ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: free2be on December 15, 2010, 12:48:21 pm
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I have had head pain since my CK, which the doctor indicated was probably the trigeminal nerve (also have face pain and some numbness that is worse sometimes than others). It's in a couple of areas: jaw, cheek bone up to temple and a little above the temple and also a lot mid way between the temple and the middle of my forehead like at the corner of a right angle there -- an inch or so above my eyebrow toward the outside (if that makes any sense). I am getting some mixed messages on how typical this is and whether it really is the trigeminal nerve. I did not have much of any indication of trigeminal nerve involvement prior to CK; I did have some twitch in that eye lid and jaw pain, which I attributed to TMJ. Now I am wondering about that.
The pain has been fairly constant since CK, though definitely worse at times. Yesterday I started having stabbing pains in the area (near temple and slightly above). They weren't pleasant. A dose of steroids has been discussed, but there seems to be some question about whether it is from that or not. Whatever it is, I didn't have it before CK; that's all I know for sure.
Anyone else experience tender areas or small issues on the non-AN side after CK. Nothing terrible, but supposidely that side doesn't get enough to cause problems, yet I know the beam came from that side part of the time. It has to go through to get to the other side. It kind of seems logical that there could be minor impact.
I'm having a notable amount of memory and cognitive issues now. I mean, not terrible, but concerning. Dr. Chang said that is typically from the proteins that these tumors excrete both treated and untreated. I guess there isn't much to be done about that :(
Any thoughts on the head pain issue would be appreciated. This wasn't on my radar going in, but that's what I get for trying to know everything -- you can't!
Thanks,
Connie
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Connie ~
I'm sorry you're experiencing these trigeminal nerve pain problems. I'm not a CK patient and can't offer any advice from personal experience but I suspect that tumor swelling - common at this point after CK - is pressing on the trigeminal nerves and causing the pain, but this is pure speculation my part. You have an excellent doctor and I willingly defer to his opinion on this. I believe steroids may help, but again, that is just an uneducated opinion. I'm sure other CK 'veterans' will have better advice. I just wanted to acknowledge your post and offer my concern. I hope this pain will resolve, soon.
Jim
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Hi, Connie:
So sorry you're going through this. But I do believe you will feel better soon. You're coming up on the 3-month mark since having your treatments, and that's when quite a few CK "veterans" have started to have flare-ups. The first six months are typically the hardest. I know it seems like it will go on forever, and it's natural and common to fear you will be the odd case that never improves symptom-wise, but the odds are overwhelming that it will get better.
I had some intermittent stabbing pains in my temple on my AN side; only perhaps 4 or 5 times total, and very early on after getting CK. A few other CK-ers have reported the same thing. It will likely stop very soon and won't return.
The best advice I can give is for you to be as healthy as you can be in your lifestyle right now. It does make a difference. There is no silver bullet, but the more rested, exercised and well-nourished you are, the better your endocrine system will deal with the inflammatory compounds your dying tumor is producing (which is likely what's causing your memory and cognitive issues and possibly what's irritating your trigeminal nerve). This is what steroids do for us when our body's own natural defenses can't do it enough.
Speaking theoretically, the other thing that could be causing your facial symptoms is your tumor might have swelled in size in response to the radiation. Don't be alarmed (I'll explain why this isn't all-bad in a moment). Your tumor was 1.6 cm at the time of treatment. If it has swelled a few centimeters more along the transverse axis, it could possibly be elevating your trigeminal nerve at the root entry zone (where it enters the brainstem). Please keep in mind that this is pure conjecture on my part; I mention it because my tumor was doing just that to my trigeminal nerve when it was around 1.8 centimeters along the transverse axis. Now here's the reason why you shouldn't be alarmed: First, the trigeminal nerve is very resilient. If it is acting up because of pressure on it from a swelling tumor, then your facial symptoms are very likely to decrease and ultimately go away when the tumor shrinks, as it is extremely likely to do over time. Second, Dr. Chang told me -- and this was borne out by my own personal experience -- that an intense flare-up soon after CK treatments is an indication that the tumor is reacting very positively (strongly) to the radiation treatments. In other words, you probably feel so lousy because your tumor is dying very rapidly. It's a rocky road, but there's a rainbow at the end.
Hang in there.
Best wishes,
TW
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Thanks, Jim & TW.
I'm hanging...in somewhere!
Connie
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thanks for the explanation. I've had facial spasms starting 3mos. after my CK (Kaiser SF in August). They spasms have continued, several time a day, for nearly two months. I get the same explanation -- that this is part of the process -- and will go see my neurosurgeon (Dr. Tse @ Kaiser Redwood City) next week.....
Has anyone else been prescribed Decatron to deal with this? It seems to be the only thing available, and I can't tolerate the insomnia, irritability, and weight gain....
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Dalesings2u:
Decadron, a steroid, might indeed help if the cause of your facial spasms was due to inflammation (including the tumor swelling). Have you considered trying over-the-counter anti-inflammatory drugs such as ibuprofen? That might bring you some relief.
Best wishes,
TW
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Hi, Connie...
I sympathize with you...as our AN's are pretty similar. My CK treatments took place in October '09. I started having jaw spasms in the summer of 2010. "Ice pick" pain...but it didn't last more than 1/2 a minute. Would go away, and come back several times in a day. I would have many days of NO pain or spasms. Headaches usually accompanied these. My second MRI done a couple of months ago showed that the AN is losing it's blood supply, getting black dots in the middle of it. So that's a really good thing. The doctor said "any number of areas in the face/head could be affected ...swelling...etc. but it was not to be a concern." As far as memory loss is concerned....I'm 72, so I'm sure that part of what I'm experiencing is just due to aging...but it can be very frustrating. So I'm learning to just live with it..knowing that the treatment is WORKING...and that's the important thing. I believe, in time, the discomfort will subside once the little "bugger" is dead!
Hang in there...each day is an improvement...
Barbara
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Hi. Connie,
I had GK and I can sympathize with your situation. My AN was already doing a tango with the trigeminal nerve and it was the facial numbness that finally alerted the medical community to my situation. After GK, I had so many zips and zaps and nervy things going on and it was pretty unsettling, let me tell you. It finally settled down, but it took awhile. If you want to read my story, just go to the link below and you can find it there. Everyone's body reacts differently to treatment, and I really hope that this is a short lived event for you.
Sue in Vancouver,USA
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Thanks to all for your input. My biggest issue "now" is the cognitive stuff. I see that many experience it, but not really getting that from the doctors and so I'm confused. I'll post something to the cognitive area later.
Connie
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i did have facial twitching and numbness prior to radiosurgery - have had a whole lot more since plus facial pain.
my tumour has swollen , is pressing on the trigeminal nerve and the brain stem where thhe root of the nerve is is inflamed too. i am told it should settle in time. don't know how long though. i am 6 months post now - the next 18/12 could be long.
viki
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This was a very helpful topic. I have had temple pain, eye pain, face pain along the lower eye orbit, sensitivity to light, and all those weird momentary (or icepick) pains. I feel better emotionally after reading this thread. It means the procedure is working! Patti