CKed and having ???? about tumor tantrums...

[tdworkin]

I was smacked upside my head today as I was driving into work. It started slowly, like perhaps I pulled something the day before and it was just starting to flareup. By the time I got to my school, it was solid pain from the side of my chin to my CKed side ear and down my neck. It progressed into my clavicle area. As the minutes passed, this pain grew in intensity and started messing with my comprehension and focus. My ears were tearing and when you teach 5 year olds, they are lovingly in your face when something's amiss. After one lesson, I called the building sub and was driven home.
As I am on the east coast and 3 hours ahead of Stanford, it took awhile before I got a call back with a plan for steroids, heat and ibuprofen. Folks there think it's tumor swelling and compromising the trigeminal nerve and suggest a sooner, rather than later MRI.
Pain subsided after 5 or so hours with just short flare ups through out the evening.

I was first CKed on Halloween... until today, I have "just" had the everyday headache, fatique and insomnia (yeah, it's almost 1AM here) and what I call tumor tantrums- short, INTENSE stabs of pain up my jaw to the ear. Thank GOD they last on a second or two and have been infrequent. But this episode today was like one LONG tantrum that just wouldn't stop.
SO... questions for my AN CK friends and been there experts, does this sound like something you've been through already? Do these episodes return? increase in severity? length?
What ELSE can I expect down this pike?

Thanks for your feedback, support and knowledge.
I appreciate this place and ALL you folks out there on the pike with me!
Terry

[tony]

I was a GK rather than CK
- Hard to diagnose from 3,000 miles away
It might  sound a bit like some post-treatment swelling ?
Probably best to contact the CK unit - they may offer
steroids to counter the swelling
Meantime maybe best to ease off the longer drives
- steer clear of ladders etc till things are confirmed
Best Regards
Tony

[Sheryl]

Terry - I can certainly appreciate the distance problem.  My husband had CK done in Boston on 10/1/07 and we were allowed to return to Florida (1500 miles away) for the winter.  He did fine until Xmas and had a seizure and lost his speech (focal or partial - not the falling down on the floor type) which landed him in the Florida hospital for two days - he did get quite a good checkup plus an MRI which showed swelling.  He has a history of benign meningioma regrowing after three years from his original surgery and did not want another surgery so opted for CK.  Upon sending the CD up to the CK hospital in Boston, they called and were insistent on giving us their neurosurgeon's phone number for surgery ASAP.  That immediately dumped us into deep depression and when we saw our local neurologist, he didn't think the situation was as urgent.  We are now trying Decadron (also a recommendation of one of the docs on the CK board) for a month and another MRI.  After a week, it seems to have helped - his complaints are down about 50% or more and no more speech problems - some tingling/numbess in right hand (it was a left-sided tumor) which had been there since the surgery in 2004.  A relative of ours who is an M.D. said it is very difficult to treat the patient just by looking at an x-ray.  Do you have anyone locally that you can check in with?
Thinking of you - let us know how you do,
Sheryl

[sgerrard]

Sometime during the six months after radiation, it seems to be common to experience a worse case of whatever symptoms you had before radiation.

I was treated mid September, and December was not a good month for me. In my case, it was all about hearing loss and pressure in the left ear. I almost setup an appointment several times that month, only to have the symptoms ease off just enough to make me wait another day. I spent Christmas in bed with a ridiculous cold, made worse by the AN, or maybe thats the other way around, I'll never know.

On the bright side, January seems to be better again for me. It sounds like you are going through your "bad spot", hopefully it will not last too long. Hot showers seemed to help. Ibuprofen (I also tried Aleve) may help a little too. Steroids if you have to. It is all about the swelling, and trying to control it until it starts going down on its own.

Valentine's Day may not be too great, but the Ides of March has some promise.

Best wishes, Steve

[Sheryl]

Steve - Quite a few on the board who have had CK talk about the six-month time frame.  I guess what got us in a tizzy was that the "specialists" who did CK in Boston on 10/1/07, were the ones to use the "surgery" word after three months.  We're hoping to get to the six-month date - at least winter will be over back up north - and see what happens from there. 

Sheryl "wait and watch" 9th cranial nerve schwannoma
Larry - CK on 10/1/07 on benign meningioma regrowth.

[sgerrard]

Hi Sheryl,

I think the story on meningiomas is different, aren't they usually closer in towards the brainstem? Also I think they are considered tougher to treat than schwannomas. So maybe it is not as surprising that the docs in Boston were talking surgery when Larry had a seizure.  I hope your neurologist's calmer approach will do the trick for him.

Sounds like he gets to find out on April Fool's Day. He might want to wait a few extra days. 

Steve

[Sheryl]

Hi Steve - I've heard of meningiomas growing in many places in the brain but the more common is where Larry had his - right at the top of of his head growing out of the dura (membrane) rather than into the skull.  It is in a relatively easy to get to spot thus I've heard it called "a neurosurgeon's dream".  His first surgery went very well but he was completely against a second which was the treatment of choice.  It's been a really weird meningoma with two of three pathology opinions being "benign typical grade 1" and the third being "benign atypical grade 2".  They are usually extremely slow growing so there are quite a few "wait and watchers" with meningomas or upon autopsy they are found. 

Thanks for the heads up on April Fool's Day - didn't think of that being the six-month mark!!!

Sheryl

[tdworkin]

Hi All,
I've been on the streroids for 2 weeks and the pain is practically gone. Only all day  headche with lots of pressure- is my head caving in or bursting?- these are pretty constant. The tinnitus rages on sometimes really loudly. The drs. pushed the first MRI up to 3 months so I will go get that taken care of and, with any luck at all, would LOVE to see something definitive show up in the way of at least beginning tumor death.

Thanks for your shoulders.
T

[Sheryl]

Hey Terry - Sounds like you're headed in the right direction.  Don't be disappointed if nothing has changed at the three-month MRI - I've heard that is rather early for CK changes but who knows 

Not sure about the tinnitus - hubby and I have had it for many years and the more we dwell on it, the louder it becomes.  Hopefully as things settle down in your head so will that.   So difficult to compare even though he had CK as his is a completely different tumor and location.  He is on steroids still - next MRI is on 2/18 to see if they can assess the tumor better.  Meanwhile his sleep patterns are real screwy - asleep in the Lazy Boy chair at 8:30 p.m. - to bed around 11:00 p.m. and up for the day at 3:00 a.m.!!!  I must say he is considerate of me and tries to do quiet things and use the spare bedroom.

Take care and keep up informed,
Sheryl

[ppearl214]

to all those that had recent CK treatments (and yes, even the male snowbird who is missed around the good part of the country), sending wishes for wellness as many of you are 6 mos or less into your post treatment status..... many of us experienced weird things happening during that time and  know that many of it may pass.... much did for many here... my hope is that this passes for you quickly as well.

Hang tough!  You are on the road to winning the war!  Blessings to you all!

Phyl