Thanks for your reply. I've only developed TN since Jan this year. I think it's typical TN. Pains when unmediated would be severe and sustained for a few minutes at a yield, like labour pains. I couldn't eat or drink hot things, brushing my teeth or even breathing was awful.

Happily, although carbamazepine made me ill, I'm tolerating gabapentin pretty well and am 95%pain free. Completely pain free on warm, sunny days.

I'm happy it shows compression as it's good to have an official cause for the pain.

I have a good friend who developed TN a few months before I did and I've followed her through the route of being diagnosed by the same gp, being referred to the same neurologist at the local hospital, being sent for an mri at Walton, then being referred to Eldridge upon the mri results.

She went expecting to be a good candidate for surgery. Younger than 40. Eldridge dashed her hopes straight away. She was too young for surgery. He wouldn't consider it until she's exhausted all medication first. He said time from him seeing someone initially to then operating was about 7 years. I will see him in the next couple of months and expect to be told the same.

I have a small twitch from time to time, but I think that's a side effect of the medication, not any neurological symptoms. I also have memory issues, but again I think that's the meds.

[Waterfin]

Thanks again Jane. And thanks for the messages. I cannot figure out how to PM you back, despite having accepted you as a friend, or I'd have replied there.

[Waterfin]

Update

I went to an appointment with the neurologist. He read the results to himself (the printout from the hospital, not his letter to me), looked me in the eye and said "Obviously, MS is the most likely reason for your test results".

Well he hadn't come out and said it so bluntly in his letter so it was a bit of a shock.

I've since had a lumbar puncture and blood tests to rule out or confirm MS or other things that can mimic MS (immune things).

I'm now just waiting to get another letter from the neuro with the results. Then seeing him in Dec for a follow up.

And in the meantime I'm seeing Prof Eldridge on this Tues.