Last reply 7 months ago
My journey

Well I’ve been tackling this dizziness since Jan 2018 and finally got my MRI results and my neurologist told me the reason I’m dizzy is because there’s a scar tissue in my brain stem,which affects areas of the pons ,its the main component of every move I make, that makes me dizzy, however when I’m still, I’m not dizzy, it has affected my speech, because of a lesion that was found in the area of my brain. Brain registration is a major thing,as it takes so much energy to think of finding the right words to say ,lost of words ,sentences don’t make sense at times , repetative , and how I know is I’m being reminded that I already said that. Trying to have a conversation with is the hardest thing.
I can’t find the right words.
Anyways to make a long story short ,I went for treatment 10 years ago CCSVI which resulted in getting 2 stents on my left side of my neck, now blocked , my MRI that I just did in July 2019, showed a thrombo embolism on my right side of my neck , and I believe this all stemmed from the stents that I got on my left side that are blocked from blood flow & has created an obstruction of blood vessel by a blood clot that has been dislodged from that site of the blockage.
Waiting to be seen , as I was told to take 325mg of aspirin for now until my appt is set. I believe this is what is causing my dizziness that has really affected my whole life and I don’t know why I had to wait this long to have this all figured out. I changed neurologists back in June 2019 because the one I had before that ,I believe missed this as this should of appeared on the MRI that I took March 13,2018, and my neurologist said he had no concern and he could of caught things at the time, now I’m suffering the consequence, I need to be seen ASAP. My neurologist that I just went to ,said that this blood clot can lead to me having a brain stroke, if it travels to my head , so in saying that, why is it taking time to find out exactly what is causing this dizziness and what they are going to have me take as a treatment such as blood thinners.
Waiting patiently and frustrated at the same time. Feel like the medical system is failing us and not being aggressive enough.
Had many feelings of throwing in the towel.
I don’t take mental illness serious anymore ,because there is absolutely no one there to help u when u need it. They say ur not alone, but yet ,yes u are.
This has created many difficult obstacles in my life. I just need to be heard

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stumbler
7 months ago

@anna_sousa , I can understand you frustrations and concern over things that have gone on and what needs to happen.

When waiting for medical advice/procedures, all you can do is try and wait patiently and try and avoid stressing.


rmdaniels
7 months ago

@anna_sousa
Hello sweet lady, it sounds like some scary things are happening. Hopefully treating the embolism will take care of the dizziness and the cog/speech issues! It is so frustrating that getting medical appointments & treatment plans take so long! We’ll be thinking about you & hopefully things will speed up!!!


patrickm
7 months ago

I think part of the problem is this MS center here in Toronto has 7000 patients & they are overwhelmed by to many patients. You just have to try & hang in their & wait till they can see you & realize they have so many patients it is going to take time


hayley_norton
7 months ago

Hi @anna-sousa, I have had clots in my jugular stent too but luckily they have dispersed. My surgeon has suggested a stent within a stent because I still have scarring in there. I have refused any more because I have 7 stents all together and have had nerve damage as a consequence.
Maybe it could be an option for you! The aspirin sounds like a high dose may be it’s that making you dizzy.
Sorry to hear your suffering. All the best Hayley x

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