FSR via Novalis - Post-Treatment Update - Ongoing Issues

[C Bourne]

YAY......  last day of steroids!  My faces, stomach, and knees are so swollen my skin hurts.  And my lower back is gets really sore if I stand for more than 10 mins.  Hoping everything will clear up in 3-4 days, and I can get back to work next week. Now I just get to see if the facial numbness works itself out over the next few months, or if it stays. At this point, even if it gets worse, I'm not going on steroids again. Considering it didn't do ANYTHING to help, and made life generally worse for 2 months, I'd rather deal with more AN symptoms than the steroid side-effects.

So yay for being done the steroids! I'll wait a few days for things to get back to normal, and if I still have the dizziness, next step is to find a good physiotherapy place for vestibular rehabilitation.

-Cyndi-

[Jim Scott]

Cyndi ~

I'm glad to learn that you're finished with the steroids and can now try to return to normal.  If the problems persist, vestibular rehab is a good (non-steroid) idea. Good luck!

Jim

[mk]

Hi Cyndi,

my experience has been that steroids don't help with the numbness. Numbness was my presenting symptom, which led to the discovery of my AN. I have had it for 3 years now. I have been on steroids a few times, for hearing loss. They did work for the hearing loss, but did nothing for the numbness.
Is your numbness really bad and bothering you? I have become used to it, and I am not really bothered by it, but I suppose mine is mild. The most annoying thing is the dryness in the eye caused by the numb cornea, but this also is easy to take care of with drops. I would say that numbness is certainly better than the steroid side effects that you have been having.
In regards to the balance issues, vestibular therapy has helped many people here.

Marianna

[mk]

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.

Oh, I just noticed these two paragraphs after posting. I have a couple of comments:
The exact same thing with blurred vision happened to me during the last 2-3 weeks. It happened very abruptly and I was very worried that it might be AN related, since my AN is larger than yours. I saw the optometrist two days ago, and after examining thoroughly my eyes he said that they are healthy, but the problem is that in addition to having a mild prescription for seen at long distances and astigmatism, I now need reading glasses too (badly I might add). The eye muscles are strained from the constant effort to focus at different distances, so the vision is blurry. I would suggest that a visit to your optometrist for a new prescription is not a bad idea.

The other comment I had is that numbness is not attributed to the facial nerve, but to the trigeminal nerve (or 5th nerve), which is a sensory nerve. It will also cause a burnt feeling to the tongue, might case a burning sensation on the cheek etc. This means that possibly your trigeminal nerve has been affected, either by the tumor or by the radiation (which I would think is unlikely).

Marianna

[C Bourne]

Thank you Jim and Marianna!

Luckily I don't have any eye involvement with my numbness - it's restricted to the left side of my tongue, far left quarter or so of my lips/corner of my mouth, and into my cheek.  I've been noticing that I have started to drool a bit on that side.    Mostly when I'm sleeping, but have caught myself a few times doing it awake as well.  I told my spouse and he jokingly said "well don't turn into a drooling idiot or we'll have to lock you up!"     Thankfully the blurred vision went away - only lasted for a couple of days.  However, I haven't tried pics with my camera since then - might have to and see if it's still a problem.

I have now been off the steroids for 5 days, but none of the steroid side effects have gone away yet - still have the moon-face (and general moon-body ), still having problems sleeping, and now I have withdrawal headaches!  Also, for the last 3 days it has felt like someone beat the crap out of me - I hurt everywhere! Almost all of my body feels like a big bruise - every muscle hurts.  And my back muscles all feel pulled or like I threw out my back, especially lower back, and between shoulder blades.  So bad that I can't stand or walk for more than about 10 minutes at a time.  However, if I sit for more than about 45 mins, all my muscles seem to seize up, and I have to get up and move around.  This is wonderful, considering I am back to work full time yesterday, today and tomorrow because I'm on a training course. It's software, so I'm sitting ALL day. I talked to the instructor and he's working in 10 min breaks every hour for me - very nice of him!

Anyways, my concern is the last time I came off the steroids, all these 'effects' went away by day 4, and things returned to normal.  I'm now 5 full days off, and no change. I'm starting to get worried that maybe this time they're 'permanent'.  That might not even be possible, and I'm just too impatient, but we all know what waiting is like - you start to think the worst.  Some of my family members think that because I've been on the steroids so long (I took for 5 weeks, then off for 1 week, then back on for 5 weeks) it might just take longer for them to 'clear' my body.  Anyone else want to comment on how long it took for 'moon-face' to go away after steroids, or any other effects?   

Also the dizziness has returned in full force - I'm having issues just walking down the hallways at work, so I will definitely be pursuing vestibular rehab.  Only issue is the 'best' place for it (as recommended by my doctor and several others) is nowhere near my work, but it is on my way home, so I might have to make arrangements to take off early for a few days to go to it in the afternoon.  Not sure if it's something you have to do multiple times a week, or more like once a week or once every two weeks.  Guess I'll ask!

-Cyndi-

[C Bourne]

Monday (18 days after coming off the steroids) I finally started to feel better!  It seems the steroids have cleared my system - unfortunately they left behind about 20 extra pounds...    Now I can start dealing with the left-over issues (ie: from my AN and treatment).

I started back to work full time Monday (desk job at a computer), and it is going ok. Some fatigue, headaches, and soreness/stiffness. Have to remember to take lots of breaks, and get up and walk around.  All of my muscles and joints are unhappy from the prolonged steroids and weight gain. My feet, hands, and lower back hurt most of the time, and I get quite stiff/sore if I sit for more than about an hour without moving.  The headaches are mostly controllable with extra-strength Advil. The fatigue is mostly caused by my ongoing dizziness.

I had my assessment at the physiotherapist's yesterday. She is trained in vestibular rehab, but has not specifically dealt with AN patients.  However, she was the only place I could find that had a location and hours that fit with my work schedule, so we'll see how it goes.  She started with testing me for BPPV, which I have (10-ish second spells of vertigo when I roll onto my left side in bed, and the corresponding funky eye movements), so we're working on that first, and then we will proceed with the general dizziness.  I get to do the Epley exercise at home for the next few days, and then follow up Monday.  Hopefully it goes away (for a while at least)!  While doing the test she induced the vertigo about 6 times - I felt so nauseous for the rest of the night!

Once I can get the vertigo and dizziness under control, then hopefully I can start an exercise program to get rid of all this extra weight!  My lower back is sore most of the time because of it, as well as my feet.  My feet have been swelling up on and off for the last 2 weeks, along with all the muscles and joints in them being sore (like they're bruised, or someone beat them).  It's almost like a whole other body that I don't recognize as mine.  I feel like my body has betrayed me - I want a new one! 

[C Bourne]

Guess it's been a while since I gave an update, so here goes...

I've been off the steroids for 2.5 months, and am still dealing with side effects related to them/withdrawal. I've never really taken much in the way of meds before all this, and it seems my body is not a fan.  I ended up gaining about 15 lbs, and am still having problems with water and salt retention/levels. I also still have muscle & joint pain, mostly in my legs (knees/feet) and hands.  I've been told it's similar to arthiritis - it sucks! I've been going to massage therapy and lymphatic drainage for 6 weeks now, and it seems to be helping. I would really like to exercise to try to shed some of the extra weight, but I can't even stand or walk for more than 30 mins without my feet swelling up. On the advice of my massage therapist I've started taking deep water aquacise classes - no impact, and good resistance level.  We'll see how it goes.

I am still having ongoing dizziness and imbalance.  As of my last post I was seeing a physiotherapist for vestibular rehab - unfortunately she turned out to be a quack, so I decided to stop and have just gotten into another place.  I'll have to see how this goes - hopefully it helps!

The facial numbness has spread into my upper cheek and temple area.  I told the nurse from the radiaology dept - she said she'd let the doc know, and that there's probably nothing to be done at this point (post-treatment swelling), except maybe another round of steroids.  I told her "I don't think you understand. Other than imminent death, there is no way I will ever go on steroids again! I don't care if my whole face goes numb!".  Considering they didn't help with the numbness last time, and have just caused no end of problems, I feel fairly justified in my stance. 

Hope you all are having a good summer!
-Cyndi-

[mk]

Cyndi, sorry for the continuing problems.

For what it's worth, numbness was my presenting symptom. Since I was diagnosed I was on steroids several times for hearing loss. They did help with the hearing loss, but never with the numbness. My numbness went away after the AN was removed surgically. So I think it was a direct consequence of the tumor touching the trigeminal nerve, and not related to swelling. So I think you are right not to take steroids at this point, as they are unlikely to do anything for the numbness.

Marianna

[C Bourne]

Another new 'side effect' has presented - I am losing my hair...  :S 

I have long, fine hair that is usually very thick.  I regularly shed/lose hair (it's an ongoing joke as to whether me or the dogs shed more ) - maybe a handful a day, and have my whole life.  I did notice that when I was on the steroids I barely lost any hair - noticeable because I'm used to losing it at a certain rate. I thought it was a bit strange, but assumed it was the drugs and it would go away.  In the last 4 weeks I have been losing it at about twice the rate I normally do - multiple handfuls when I wash or brush it.  It's to the point that I've noticed that overall I have between 1/3 and 1/2 the thickness of hair I normally do.  It's freaking me out a bit.  I can't see it being from the radiation (it's been a year), but it wouldn't surprise me if it's another side-effect from the steroids.  And...  I have no idea if there's anything I can even do about it.

I doubt it's noticeable to anyone but me - as I said, I've always had really thick hair (ie: lots of it), so I guess now I have a 'normal' amount of hair, but it's not normal to me.  And it just keeps coming out... If anyone has either experienced something like this, or knows of anything to help prevent it, please let me know! 

Other than that, I have my 1-yr follow up MRI, an Audiogram, and a Radiology Doc appt within the next month.  Can't believe it's already been a year!

EDIT: After some searching, it appears that the hair loss is not unheard of and could be caused by the meds/stress.  Everyone says it grows back, so I will just chill out and wait!  Actually I should be happy I guess - I always curse my long heavy hair in the summer because it's so hot - now it will be cooler!

-Cyndi-

[Jim Scott]

Hi, Cyndi ~

Thanks for the update.  I'm sorry you're forced to deal with hair loss, apparently as a result of a combination of medication and stress.  Of course, if the stress aids hair loss and your hair loss causes stress, it could be a spiraling situation, but I'm sure that won't happen now that you have a handle on the reasons for it.  Still, I can see how losing handfuls of hair would be upsetting, especially for a young woman.  I trust the situation will abate, soon. Keep us updated.  Thanks.

Jim