How did you cope with your first MRI results?

General General TN & GPN (Old Site)
#1

Hi, I'm currently facing an upcoming MRI (this Tuesday), my first, and it's kind of brought the magnitude of my problem right up close. Suddenly I realise that none of my options are really rosy. If they find nothing I'll be condemned to a life of meds, and the meds, so far, have been very difficult.

I was unable to get past 600mg of Tegretol without unmanageable side effects (bad nausea, 'drunkenness' and quite bad hallucinations). I am now on a combo of Tegretol and Lamotrigine but it seems to be causing (or is causing the Tegretol to cause!) new unpleasant side effects (the same old nausea and motion sickness, but also a different kind of hallucination and continuous headaches and light sensitivity), so a lifetime of this is not a cheery prospect. The drugs manage my shocks, but not the continuous 'sensitivity' inside my mouth (which is a whole different anxiety all by itself), so the drugs, so far, are not really providing a 'cure'.

Likewise, even if I am a candidate for MVD, do I really want to take on brain surgery and its attendant risks?

I actually find myself wishing that I will have small benign tumour that they can operate on and solve my problem, but how realistic is that?!

Then there's MS, or malignant tumours, or some skull defect they can't fix.

It's an old unhappy list, and no doubt familiar to many of you, but my problem is I find it very hard right now not to be overwhelmed by the sheer magnitude of it. Because I can't put an optimistic slant on it – there being no real positive outcome – I don't really know how to deal with it.

I find that this overwhelm is coming out of me in an odd way: whenever I am alone and try to relax, like in the shower, or writing in a journal or doing hypnosis or visualisation, I simply start crying, like someone's died. It's the most terrible inconsolable grief – that's the only word I can think of to describe it.

I have never, so far, dreamt about my illness, which I find odd since I think about it 24/7, but last night I dreamt about it for the first time, and I was crying in exactly the same way, like a small child destroyed by some kind of dreadful terror and grief.

I'm sure many, many of you have gone through this. How did you handle your MRI and the inevitable facing of the results? How did you cope? How did you come out the other end?

Any guidance or suggestions most gratefully accepted….

P.S.I should have mentioned, I have Classic TN. And I should probably just add, I am an atheist, so praying is not a comfort to me!

#2

I'm a worry-wart by nature --- and damn - did I worry! my word was terrrification !

1st - look at amnatrptaline + Baclofen / or Trileptal = different cousin of tegretol. For Now.

FIND YOUR BEST UK meds and

doctors to give you second opinions, options! Ask your group here - who to see.

Your stressing yourself out - IS making your pain worse --- get a benzo prescription / get a counselor for now.... I am one and I needed benzo + antidepressant for one year.

When my MRI in 2010 - had no picture of my TN

Im not sure if a Fiesta MRI was available at the time, it is best picture!

IF you do gamma or other nerve-damage procedure first - MVD will be lest effective.

Google - WATCH

video: The Neuropathic Tides of Pain

break it down if you have to

However - I watched video- Dr. Casey, read his book - found out he doesn't require a "picture" of TN1

He knows by the type of pain you are having - that most likely he can go in there - he's done it thousands of times.

Casey will do MVD if drugs are ruining your life --- I couldn't work, type good, speak good, interview for jobs - had PTSD, depression.....

I asked my neurologist actually for small dose Ritalin - for the days that I needed to research and read and make notes.

I was only on pills for a year - and after all my research - I couldn't take it anymore - and flew to Michigan.

I was lucky - as many are with TN1 -- 2 days in hospital -leased apartment that was affordable , 2 nights in hospital

drove home over 4 day period

stayed in bed for 3 weeks and did not move my head around.

I had to occasionally put lidocaine patches on my face before (that helped me keep meds lower)

and after MVD - took a year+ for all the pain to dissipate.

That's why I come here to still give hope!

The people with good MVDs - Cranial surgery - not brain surgery - are not hanging out here anymore much!

please also read these postings If you can


http://www.livingwithtn.org/forum/topics/an-important-reminder-for-...


http://www.livingwithtn.org/forum/topics/taking-a-poll-here-please-...

you have to make your journey - you have to ask, learn, ask, repeat until YOU find your best solution. Not all is lost! DO NOT give yourself a stroke before you find out your options !!!!!

hope this helped!

I had/have a kiddo on the autism spectrum - so I did all I could to find him the best dr., best med, best school

and if I had just listened to doctors only, their hopelessness, My son wouldn't be well on his way to a pretty good adult hood..... BIG portion was the moms on the message boards from across the country, cheering me on, directing me, telling me what NOT to put him on.... forever grateful for internet !!!! 30 years ago, he would have been institutionalized.

So finally I had to do all that for myself --- it was easier to save his life - seemingly - but I didn't want him or my daughter or my husband or my dad to see me give up and wig out all the time.

I don't have a religion either --- I have my 5 pets!

: )

Just my story

#3

My MRI showed diddly squat so then it was just a process of eliminating any other issues and there we had my diagnosis!

#4

Hi

You are not alone in what you are feeling. I had a similar experience.

My story: Before my first MRI I made the mistake of doing some 'google research'. I was worried they wouldn't find anything, find a tumor, or get diagnosed with MS. I wasn't too worried going into the MRI but after it was over it hit me of how important the results are going to be. My MRI came back with nothing.

My doctor put me on gabapentin and klonopin. I was eventually weaned off the klonopin daily dose and had klonopin(makes me sleep) and Ativan(pain relief with ability to slightly function) for break through pain. After a while tegretol was added to the mix. I was on 3200mg gabapentin a day and 600mg tegretol daily with Ativan and klonopin for breakthrough pain.

I was still having pain and a LOT of side effects. I had the 'drunkenness', hallucinations, irritable, depression, I was getting frustrated over everything. Sometimes people wouldn't understand what I was going through. They can't see the pain, they can't see all the side effects. I kept the hallucinations to myself for as long as I could until the anxiety got too great and I would just mention, 'did you hear that' 'did you see that' in hopes someone would say yes and I wouldn't have to worry.

A year later it was to the point that I decided I couldn't live like that and needed to find a different solution.

My quality of life was unacceptable to me (I am 27). I saw two surgeons before I picked Dr Eskandar at Mass General in Boston Mass. 2 MRIs later there was still nothing. Nothing on the MRI, drugged, frustrated. I decided that there had to be something wrong and went with the MVD on Aug 15th, 2013. It turns out I had multiple veins wrapped around my nerve.

A few months later I was pain free, medication free, side effect free. Take time to decide what step you want to take next. For me the decision came from my poor quality of life with side effects and pain.

Best of luck,

Amy

#5

Thanks, Kc, loads of great info in there. Believe it or not, I had found the second link a couple of weeks ago by myself, but then I lost it again. Can't thank you enough for finding it for me! I didn't go through the denial stage for some reason, and went through the angry and bargaining quite quickly, but I suspect I am stuck in the depression stage, hence the crying that feels like grief/loss all the time.

I was just about to watch Dr Casey's video tonight - I got the link from another discussion - so that is definitely on my agenda. Again, many thanks.

I was very interested when you said "IF you do gamma or other nerve-damage procedure first - MVD will be lest effective" I didn't know this. Do you know why this happens?

Chancery

Kc Dancer Kc said:

I'm a worry-wart by nature --- and damn - did I worry! my word was terrrification !

1st - look at amnatrptaline + Baclofen / or Trileptal = different cousin of tegretol. For Now.

FIND YOUR BEST UK meds and

doctors to give you second opinions, options! Ask your group here - who to see.

Your stressing yourself out - IS making your pain worse --- get a benzo prescription / get a counselor for now.... I am one and I needed benzo + antidepressant for one year.

When my MRI in 2010 - had no picture of my TN

Im not sure if a Fiesta MRI was available at the time, it is best picture!

IF you do gamma or other nerve-damage procedure first - MVD will be lest effective.

Google - WATCH

video: The Neuropathic Tides of Pain

break it down if you have to

However - I watched video- Dr. Casey, read his book - found out he doesn't require a "picture" of TN1

He knows by the type of pain you are having - that most likely he can go in there - he's done it thousands of times.

Casey will do MVD if drugs are ruining your life --- I couldn't work, type good, speak good, interview for jobs - had PTSD, depression.....

I asked my neurologist actually for small dose Ritalin - for the days that I needed to research and read and make notes.

I was only on pills for a year - and after all my research - I couldn't take it anymore - and flew to Michigan.

I was lucky - as many are with TN1 -- 2 days in hospital -leased apartment that was affordable , 2 nights in hospital

drove home over 4 day period

stayed in bed for 3 weeks and did not move my head around.

I had to occasionally put lidocaine patches on my face before (that helped me keep meds lower)

and after MVD - took a year+ for all the pain to dissipate.

That's why I come here to still give hope!

The people with good MVDs - Cranial surgery - not brain surgery - are not hanging out here anymore much!

please also read these postings If you can


http://www.livingwithtn.org/forum/topics/an-important-reminder-for-...


http://www.livingwithtn.org/forum/topics/taking-a-poll-here-please-...

you have to make your journey - you have to ask, learn, ask, repeat until YOU find your best solution. Not all is lost! DO NOT give yourself a stroke before you find out your options !!!!!

hope this helped!

I had/have a kiddo on the autism spectrum - so I did all I could to find him the best dr., best med, best school

and if I had just listened to doctors only, their hopelessness, My son wouldn't be well on his way to a pretty good adult hood..... BIG portion was the moms on the message boards from across the country, cheering me on, directing me, telling me what NOT to put him on.... forever grateful for internet !!!! 30 years ago, he would have been institutionalized.

So finally I had to do all that for myself --- it was easier to save his life - seemingly - but I didn't want him or my daughter or my husband or my dad to see me give up and wig out all the time.

I don't have a religion either --- I have my 5 pets!

: )

Just my story

#6

Hi Amy, you have no idea what a relief it is to find someone else with hallucinations! You're the first I've encountered. My first bad hallucinations were when I went up from 600mg of Tegretol to 800mg. Before that, although I was aware that I seemed to be more 'anxious' about spiders in the house than normal (spider phobic; I haven't realised until recently just what a bundle of phobias I am!), and that I seemed to be hallucinating them, for want of a better word, I didn't worry about it and put it down to anxiety.

However when I went up to 800mg all that changed. Spiders were everywhere. As soon as we dimmed the lights at night to watch TV I saw them in their legions, scurrying across floors, running along skirtings, on ceilings, on the arm of my chair. I had one bad night, when in full light, I saw a big one (right down to its colours) on my chair arm right beside me, one near my feet and the usual ones round my room. I insisted my partner helped me take the sofa apart to find it, but there was nothing there. I eventually hallucinated the stencil on my bedroom wall turning into huge spider with lobster claw style legs coming out the wall. The hallucination was so clear I had to sit up and study the wall and reassure myself it was a stencil of birds, not spiders, and that there was nothing there.

Then there was the hallucination of oranges on a park bench and a sparrow in the fruit department on my local superstore. Despite them being kind of anxiety producing, I generally learned to know when they were real and when they weren't, but like you, I occasionally had to ask, and occasionally embarrassed myself pointing out things that weren't there.

But these new hallucinations are somehow worse. They are more intimidating because they feel like I am going crazy. I can't think of a word to describe them, except for spatial and perhaps perceptual. For example, I frequently feel like my head is expanding, or that I have become unnaturally tall, or that a chest of drawers is so close I could reach out and touch it when it's really 3 feet away. I had one where I thought my brain was in two halves (which it is of course!) and they were disjointed, one above the other, and one half was teal green and the other coral red (yes, that specific!).

I frequently have to stand there and reassure myself that I'm not going crazy and everything's normal. I heard myself saying today, while getting dressed after a shower, "You are not unnaturally tall and no, the room is not shrinking". Bit tragic when you are talking out loud to yourself!

Oddly enough, I have wondered if I had veins wrapped around my nerve. Early on in my diagnosis I tried hypnosis to get an idea of what was causing the electric shocks, and I got a mental picture of a nerve surrounded by veins like something out of Jack and the Beanstalk. I found it so depressing, because how the hell would they be able to fix or untangle that?, that I didn't do much more work on it after that. It put me off. So it's good to know you've had that particular problem so if mine turns out to be the same I might be able to fix it after all.

Might I just say I can only admire you, dealing with this problem so young. It's an awful curse for someone only in their twenties - I have enough trouble coping with it at 57. I actually said that to my doctor: "I could have coped with this at 87, not 57", so like I say, my admiration goes out to you. And I apologise for all the hallucination, hypnosis crazy-talk. I am actually quite sane, you know!

Chancery



Merrrra said:

Hi

You are not alone in what you are feeling. I had a similar experience.

My story: Before my first MRI I made the mistake of doing some 'google research'. I was worried they wouldn't find anything, find a tumor, or get diagnosed with MS. I wasn't too worried going into the MRI but after it was over it hit me of how important the results are going to be. My MRI came back with nothing.

My doctor put me on gabapentin and klonopin. I was eventually weaned off the klonopin daily dose and had klonopin(makes me sleep) and Ativan(pain relief with ability to slightly function) for break through pain. After a while tegretol was added to the mix. I was on 3200mg gabapentin a day and 600mg tegretol daily with Ativan and klonopin for breakthrough pain.

I was still having pain and a LOT of side effects. I had the 'drunkenness', hallucinations, irritable, depression, I was getting frustrated over everything. Sometimes people wouldn't understand what I was going through. They can't see the pain, they can't see all the side effects. I kept the hallucinations to myself for as long as I could until the anxiety got too great and I would just mention, 'did you hear that' 'did you see that' in hopes someone would say yes and I wouldn't have to worry.

A year later it was to the point that I decided I couldn't live like that and needed to find a different solution.

My quality of life was unacceptable to me (I am 27). I saw two surgeons before I picked Dr Eskandar at Mass General in Boston Mass. 2 MRIs later there was still nothing. Nothing on the MRI, drugged, frustrated. I decided that there had to be something wrong and went with the MVD on Aug 15th, 2013. It turns out I had multiple veins wrapped around my nerve.

A few months later I was pain free, medication free, side effect free. Take time to decide what step you want to take next. For me the decision came from my poor quality of life with side effects and pain.

Best of luck,

Amy

#7

IF you do gamma or other damages to nerve…

MVD, is to unwind, unwrap, or clamp nerves with teflon.

If you shoot them with lasers or whatever, you cant have best outcome with what MVD treats.

Ok im really tired, this is not scientific post…lol

It might be in the dr casey video

#8

I think you should just try to focus on one thing at a time. Focus on getting the pain under control.. and getting some counseling if need be. I had a spell I went thru where I was crying every day thinking about what my life was going to be like for the rest of my life. My doc put me on a different ,stronger anti depressant. I am better now.

Take good care of yourself and try to just take it one day at a time dear.

Sincerely,

Min

#9

Ok, Kc, not really following that! But I'll have a look at Dr Casey's video as you recommend. Thanks again!

Kc Dancer Kc said:

IF you do gamma or other damages to nerve.....

MVD, is to unwind, unwrap, or clamp nerves with teflon.

If you shoot them with lasers or whatever,,,, you cant have best outcome with what MVD treats.

Ok im really tired, this is not scientific post.....lol

It might be in the dr casey video
#10

Hah! I should be so lucky, Min. I keep trying to wangle anti-depressants out of him and he just keeps saying, 'Oh they won't help you. They work best for ATN sufferers'. Foiled again!

But if I get desperate they're always there as a last resort.

Thanks for the kind words, as ever.

Chancery

Min said:

I think you should just try to focus on one thing at a time. Focus on getting the pain under control.. and getting some counseling if need be. I had a spell I went thru where I was crying every day thinking about what my life was going to be like for the rest of my life. My doc put me on a different ,stronger anti depressant. I am better now.

Take good care of yourself and try to just take it one day at a time dear.

Sincerely,

Min

#11

This might sounds strange, but I was actually hoping they would find “something” in the MRI. I felt it was better to know what was causing it. Plus it’s hard to get physicians to treat things they don’t physically see.

Reading these forums, it seems most MRI’s come back negative. Medical imaging has had wonderful advancements, but still seems rare to spot compressions on nerves with them. My own case I had negative scans, but I had exploratory and they found there was compression (scar tissue).

Anywho, if I were to offer advice: I would treat any scans or MRI’s as a a good starting point and an oppurunity to eliminate other things. More than likely it will come back clean. Though If there is something bad causing TN aside from vascular compression, it is better to catch it now.

#12

What!!! Maybe it’s time to shop around for a different doc…
I’m jussst sayin…??? Chancery.

Some anti depressants are well known for their help in treatin type 2 pain!!! :-/

#13

Hi Joe - no, it's not at all strange to want them to find something. I felt exactly the same. Although a couple of nights ago, just before going for the MRI, I watched the Ken Casey video often recommended on here, and did find a different slant on that idea. He thinks getting a normal MRI is the best result, because normal means there is nothing in your head that's going to kill you. You don't have MS, which will kill you ultimately, and you don't have a tumour, which often does likewise. He says if you have Type 1, as I have, you almost always have a vascular compression so it's generally a safe bet to do an MVD. Interestingly, he says it also helps about 60% of Type 2 sufferers (I think it was - sorry, watched it a couple of nights ago and my memory is crap on these drugs - it wasn't good to start with!). So that is more reassuring.

The problem for me is I really want something magical that they can actually fix - good old magical thinking, or maybe it's denial still lurking in there! I still think of MVD as a temporary solution - the result of reading too many horror stories maybe. Plus, there's that hole in your head. Still can't get my head around the permanent hole in my head. I keep feeling you might accidentally poke a finger through it while doing your hair!

Also, I don't know how easy it is to get an MVD on our NHS here in the UK. Anybody British (or a knowledgeable American) who knows how easy an MVD is to get in the UK?

JoeE said:

This might sounds strange, but I was actually hoping they would find “something” in the MRI. I felt it was better to know what was causing it. Plus it’s hard to get physicians to treat things they don’t physically see.

Reading these forums, it seems most MRI’s come back negative. Medical imaging has had wonderful advancements, but still seems rare to spot compressions on nerves with them. My own case I had negative scans, but I had exploratory and they found there was compression (scar tissue).

Anywho, if I were to offer advice: I would treat any scans or MRI’s as a a good starting point and an oppurunity to eliminate other things. More than likely it will come back clean. Though If there is something bad causing TN aside from vascular compression, it is better to catch it now.

#14

Hi Min - yeah, Type 2. I have Type 1 and he says that anti-depressants are only good for Type 2 sufferers. I have seen that information on other Neuralgia sites, so I don't think he's torturing me unnecessarily. Ah, those Type 2s get all the fun. Still, I wouldn't wish to be in a Type 2 sufferer's shoes - even if they do get more street cred with their drugs!

Min said:

What!!!!! Maybe it's time to shop around for a different doc...
I'm jussst sayin......??????? Chancery.

Some anti depressants are well known for their help in treatin type 2 pain!!!!! :-/
#15

Ask your UK group for MVD referral…if you are candidate

Find second opinion too!

Most successful MVD aren’t here any more!



Look at doctors tab above too for UK



for MVD…



they close the whole …size of quarter…half dollar US,?



Most of us have titanium plate that closes the hole… Some have bone.



THERE is a thread of success stories here at top tab.



One man here posts,

has 30 yr remission from MVD



Think positive!

#16

I don’t think it really matters what type you are per say with the medications. Personally I take it a guide book. I have tried almost every type of medication that is listed to treat TN, it did not matter if they helped typed 1 or 2. It was listed to treat TN. Sorry, if this sounds snappy, truely it’s not meant to be. I have seen people with type one get relief from antidepressants just as with those with type two not get relief from them. Maybe you should point out to your doctor in the most polite way that although there are similarities with each case of TN, each case is unique as each person is unique. And also it would not hurt to try adding an antidepressant to your cocktail of medication (well unless your taking something that should not be taken with antidepressants). If it doesn’t work than at least it can be said it was tried. If you might also want to consider lidocaine gel, a compound, lidocaine patches, or magic mouth wash (all of these will numb you up). Sometimes we need to be a little more vocally or forceful on what medications we want to try with our doctors and tell them I’ve had enough this is what I want to try, and that I’m done waiting. I have had to learn that the hard way before. I’m sorry you’re having a rough row with your TN and getting it under some control. It will get better. Hope your having a good day and that is pain free:)

#17

Thanks for the suggestions, Kc. It didn't occur to me to look at the docs tab; I just assumed they wouldn't have any UK ones. And I hadn't even seen the success stories tab, so thanks for pointing that out! Once I've heard the results of my MRI I can sound out the neurologist about an MVD (if it's appropriate and I don't have some obscure disease!) and see what she says. I will certainly be using this site for my research, don't worry!

But a 30 year remission? That really is fabulously cheering. Fingers crossed I am that lucky....

Kc Dancer Kc said:

Ask your UK group for MVD referral.....if you are candidate

Find second opinion too!

Most successful MVD aren't here any more!

Look at doctors tab above too for UK

for MVD.....

they close the whole ....size of quarter...half dollar US,?

Most of us have titanium plate that closes the hole..... Some have bone.

THERE is a thread of success stories here at top tab.

One man here posts,
has 30 yr remission from MVD

Think positive!
#18

Hi Kari, no, you're fine, don't worry, I know you're not being snappy - just trying to help.

It's early days for me yet, medication wise: I've only been on two! So I'm letting myself be guided by the doctors just now. I'm giving them the benefit of the doubt. Although so far they've scored a miserable miss with Lamotrigine, which nearly killed me with pain. (Headaches). On the other hand, it was a fabulous success with dealing with my sensitivity. I am still desperately trying to think of a way to hang onto it, but can't see how I'll manage it if I can't control the ferocious headaches it gives me. Replacing one annoying symptom with a completely debilitating one doesn't seem like a good exchange!

But you are absolutely right, of course. If I've learnt anything in the short time I've had this disease it is that it has tremendous variations. If anti-depressants look like the way to go then I'll be more insistent that we try them.

Thanks for the Lidocaine suggestion. They'd already been recommended to me and my doctor is looking into them for me. I must remind him - thanks for reminding me!

Kari said:

I don't think it really matters what type you are per say with the medications. Personally I take it a guide book. I have tried almost every type of medication that is listed to treat TN, it did not matter if they helped typed 1 or 2. It was listed to treat TN. Sorry, if this sounds snappy, truely it's not meant to be. I have seen people with type one get relief from antidepressants just as with those with type two not get relief from them. Maybe you should point out to your doctor in the most polite way that although there are similarities with each case of TN, each case is unique as each person is unique. And also it would not hurt to try adding an antidepressant to your cocktail of medication (well unless your taking something that should not be taken with antidepressants). If it doesn't work than at least it can be said it was tried. If you might also want to consider lidocaine gel, a compound, lidocaine patches, or magic mouth wash (all of these will numb you up). Sometimes we need to be a little more vocally or forceful on what medications we want to try with our doctors and tell them I've had enough this is what I want to try, and that I'm done waiting. I have had to learn that the hard way before. I'm sorry you're having a rough row with your TN and getting it under some control. It will get better. Hope your having a good day and that is pain free:)
#19

Hi,
I was told it was TN before my first MRI. It was done to rule out other things. When it came back clean, I was not surprised. My treatment continued as it always had. Good luck!

And btw, I’m also an atheist and feel the same way you do. Just thought I’d throw that in. You’re not alone in feeling that way!

#20

Hi Med', thanks for replying. I've already been diagnosed too, and I assume my MRI is probably being done for much the same reason. Unfortunately I've not yet had full success with meds, so I'd like to know I had MVD to fall back on, both in case the meds never come right, or in case my illness gets worse. To that end, I do worry about the scan being normal, but Dr Ken Casey thinks a normal scan is a good thing, and I suspect he's right.

Nice to know there are a few atheists on the board here. I think I'm a victim of stereotyping. Americans are always being portrayed as uniformly religious and I thought this board, being chiefly American, would leave me as something of a lone voice. I don't find being urged to pray particularly helpful, so I was trying to subvert that response. Looks like I needn't have worried!

Perhaps I should start a thread for atheists called 'What do you do when the going gets rough and you have no God?' It might actually be helpful!

medphysicsRB said:

Hi
I was told it was TN before my first MRI. It was done to rule out other things. When it came back clean, I was not surprised. My treatment continued as it always had. Good luck!

And btw, I'm also an atheist and feel the same way you do. Just thought I'd throw that in. You're not alone in feeling that way!