FSR via Novalis - Post-Treatment Update - Ongoing Issues

[C Bourne]

I am starting a new post in this forum, which I should have done a long time ago, to chat about my post-treament issues.   My original decision/treatment/post-treatment post is here:  http://www.anausa.org/smf/index.php?topic=11950.0.

Update:
I have been off the steroids since last Wednesday (so 6 days now), and things have basically returned to where they were before I started the steroids, and I have new symptoms.  Which leads me to believe the steroids really didn't do much except make me feel like crap for 5 weeks.

When this first started on Jan. 11 I had constant 'room-spinning' vertigo (not fun), and some shooting pain in/around my ear canal, which then transitioned into increased/different tones of tinnitus for 2 days (I normally have a constant level), and then into about 4 days of noticeable hearing loss, while the vertigo gradually improved.  Over the last 5 weeks I have had various different symptoms each day - some days I felt almost normal, while others I was almost incapacitated.  I had 10 days of tapering down the steroids starting Jan. 31.  I was hoping that everything would magically disappear after the steroids left my system.  Not so much.....

I now have a constant level of dizziness - just enough that I am off-balance, and some days I can't drive. I live on an acreage, so I have to drive to get anywhere.  Luckily I can work from home.  I also have episodes of 'room-spinning' vertigo, mostly when I roll over in bed, or get up from the couch, or turn my head fast, so basically change orientation.  It gets worse when I use the computer.  Which is what I do for work.

I pretty much have a constant headache.  Most of the time I can control it to a manageable level with extra-strength Advil, but some days that's just not enough, and I don't have anything else. This also seems to get worse when I use the computer, so also affects work.  Will be asking the doc for something stronger.

The tinnitus is constant, and I have learned to live with that, but recently it has been changing - I get new tones, or days where it's much louder.  I find I get fatigued faster when that happens.

The hearing loss has increased (gotten worse) - again, nothing much I can do about that.  I only really had a couple of days where it was noticeable, and now that it's stabilized at this new level, I'm used to it.

I still have shooting pain right in front of my ear - it comes and goes.

Edit: I also have some blurred vision - this started while I was on the steroids - the nurse said it was likely related to that.  However, it didn't really go away.  My vision all of a sudden seems to have gotten a step 'worse'.  I already wear glasses (for seeing far), and I have significant astigmatism (it's actually worse than my vision impairment).  I noticed that all of a sudden it felt like my glasses wouldn't focus 'all the way'.  I tried rubbing my eyes, and cleaning my glasses, but nothing helped.  Close-range is fine, but far-range is a bit blurred.  I also tried taking pictures with my digital SLR camera the other day, and I simply cannot get focus through the viewfinder even with my glasses and adjusting the viewfinder (I was shooting macro).  Very annoying.  So I just shot a bunch of pics, and then loaded them on the computer.  When I look at them close range on the comp, I can see them in focus, so it's me and not the camera.  I have a regularly scheduled vision exam in July - I might go a bit early to see what they say.

My newest complication is the facial nerve.  Up to this point I had no facial nerve involvement, except when I was really stressed or tired, I would get a bit of an eye twitch.  When I was on the steroids I noticed that my face, hands, and feet were swollen and numb.  The docs said this was attributable to the steroids and not to worry.  Well, I've been off for 6 days now, and the swelling has gone away, but I still have numb parts of my face, and they're specific to the AN side.  The left edge of my tongue and the left corner of my mouth are numb, and I have a tingly feeling across my left cheek.  This is starting to worry me.

So when I had my meeting with the doc on Jan. 26, he said there was NO growth on the MRI, and that he wasn't really sure what might be causing the symptoms, but that even small growth around the nerves could account for it, and perhaps that wouldn't be obvious on the MRI.  I'm thinking they don't know any more than I do at this point.  Scary.   So I put a call in this morning to update them on the fact that I am now off the steroids, and still have all my symptoms, and where do we go from here?  

Personally, I'm thinking about pursuing vestibular rehabilitation.  The dizziness is the symptom that is impacting me most as far as being able to work and generally function.  If I could get that under control, things would be better.  I'm also hoping the doc can give me a scrip for some sort of painkiller for when the headaches get too bad.  I don't know what to do about the numbness..........

Will let you know what the doc says - hoping they get back to me later today or tomorrow.

-Cyndi-

[Jim Scott]

Hi, Cyndi ~

Thanks for the update although I'm sorry to learn of your ongoing complications.  Your frustration is perfectly justifiable and your growing fear that things are not improving and may even get worse are also understandable.  Of course, we hope none of that happens.  I certainly won't attempt to diagnose the exact cause of your current issues but I will speculate that the facial numbness may be temporary as the tumor swells, which is normal, but I hope the doctor can pinpoint the cause of your problems so you'll (a) be able to address them and, (b) gain some peace of mind as well as feel better, physically.  I always caution that radiation is not a panacea and carries risks but, in my experience, FSR carries the least amount so I'm dismayed to learn of your post-FSR problems at this point and, again, hope they can be soon resolved.  Please keep us updated.  Thanks.

Jim

[C Bourne]

Jim, thanks for your reply!  It is somewhat unnerving to only start experiencing certain issues 6 months after treatment, but it is not unexpected or unheard of, and I hold onto hope that it is all related to post-treatment swelling, so hopefully it doesn't progress, and there's an off-chance it might even regress.  Trying to take it easy and go with the flow!

So I spoke with the nurse yesterday - as I expected they want to put me back on steroids, with the idea that this is post-treatment swelling/thickening, and that controlling the swelling should control the symptoms.  I really don't want to go back on the steroids - I hate the side effects.  However, I am concerned by the new facial nerve involvement - enough to go back on the steroids.  So I've decided to go with it, and asked if I could be put on the highest dose they're willing to give me, because I want to get it over with and off them as fast as possible.  The doc will only give me 2mg 1x day.  Previously I took up to 1mg 3x day (total of 3mg), but he thinks a 2mg dose at once will work better, and as I will take it in the morning, hopefully I won't have insomnia too bad.  He wants me on that for a week, and if nothing happens, then they'll up it.  I really don't want to mess around for several weeks finding the right dose - hence why I asked for the highest they're willing to go, but that's it.  I guess we'll see if it works.  I didn't see any improvement the first round until I was at the 3mg/day level, but maybe with a bigger 1 time dose it will work.  From reading on here, it looks like most people start with a higher dose - 4-6 mg.  I'm not sure why they are starting me so low.

Also, I have had a few days where the extra strength Advil just does not put a dent in the headaches, and have had nothing else to take, so I asked what they could do.  First response was Tylenol 3, but codeine and I do not get along (hence the Advil).  So they've given me 5mg pills of Morphine, and said take 1 or 2, only if the Advil doesn't work.  I've never had it before, so this might be interesting.

I've also put work on notice that I have to go on meds again, so I will be working shorter days (maybe even not some days), and will likely do most of it from home.  The combination of the symptoms and the steroids make it difficult for me to work on a computer for 8 hrs a day for various reasons (headache, dizziness, fatigue, nausea, blurred vision).  If I'm lucky the steroids will work on the AN symptoms, and cause little of their own side-effects, and I might be able to work more than I expect.  However, given last round's experience, I think I will be limited to 5-6 hours a day with frequent breaks.  I feel bad that this whole symptom flare-up is affecting my work and potentially my co-workers - now the timelines on my projects will slip, and other may have to pick up some of the slack.  And it's unpredictable - it might take 3 weeks and I'll be all better, or this could drag on for several weeks or months. It's very frustrating for someone like me who generally leads a very ordered/controlled life.

One other concern - we were planning to take a sun vacation to Varadero (Cuba) on Mar. 20 (plan to book last minute deal) - this is our yearly spring vacation. If I am still on steroids by then (4 weeks from now, so quite likely), I doubt I will want to go, and it may not be a good idea.  Also, if I am still on Short Term Disability, technically I cannot take any vacation days.  So that would mean no vacation for us this year.  The timing sucks.  But I should really not worry about that until it actually gets close to the day, because it's possible that I might be done the drugs by then (good vibes in that direction).

We have a Feb. long weekend in Alberta - Monday is 'Family Day'.  Traditionally my spouse and I go winter camping and quadding (ATV) with our friends.  And in case you're wondering, yes there is snow everywhere, and yes it can be cold.  The forecast for Friday is not great (-18C/0F), but Sat and Sunday are supposed to be relatively nice (-5C/23F and 0C/32F), with it getting colder Monday (-8C/18F).  We have an RV (Toy Hauler), which is heated, so it's not too bad.  But you can't use any water (ie: the bathroom) because the lines aren't winterized, so it's the outhouse.  We spend the evenings sitting around a big fire, drinking beer. I haven't been out on my quad in quite a while, and I want to go, but I just don't feel up to it, especially when I will start the steroids tomorrow.  So he will go, and I will stay home alone, and maybe watch movies or something.  I'm sad already.  I am so not looking forward to the next 3+ weeks.  I may need to invest in copious amounts of chocolate... 

-Cyndi-

[C Bourne]

I was submitting my prescription receipts for reimbursement this morning, and realized that either I misunderstood, the nurse told me the wrong thing, or the doctor or pharmacy messed up the prescription, but I have been taking double the dose of steroids I thought I was taking...

The pills are actually 4mg, not 2mg as I thought.  Originally with the first round of steroids, the nurse told me I would be taking 1mg 2x/day, but that the pills were 2mg, so I would take 1/2 pill.  I never really looked, just started taking the pills as directed (directions in big letters on the bottle, dosage in small letters).  So started at (I thought) 2mg/day, then up to 3mg/day (1mg 3x/day), then taper down to 2mg/day (1mg 2x/day) then 1mg/day.  However, now I know that I was taking double that, so started at 4mg, up to 6mg, then down to 4mg and 2mg. 

This round, they've started me at 2mg 1x/day.  At first I thought "okay, I haven't taken 2mg at once yet, so that might be helpful to stop the symptoms".  However, now I know that 2mg 1x/day is the same as the lowest dose I took at the end of tapering, which obviously won't do much.  I was seeing some control of symptoms at 6mg, which is why they tapered me off, but then the symptoms returned.  So I have a call into the nurse to explain this, and ask if I can up the dosage, because I want to be on these steroids as short a time as possible, not screwing around with low dosages.  Unfortunately she only works TWR, so I won't hear from her until Tuesday.

So......... should I just start taking the 2mg 1x/day for the next 5 days until I hear back (and basically waste a week), or should I up the dosage myself to at least 4mg (2mg, 2x/day)....?  I'm normally one to just follow whatever the doc says, but the last round they wanted me to do 1 week (7 days) of tapering at both the 4mg and 2mg level, and I really wanted off the drugs, so I just did each for 5 days.  Technially it's my body and I can do what I want, but if I start messing with the meds the doc/nurse might stop playing nice with me.

General comments/thoughts on doc's orders, meds, etc.?

-Cyndi-

[sunfish]

As for the meds, you should call the nurse and be really specific with them about your questions. 

Sounds like you have a lot of the same issues I've had (I've had little/no facial issues).  Your vision problems are likely due to vestibular reasons.  Myself, I have an appointment at a specialtiy clinic in about a month for my vision.  Frustrating, because very, very few medical folks see AN patients.  So the "it's the steroids" comment may be completely off base.  I've had real trouble this year finding anyone who understands my balance/vision problems, and these folks that don't have a clue about why I have these troubles tend to just dismiss them saying, "Oh, don't worry, I'm sure it will gradually improve . . . "  Well, it's been long enough that "gradually"  should be now, and I'm still stuck not being able to see properly.  My docs have discouraged steroids, due to high blood pressure.  The one time I tried them post-treatment, they didn't seem to help.

Sorry for the rant!  I do feel your frustration, and concern over how this affects your quality of life.

[C Bourne]

Sunfish, thanks for your rant!  It made me feel better...   

So I decided to just be patient and go with the docs orders, even though it means I will likely have to put off doing certain things I had hoped to be doing (like vacation) as I don't want to travel when I am not feeling well.  I went on 2mg steroids for 4 days until the nurse returned and got back to me on Tuesday.  The dose wasn't doing anything to control my AN symptoms, but was giving me all the fun steroid side effects (insomnia, water retention, stomach issues).  On Tuesday she told me I could go up to 4mg (2mg 2x/day), and to call her back today with a status report (so that will be 3 days on 4mg).  Still doesn't seem to be doing anything on the AN symptoms - still have tongue/lip numbness and dizziness, and all the rest of it.  So guessing I should ask to bump up to 6mg (2mg 3x/day).

I may just be worrying beyond what I should be, but how far do you go with the steroids?  Could the new facial numbness be 'permanent' and if so, how far do you go with the steroids?  They have their own nasty side effects, which increase with dosage.  If the numbness doesn't get better at 6mg, do I keep going up?  Is there a point where you give up on the steroids and just assume what you have is permanent?  I should probably just try to relax and see how things go at 6mg before worrying about all this, but it is always in my mind.

So there's my rant for today.  Hope others are having better days!

-Cyndi- 

[C Bourne]

Update:

On day 13 of round 2 of steroids with no bettering of symptoms.  Still the same facial numbness, changing tinnitus and level of hearing, dizziness (periods of vertigo), and the headaches/fatigue that go with the brain trying to compensate for balance all the time. They started me at 2mg for 4 days, then 4 mg for 3 days, now 6 mg for 6 days with no effect (other than the fun steroid side-effects!).  I called into the Radiosurgery Nurse yesterday morning with an update (as she requested) to ask what to do from here?  Up the steroids again for another week and hope it does something?  Or give up and assume the current symptoms are 'permanent' or at best, will go away on their own...?

Anyone else have issues like this with the steroids?  Where they don't seem to actually do much?  Or do I seem to be on too low of a dose, or perhaps not long enough?? 

Edit: She just called me back.  The doc believes that steroids may not control the current symptoms, and they may just have to work themselves out on their own.  They have a subset of patients with the same issues where the steroids just weren't the answer apparently.  Said it sometimes takes 1 year or more for increased symptoms to level off, or stabilize.  They're not yet willing to say that my current level of symptoms is 'permanent', which I can appreciate.  So it's more a wait and see thing (which I'm not terribly good at).  They've decided that they don't want me to go any higher dosage of steroids, but if I want to I can continue at the same dose for up to another 2 weeks to see if it will do anything.  My choice.  However, the longer I'm on the dex, the longer I have to take to taper (and more levels), so I could be on this stuff another 4-7 weeks.  I really hate the steroids and side effects. 

So now the decision is whether to put up with the steroids for longer in the hopes that something *might* happen.  Or take the current level of symptoms as my new base, find ways to move on, and get off the steroids over the next 2 weeks...   I'm tending toward the latter - I'm more of a make a decision and move on kind of person.  Will take today to think it over. 

Your thoughts/comments always appreciated!

-Cyndi-

[Jim Scott]

Cyndi ~

I'm sorry to learn that your frustrating, ongoing symptoms may not be able to be controlled with steroids and may have to simply resolve 'on their own', which may take months.  Not the kind of news you want to hear, I know.  Who would?  I didn't have your experience but it seems to me that if the steroids aren't really effective and the side effects are a hassle you don't need, I would taper off and stop them at this point.  Yes, as you stated, you may have to accept your current state as your 'new normal' and work forward from there.   Of course it's your decision and I can tell you'll make it and deal with whatever happens from that point on.  I admire your determination and sincerely hope that things will soon improve for you.  Please know that you have the support of many folks here as well as prayers and warm thoughts as you struggle with your recovery.  A struggle I'm confident you'll win, in time.

Jim

[sunfish]

I really don't think you should worry about your symptoms being "permanent."  I'm not a doctor, but my understanding is that, with radiation, it can take a couple years for everything to settle out.  At least that's what my neurosurgeon told me yesterday.  He said I could still be in for some changes, for better or worse, over the next year.  I'm one year out from treatment with CK.  I've had a lot of balance problems too, with some minor improvement over the past month.  No steroids.

I'm taking trental, to help fight radiation-induced side effects.  It's  helps improve blood flow at the microvascular level, I think.  I do see mention on the Cyberknife site that the docs sometimes prescribe this for their patients.  Quite frankly, I'm not all that sure how much it has or hasn't helped.  I don't tolerate the stuff  well - lots of stomach issues.  It takes a couple months for the trental to help, according to various internet articles.  So it's not a quick fix.  I haven't sought vestibular therapy, but lots of folks on this site swear by it.  To me, sometimes it just feels better to feel like you're trying to do SOMETHING about these side effects.  Let us know how it goes.  Take care!

[C Bourne]

Jim, sunfish, thx for you responses!  It helps just to have people understand.

As you can probably guess, I decided to start tapering off the steroids, and just accept and move on.  Either things will get better or they won't, but what I can immediately control is the steroids, and I want off since they don't seem to be helping.  I feel better already looking forward to getting back to my old/new self (off the drugs), and continuing pursuing other options (vestibular rehab, etc.).  Have to keep reminding myself that even though my 'treatment' is over, things WILL crop up from time to time, and to just take it in stride and go with the flow.

Here's to a feeling better and having a great weekend - hope you all are too!

-Cyndi-

[C Bourne]

Had a bit of an issue this morning that I thought I'd share, in case anyone else has had this and is wondering about it.  I did some searching and only found a little bit of related info from others in the past.

Woke up around 5:00am with the most unimaginable pain I had ever felt, in my knees.  To try to describe - like all the bones inside both had been broken.  A deep-seated bone pain, not muscle at all, that just seems to radiate from everywhere, and then pulses from time to time.  I tried massaging them, bending/straightening them - nothing helped.  It was agony.  I decided to get out of bed, but found I couldn't really walk - I was able to make it down the hall by holding myself up with hands on both walls, locking my legs, and sliding my feet.  Sitting didn't help - any position the knees were in provided pain. 

I had read that joint pain can be a side effect from steroid usage, particularly when you're coming off.   I did experience a couple of days of moderate joint pain (like what you might have the day after working out really hard) in my hips and knees when I tapered off round 1.  And seeing as I'm coming off round 2 quite close to the first (I had 7 days off steroids completely in between rounds, round 1 lasted ~5 weeks, round 2 I'm 16 days in), I'm guessing it might be related.  But I had never had pain like this before, ever. 

I wasn't really sure what to do, since this was new, and I was getting a bit scared.  My nurse is only available 3 days a week, but I could call the emergency pager if I wanted.  Wasn't sure that was warranted.  Only thing I could do was distract myself from the pain, so I kept alternating shuffle-walking and sitting, and bending, all very painful.  Spent about 2 hours in agony to see if anything new would happen. At that point I had to do something, so I decided to take some morphine - the doc has given me a small dose scrip for it as a pain killer for headaches when the Advil doesn't work.  I hadn't used it yet so I wasn't sure how it might affect me, but had tried Advil already first thing this morning and it did nothing. So took 1 morphine pill (5mg), and within about 30 mins the pain was gone, just a dull ache persists. THANK GOD!  I wasn't sure I was going to be able to take the pain any longer - apparently I'm a big wuss!  Since I haven't taken the morphine before, I'm not sure how it will affect me otherwise, so I'm taking it easy on the couch for the next few hours to see what happens.  I am a bit light-headed, but I'm dizzy all the time anyways, so that's not a big deal.  For now, it's a life saver!

Will let you know how this new fun progresses...

-Cyndi-

[C Bourne]

Rest of yesterday went fine.  Pain was down to a bit of an ache, and some light-headedness, but manageable.  Was pretty tired by the end of the day - in bed around 22:00.

Woke up this morning around 04:00 to feel the knee pain flaring up again.  Waited about 20 mins as it got worse, and then decided to try the morphine again. By about 06:00 the pain was a bit dulled, but still coming on with a vengeance, so I decided to take my first steroid pill an hour early.  Seems the dex has really screwed me up now.  The nurse was a bit concerned that this might happen and I might need a longer taper off.  Boo - I want all the steroid crap to go AWAY!!!  I'm on first taper level now - 2mg 2x/day.  I try to take the first around 07:00 and the second around 12:00 so that I can hopefully get as much sleep at night as possible (I have the insomnia too, and even with OTC sleep pills am getting about 5 hours).  Looks like I might have to spread that out a bit further, and she mentioned going down to both 1mg and 0.5 mg options.

Of course now my thoughts are trending towards wishing I had never taken any steroids.  In the midst of the pain my mind says more hearing loss, dizziness, and some permanent facial numbness has got to be better than this garbage.  But that's probably the pain talking.     Also just hoping there's nothing else/worse going on here.

-Cyndi-

[C Bourne]

Good news - no pain this morning! Just an overall achiness in the knees, hip, ankles, feet, and very tired. Even with a sleeping pill I was awake most of last night, I think worrying about the pain returning in the morning. Oh well, I'll take the insomnia over the pain. Nothing a day relaxing and taking it easy won't help! 

Hoping this means the steroids are working their way out of my system properly now.  I am going to be very strict on the timing of the remaining dosages, hoping that it will help to manage any other fun side effects.   
Here's to hoping everyone else has a good week!

-Cyndi-

[Jim Scott]

Cyndi ~

Hallelujah!  I'm so glad to learn that your pain is diminishing and you're feeling better.  I trust things will keep improving for you.

Jim

[C Bourne]

Thanks Jim!  Pain free is the way to be... 

However, the shenanigans continue.  The doc just called and they want me to taper off the steroids even slower as they think that now they're causing half of these issues by me coming off too fast, considering they put me on two rounds so close together.  So now they want 5 days each at 3mg, 2mg, 1mg, and 0.5mg.  That's 20 more days!!!  ARGHHHHH!!!!  These steroids are seriously making my life a living hell.  My face looks like I've gained 15 pounds (all my family could say was "you're so... round"!) and most of the time my skin feels so stretched out I feel like it's going to pop! And the stomach problems along with the distended belly are just too much.  The vertigo comes and goes, but I'm left feeling 'wonky-headed' most of the time, and it's making it almost impossible for me to even work from home.  Everything tastes like ash, but I still want to eat everything in sight.  And there's always the insomnia.  I HATE STEROIDS!  I've never had any previous major medical issues nor really been on any major medications before all this AN stuff.  It's obvious my body does not deal well with it.

I was scheduled to perform in a music festival competition this Saturday - something I have been working on for several months and looking towards.  I had to withdraw because I have just not been up to practicing for the last few weeks and really don't feel up to performing.  That makes me sad.  In general I just don't feel very motivated to do anything.  Some people say the steroids give them energy - not me.  I just feel like crap 100% of the time.  The only bright spot in my upcoming life is I get my yearly bonus next week, and I'm planning to spend it on a bunch of fun things.  I think some retail therapy will help distract me and make me happy for a while, until all this steroid stuff works itself out.

Sorry - needed to rant.  Hope everyone else is having a better week.