Post CK trigeminal nerve issues. Anyone else had this?

[free2be]

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 and then toward the top of my head also (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,

[Adrienne]

Hi Free2be,

Sorry, I can't respond specifically to what you are going through, but here are my thoughts on it.

I had no face pain, numbness or anything prior to surgery.  I did have sharp, electric shock like pains down the side of my face and jaw line increasingly as my surgery approached.  Turns out my tumour was *very* involved with my Trigeminal nerve.  After surgery, the shocks completely went away as my tumour was no longer 'irritating' the nerve.  I was left with numbness on that side of my face though (and half my tongue, etc).  It has gotten increasingly better over time though.

I suspect (I use this word b/c I don't have proof-this is just based on my discussions with my neurosurgeon, the reading I've done, and my experience with the Trigeminal nerve) that maybe the CK caused your tumour to swell a bit (I was told I was not a good candidate for radiation b/c they couldn't risk the tumour swelling at all) and that it is now irritating your Trigeminal nerve.  This would certainly explain the stabbing pains you describe.  I know that mine was not a constant thing, it was initially VERY sporadic and got more frequent as time went on (but still wasn't an 'all the time' thing).  I should have researched you and prior posts before responding to this (I admit, I didn't) to see if you have had a follow up scan to see if yours grew/swelled at all, or if you are one of the ones that had it shrivel up (in which case, this scenario isn't likely.....).

My memory has always been terrible and if possible seems worse after surgery too.  I'm told it's unrelated, but I see/hear it too much as a complaint on this board to believe that.

I hope that if it is caused by swelling, that you will see an improvement over time.

I know that I was given some meds prior to surgery to take for the electric shock pains and they were the same meds used for Trigeminal Neuralgia.  Unfortunately, they caused some pretty nasty side effects for me (double vision, dizziness, headaches) and I wasn't able to take them long enough to see if my body regulated and got used to it (friends told me it would eventually stop affecting me that way).

Huge (hugs).

Adrienne

[sunfish]

Hmmm . . . are you saying this is on your non-AN side?

I do have lots of weird twinges on my AN side only, which must be trigeminal nerve.  In fact, I do think this was my first AN symptom, although I didn't know it - tingling skin on the inside of my ear.  Absolutely no trigeminal issues on non-AN side, though.

I have blood pressure problems after CK, which I didn't have before.  I emailed Dr. Chang, and he said a person can maybe get this if your AN is on the left side, but mine is on the right.  So I'm always wondering if CK affected my non-AN side somehow.

I have some neck pain, mostly on non-AN side, like fatigue or something.  I think I'm holding my head differently due to "vestibulo-ocular" issues (in other words, vertigo & nystagmus).

[free2be]

Thanks Adrienne & Sunfish,

I'm trying to digest all of what you said (seems to be more difficult these days). Adrienne, no, I'm not saying the trigeminal nerve pain is on the non-AN side; it is on the AN side. I've just noticed some other minor pain and stuff on the non-AN side that I can't help but wonder if it is from the CK going through that side a little as well.

Actually, the thing I'm most concerned about right now is the cognitive stuff. It seems to be getting worse, though not radically or rapidly. I just can't concentrate or work through things with several elements to them like I used to, short term memory is a joke a lot, concentration...blah, blah, blah. have talked with dr chang about this and he's mentioned protein secretions and hydrocephalus and only way to know is with spinal tap and I don't want to go there! I've read some hydrocephalus can show a normal or variable pressure and so doesn't seem like that's a true diagnosis for sure. Don't know if MRI this soon would show anything or not. I've got to actually talk to him, i guess. I just can't get my head around stuff real well right now; so it makes it difficult.

Thanks,
Connie

[JLR]

Hi Connie, I have days where I have difficulty putting a sentence together. I was having a conversation with my husband this morning and he said yeah go on...and I said, oh forget it, I forgot was I was saying!  Also have slight pain (not unbearable on AN side) and noticed that inner ear is kind of numb in places as well as my cheek and mouth. I had my 3 week followup at Winthrop this morning and my doctor, Dr. Jonathan Haas, ( who is a wonderful physician) said all these symptoms are normal for post CK and since they are not major he wouldnt recommend a steroid at this time and has me scheduled for an MRI in mid Feb. He did say the pain and numbness can also be caused by the tumor sitting or or near the trigeminal nerve and the AN does swell a bit from the CK but said its likely to subside. I do hope you start to feel better.  Have you tried just an Aleve.  I find that is the best pain relief around. Joan

[JudyT]

Hi everyone.....been a long time since I have visited here....good to be back. I have tinnitus,trigeminal pain,ssd,headaches,facial numbness,dry eye issues,balance issues. I have taken every class I can think of,excercise,Yoga,balance,physical therapy......you name it. I am now on a course to live in the moment, do what I can and let the rest go. I have been very active all my life,personally and socially. I am a widow, live alone.....so it's up to me to be the best me I can today. If I can't get around well and safely I don't. Perhaps tomorrow will be better. It's been about 6 years now since CK at Stanford/Dr.Adler. My heart goes out to those that are young,have young families,work etc. It's beyond me how you do it. It is my experience that it's a day to day hurdle,one must face and try to overcome for that day....it is possible. A change in my self expectations,habits etc.help a lot. I am grateful to be alive. Bless all of you.....keep trying...have faith.....continue to come here for here is where you will find answers,friendship,compassion and so much more.

Judy

[free2be]

Judy,

Good to hear from you. Six years ago for your CK.Wow, I think that's the longest ago I've read on here. I'm sorry you continue to have so many issues after so long. I agree with the one day at a time concept and doing what you can, but I don't always do real well in practicing that concept and not being upset about it. I wish you well. Stay in touch, as you said this is a great place for support.

Connie