Abnormal MRI/CT Scan

[Natalie Roberts]

Well, after almost having T for year I finally found an ent to order me an MRI with contrast and the results show a cavernous malformation known as a cavernoma in my right frontal lobe. I then had an immediate head CT Which shows I have multiple adjacent draining veins and a focal attentuation which is suggestive of encepelmacia along with a cavernoma. The ENT flat out said he couldn't interpret the results because he's not a neurologist but told me i needed a neurologist ASAP. He did say that my because there was no change between the MRI and the CT my brain is not currently bleeding but that's all he said. He also is unsure if it could be causing or contributing to my tinnitus/sensitivity to sound.


So my appointment with nuero is on the 18 which was the absolute soonest they could get me seen but from my research and what I've been told by a friend who is a PA and has patients with the same thing that the cavernoma and the bleeding could possibly be the cause of the T as well as all the neurological symptoms I have experienced intermittently for the last two years.

These results are new from an MRI I had in 2014 and I have had no trauma which would cause such an injury. It's really terrifying to have to wait for answers and highly frustrating to know I have asked several doctors for MRIs since the onset of my T and all of them have said it wasn't necessary.

But look? Maybe it is necessary.. push and fight for your own health, guys. Because if you don't do it, no one will do it for you.

 

[Michael Leigh]

@Natalie Roberts Long time no see Natalie and hope you are keeping well aside from the tinnitus. Good that you're having all the tests done. However, I still think your tinnitus stems from prolonged headset use which has also caused hyperacusis. I know I sound like an old record but I've met with a lot of people doing your kind of work that have the same problem. Hope I'm wrong but I don't think so.
Best of luck.
Michael

 

[Natalie Roberts]

@Natalie Roberts Long time no see Natalie and hope you are keeping well aside from the tinnitus. Good that you're having all the tests done. However, I still think your tinnitus stems from prolonged headset use which has also caused hyperacusis. I know I sound like an old record but I've met with a lot of people doing your kind of work that have the same problem. Hope I'm wrong but I don't think so.
Best of luck.
Michael

I am currently going back to school to get a degree so I can get away from the headset use in case this is the cause. I basically have an area of brain damage and a recent brain bleed. It has caused other neurological issues I believe. I'm not sure about the tinnitus. It's really scary regardless and just goes to say trust your instincts and demand tests if you feel something is wrong which is what I have felt for the last two years.

Thanks

 

[Michael Leigh]

I am currently going back to school to get a degree so I can get away from the headset use in case this is the cause

I hope the brain bleed issue is resolved and you're right to have that looked into. I'm pretty sure the tinnitus and hyperacusis is caused by headset use and sorry to get on my soapbox as I don't mean to. The main cause of tinnitus is exposure to loud noise when hyperacusis: sensitivity to sound is also present it usually points to loud noise and prolonged headphone or headset use and the treatment for it is TRT.
Good luck with the degree
Michael
PS: It would be prudent not to listen to any type of audio through headphones even at low volume. Try using sound enrichment at night to help desensitize your auditory system.

 

[gotyoubynuts]

PS: It would be prudent not to listen to any type of audio through headphones even at low volume. Try using sound enrichment at night to help desensitize your auditory system.

Why do you keep spreading this false information???????? ??????? ???????

CAN YOU SHOW SOME FACTS WHY HEADPHONES AT LOW VOLUME COULD CAUSE DAMAGE PLEASE

THANK YOU

 

[Michael Leigh]

@gotyoubynuts You don't need to shout gotyoubynuts as it's not very polite. My facts are my 2o years experience with tinnitus and counselling people with the condition. Many people that develop tinnitus is through exposure to loud noise and headphone use: listening to music for long periods of time at high levels. Many people have contacted me about their tinnitus that have worked in call centres wearing headsets for long periods of time. I am giving my opinion those that wish not to follow it it's entirely up to them okay...
All the best
Michael

 

[Ecip]

Hey Natalie! Well, at least you have a possible diagnosis! That's more than most of us can say.

 

[Natalie Roberts]

I hope the brain bleed issue is resolved and you're right to have that looked into. I'm pretty sure the tinnitus and hyperacusis is caused by headset use and sorry to get on my soapbox as I don't mean to. The main cause of tinnitus is exposure to loud noise when hyperacusis: sensitivity to sound is also present it usually points to loud noise and prolonged headphone or headset use and the treatment for it is TRT.
Good luck with the degree
Michael
PS: It would be prudent not to listen to any type of audio through headphones even at low volume. Try using sound enrichment at night to help desensitize your auditory system.

I appreciate your advise, and i am currently working with an audiologist to possibly TRT. I have tried in ear sound generators but have not yet found a sound that doesn't aggravate my T.

However, both of the audiologists as well as the three ENTS I have seen do not believe my tinnitus or hearing loss was caused by my headset use. The headsets are kept at an extremely low volume and I don't wear them all day everyday. Generally 4 - sometimes 8 hours a shift. There is also not constant talking into them. As you know, my tinnitus does not respond well to sound so I did not like sleeping with a noise machine and actually found it aggravating. Like I said I am trying to find a new job to get away from headsets- just in case but I've found no dr who believes my continuing employment will worsen the condition.

This post was really not meant to discuss TRT or headset use but just to discuss the results which are scary to me and the importance of trusting your gut when you think something is wrong.

Again, I do appreciate your advise and have tried the sound machines but don't find it helpful to my condition.

 

[Natalie Roberts]

Hey Natalie! Well, at least you have a possible diagnosis! That's more than most of us can say.

This is true.. I'm trying to stay positive that if somehow it is related to the T (not sure if it is yet) that if they can resolve the bleed and somehow fix the areas of damage maybe the T will resolve with time. But it's also scary in the opposite way that maybe it will get worse.. so, I'm just kind of a mess right now!

 

[Michael Leigh]

Again, I do appreciate your advise and have tried the sound machines but don't find it helpful to my condition.

In my experience, Doctors, Audiologists etc are very quick to dismiss things like headphones and headset use not causing tinnitus or hyperacusis and worse, some of them advocate tinnitus patients to continue listening to audio through headphones as long as the volume is kept low; while others say headphones shouldn't be used by anyone that has intrusive tinnitus. However, I have every respect for their knowledge of the anatomy of the ear. But as my Audiovestibular consultant once told me whom I have an immense respect for: " You know more about tinnitus than me because I have never experienced it".
Best of luck and I wish you well
Michael

 

[glynis]

@Natalie Roberts ,
Happy to hear you had MRI and CT scan.
Fingers crossed for you duck that everything will be fine and hope you find some tinnitus relief soon.
Your a lovely lady and have 3 beautiful children and going back in education too.
Well done duck you are amazing...lots of love glynis x

 

[Natalie Roberts]

@Natalie Roberts ,
Happy to hear you had MRI and CT scan.
Fingers crossed for you duck that everything will be fine and hope you find some tinnitus relief soon.
Your a lovely lady and have 3 beautiful children and going back in education too.
Well done duck you are amazing...lots of love glynis x

Thank you. I am very scared. I haven't had any incident in the last two years that would've caused brain damage so I really have no idea what caused the bleeding and malformation and have to wait forever to see a Dr. :,(

 

[gotyoubynuts]

Thank you. I am very scared. I haven't had any incident in the last two years that would've caused brain damage so I really have no idea what caused the bleeding and malformation and have to wait forever to see a Dr. :,(

Rest easy it's not life or death situation or they would have done brain surgery on the spot

 

[The Red Viper]

I've come to the same conclusion myself, that detailed diagnostics up front are always the correct way to go. It saves more time, frustration, and money in the long run. Proponents of this current trend to cut healthcare costs don't seem to realize this.

 

[The Red Viper]

It's really terrifying to have to wait for answers and highly frustrating to know I have asked several doctors for MRIs since the onset of my T and all of them have said it wasn't necessary.

But look? Maybe it is necessary.. push and fight for your own health, guys. Because if you don't do it, no one will do it for you.

Sounds like malpractice to me.

 

[InfiniteLoop]

@Natalie Roberts

I remember discussing with you that MRIs are not very useful since acoustic neuromas are so rare. It is surprising that they found something very different. Wish you good luck with the new diagnosis.

 

[Natalie Roberts]

@Natalie Roberts

I remember discussing with you that MRIs are not very useful since acoustic neuromas are so rare. It is surprising that they found something very different. Wish you good luck with the new diagnosis.

Thank you. It was surprising to me as well and I'm sure the ENT wasn't expecting it. There is not an acoustic neuroma for sure and I'm still not 100% certain the tinnitus is related but it very well could be.. I am very scared

 

[Natalie Roberts]

Sounds like malpractice to me.

I even email my primary care dr and asked him to review the MRI and ct because I want someone to give me answers sooner then the 18 and the PA for the ENT cannot.. my primary Dr was one who said it wasn't necessary for any further tests and my tinnitus has actually gotten worse over the year. Right now, I am sure it's related to stress and anxiety but I am very scared.

 

[Natalie Roberts]

Rest easy it's not life or death situation or they would have done brain surgery on the spot

I agree, I assume if it was life or death they wouldn't have let me leave.. But from my understanding it can start bleeding again at any time and that is what is scary to me. My tinnitus is worsening and it may be stress but regardless I am very scared of what this may mean.

 

[GregCA]

@Natalie Roberts
On the bright side (there has to be one), you now have a lead and a path to go down. It's scary for sure, but imagine if you'd gone many more years without knowing about this.
Nobody has as vested an interest in your health as you do. Keep pushing for your health, and good luck.

 

[hartje5]

Hi Nathalie, I would advise you to try to stay as calm as you can. Don't look far ahead. Take things one day at a time. I know what it is like to have terrifying health issues and what helps me is not to think too far ahead. Try not to play out scenario's in your head because the reality is almost always different from what your imagine it to be. Just take the days in little steps, go through your motions and try to be in the moment instead of in your mind somewhere in the future.

Hope you get more clarity soon.

 

[Natalie Roberts]

@Natalie Roberts
On the bright side (there has to be one), you now have a lead and a path to go down. It's scary for sure, but imagine if you'd gone many more years without knowing about this.
Nobody has as vested an interest in your health as you do. Keep pushing for your health, and good luck.

I appreciate that! And you're right.. I seriously have been saying some has been wrong for two years and basically been blown off by my doctors. I'm glad to finally have some sort of path to look into.. I appreciate your kind words.

 

[Natalie Roberts]

Hi Nathalie, I would advise you to try to stay as calm as you can. Don't look far ahead. Take things one day at a time. I know what it is like to have terrifying health issues and what helps me is not to think too far ahead. Try not to play out scenario's in your head because the reality is almost always different from what your imagine it to be. Just take the days in little steps, go through your motions and try to be in the moment instead of in your mind somewhere in the future.

Hope you get more clarity soon.

You're right. I am my own worst enemy in this and have always been ! I always tend to think the absolute worst about every situation especially health issues.. and I also tend to think very far into the future. I do need to take it one day a time because my anxiety is out of hand.. I so appreciate your kind words.

 

[hartje5]

@Natalie Roberts

How are you doing now Natalie. You've been on my mind. Have you had any news yet?

 

[MikeP505]

Maybe it is necessary

I agree. I realize these MRI's almost ALWAYS come out negative for issues. My ENT was awesome when he suggested I undergo one..... just to be sure! As soon as he planted the thought in my head, I knew I had to do it or wonder forever if I had some growth or issue in my brain. Mine came back all clear, as I was expecting but had I not done it, I would be stressed about the thoughts of....."what if"!

I am happy you finally had one done and wish you the very best with any treatment for the issue they found. Get better fast and fight on!!

Regards, Mike

 

[Natalie Roberts]

@Natalie Roberts

How are you doing now Natalie. You've been on my mind. Have you had any news yet?

Thank you for thinking of me. Unfortunately, No news. My appointment with neurology is the 18th in the AM. I will update here when I have any news!

 

[Natalie Roberts]

I agree. I realize these MRI's almost ALWAYS come out negative for issues. My ENT was awesome when he suggested I undergo one..... just to be sure! As soon as he planted the thought in my head, I knew I had to do it or wonder forever if I had some growth or issue in my brain. Mine came back all clear, as I was expecting but had I not done it, I would be stressed about the thoughts of....."what if"!

I am happy you finally had one done and wish you the very best with any treatment for the issue they found. Get better fast and fight on!!

Regards, Mike

Thank you! I just don't have any information yet. I am hoping it isn't something too serious that can be managed and treated. Thank you for your support

 

[MikeP505]

Thank you for your support

My pleasure Natalie! At least you have something to work with here. Sure do hope any treatment brings relief and comfort in the very near future. Keep us all posted please. We are all rooting for you!

 

[Natalie Roberts]

My pleasure Natalie! At least you have something to work with here. Sure do hope any treatment brings relief and comfort in the very near future. Keep us all posted please. We are all rooting for you!

From my research the treatment involves some anti-seizure medication if seizures develop, possibly surgery depending on location of the cavernoma and neurological problems, or they leave it and monitor with MRI/ct. :/

 

[MikeP505]

Well those options don't sound the greatest but I suppose you have to do as the doctors suggest. In the mean time, try not to get too stressed over all of this. I know you hear that a lot here but stress really knocks you down to a point it's hard to fight on. Keep all your doctor and specialist appointments but live your life as happily as possible while all this takes place. Get tons of rest too.