Does Balance nerve always die with radiation?

[Tisha]

Since my wonky head and nystagmus are popping up again (and the episodes are longer and worse when it happens), I'm curious as to what is going on.  The doc who diagnosed me said that my brain is learning to compensate because the balance nerve is still being compromised by the tumor.  He said it usually eventually goes away.  So what actuall happens?  From what I've been reading on posts, it sounds like the balance nerve dies? And the other balance nerve just compensates and this takes time?  I guess I'm unclear as to what happens to cause the sudden onset of wonkyhead, and then why it eventually may stop.

I'm 21 months post CK.  I had 2.5 months of nystagmus and wonky head this smmer on and off...then 2 months with virtually no issues.  Started again in October.  Thanks.  Tisha

[TJ]

Tisha

I was told by my doctor that the balance nerve will not die, but it will always be off due to the tumor.  Although CK hopefully stops the growth of the tumor it does not go away.  So whatever balance issues before CK with be there after CK.  The hope of the treatment is to stop the growth and keep you were ever you are at that point.  The doctor told me that the good balance nerve (the other side) will not take over completely unless the nerve effected by the AN is totally dead.

I am not a doctor but I am guessing the doctors don't always have the answers, so I think it will be a waiting game to see what happens.

Best of Luck
TJ

[Jim Scott]

Tisha ~

Although the vestibular nerve does not necessarily 'die', it does become dis-functional and eventually non-functional.  As you know, the  unaffected vestibular nerve 'takes over' and in time your brain adjusts to the change and equilibrium is achieved.  Although your balance will never be exactly the same as it was with two functioning vestibular nerves, it will be 'serviceable'.  That's where my balance is, today, some fours years post surgery & radiation.  In the meantime, the intermittent bouts of dizziness and nystagmus should eventually cease as the functional vestibular nerve compensates and your brain re-adjusts to the changed input.

Jim

[Tisha]

Thanks TJ and Jim,

Your explanations helped immensely.  Now I won't feel so anxious as I'm stumbling around.  It's just amazing how it hits, and then I'm fine for day in 48 hours.  I never experienced fatigue before either, at least this type of fatigue.  Even after I gain equilibrium, I just want to sit or lie down and do nothing.  I keep telling DH, I'm brain fatigued, but I know that's hard to understand.

Tisha

[Tumbleweed]

Tisha, I'll add two things to the mix here:

First, your increased dizziness and fatigue may be due to clinical (internal) swelling of the tumor, which is a temporary thing. Yes, this can happen even two years after treatment. I had a very mild increase in dizziness at about the 22nd or 23rd month post-CK, but it resolved in a couple weeks. Interestingly, I hadn't been eating as well or sleeping enough leading up to the time when my symptoms worsened. I got back on the bandwagon and, by coincidence or not, my symptoms improved.

Second, have you tried taking Rhodiola rosea (an herbal extract of a root) for your fatigue? This herb had an amazing effect on me, cutting my fatigue in half during my time of greatest need in the two months immediately following treatment (I could barely sit up in a chair, I was so wiped out). Rhodiola rosea comes in powdered form, in gelatin capsules. The quality matters. I tried NOW brand, and it was mildly effective. Oregon Wild Harvest brand (I think that was the brand), on the other hand, worked like throwing a light switch: within 30 minutes of taking it, I was feeling much more energized. You can find this herb in natural-food stores. Don't take it any later than about 2 PM or you may have trouble sleeping. Yet it contains no caffeine.

Best wishes,
TW

[Tisha]

Thanks Tumbleweed, that is really good to know that others experience symptoms close to the 2 year mark of having CK.  I always read how it CAN happen within 2 years, but I had assumed if I was doing so well at 15/16 months, I was over the hump.  Guess not.  I'll look into the natural herbs, too.  Thankfully, the fatigue only lasts as long as when the episode hits...about a day, then I'm back to my normal self.  So, at least for now, it's not a big problem.  The feeling is just so foreign.  Tisha

[Tisha]

It got better since I posted this, and had only been taking the meczline on and off.  However, last week, the nystagus hit like never before.   I'm vomiting, and it's taken 4 hours or so to recover, with fatigue the remainder of the day...but at least I'm functional.  That has happened 2 times...last Thurssay, Saturday and then yesterday morning.  This morning as soon as I got up (5:00 am), it started again but without nausea or vomiting.  It is now 4:00 p.m and I still have it.  I have been laying down with my eyes closed almost the entire day.

Stanford called me back and said that since it's been 2 years (exaclty this month) since my CK, that it couldn't be swelling and that they won't give me steroids, or valium.  They said it just must be from the tumor itself, and suggested I contact local docs to look at possible crystals behind the ear (don't know what that is), and to start vestibular exercices.  Basically, I feel that they are now wiping their hands of me.  I do have my local neuroENT and I have a call out to him.  I'm distraught, scared and overwhelmed again. 

Do these exercises really help.  The nurse said that the nystagnus is related to Vertigo, even though it's not exactly the same.  I didn't have this symptoms at all for until 16 months CK!  My tumor has remained stable the whole time, although he thought there might be swelling at 6 months CK.  I'm at such a complete loss.  Sometimes I wish I had just had this sucker removed...but I know that there are numerous balance problems with those who have had that done, also.

  Just having a pitty party today.

[sunfish]

I'm so sorry to hear of your ongoing problems.  Our tumors are/were the same size, and I had CK too. I'm still struggling with all kinds of issues as well.  I think the neuro-ENT might be able to help you.  I forget what it's called when you have crystals in your inner ear.  I've known people who had this, and it was quite fixable.  I like the www.vestibular.org site.  Also, there's a site regarding "dizziness-and-balance" (not sure of the exact name).  There's lots of info regarding various vestibular disorders (including the crystal thing).  My balance nerve is supposedly only half dead, and it gives me lots of problems.  Day after day of lightheadedness, stumbling occasionally, vision problems.  My neurosurgeon has me taking trental (pentoxifylline), which is supposed to help fight "fibrosis" caused by CK radiation.  I've been on it for about 9 weeks, which is about how long it's supposed to take to help.  My balance problems may have improved a tiny bit.

Take care, and God bless you!

[Tisha]

Thanks so much for the info, Sunfish.  I've written that down and will google it.  I made an appt. with my local doc for next week.  I'm fairly normal today.  I think I probably was too hasty in being "down" on the advice I received from Stanford.  I was just in a bad place yesterday.  They did ask if I wanted to come in for an appt., not realizing I was out of town.  I really believe, as do they, my issues are just the tumor itself at this point and really...what can they do?  They can only direct me to my local neurosurgeon, and advised vestibular exercises and crystal therapy...that is what they would have done.

I guess I was wanting reassurance of some sort...of what to expect, why it's happening now.  Why did it start 16 month CK...I just want answers, and of course, they don't have them all.  THis damn tumor.   Here I think I'm 2 years out of CK, and all should be normal...and here I am with problems still.   I know the CK is successful so far...no growth.  I would like to know what sort of med I can take in an emergency.  Yesterday was not an emergency, I understand.  But what if I'm gettiing ready to travel, for instance.  There must be something out there to stop it, or lessen it.  Does anybody know of anything?

Thanks again for your reply.  Tisha

[Tumbleweed]

Hi, Tisha:

By coincidence, I've been going through my own (mild) relapse. Three days ago, I had very mild vertigo -- accompanied by not-so-mild disequilibrium -- for the first time in many years (that is, discounting a few brief episodes of vertigo that lasted only a few seconds each). It happened on Tuesday of this week; the vertigo lasted about 1-1/2 hours, and I found myself tipping over when walking around the house. Being that I had had CK fully 2-1/2 years ago, I was worried. I emailed Dr. Chang, and he replied within a few hours. He said it was not unusual to have vertigo this far out from treatment and it didn't portend I would have vertigo permanently. He said it could possibly last several weeks and I could tough it out or take steroids. He said the steroids might, "if anything" make it resolve quicker. I interpreted that as meaning it might not do anything but might help.

In the brief amount of time it took for him to reply to me, I drank a lot of water and took some natural anti-inflammatories (bromelain and curcumin). That seemed to help a lot. The vertigo went completely away and my balance improved a lot, too. Three days later, I still don't feel like I'm 100%, but I do feel much better (well enough to hike 3 miles today). I'd been taking less of the bromelain and curcumin for the past couple months -- I was getting tired of taking so many pills every day -- but have decided I should go back to taking more, as they seemed to keep my symptoms in check.

Crystal therapy: similar to kidney stones, tiny crystals can form in the semi-circular canals and throw people's balance off. A vestibular therapist will slowly rotate your head to try to get a "stuck" crystal to move. It sometimes resolves symptoms -- if indeed you have a crystal that has grown in your semi-circular canals. My guess is that your symptoms are due to your tumor. Drink plenty of water, cut back on fatty foods (except for salmon), keep your blood sugar up (don't starve yourself), avoid eating cane sugar, get plenty of rest and maybe try taking some over-the-counter anti-inflammatories (either natural supplements or ibuprofen, for example). Doing these things always makes my symptoms lessen. YMMV, so these are just suggestions of things you can try.

I hope you feel better soon!

Best wishes,
TW

[Tisha]

HI Tumbleweed.  I wrote out this long reply and as I was finishing, Comcast went down and it was completely lost!  Argh!  Thank you so much for the info.  How strange that this similar symptom is cropping up with you at this stage of the game.   I appreciate you responding, as it is such an "alone" feeling.  I probably should have emailed Dr. Chang, I always feel like I am bothering him.  Howver, when I do email him, he gets back right away and never makes me feel that way.

Is this the first time you've experienced this?  This started 16 months post CK and the steroids did help. They gave them to me, then, as I was still within that 2 year timeframe of swelling.  They did help immediately...like within 1 hour.  However, after it was done, and a few weeks after that, it started again.  Like I said I've been managing it with meclinzine.  YOu might want to try that, too.  I will look into the cumumin.  I have an accupunture appt. today.  She said it can help with Verigo, but we'll see.  It works like a dream on my arthritis, and she's very upfront with what it won't work for.

I do think this is just the tumor, like my local doc said.....it's still there, still on the nerve.  It will take time for the brain to adjust, but in the meantime it can be so scary...not knowing when it will attack, what I will be doing, driving, getting ready to do something. 

Well, please stay in touch!  Talk to you later.  Tisha

[Tumbleweed]

Hi, Tisha:

Yeah, it was virtually the first time I had experienced vertigo for more than just a few seconds since getting CK. In fact, I hadn't had any vertigo lasting more than a few seconds for around 9 years or so (long before I was diagnosed with an AN).

I try not to email Dr. Chang unless I feel it's really necessary. But when something unusual like this pops up for me, I want to get an opinion from the top. After all, he is our doctor, right? And he is so dedicated to his patients. So while I might only email him a couple times per year, I don't hesitate to if I think it's something really important.

I'll be curious to hear if acupuncture helps your symptoms, Tisha. Please feel better!

Best wishes,
TW

[suz]

Hi Tisha,
I did not have radiation - but I did have an episode of vertigo (technically 'benign paroxysmal positional vertigo') about 6 weeks after my surgery. It totally freaked me out because I had really started to feel steady and less dizzy at that point and thought that I was having a relapse.  I woke up one day and the room was spinning; could barely walk straight all over again! Luckily had an appointment with my vestibular therapist a few days later and she correctly guessed that it was the benign vertigo caused by the crystals in the inner ear being out of place (or something like that). She showed me how to do the "Eppley maneuver" and HONESTLY - just one treatment of this maneuver cured me. It is a very simple maneuver which involves a series of movements and head turns but it works. For me, the vertigo was very different from the loss of balance I had post-op. Is yours also different? I am sure that you can google this maneuver and find instructions. But I have to say that years ago - pre-AN - I had benign vertigo and my family doctor tried to do the Eppley Maneuver in his office and in retrospect he really did not know what he was doing. It did not work then, but then again, he did it incorrectly. I suffered for months until probably by accident during a yoga class the crystals got knocked back into place and the dizziness stopped. So maybe it would be worth finding a physical therapist that specializes in vestibular issues and have a consultation.
I hope you are feeling better soon!
Suz

[Tisha]

Hi and thanks Suz!  I did read about this procedure and am very interested in having it done.  What I read about the crystals is that it's not uncommon, especially for people over 50!....which I am      And that it really works.  The nystagnus is most likely just from the tumor, but I could also have the crystal issue!  I have an appt. with my local doc this week, and I knwo they do the procedure.  I'll also be given the name of the vestibular therapist they use.  I haven't had any issues for 4 days now, and it's been wonderful.  I have to say that I am on pins and needles waiting for it to start, and I need to stop that.  I'm making myself very anxious.

I know I should just be thinking about my health, but I get really bummed having to take vacation days being ill.  I have my vacation pretty well mapped for the year, plus most of it is for the summer when my kids are off.  They are teens and busy, but I don't like for them to be home alot alone...so I take tons of half days.  These sick days eat into that time and it bothers me tremendously!

I'm so glad that the procedure worked for you and things are better...really gives the rest of us hope!  Tisha

[rupert]

  The crystals are usually  embedded in a gel like substance.   If they come loose they float around in the inner ear and bump into things.  When they hit certain
parts of the inner ear it causes severe nausea and dizziness.    EN T's have special tables that flip around and they can do maneuvers to get the crystals back in place.
You can do it yourself.  It's called the Epley maneuver.    Be aware it could make you really sick,  but it does work on a lot of people.  You have to follow the
directions to the  T.  Especially the part about after you do the maneuver.   You need to give the crystals time to get settled back in.   It may take several times.
    As I said it can make you feel real sick.  The first time I did it I couldn't finish and had to lay down.    I persisted though and gave it another try the next day.
Got through it and was better each day after.   In about three days I felt back to normal.
                                                                                                                                Bryan