MRI contrast enhanced study

[Loveshorses]

Sound familiar to anyone??
I was awaiting my initial MRI results that were suppose to take a week and ended up taking 3 weeks and today had a message stating I had an appointment with the neurologist on the 16th but in the meantime they were going to schedule another MRI ~ this time an MRI contrast enhanced study.
Since they left me a message and the office is closed for the weekend I am left with lots of questions????

Quick summary of me ~ initial tonic clonic on Feb 9th which sent me to the hospital where I had a second tc ~ no recollection of that entire day. Have been on Tegretol and was awaiting MRI results but had 2 simple partials which were quite scary on 2 separate occassions ~ inability to process or communicate but aware and confused for over 1/2 hour + and then remained struggling to process thoughts for a hour or two following.

Have had ongoing double vision, disorientation, feeling of lightheadedness and feeling faint. Very very tired.

Any ideas where this may be leading so I don't go crazy all weekend??

thx guys

 

[Nakamova]

Hi Loveshorses, welcome to CWE!

It can be unusual to medicate after just one seizure (in this case, your two tonic-clonics count as one seizure). Did the ER do an EEG which was positive for epilepsy? Did they give you any info at all about the results of the initial MRI? It's possible the initial MRI was inconclusive. (For instance, my first MRI was faulty, and had to be re-done). The MRI with contrast can be shown certain structures of the brain more clearly, particularly in relation to blood flow or areas of inflammation.

Your symptoms of double vision, etc, could be seizure-related, but they could also be side effects from the Tegretol. Be sure to mention them to your neurologist -- it may be an indication the the med is not right for you, or that the dosage needs to be adjusted. with Tegretol, it's very important to make sure you stay hydrated and get enough sodium. Low sodium in particular can cause:

Loss of appetite
Nausea or vomiting
Irritability
Excessive tiredness
Confusion
Hallucinations
Muscle weakness
Muscle spasms or cramps

I hope you feel better soon. You might want to write down any side effects/symptoms you are experiencing, as well as any questions you have for the neurologist, and bring them to your appointment on the 16th.

Best,
Nakamova

 

[Loveshorses]

Thx for the reply Nakamova,

I have an EEG booked for June 17th and had a CT scan at the hospital in Feb when I had the initial seizure. (nothing on the CT) My neurologist was the one who diagnosed Epilepsy. Apparently my TC's were severe enough that they sedated and restrained me at the hospital???

At the hospital they put me on Dilantin but the neurologist changed it to Tegretol as I couldn't put 2 thoughts together on the Dilantin.

Not sure if it's Tegretol related but the past month since the partial's I feel almost always on the verge of a seizure or episode. Very disoriented and feeling just not present if that makes sense.

I also have pain above my ears and by my temples more so on the right. Maybe I am just thinking everything is a sign of a pending seizure.

Thanks again Nakamova ~ this forum is a life line to my new reality.

 

[Nakamova]

I had my first tonic-clonic in an office and was apparently taken to an ER where I had another. Like you, I was sedated and restrained. But they also did an EEG at that point which seemed to indicate epilepsy, and which was confirmed by another follow-up EEG. And I was also medicated with Dilantin (it's a common first-line ER drug for seizures). In fact I was way over-medicated. I felt so lousy and dizzy, I thought it was the epilepsy, when in fact it was the med. Eventually I backed off to less than half of the original dosage, and still had seizure control.

It's hard to tell whether your current symptoms are epilepsy-related symptoms, or Tegretol-related side effects, or both. Some meds work by preventing a seizure before it can start, and some work by stopping it from spreading after it starts. I believe that Tegretol is in the latter category, so that could explain the "on the verge" feeling that you're having.

As for your headaches -- some people report headaches as a Tegretol side effect, so that might be the cause. I'm usually an ibuprofen person, but when I had headaches on Lamictal, I found that acetaminophen (Tylenol) worked better, so you might want to give that a try if you haven't already.

 

[Loveshorses]

Called the Dr's office today to ask why they were recommending the MRI contrast and apparently there is a 'mass' on the first MRI that 'requires further investigation".

 

[Nakamova]

Just enough info to leave you hanging. I hope it's nothing serious.

 

[Loveshorses]

Just enough info to leave you hanging. I hope it's nothing serious.

Yep just enough.

Have to wait until Monday for the neurologist appt on Monday.

Thanks bunches Nakamova ~ so appreciated.

 

[Nakamova]

Please let us know how it goes on Monday.

 

[travel bug]

Called the Dr's office today to ask why they were recommending the MRI contrast and apparently there is a 'mass' on the first MRI that 'requires further investigation".

It's awful for them to be so vague and then make you wait. I know it's easier said than done, but try not to worry too much or let your imagination get the better of you.

I heard those words myself a few years ago. They said it was either edema (swelling) from a mini-stroke that I didn't even know I'd had, or a tumor. It turned out to be a tumor, and though it is malignant, it is low grade and slow growing. After surgery and chemotherapy, my doctors are quite optimistic about my future.

So, it may not even be the thing you are likely afraid of. And even if it is, it may not necessarily be as bad as you might imagine.

You are not alone! Take a deep breath and take care!

 

[Loveshorses]

Thx Travel Bug,

2 episodes yesterday that I assume are small seizures ~ can't even describe them but I had a terrible feeling of fear and just like everything in my head firing at once. Shaky and tired afterwards.
Today I have really bad pressure in my head and get waves of dizzyness, The pressure is constant. Pain in the left side of my head.

I have no idea what is going on with my head ~ just waiting for the neurologist Monday to tell me what the 'beep' is happening.

Thanks for having this forum to vent to ~ trying not to freak my family out either.

Was planning 2 horses show this weekend by will no doubt pass as I don't want to be in the middle of the show ring on a horse when something happens.

 

[Endless]

Hi, Loveshorses,

I'm so sorry about your seizures. They can be really scary. The feeling of fear could be a couple of things. A feeling of forboding could be an "aura" telling you a seizure is coming. A feeling of pure unadulterated fear that lasts just a few minutes can be a fear seizure. They come from the temporal lobe. I get both of these things and they are both horrible.

Leave it to the docs to scare you and leave you hanging. After an MRI with contrast my epi ordered an "epilepsy protocol MRI," which is basically an MRI using a super powerful machine taking much thinner slices than normal. He wouldn't tell my why he was doing the additional MRI and it scared me silly.

My appointment with my epi was 3 weeks after that MRI, so I called and got a copy of the radiologist's report way before my appointment. I just couldn't wait and it satisfied my curiosity. I let the results scare me silly reading the radiologists' report, and it was for no reason. It sounded like something I should be worried about, but it wasn't. I didn't know it then, but my epi reads and interprets all the MRI's himself, after the radiologist has taken a crack at it. After he took a look at it, it turned out to be nothing. I'm not sure I recommend getting the report yourself because a) something that sounds like a positive finding isn't always significant, and b) there's no doc to tell you if a positive finding is serious or not and next steps. But if you just can't wait....

Hang in there.

 

[Loveshorses]

Saw the neurologist yesterday and they are moving my contrast study up to a hospital a few hours away that specializes in MRI's of the brain. Also have decided to send me to a cardiologist for some tests to rule out strokes?

Neurologist waved off a lot of what I was feeling as anxiety but I KNOW better. Gave up trying to explain to her. She also said the episodes where I couldn't process anything in my head as NON~ seizure related as they were too long and according to her seizures only last a few minutes. Although in the next breath it could have been the Tegretol preventing a full blown seizure?? When I tried explaining the episodes I was having she said she deals with seizures all the time and she knows what she is talking about and she feels all these episodes are probably anxiety related.
She must think I am a total basket case then if everything is 'anxiety related'

Despite this she said she is going to 'hit me with everything she has to find out what is going on" but to 'just go home and relax'
I have a very sharp ongoing pain in my head that she said is probably just a headache ~ has been going on for almost a month but she doesn't want me to take anything for it???
And she has increased my Tegretol dosage and also wants me to take an Aspirin everyday.
Disappointed she really didn't explain anything to me other than to say she can't do anything but have all these tests done and see what happens. She told me not to worry ~ oh ok thanks I won't :roll:
I understand it is a waiting game but I just guess I wanted her to say what the symptoms might be pointing at.
Oh and also the 'mass' is only the size of my finger to the first joint so only about an inch.

Feeling stressed and frustrated and of course wishing I had answers.
Thanks for the vent ( as usual )

 

[Nakamova]

She sounds a tad confused, no? She diagnoses anxiety as the cause of your half-hour long episodes of impaired consciousness and confusion? But she doesn't seem concerned enough to suggest a treatment for the anxiety. You've had a nasty headache for a month. But she doesn't want you take anything for it. She IS a doctor, isn't she?

It sounds to me that she's not sure what's going on so she's considering vascular causes -- hence the referral to the cardiologist, the aspirin, and the fancier MRI. The mass could be some sort of malformation of the veins or other structural anomaly which might be causing your symptoms. That said, you neuro probably wouldn't say what the tests are pointing to because she truly doesn't have enough information to make a reasonable diagnosis.

I know it's hard to sit tight and wait, and it's harder when your docs are so frustrating. For what it's worth, I don't think your symptoms are anxiety-related at all.

 

[travel bug]

Oh my God! Your doctor tells you your problems are "anxiety related" and yet she only adds to your anxiety by making you wait and wait and not explaining anything! It often seems that doctors label anything they can't explain as "anxiety".:soap:

As for sending you to a cardiologist to rule out stroke, I wasn't sent to a cardiologist, but they did run an MRA (a magnetic resonance angiogram, an MRI of the blood vessels in the brain) and did an ultrasound of my carotid artery checking for plaque to see if there was any evidence that "the mass" was swelling from a stroke. Apparently, you can have small strokes without even being aware of it until the resulting swelling causes seizures, etc. Even after these came back negative, and even though I had low blood pressure and no risk factors for stroke, the doctors still stuck to the idea I had had a stroke until it became obvious that the "swelling" wasn't going away and they finally accepted that it must be a tumor, though low-grade because it wasn't growing either.

If your mass is the result of stroke then it will likely go away and hopefully take the seizures with it. When my doctors assumed I had had a stroke and that the swelling would go away, they let my Dilantin level fall, assuming I didn't really need to worry about seizures anymore. Well, you know what they say about assuming, "it makes an a## of you and me". It made an a## of them and caused me to have another seizure.:razz2:

Anyway, despite the fact that your doctor doesn't really explain anything to you and still expects you to "go home and relax", it sounds promising that she is going to "hit you with everything she has to find out what is going on". It's better for her to be thorough and know exactly what you're dealing with than for her to make assumptions and treat you for something you don't have.

Hang in there! and try to think that, as serious as things may be, if your doctor suspected anything too bad, she would move things along faster.

Keep in touch, we're thinking about you:rose:

 

[Loveshorses]

Well despite the dr's opinion onder: I am pretty sure the episodes are not anxiety as I wouldn't suddenly out of the blue start having anxiety for no reason and I still live in this body and I think I have some idea if I was dealing with stress and anxiety to a level that it was affecting me physically. But I will let the doctor have that one for now LOL
Both the cardiologist and the University Hospital called already to book an echocardiogram (sp) and a Holiter (sp) Test as well as the MRI contrast study ~ was surprised by that!!! Finally got a call booking the original MRI contrast but that has now been cancelled as we are going with a different hospital that specializes in reading brain MRI's :brain:
I am still having the pressure and disorientation I have in my head daily.
The neurologist wants all the reports in within the next few weeks and then will just see where the dust settles then.
Thanks a million times for hearing me out ;0)

 

[Loveshorses]

Travel Bug ~

You reminded me ~

She wants the MRI also done on the arteries in my neck as well ;0)

 

[Loveshorses]

Contrast MRI has been booked for tomorrow ~ I got a call yesterday that they had a cancellation so hubby has taken the day off work and we are heading on a road trip in the morning.

Keep ya posted ;0)

 

[travel bug]

Contrast MRI has been booked for tomorrow ~ I got a call yesterday that they had a cancellation so hubby has taken the day off work and we are heading on a road trip in the morning.

Keep ya posted ;0)

Yay! That shortens the wait a little bit at least. And, as strange as it may sound, try to enjoy the roadtrip if you can. When I was sent to a city about 4 hours away for an MRI with a surgery consultaion the next day, my mom and I went to a nice museum and found a wonderful little pizza place that we go to everytime we go back for check-ups. I make a little vacation out of it...kind of sad that I get all excited about a road trip for follow up MRI's, but hey, you gotta find enjoyment when and where you can. And more importantly, if I look forward to the fun parts it helps take my mind off the worrying parts...at least a little

Wishing you all the best! I'll be looking for your updates and sending you good vibes and positive thoughts!

 

[Loveshorses]

Travel Bug ~

I got a chuckle over your post ~ I just realized I've been complaining my husband never takes me out anywhere :roflmao:

 

[Loveshorses]

The neurologist called this morning to see if I could come in at the end of the day today.........
I have a brain tumour and I am having surgery asap ~ maybe as soon as tomorrow.
Feeling a little surreal right now.