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Slightly freaked out by my MRI results.

(14 Posts)
2kidsintow Thu 24-Apr-14 17:37:48

I have trigeminal neuralgia, so was referred for an MRI to rule out tumours or MS as a cause, as well as to look for any areas where a vein or artery may be pressing on the trigeminal nerve to cause my condition.

Today the results (finally) came. They confirm a compression on the trigeminal nerve.

But, it also says the scan reveals several small areas of high signal in the white matter of both sides of the brain. The dr who read the scan is uncertain whether these represent inflammation or a vascular problem. They want to admit me as a day case and do blood tests and a lumbar puncture.

Eeek! Not sure what to make of that AT ALL!

craftysewer Thu 24-Apr-14 18:23:19

Hi, can't help medically, but didn't want to just view and skip. Have they give you any idea of when you will be admitted? Sending hugs.

2kidsintow Thu 24-Apr-14 19:48:50

Thanks, crafty.

I will get a letter to tell me to call and arrange an appt with the consultant regarding the compression. That's just straightforward though. He will ask what medication I'm on and whether it's working. I will tell him that it is working and without too many side effects. He will tell me surgery isn't worth pursuing. Fine.

I assume I also have to just wait for a letter to call and arrange to be admitted as a day patient for the other tests.

2kidsintow Sat 26-Apr-14 18:47:45

I don't normally bump my own threads, but wondering if anyone has any ideas...

Coffeethrowtrampbitch Sat 26-Apr-14 18:57:44

I've got severe inflammation mainly in my frontal lobes but other areas too. It was treated with steroids on the basis that it was sarcoidosis, but it returned and I subsequently had a biopsy which confirmed it was not. I'm now spending six weeks on a high dose of steroids with an MRI at the end to discover if it has totally reduced the swelling.

Inflammation can have a number of (rare) worrying causes, and they will carry out a number of blood tests and a lumbar puncture to ruke out any which require urgent treatment. They prefer you to be in hospitals for this because there are so many things to test.

I believe most swelling is steroid responsive so you may get these as treatment, if you don't take them already. Perhaps they are more concerned as it could worsen your existing condition?

Please don't worry too much, the neurology dept I see is full of brilliant people, I have minor lesions to my frontal lobes but I feel fine now I'm getting treatment and have felt looked after well and fully informed throughout my treatment.

Best of luck, pm me if you'd like to know about any procedures etc.

SauvignonBlanche Sat 26-Apr-14 18:58:34

Poor you, you're obviously having a worrying time. No one can tell you what the outcome will be, my only advice is to try and keep calm whilst you await the outcome of the tests.

The initial shock can be very hard, I was freaked out to learn I have to have a brain tumour removed but I'm quite calm about it all now, time helps! flowers

2kidsintow Sat 26-Apr-14 19:24:29

Thanks. I'm calmer now, just resigned to more tests. Having TN, the obvious thing is MS but it can be lots of other things causing white spots, so I will have to wait and see.

I've never had a lumbar puncture before and am a bit 'eeek' confused about it.
But then I'd never had an mri before last month either and that went ok, apart from when the contrast dye popped a vein in my hand and hurt like holy hell.

TN is 4 affected one way or the other by steroids, so hopefully whatever it is won't need treating or will just need something as simple as steroids.

SauvignonBlanche Sat 26-Apr-14 19:47:50

I've had bouts of TN and didn't know about the link with MS. I think I've got enough on my plate at the moment ( see here).

Hope your Lumbar puncture goes Ok.

2kidsintow Sat 26-Apr-14 19:58:51

I think I've seen your thread, sauvignon. Sorry you've got that on your plate.

My mri showed compression as a possible cause for my TN pain. For some people, their TN pain can be caused by MS lesions on the nerve instead.

As I have the compression, then that explains my pain, but the extra white patches are just to keep me (and my neurologist) on my toes I suppose.

SauvignonBlanche Sat 26-Apr-14 20:54:25

TN is a bastard isn't it? I get symptoms only occasionally (thank God!), I had them just before I saw my neurosurgeon (who is a renowned expert on the subject) and was going to mention it before he dropped his bombshell about me needing surgery.
I hope you're seeing an expert too?

2kidsintow Sat 26-Apr-14 22:16:38

It certainly is. I've never been so poorly with anything in my life. I think I had a month where I struggled to leave my house (and some days my bed) due to the pain.

I am seeing an expert. Luckily, my GP refers straight away if anyone presents with TN, especially if they are relatively young (40 here).

I didn't want to wait for the 6 months that I would have needed to here in Wales to see a neurologist, so I found the one I would be seeing eventually and paid to see them privately. He saw me within 2 days of getting in contact, then transfered me to his NHS list the next day and organised my MRI for the following fortnight.

My results went a little astray so I had to follow that up (I emailed him directly) and I then had my letter that surprised me. I will be seeing him again in June as well as being referred to speak to the neurosurgeon in Walton too.

2kidsintow Sat 26-Apr-14 22:19:00

Occasion symptoms are enough to still need mentioning though, Sauvignon. Do you have medication for it? If mine was taken away I'd be very, very scared. My GP told me I was to stop the first medication I'd been put on (and that was making me ill) and leave it 2 days before starting the second one. It was the worst 2 days of my life. I had a 16 hour long constant attack. Never again.

I think you have enough on your plate with your surgery to be putting up with additional pain.

SauvignonBlanche Sat 26-Apr-14 22:36:39

I promise I will mention it to my consultant (also at the Walton!) but I'll let him remove my brain tumour first.

2kidsintow Sat 26-Apr-14 23:48:12

That sounds reasonable. wink

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