Overwhelmed and Venting

If you can get through this post I appreciate you sorry so long..

As you all know I've had tinnitus over a year now that developed with my third pregnancy. Recently I pushed an ENT to order me an MRI which came back abnormal. I have since seen a neurologist through my local hospital who referred me to a neurosurgeon at a major hospital. Well they diagnosed me with a cavernoma that has hemorrhaged in my right frontal lobe . Basically it is a cluster of abnormal blood vessels that grow together and cause problems like seizures or other issues. I also have other weird neurological symptoms so they referred me to a stroke neurologist to be sure this thing isn't something else..


Well after seeing this new neurologist I've been told I either have an oozing cavernoma OR a parasite called neurocysticercosis.. yeah. Great, right? Apparently they are caused by eating undercooked meat and hang out in your cerebral fluid and then sometimes surround themselves in a calcified shell that lodges in your brain (It gets better, wait). These are not super common in the US moreso in third world countries but my symptoms are consistent as is the imagery from my brain. The calcified shell could break open and if it does, they can then treat me with medication to kill it. I am also possibly having partial focal seizures and they want to start me in KEPPRA to see how I respond..

Unfortunately, there's really no way to be sure if it's a cavernoma or this parasite thing without a biposy which they won't do. So, theyve ordered blood work and have also ordered but a repeat MRI in May. After both of those tests they should have a better idea of what this is. Either way, there have been no recent changes in my brain tissue for a year so this thing has been around at least that long as has my tinnitus, interestingly enough..

My Dr said if it is the parasite thing, the tinnitus could very well be related as my body's immune system is in overdrive trying to kill it.. and if so, treatment or time (for my immune system to relax) could make my tinnitus go away.

I feel like no one knows what is going on with me or how to treat me. Meanwhile, I have super shitty fluctuating T that is super unstable. It's all over the place by the day or even hour and fluctuates pitch, tone and volume. It also fluctuates in sensitivity and on occasion (like today) even my own voice hurts my head.. I am currently seeing an audiologist and using hearing aids that play low level sound to occupy my brain and help with the habituation process . I am doing better and rarely get overwhelmed by the t anymore but some days it is just too much and I just want to scream.

I just feel very overwhelmed and wanted to vent and know no better place then here with you all who understand. T does NOT make life easier. That's for sure. Today has been a shitty day. I am tired of feeling this way and listening to this shit constantly.

 

It must be quite scary not knowing what is showing up on the MRI, but I would focus on the part where your doctor said if it is the parasite, your T may resolve when the parasite is treated.

 

Agreed. I am trying to be hopeful in that aspect. It only seems it can be treated if the calcified shell cracks or breaks open. He said I would probably have a bunch of abnormal symptoms again or worsening neurological defects and then they could see the changes in an MRI. Otherwise it cannot be treated at all. He didn't mention surgery as an option for removal either. So, while he did mention that it also doesn't sound like he really knows one way or the other if a chance for treatment will present itself. I'm still getting information on everything but it's just very exhausting.

 

I can so relate. Mine happened shortly after giving birth. My daughter is almost a year and they still don't know what is wrong with me. I have weird neurological symptoms too. Just having to deal with simple tinnitus is enough but adding on all the other stuff on top of no one even knowing what is wrong with you makes it too much to deal with. Hang in there. At least you finally have some answers. That's a step in the right direction.

 

I wonder how many more of us are woefully underdiagnosed?

 

Have you had an MRI?

 

Sorry on your new challenges besides T. Sometimes, life would just throw us some curveballs never seen before and we get caught off guarded. Best to you that a solution will be found and healing is on the way. In the meantime just hang in there and try to be positive as much as humanly can. Let's hope 2017 will be a better year for you and for our members here.

 

So they think a parasite is in your brain or am I picking this up wrong Natalie?

 

Agreed..

 

Yep like 6 of them!

 

Anything abnormal?

 

@Natalie Roberts
Is there a possibility that the abnormality has been there long before it was detected with this last MRI?
Did you have any of your current symptoms before t?

 

wow!
well to be honest, the idea of getting rid of tinnitus would make me excited.
but at the same time i know its scary the whole situation.
all i know is that you are doing the right thing thank god, just try to follow your doctor direction and lets hope for the most postive outcome!
you have us here, keep us updated.

 

Natalie that is one compelling scan picture. Did you get the usual runaraound when you first sought help for the T? If so then I think you should take that scan and shove it up a few Medical back passages (after dousing it in hot chilli first). I'd come over and help.

 

Totally agree. The only tests I've had is an audiogram, tymponometry and OAE. All of which I had to pay for privately as the NHS and my GP aren't one bit bothered.

I think the only way I'll get an MRI is if I pay for that as well.

 

That is just unbelievable, and just goes to show how underdiagnosed a lot of us are. How rarely do we get investigated for a cause? The extent to my testing, on the NHS, was to look in my ears with an otoscope.

Natalie, I think your story brilliantly highlights how neglected us tinnitus patients can be in some cases. I sincerely hope that your condition can now be resolved and that you find some relief. Your story is quite shocking.

I hope 2017 is better for all of us!

 

I am sorry that you are going through this situation Natalie I wish you the best and hopefully you will get rid of both tinnitus and whichever the diagnose you really have is treated soon.
I never had an MRI and knowing the doctors here, they would probably laugh at me if I asked for one. On the other hand I got it from noise trauma so I sort of get why.

Either way, I hope you get well soon and I hope that the tinnitus is related to your diagnose and that it goes away as soon as it is treated. You did a great thing pushing for the MRI so they found out about the abnormal situation before it got overhand.

Keep us updated!

 

I wonder if there's any American lawyers with tinnitus on this forum who would like a word with Natalie?

 

The problem is that even if we are diagnosed with something 99% of the time there is nothing medicine can do about tinnitus and neuro problems generally.

 

True in most cases, but in this one Natalie had to push, as she said herself, for MRI, and a space-occupying lesion was subsequently found. Many such lesions can be surgically removed, and she deserved the respect of having her complaint taken seriously in the beginning, as do we all. Were this a cancer she could have missed a window for treatment because of delays in diagnosis due to the comparative indifference the Medical profession has for this tinnitus symptom. As it is it sounds crazy enough.

Actually once saw a bloke just back from Africa with neuro symptoms once. They thought it was a cancer until they did a craniotomy and the "cancer" started wriggling under the theatre lights. He made a full recovery and kept the snail (yes) in a container to remind him of his trip. Picked it up from drinking water.

 

Because of the images, it's either a parasite called neurocysticercosis or an oozing cavernoma. They ordered extensive blood work to see if there's any signs of it there as it sometimes will show up in blood work and then a follow up MRI in May. It is a rare parasite for the US, more common in third world countries but my symptoms can all be explained by it and he seemed pretty sure. The first neurosurgeon though was more leaning toward such the abornmal cluster of veins (cavernoma).

 

Yes, form my understanding he said it usually moves to your brain and just floats in your cerebral fluid for awhile while your body tries to fight it off which could have been causing all my other random neurological symptoms which started in 2014. Then at some point (from my understanding) it lodges itself in your brain tissue and forms a calcified shell so medicine cannot kill it. My tinnitus started in late 2015. But this thing hasn't changed for about a year from my last MRI which was in October 2016. Seizures are common from this or any brain lesion so they think I have that too.

 

Ha! Yes. I pushed for an mri with several doctors who all said it wasn't necessary. Even an audiologist said it wasn't necessary. Finally found an ENT almost a year after it started who agreed to order it for me. The nuerosurgen said the cavernoma wouldn't be causing the tinnitus though because it's in my right frontal lobe, not where the hearing center is located. But the other nuerologist said if it is the parasite thing that has calcified it could absolutely be causing my T. So, needless to say I'm getting so much different information. I'm leaning towards a third opinion at an institute in another state.

 

Why can't they open up your skull and remove the parasite form your brain?

 

Thank you. I agree. I was shocked when he told me what it could be. I've joked for a year to my partner that I would wind up on that show 'monsters inside me' because of all my weird symptoms and then when the dr said it actually may be a parasite I was like HA! I told you!

In all seriousness though they won't remove it surgically either way as the benefits do not outweigh the risks of brain surgery so, doesn't sound likely my t will go away on its own.

 

Exactly my frustration. Don't know about the statistics but in this situation they can't treat the parasite because it's in a calcified shell and it can only be treated with medication if it happens to crack open. If it's the cavernoma it can be removed surgically but my Dr won't do it because the benefits of removal do not outweigh the risks of brain surgery. And only one of the drs says it could've caused my T.

 

I've been mostly blown off since 2014 actually when all my neurological symptoms started like numbing in my extremities, weakness in my right arm and hand, 'Brain fog' , intermittent vision problems, speech issues, and random nerve pain. I did get my primary to order me an MRI in 14 fearing MS but when it returned normal I was blown off my several doctors that my symptoms were 'stress related' or several other bs things. I have seen several neurologists since then as the symptoms persist, always intermittent only to be told everything is 'normal' . Well, you know when something is just wrong? I know something is wrong with me .. then the tinnitus started and Just made things worse . So here I am a freaking year later with a potential diagnoses and a lesion that has either bled OR is calcified (apparently it looks similar in an mri). but again, my symptoms don't match completely with one of the potential diagnoses.

I've had to push and push for tests and still they're not sure what's going on. It is beyond frustrating and scary.

Especially as of lately because my tinnitus is so unpredictable. I've been getting these loud screeching sounds that last a few seconds then lower in volume but are still there. And the t goes up and down and is still relatively unstable so it's scary and frustrating

 

He didn't mention that as an option. I believe the benefits of surgery would not outweigh the risk of surgery because the parasite is non-fatal in most cases.

I will be discussing this further though. This was an appointment that latest about 1.5 hours and a lot of information was discussed but of course I won't know anything else until my labs and next MRI come in

 

Thinking of you Natalie and hope the next texts help to figure out what it is for sure.
No change is good.
Hope your hearing aids help you and you had a lovely Christmas...lots of love glynis