A Mixed Treatment: Acoustic Trauma and/or Vascular Compression? Do Most Have Both?

[skoupidis]

I had a bad reaction to Carbamazepine. I went off it after a week. I have been on Neurontin at a low dose for a year. Not sure if it does any good, but I think I notice a difference when I forget to take it. My MVC was pulsatile and was very easily diagnosed with an MRI, MRA, and then a specialized MRI of the ear. I tried all noninvasive treatments possible for a year before having surgery. Most of the treatments made it worse with the exception of cold laser, which often helped. The surgery was my only option for padding that nerve from the artery. It was only going to get worse.

So, how are you doing today?

 

[svintegrity]

How am I doing now? Before the surgery my ringing was a constant, pulsing, screaming 10. Now it is more muted and variable. Last night before bed, it was almost gone. Today it is up again. The lead neurosurgeon said that my auditory nerve had been hammered on for so long by the artery that it will take awhile for it to settle out. It is not like trigeminal neuralgia, which can be an instant fix. They really had to tug on my vestibular nerve during the surgery, so I am still working on balancing my brain and my vestibular system with a series of specialized exercises. My cochleaovestibular nerve is still angry and irritated. I am off all narcotic painkillers, but still taking an anti-nausea medication.

Learning to walk again, I have progressed from a walker to trekking poles, to unassisted around the house. I walked almost a mile today outside, but needed trekking poles for balance. Before surgery, I could barely sleep 20 minutes before the noise woke me up. I am now sleeping at least eight hours in four hour segments most nights.

I don't want it to sound like it has been a bed of roses or a walk in the park, it hasn't. It has been hard work. But for me, it was the only option left. As an athlete (marathon runner, high altitude mountaineer, ski marathons, competitive cyclist, etc. ), I am used to and willing to work hard. But the constant loud noise in my right ear brought me to my knees over the past year. I tried just about every noninvasive treatment out there, and they only made it worse. I am now a little over two weeks post surgery.

 

[skoupidis]

So, good to learn you do well. I hope you contine to heal and one day you will be your old self again.
About your tinnitus: How do you rate it before surgery (I know, a 10), immediatelly after surgery, one week after surgery?

 

[svintegrity]

Before surgery, it was really a constant screaming 2o, for lack of a better description. Immediately after surgery, it is difficult to say, because I was on narcotic painkillers. I also had such extreme vertigo that even wetting my lips with water would cause me to throw up, but since I had nothing in my stomach I got the dry heaves. I spent a week not eating, feeling nauseous, and heaving at any stimulation.

One week after surgery changes started happening. It has been as low as a 1, but still goes up as high as an 8. One night it was almost gone, the next day a 5. The neurosurgeons said that since my nerve was hammered on for so long (over a year) by the artery, it will take some time for it to settle down. It is not instant silence, but change is happening. The noise is softer and more muted, instead of a high-pitched sharp ring.

Also because I am no longer "mainlining" noise, I have been able to sleep. Last night I slept 9 hours. Before surgery, I would get at most four hours in 20 minute segments. The neurosurgeons said to think in terms of months, not days and weeks. I had a really good team, and was told by a member of the medical staff that the operating room was so crowded that she had to watch the surgery on the screen outside. It is a rare surgery, and it is often difficult to pinpoint the exact place where the artery is compressing the nerve. If you can do that, you are a candidate for MVD.

 

[skoupidis]

Yes, however my Tinnitus does not seem to be pulsitile (synhcronous to the heart beat) and there is a case of acoustic trauma involved. However, my MRI do show signs of mvc, and the tinnitus started before acoustic trauma, although it got much aggrevated by it. I just wanted to know if there is a sound you got that is continuous, you do still have tinnitus but did it change or just goten lower in volume?

 

[1MW]

@skoupidis if i had your finding i will go for surgery.
But this is my personal opinion because for me T is very serious condition and i will take all the risks of a brain surgery.
Every moment you loose for decompression the possibilities to recover after surgery drop.
It's your only possible solution.
Don't search for hear cells regeneration these treatments does not exist today and will not exist for the next 10 years.
Find a good neurosurgeon that can do surgery effectively and safely.
Cochlear damage can not be restored.All you have to do is vascular decompression.

 

[skoupidis]

@skoupidis if i had your finding i will go for surgery.
But this is my personal opinion because for me T is very serious condition and i will take all the risks of a brain surgery.
Every moment you loose for decompression the possibilities to recover after surgery drop.
It's your only possible solution.
Don't search for hear cells regeneration these treatments does not exist today and will not exist for the next 10 years.
Find a good neurosurgeon that can do surgery effectively and safely.
Cochlear damage can not be restored.All you have to do is vascular decompression.

Beleive me, I have tried but there is hesitation on their part. Here in Greece it is not even possible, they don't even know, and one who knows (a known greek proffesor suggested to me by Prof.Dr.Paul Van de Heyning) suggested an acoustic trauma and also that mvc is a natural finding that most people do have (!) and it is not the cause of my tinnitus. He also suggested TRT (no instructions given) and stelminal (antidepressant). He said the symptoms will subside in about 1 year. All these by email, he never examined me. After I insisted about mvd, he was quite rude to me!
Many doctors here consider mvc to be a very natural phenomenon that does not cause tinnitus. Some may say it causes only pulsitile tinnitus. And one (the onnly doc that discovered my mvc) said it may cause my tinnitus, but I wouldn't find anyone to operate it here in Greece.

That is more or less what I get here in Greece. Nice uh? Tried to contact abroad, they redirected me to the above professor. I now wait the answer from a uiniversaly known professor specialized in T, but I get slow respones. I sent him my MRIs. I hope to get more from there. I havn't contacted anyone in USA. They charge insanly large amount of money as I know for people with no insurance there.

It is a great deal, knowing that you have so many doctors saying that it is not caused by mvc, also knowing that a mvd surgery may cost you more because it is very dangerous mind operation (could cost you your hearing, cause stability problems etc). Knowing all these and the fact that I would have to do such a dificult surgery only abroad, and with possible zero results as it may as well be acoustic trauma, well you realize how tough this can be for me.

 

[skoupidis]

Can you describe what type T you have and how loud ?
Have you distorted hearing ? Have you hyperacusis ?
T is constant or fluctuating and have spikes ?
head movements can produce sometimes T spikes ?
You experience "small short duration sudden hearing loss" ? For example if you hear the fan from pc sometimes suddenly background noise lowers and T makes a spike that resolves after some seconds of its own ?

Nerve damage does not alter so much the audiogram but the hearing is distorted.
A trial from 1945 says that 50% section of acoustic nerve does not alter audiogram thresholds.
In nerve damage with good audiogram you can have bad speech discrimination due to distorted hearing. Have you done high frequency audiogram and OAEs ?

Distorted hearing appears to be most bothersome. My T is not constant at all, lately t fluctuates A LOT, spiking a lot, sounds like a pressure cooker, not at its train like mode but when it calmly cooks. So, no constand T by any means... The constant spikes appear to mingle with external sounds making sound distortion. I try to listen to mp3s and they sound TERRIBLE, disstorted. Even FLAC apear to be fluctuating (!) though they are much less distorted.

Also, strange sounds are heard when turning the neck or walking down the stairs. I don't know if they are connected to T, but sometimes there is those sounds and after they stop then comes the spiking... While these sounds are heard (for mere seconds) T is lower. Sounds like current spikings, trying to connect to somewhere not managing... Strange isnt' it?

Lately, I found something I consider important: the first thing I probably respond to (or it is random finding, time has changed things 7 months after onset). I found vitamin E (eviol) helps a lot, more than any other stuff I have tried (corticosteroids, benzos, anticonvulsants- neurontin, tegretol, HBO, etc). I take only 2 pils a day.
Yesterday I tried zinc and it totally spiked! Only 1 pill. Stopped it immediatelly.
I wonder does that support the mvc theory? Perhaps vitamin E supports/enhances the nerve tissue a bit and makes mvc less bothersome? It would be strange that a single vitamin does more to the nerve than anticovulsants or even neurobion (vitamin B1, B6, B12).

 

[1MW]

If you respond to vitamin E then try NAC vitamin B3 vitamin C selinium vitamin D3 magnesium.
Also try retigabine seems to have neuroprotective effects.
Perhaps the reason for the severity of acoustic trauma was inefficiency in anti oxidative stress agents.
Distorted hearing is a sign of nerve damage(little discrimination in sounds) but also cohlear damage gives distrorted hearing(diplacusis hyperacusis)

 

[1MW]

You say that not improvement from corticosteroids.
What corticosteroid you got and what dose?
For ears work best methylprednisolone & dexamethasone.
Also be carefull with vitamin doses because in high doses vitamins are also toxic.
I had distorted hearing like you in the past for some months it cured on its own.
Have you distorted hearing after a good sleep or the distorted hearing apears at the end of the day?

 

[skoupidis]

You say that not improvement from corticosteroids.
What corticosteroid you got and what dose?
For ears work best methylprednisolone & dexamethasone.
Also be carefull with vitamin doses because in high doses vitamins are also toxic.
I had distorted hearing like you in the past for some months it cured on its own.
Have you distorted hearing after a good sleep or the distorted hearing apears at the end of the day?

Have tried medrol 16mg (methylprednisolone) and prednisolone. Also, Ι cannot remember the name, I used for several weeks one weekly shot of corticosteroid (slow release).

My distorted hearing appears to come from sudden tinnitus spikes at the sound of any short high tone! Like I miss those frequencies and tinnitus kicks in with short terrible spikes. Although I do have this problem quite all the time, I cannot say it is always at the same level. There are days it is better. I cannot pinpoint when! Seems to be having to do whith rest, when I get tired it seems to be agrravated, when I get rest, it may come down but after a couple of days. I don't know...

I am happy to know your distorted hearing has gone away on its own. How many months did you have it?

 

[1MW]

About 6 months - 1 year i don't remember but cured because i regained my hearing i had no hearing loss.
For example at all frequencies i had max 10db loss at 16khz i had 20db loss and in 20khz 40db loss.
16mg methylprednisolone in acute phase is low dose.
When i had ssnhl i got 120mg for about 10 days.
Now with 30mg i get silence 2 days. With 16mg i have little result for half day.
Corticosteroids need some dose to reach cochlea.
But now i don't suggest to you corticosteroids are only for acute phase my situation is very special
case that work several years after.
try antioxidants like NAC B3 C D E magnesium i think NAC will work for you.

 

[skoupidis]

About 6 months - 1 year i don't remember but cured because i regained my hearing i had no hearing loss.
For example at all frequencies i had max 10db loss at 16khz i had 20db loss and in 20khz 40db loss.

You mean your onset was SSNHL and had hearing loss wich later (after 6 months- 1 year) was corrected by itself?

try antioxidants like NAC B3 C D E magnesium i think NAC will work for you.

Will give NAC a try, if I can find it... What dosage would you suggest? Also for B3 (NIACIN)? I also take 2 eviol pills (E), magniseum (2x130 mg) and gicko (6000mg x2). Wouldn't all that be too much?

 

[1MW]

ssnhl corrected in 8-10 days from the event.But i had relapses of T H & distorted hearing without serious hearing loss.
Acetylcysteine is very common you will find it for sure.
I don't suggest B3 in pure form because causes rush.Try nicotinamide riboside if you find it or nicotinamide.
Also try acetyl-L-carnitine tomorrow i will get acetyl-L-carnitine to try it.
Iam 90% sure that you see some little difference from NAC but take NAC only with food
try 600mg for start and take it in cycles not continuously

 

[skoupidis]

ssnhl corrected in 8-10 days from the event.But i had relapses of T H & distorted hearing without serious hearing loss.
Acetylcysteine is very common you will find it for sure.
I don't suggest B3 in pure form because causes rush.Try nicotinamide riboside if you find it or nicotinamide.
Also try acetyl-L-carnitine tomorrow i will get acetyl-L-carnitine to try it.
Iam 90% sure that you see some little difference from NAC but take NAC only with food
try 600mg for start and take it in cycles not continuously

Nothing I try do me any good. There are totally bad days and a bit better days. I am still bothered between mvc and acoustic trauma. Nobody can tell, the doctor that did my exams (ABR and OAEEs) was adamant that it is acoustic trauma but he did the exams in a very short time and knew my history (acoustic trauma). I don't trust him. I wish someone could read the exams I posted in previous page...

Now, my T is flucuating a lot, it has terrible spikes, it is not stable by no means, it is like squeaking discs on bad breaks of a car! Spikes all the time, calming a few etc. Some times I feel pain that starts from teeth and go up to the inner ear. My MRI shows vascular compression of 7th and 8th nerve. But when I tell the doctors they say that my T should be pulsitile, synchronous to the heart bit to be coming from mvc. When I tell them about continouus flucuating T and acoustic trauma, they discard mvc. Most don't even consider it to be unnatural!

T is the most untreatable condition and the most undetectable one!

 

[1MW]

Try retigabine can kill spikes

 

[skoupidis]

Try retigabine can kill spikes

I am tired of getting into all this stuff with different drugs. Retigabine is hard to order, hard to convince a doctor to prescribe, has bad sideeffects, and does not guarantee anything at the end.

 

[undecided]

I have recently been diagnosed with pretty much the same thing as you have (the AICA has started 'spiraling' and is pressing against the various nerves around it). Shown through an MRA, a previous brain MRI didn't show it or the radiologist didn't pay much attention.
Talked to my neurologist about it, said that it's pretty common.
I'll be by his office today so he can take a closer look at the MRA.
I may have a talk with a neurosurgeon next week at the Athens Medical Center. I'll let you know if any anything interesting comes up.

 

[skoupidis]

I have recently been diagnosed with pretty much the same thing as you have (the AICA has started 'spiraling' and is pressing against the various nerves around it). Shown through an MRA, a previous brain MRI didn't show it or the radiologist didn't pay much attention.
Talked to my neurologist about it, said that it's pretty common.
I'll be by his office today so he can take a closer look at the MRA.
I may have a talk with a neurosurgeon next week at the Athens Medical Center. I'll let you know if any anything interesting comes up.

Well, my guess is they will tell you that mvc is a normal part of our organism and has nothing to do with tinnitus. That is more or less what I got from any ENT I ve talked to. And neurologists do not have a clue about Tinnitus. They say it is an ENT thing. As you can apparently see, our country is well far behind many others when it come to tinnitus.
You won't get anything out of them... Let's hope you can find one who knows a few more things...

 

[gintas]

I had a bad reaction to Carbamazepine. I went off it after a week. I have been on Neurontin at a low dose for a year. Not sure if it does any good, but I think I notice a difference when I forget to take it. My MVC was pulsatile and was very easily diagnosed with an MRI, MRA, and then a specialized MRI of the ear. I tried all noninvasive treatments possible for a year before having surgery. Most of the treatments made it worse with the exception of cold laser, which often helped. The surgery was my only option for padding that nerve from the artery. It was only going to get worse.

what was your reaction to carbamazepine ?

 

[japongus]

Where did @svintegrity get operated? Do you know, @skoupidis? He talks of a team of surgeons and an auditorium learning from his op, wow...

Reading about vascular compression made me remember the times before my T got worse and acquired rumbling sound sensitive ears, where for one year I took trimetazidine because it would temporarily improve my T. Thankfully it stopped being effective upon that second acoustic trauma which probably spared me from the consequences for which it was eventually taken off the market, for causing parkinsons...

I wonder if a vascular compression is affecting my eustachian tubes where the tensor tympani come out from...