Had normal EMG yesterday. Saw my GP last night and got copies of my 2nd scan report and letters from neuro. What my neuro had omitted from his E mail to me was the line "possibility of a ganglion cell tumour or neuroglial cyst is likely". I was furious about this and going to arrange a second opinion. From what I gather a neuroglial cyst is a congenital cyst and usually an incidental finding. If it's this then why the symptoms. I also apparently had prolongation on the somatosensory evoked potential for my tibial nerve but not sure how this fits in?
I have had sensory evoked responses and have EMG tomorrow but no follow up appt til Oct. I never realised how frustrating the NHS could be and I work in it! Once again thanks for your support. I see my GP later tomorrow for more tabs and am going to request a copy of letters and results from neuro.
OMG... I am an idiot... sorry about that.
You could still get other tests like EMGs, EEGs etc for the tingling - at least it would be baseline.
Have they done a spinal tap or any other tests to figure out more, or just the MRI?
The lesion is in my temporal lobe not my pituitary.
Find another doctor.
Think of it this way - the pituitary is sitting in a small bony pouch that is filled with fluid - and it is hanging off a stalk - it is like a cherry. Any cyst or tumor on the cherry is pushing on the fluid and is putting pressure on it - and it could directly effect the part of the cherry where the lesion is, or the whole thing as the whole cherry is now under pressure.
It does not matter that you have a cyst or adenoma - you have something up there. They need to test your hormones. Lab work is what is going to tell the real story. Any real doc knows that most of those lesions do not change size often (exception is the non-secreting adenoma and ironically, they have lots of symptoms and grow fast) so the fact that it is the same size means next to nothing.
Neuro's do not treat hormonal lesions. Please find a neuro-endo.
I have just had the result of my contrast MRI scan E mailed to me. Apparently after 2 months there has been no change in the size of the cystic lesion and there is no contrast enhancement apparently suggesting this is a benign cystic lesion within the brain parenchyma. Although that is good news it doesn't explain why I have symptoms or presumed temporal lobe seizure activity if this is a lesion I have had for a long time? They have recommended a rescan in 12 months. I still feel my neuro doesn't believe me and thinks I am just anxious! Does anyone have any suggestions ?
It is difficult to tell people... they are not sure how to react, and they react in funny ways too. Some go away, some become overly helpful so as to be annoying -but they have a hard time coping too.
Try to do the best you can and I am glad you are getting help. I had to do the same. Many do.
Saw the neuro earlier this week. He has decide the funny buzzing sensations and unilateral goosebumps, visual blurring etc are prob temporal lobe "seizure" activity. He has started me on a small dose of lamotrigine to see if this has an effect. I have MRI with contrast next week and evoked sensory potentials and EMG in ealy August. He has also reccommended I see a neuropsychologist regarding my cognitive difficulties (causing probs at work). For so long i have been trying to carry on as normal and pretend nothing is wrong, now a few people at work know it is suddenly more real and difficult to come to terms with. I still have to tell my family and kids and best friends- not looking forward to it
Size is not always the main factor. It is the lesion as well - where it is, the function of the lesion and where it sits too. He is asking you to come back in a short time - that is a good sign and he is testing you with what I assume is EMG. Have fun with that (not). In other words, he needs to run tests to see what the little mother is doing so he can figure out if it is worth the risk of removal. Removal has risks too - it damages tissues, bleeding, infection, and depending on location, I just met a woman who from her surgery had a stroke and lost an eye. I would not want to go to that surgeon though.
I feel he is taking you seriously - he is testing you - but you cannot see something and just cut if out - there are steps to take to see what it is. Your MRI did not determine what it was clearly as well.
Hang in there. Get testing. Let us know what is happening.
the lesion is only about 1cm diameter. My neuro is going to do a repeat MRI scan with contrast in 3months time and some nerve conduction studies. If the lesion is so small are they likely to remove it or just watch it?
My next appt with him is in 2 weeks time as I guess I'll ask some questions then. I do feel though he doesn't seem to take me seriously cos on the face of things I function pretty well although feel my brain isn't right!
Thanks for the support it makes a real difference
Spoogie x.
Hyperintensity means that it showed up darker on the scan. Depending on which scan it is, the docs look for things that are darker or lighter to show up and there you go.
Oedema means fluid. Gliosis means an area of damage. It sounds like they really could not tell what this was - so they may order follow up scans like CT, PET and maybe other tests to see what is going on.
Given that they have not been able to determine the nature of the lesion - it is really hard to determine what is up - but likely it is the culprit, but anything else you just need to hang in and get more information.
Hi Spoogie, I like that name! You did not mention the size of the cyst, which would definitely help determine what a neurosurgeon would want to do about it. You need follow-up with a neurosurgeon, to find out what should be done.
Your symptoms may, or may not be, effects of the cyst. Depending on the size, it could be a watch-and-wait condition, or an emergency (which it does not sound like).
But please see a neurosurgeon to explain your MRI results to you. Don't let it go.