Journey of Recovery after CK for 1.5 cm AN

[lalehjg]

Hello all.

I have not posted here for a long long time, partially because I think psychologically I wanted to be done and over with AN, and didn't want to think about it anymore.  Guess what.  It is thinking about me!   I thought I would post here to help anyone else who may be going through what I went through and to take heart.  You are not alone.

In any event, as some of you may know, I was diagnosed with an right side AN 1.2 cm by 6 mm on January 25, 2010.  After some months of agony, I decided on CK at Stanford with Drs. Chang and Soltys, and may God bless them because they have been available and supportive beyond my expectations.

Right after CK, I was exhausted, nauseous, dizzy, and tinnitusy (is that a word?).  I still am.  This would go on and off, one week on, one week off.  I could in general go about my functions working full time and being a full time mom - for all practial purposes a single mom since husband is frankly never home. 

Most of the time, things have been going well, given that I have a brain tumor after all, so thank you God for allowing me some really good days!

The first big "glitch" happened on 7/3/10, when I lost my balance and fell from the wooden stairs at my house.  It was a dizzy day, and may eyes were flipping that day (some sort of nystagmus?).  In any event, I lost my balance, fell on my back (right side), specifically on the right sacroilliac joint, from only three stairs, and I cannot begin to express the pain that resulted from this.  I in fact could not imagine pain like this existed.  I could hardly move without excruciating pain radiating down my right leg, and could not stand or put any kind of pressure on my right leg.  My husband who happened to be home called 911, and I was taken to the emergency room by ambulance.  Every pothole on the road sent shots of pain down my right leg.  I won’t go into the details of the excruciating pain I experienced at the ER going onto and off all sorts of imaging tables, but good news was I only had a contusion and no fracture!  Yes!  Thanks God for that!  I was on bedrest for 3 weeks, and have slowly recovered.  I have been exercising regularly and now with a trainer to get my body as strong as possible.

Right around my recovery from the fall, I started experienced right side facial twitches, around my right eye (my eyelid on the top and on the bottom were contracting and releasing, my right upper and lower lip would take turns being pulled up and down, muscle waves would start travelling up my cheek, my right side temple muscles would start flipping.  These were never really to the point where anyone could see them clearly unless they were staring at me close up, so OK. 

6 months follow up:  CK is working!!!  Yeah!!!!  Tumor is dying a pitiful death, thank you God, and the middle of it shows necrosis.  Hearing intact.  It has slightly enlarged.  I visited with Drs. Chang and Soltys, and they gave me the good news, and said my symptoms, including facial symptoms, were likely the result of the AN dying and irritating the nerves around it.  Dr. Soltys mentioned that the facial issues are quite rare with AN patients having done CK, but they HAVE happened, maybe for 5 patients or so if I remember correctly out of the 500 he treated.  So if you have facial issues after CK on your AN, take heart.

The next big glitch, which resulted in probably the most nightmarish episode of my life I kid you not, happened on 11/20/10, this past Saturday night.  I was having dinner with friends at a friend’s house, and, unfortunately I must say, I had had a ¼ glass of whiskey and was having wine with dinner.  We were talking, and at one point I was laughing so hard I was about to fall off my chair from laughter (I love my friends!  :)Thank you God for them! ).  At that point, the right side of my face COMPLETELY FROZE into a grin.  My right eye was partially closed, my chin was contracted and tight, and my right lips were pulled up tight into a snarl.  I could not for the life of me move the right side of my face.  It felt like a rock.  I covered the right side of my face with my right hand, and excused myself and went to the bathroom.  I was too terrified to look into the mirror.  I tried to relax.  As I relaxed, my face loosened up.  Still, there were muscle waves travelling on the right side of my face.  I finally got control of the right side of my face, and went back outside.  My eyelids on the right side kept flipping for about 30 mins after that, but no one could tell.  My right eye was blurry too.  Not sure if related.  I am terrified of this.

I got home and immediately emailed Drs Chang and Soltys.  May God bless them!  Dr. Chang has already answered me, and it’s only Monday morning on Thanksgiving week, so I am so thankful to him!  I feel better, not as terrified.  Here’s what he said in essence:

•    What happened to my face happens sometimes to patients who undergo CK for AN
•   It happened very likely because as the AN dies it irritates the facial nerve and my facial nerve appears to be sensitive
•   The episodes have been known to happen only once or up to several times a month for 6 months
•   After the AN has died, the episodes have not been known to happen again
•   There is not much the patient needs to do about this
•   The episodes are transient, and Dr. Chang has not seen any patients where the facial issues including twitching have remained.


So, if you have an AN and have been treated with CK and are experiencing facial issues, don’t freak out.

I was reading about hemifacial spasms (HFS), and my episode looked like a HFS.  I was freaked out because HFS are progressive, and I was worried that these are going to get worse.  I guess recovery after a CK is a game of patience and hope, so I will keep on keeping on based on Dr. Chang’s response, and I will report anything else that I find out for the benefit of those of you who may experience this.

Love and peace to you all.

Laleh

[Jim Scott]

Laleh ~

Thank you for that comprehensive update.  You've had some daunting problems but thank God you seem to be coming through them in good shape.  Dr. Chang has clearly been an asset to you and this will be an excellent recommendation for him should newbies seek a recommendation for an AN doctor in Southern California. Apparently your issues are going to be temporary and it seems as if you'll come through this experience just fine, albeit with some scary moments along the way.

Thanks again for your most encouraging update, filled with honesty and optimism.  I wish you a continued good recovery - and no more scary moments!  

Jim

[lalehjg]

Thank you very much Jim!     It's been a tough road, definitely.  The more we go through the more we change for the better, and the more we stay the same, and it's all good!

I just heard from Dr. Soltys who called me on the phone and answered all of my remaining questions.  I can say that if there is such a thing as angels in this world, Drs. Chang and Soltys are it.  Dr. Soltys was so patient in answering all of my questions.  Here's what I learned:

*  HFS can happen with about 1 to 2% of patients who undergo CK for AN.  This is not unusual and not alarming with regard to treatment
*  There has never been a permanent facial issue that Dr. Soltys has seen with an AN patient who has undergone CK
*  I may have an other episode or more, and time will tell
*  If I have more prolonged/severe episodes, I can take steroids and that can usually take care of the problem beyond the course of steroids
*  The HFS is caused by inflammation inside my head caused by the radiation, and not just tumor inflammation, but even possibly nerve inflammation.
*  Although HFS is typically a progressive disease, it is not so for AN patients who have undergone CK, and the HFS will resolve itself.

I hope this helps anyone who undergoes what I am experiencing right now and I hope this helps.

Take care.

With love.

Laleh

[sunfish]

I can never thank folks enough who include these comprehensive updates about their treatment.  Some are similar to my experiences, and some are not.  Sometimes I say "Gosh, that person's AN was the same size as mine, same treatment, and look at all the problems they've had!"  Sometimes I say "Gosh, that person's AN was the same size as mine, same treatment, and they haven't had many problems at all!"

I've had some significant issues as well, about which I'll post elsewhere.  We always want to get through health problems unscathed, but this is one problem that's likely to "scathe" you in some manner, big or small.

Laleh, I've about fallen off my front porch twice.  I will make my husband install a hand rail this weekend!

[novagirl]

Hi Laleh - thank you SO much for sharing your experiences! As someone who has not got treatment yet, but seriously considering CK, I greatly appreciate this. Also, did you have any sort of facial symptoms prior to getting CK? The reason I am asking is that I do periodically get a numb feeling in my face (especially when weather changes or when feeling tired or stressed).  So I am wondering if I am likely to get facial issues post-CK as well. This is not to say of course that there is any pattern to this madness - I totally agree with sunfish. AN patients seem to have quite a range of symptoms, so I am quite aware that there might not be any connection.
Thank you.

[Anomar11]

Hi Laleh

I too had Dr. Chang with Dr. Gibbs CK 11/08.  I had hemifacial spasms starting May '09 through Dec '09, and haven't had one since.  My L eye and lip will still sometimes twitch though.  My spasms at one point were 4-6 per day lasting about 10-15 seconds or so.  On my initial diagnostic MRI, the radiologist noted the facial nerve was involved and questioned a facial neuroma.  Dr. Chang never confirmed this however.  I've also read a couple of others on this board, who stated the spasms stopped after a while, so hang in there.

Mona

[lalehjg]

Thank you all!  Sunfish hang in there!  I know this can be a difficult journey for some of us post CK.  The statistics suggest that post CK, you really are unlikely to experience major symptoms, and that's true, but when you do have symptoms like we do, well, that statistics don't mean a thing.  Hang in there Sunfish!  And definitely have your husband install those handrails.  For me, it took a millisecond before I was contorting with pain on the floor below the stairs!

NOVagirl, you are welcome.  To your question, I had NO facial issues before CK, none whatsoever, so this is weird for me.  Would I do CK again?  Yes.  Surgery has many more post op issues, and hte possibility of permanent facial issues is much more. 

Mona:  wow!!  I am amazed.  I thought my situation was a freak kind of situation, but it seems HFS post CK can happen and do happen.  I am terrified of them really.  Did you ever have these happen in a social situation?  What did you do/say?  Did you avoid social situations because of it?  Did you take Decadron after, and if so, did the HFS go away past the Decadron course?  I am so glad you are not having these any more!

Seriously, may God bless us for what we're going through.  Honestly, last night, I woke up from dizziness.  When I close my eyes, I feel like I'm falling into a an abyss, and my right ear is hissing, and the AN actuall HURTS. 

Love to you all!

Laleh

Laleh

[Anomar11]

It was awkward at first.  Smiling and laughing were a couple of things that caused them and sometimes they just happened.  Since they didn't last long, I just put my hand over my mouth and said I was having a problem with my facial nerve.  Try not to let them scare you and take heart in what the doctors said about them not lasting as they did not for me.  I had a very hard time with decadron, and since this didn't hurt, I didn't feel the meds were worth it cost vs benefit for this particular situation.

[mattsmum]

it is very helpful to read your experience. i had linac in july - i had balance issues, mild facial numness, mild facial twitching, mild but fluctuating hearing loss and headaches before treatment. i had acute balance problems and worse facial twitching immediately after treatment which did settle. i have since had a steady deterioration in my balance, worse episodes of facial twitching (including my face getting 'stuck' which was rather scary), hearing loss which has not recovered as previously and have developed trigeminal neuralgia. i also had prolonged numbness of my scalp from the bolts from my head frame which was really quite unpleasant but is thankfully settling. i am glad i am not alone in my symptoms, and that the longer term outlook from radisurgery is good as it has not been a party so far! i have just received my appointment for my balance assessment today which warns me not to drive home as i am likely to feel worse after!! i am still waiting for my post treatment mri date, though i do have appointment with neurosurgeon in december.

[Tumbleweed]

Hi, Laleh:

It's good to have you back posting on this forum. Thank you so much for giving such a detailed report on your symptoms and your doctors' prognoses. This is very valuable information that will help others who are considering or have undergone radio for an AN. I haven't had any facial symptoms but if I ever do, I won't be quite as freaked out as I would otherwise be had I not read your informative post.

You said your tumor or facial nerve itself might possibly be inflamed. Here are some things you can do to possibly reduce the inflammation without resorting to steroids:

1. Avoid ingesting food and drink that is inherently inflammatory. These include alcohol, cane sugar, nightshade vegetables (eggplant, peppers, tomatoes and potatoes), coffee and polyunsaturated vegetable oils (butter, coconut oil and olive oil are okay).

2. Avoid becoming dehydrated, as this will decrease the blood flow to your cranial nerves -- blood flow which is necessary to carry away inflammation. Drink plenty of fluids -- except alcohol, which is very dehydrating.

3. Consider taking a natural anti-inflammatory twice a day on an empty stomach. Bromelain is derived from pineapple and is fairly effective. Flavenzym is a blend of natural enzymes that digest the protein byproducts of inflammation; it can be bought online at vitacost.com. Don't take bromelain or vitacost with food in your stomach, as it will only digest your food and not the inflammation.

4. Consider taking a short course of ibuprofen to get you past the acute stage of inflammation.

5. Eat lots of vegetables to alkalize your body PH. An acidic PH increases inflammation in the body.

I hope you feel better soon!

Best wishes,
TW

[suboo73]

Laleh,

Thank you for starting this thread!
As novagirl said, this information is invaluable to those of us considering CK in the future.
Continued healing to all of you who have undergone treatment!
TW - thank you for the tips on reducing inflammation - much appreciated.

Sincerely,
Sue

[lalehjg]

thank you again all!

I am glad this will be helpful to people considering CK.  I guess for some people like myself, CK has not been without its ups and downs (literally! ), and there has been "no such thing as a free lunch."  But still, this is a good lunch even if it has not been free, and I would do it again, definitely.

mattsmum:  thank you for posting and good luck with your follow up mri.  i had a balance test myself before treatment (ENG).  Is that what you're having?  Definitely have someone drive you there.  Like a nutcase, I drove myself there (I forgot I had to bring someone, my husband was unavailable, and my mother had something going on in any event).  Big mistake.  Take that whole day off if you an, and relax during hte test.

Tumbleweed:  oooooh!  thank you so much.  you are a wealth of information.  that is exactly hte kind of information i need.  I am typically clueless about natural remedies, and this is so very helpful to me, and I am sure to so many others!  May God bless you for this!   I have to say to deal with all the issues in my life, the post radiation effects of CK being only one of them, I had started socially drinking a little more, like only single malt whiskey, straight, and that got the dopamine going.  The HFS occurred after the whiskey.  I am not touching alcohol after this episode.  So helpful to hear about bromelain.  I will get that online.  and lots of veggies.  Great info.   Your post got me back into the right gear.  Thank you.


Sue:  you are more than welcome.!

Laleh

[lalehjg]

Oh.  and Mona.  Thank you so much.  Saying I have a problem with my facial nerve in social situations  is a good idea.  I've determined that, if I am not uncomfortable with it, and just name it for what it is, as you have suggesgted, then other people can be uncomfortable with it, but I will let that be their discomfort, and not mine. Thank you. 

[Tumbleweed]

Laleh, I thought of a couple other things that may help you:

I occasionally take a natural supplement called Stress Plus, made by a company called NOW (letters in uppercase). It would probably be an effective substitute for the alcohol to help you relax. It's a blend of B vitamins and an herbal extract of valerian root, both of which reduce stress by nourishing the central nervous system. Valerian is what pharmaceutical companies make valium out of. But valerian, being much milder and in natural form, is totally non-habit-forming.

As for inflammation and the related symptoms, I also find that eating salmon (or any other fish high in omega-3 fatty acids, such as trout) reduces my symptoms to a surprising degree. If you don't like eating fish, taking a fish oil supplement might help (dunno, as I haven't tried that). Omega-3 is anti-inflammatory. A side benefit of salmon is that it is very high in pantothenic acid (AKA vitamin B5), which reduces stress and prevents nerve degeneration.

Best wishes,
TW

[lalehjg]

Hello everyone! 

I have good updates and not so good updates, but altogether I am grateful.

Good updates:  my dizziness has subsided greatly, to the point where I don't have to hold onto things after I exert myself, such as come up the steps or exercise.  BEforehand, when heart rate went up, the dizziness would kick in with a vengence and a half.  It was horrible.  Now, dizziness is much more manageable.  Thank you God!

Not so good updates:  my face is going nuts.  i have hemifacial twitches, including eye twitches, snarls and all kinds of mayhem going on on the right side of my face whenever I:  exert myself, take a warm shower, think stressful thought, get a cold and cough (which is now), or laugh.  the only time it does not twitch is when i am sitting pretty motionless typing on my computer and thinking non-emotional thoughts.  My Drs. say the facial issues will go away.  Cannot wait.  Whatever you do, don't make me laugh!!!  Half of my face  will stay stuck that way for a while!!!

Good thoughts and prayers to all of you.  My 1 year MRI is in April. 

Love.

Laleh