Medical (Neurological) Explanation of Habituation

You made it @svintegrity ~hug when your T went down half its volume already (right after the op) it can only get better. So stay put and recover ASAP. We need you here! My best recovery wishes. ~hug

Is the killer vertigo non-stop at the moment? Any pain?

 

Thanks for your reply. All eight neurosurgeons said the same thing. The nerve will heal. I still can't believe there were eight neurosurgeons on my case. The surgical theatre. was crowded. With all of those brain guys, a neurophysiologist, and two anesthesiologists. It took forever for my morning rounds. I didn't even know about VRT. The vertigo is also temporary. Yes whew! Not good for a climber or a cyclist. I just need to keep working at it!

 

NiNyu. Yes the vertigo is almost constant right now, because they had to pull the vestibular nerve out of the way to get to the artery that was pressing on the auditory nerve. But vertigo is worse at night. I am doing exercises to re-balance my brain.

 

@Mark McDill and others. Yesterday I took a turn for the worse. Woke up with a nose bleed, blurry, double vision, and a killer headache. Spent the day in the Emergency Department having CT and MRI scans, which came back delightfully boring. Neurosurgeon on call suspects inflammation from all of the trauma in a small space. T is still at about half volme, when I woke up last night it was barely perceptible. I am convinced now more than ever that if the "experts" hadn't fumbled the ball so much over the past year that my T would be gone. ENTs and Audiologists simply do not know how to work with certain types of T. Vestibular/brain retraining going well. Thanks for being out there guys. Heading home today.

 

@svintegrity ,
Double vision, oh!, that's strange - is it the stretched vestibular nerve that can cause all this?
Inflammation, I suppose you were on preventive antibiotics anyway, right? How are you now? Hope you're doing better. Please stay strong and recover. ~hug We need and want a genuine success story! I say it again, the only way to cure T is to remove/repair the root of the cause: the brain.

I totally agree! ENTs and Audiologists simply do not know how to work with T in general. Hey, you had eight neurosurgeons on your case for a reason. If you have the chance please ask your neurosurgeons if they are interested in an auditory cortex surgery? I think, I'm up for that now.

 

@NiNyu The double vision was most likely from inflammation. My eyes weren't working together. I have been doing some serious vestibular rehabilitation, and getting better. Still can't walk without a walker, which is a tough one for a marathon runner. But I am working hard to get better. I guess with this kind of surgery, it can take up to three months of healing. I am doing well considering what I've been through. I can hear my T changing on a daily basis. I am off all narcotic pain killers now. With clear CT and MRI scans there is nothing amiss, just need to get all systems working together again, which is also common. For now, I just got home working hard to get off this dang walker! ~hug

 

@NiNyu Yes I was on preventive antibiotics, and every precaution was taken. Skull was glued back together with bone glue, and scar is healing nicely. I have a feeling that these guys will not perform a surgery unless they think it will do some good, or if they've done it before. My case was textbook, although so rare that none but the lead surgeon had seen one before. I am staying strong and doing what I need to do to recover. Being in touch with all of you on Tinnitus Talk is part of that healing. Thanks. ~~hugs

 

SV
So sorry to hear about the set back(s); I'm so sorry you are going through this. Hopefully it is swelling (because that will subside, eventually)

Agreed; ENT's and most audiologists are impotent and elusive when presented with this topic. It's too easy for them to pass the buck (ENT says it's a neurological issue, neuro guys say it's an ENT issue, ENT sends you to a counselor, audiologist puts hearing aids on you and says you are all better). Hearing (and T) seem to be the odd one out in the somatosensory organs.

Keep us posted on any updates; until then, get your rest!

Mark

 

@Mark McDill My neurosurgeon team says that what I am experiencing is exactly normal for this type of surgery, which takes weeks not days, for recovery and improvement. I also have two ENTs on this team. The Neurosciences Institute has been stellar. They are all encouraged with my progress. My friends keep telling me that as a former elite athlete I know how to train for steady improvement. My husband jokingly said this morning that I was doing well for a hardcore athlete who is now on a walker. I will continue to keep working hard on getting my vestibular system back in functioning order. Interesting exercises, and I am noticing improvement. Much more tiring than any marathon I have run, or any Himalayan peak I have summited. My T has been changing in quality daily, it is even down a couple of notches today. MRI and CT scans are clear. I was also checked out by two additional neurosurgeons who were not part of the surgical team, before discharge. They are both convinced that the inflammation just needs to subside. Optimism and hope are words of the day. This forum has been great support. Thanks!

 

SV
SWEET!! That is very good news to hear (this is normal -- normal like a killer workout ). It's very encouraging to know the neurosurgeons are not 'alarmed' and that your T continues to dissipate. Awesome!

Thanx for the update; after all you have struggled through in your life I'm sure you will get through this too.

Mark

 

@svintegrity Glad to hear the surgery was successful! I'm sure you'll continue to heal and get better, since everything is going as expected. Thanks you for sharing your experience here.

Also I'd like to thank you for the support you've given me before on this forum.

 

@James P It has been a pleasure sharing with you. Thank you for your support as well! I hope you are improving some with each passing day. These things take time and patience.

 

We need a "jealous" emoticon.

 

How is your vision today?
Can you explain or show where they opened your skull? I'm really curious about it.
I wish I had some narcotic pain killers right now. Were you given morphine?
Any meds you have to take ATM?
What was the worst of the op, and what was the best so far?
~hug

 

@Dennis MacDonald , I feel you. But honestly I think this kind of operation could be the first step of a legitimate treatment for T. It's all in the brain. I wish they did more brain research. If they could pinpoint the precise locate of the crazy neurons shouldn't they be able to remove them?

 

@NiNyu It is always good to hear from you! They went in right past the brain stem at the base of my skull. I have a scar the size of a huge "C" about three inches behind my ear. It is healing nicely, and it was closed with dissolvable sutures. They shaved a bit of my hair, which by the way goes down to my waist, but they didn't have to take much. They drilled about a one-inch hole in my skull for access to the nerves. I was on a synthetic morphine, dilaudid, while I was in the hospital for the first few days and then switched to IV Tylenol. I am off all painkillers now, but still taking an anti-nausea medication, because of the vertigo. I am also taking steroids for a few more days because of the inflammation. The worst part is the vertigo and vision issues, which is common for this type of surgery, although they didn't tell me that part. I am doing vestibular rehabilitation therapy, which help get my vestibular system/brain rebalanced. This therapy will help with the vision issues. One of the neurosurgeons said they were careful, but they really had to pull on my vestibular nerve in order to get it properly seated. I have a long road of recovery ahead, but today my T dropped down to a 1 out of 10. I am sure it will fluctuate up and down. But it hadn't budged in months. So far that's the best part. That, and having a highly skilled team of neurosurgeons who were very excited about the surgery. Plus, I really liked the two anesthiologists. The fact that they had a neurophysiologist monitoring my nerves the entire surgery to make sure there was no nerve damage was pretty impressive. I didn't know they could do that. I hope this isn't too much information!

 

What out of 10 was it before the operation?

 

It was what I called a screaming 10 almost constantly. Nothing anyone could habituate to readily. It fluctuates up and down now, and I was told it could take several months to see what baseline could be.

 

@Dennis MacDonald That is, it was a high-pitched, pulsing screaming 10 almost constantly. The character and loudness of the sound is changing often now.

 

You could try to post the question in the Doctor's Corner (@Dr. Gans); they - the doctors - are there for the same reason.

 

@svintegrity Seems life had a comeback opportunity in store for you. That's really cool. Nothing beats the feeling of beeing down in the gutter and coming back.

 

@svintegrity, very interesting. Nah, you cannot ever write too much for me. Reading about your current adventures provides me with some hope that there's a way to cure this abomination.

Maybe it's time to investigate things with the letter 'C'. You know, the letter 'C' can have beautiful meanings. Since your hair is longer than Lara Croft's I'd say the 'C' stands now for Croft, which can be a synonym for adventures. Yes, now you have to plough your way through fresh arable land and bury T for once and for all.

Today I wrote to some neurosurgeons asking for a lobotomy to remove those craze neurons. Let's see how that will turn out.

 

@NiNyu I like it. The letter C stands for new adventures. Which neurosurgeons did you write to today?

@Vincent R I don't want it to sound like it is a walk in the park, because it certainly isn't, but in my particular case, it was the only thing left for me to try. I had tried every treatment out there over the past year, and everything that was supposed to make it better only made it worse. There was no habituating to what I was experiencing. I just kept going from one specialist to the next. I certainly have a long road of recovery ahead of me.

My apologies. I certainly didn't mean to get off topic on this thread. I think it was @Mark McDill 's explanation of his journey that got me going. Sorry about that. I liked Mark's explanation and description. Maybe we should move the topic on this thread back to habituation. Oooops.

 

@svintegrity Even though this went a little off topic, I think you generated a lot of healthy, interesting discussion and have publicized a very interesting procedure/option (Microvascular Compression Syndrome). I, personally, think what you have been through (up to and including your surgery and the beginning of recovery) has been inspiring and insightful. Albeit I feel awful for all you have endured (yikes!!).

Thanx for sharing and I hope your recovery is on par (that, too, sounds difficult). Keep us posted...

Mark

 

@Mark McDill Thank you for your encouraging words. I don't feel quite so bad now for drifting off topic on this thread. My recovery is coming along. As with most things, there are good days and bad days. This is quite possibly the most difficult thing I have done in my life. My vestibular system is improving, and today is the first day I woke up without double vision. My T has been changing in quality and volume. Some really high days, and some really low days. It is reaching a point where habituation may be possible, whereas prior to surgery, habituation was all but impossible. In fact, the meaning escaped me until recently, which is why this thread originally caught my eye. Thanks again!

 

@James P Good luck with your appointment tomorrow. I hope you find some ideas for relief.

 

@svintegrity Thanks, here's hoping. I'm not sure they have any experience with this kind of thing or not. I hear mindfulness meditation can help, maybe they can teach me that at least.

Glad to hear things are improving for you, here's hoping the improvements keep coming.

 

@James P I did mindfulness meditation, as well as taught yoga, for 30 years. I think the base has helped me cope better with T, but I haven't been able to do it since the onset. As with everything, I am having good days and bad days. Yesterday was particularly good. Let us know what you learn. Best of luck to you.

 

@svintegrity I finished my assessment today. Haven't learned anything yet except what I already knew, but going to treat the depression, stress and anxiety over time. Every day so far I've felt bad, but things seem to be slowly getting easier over these long months.

Glad to hear yesterday went well, I'm hoping the good days come more often for you.

 

@James P Thanks for the update. I am glad to hear that things are getting easier for you over these long months. Sounds like you are starting on a good plan to treat the stress, anxiety, and depression over time. You need a leg up. Best of luck to you!