This time a brain surgeon...

[Chelee]

As most of you know I had an MRI for my brain & thoracic back. I have been having serious upper back pain and a major headache for close to two months now. Thoracic MRI just shows my scoliosis...nothing else that concerns my onc. (Sure wish I knew WHY my upper back is hurting so bad then?) But at least that MRI was CLEAN. :)

With my 1st baseline brain MRI till this current one...they all keep showing some type of cyst. In fact it says: Mild periventricular white matter ischemic changes. Cystic area within the region of the pineal gland, probably represents a pineal cyst, unchanged from the prior examination.

I told my onc this has been the worse on-going headache I have ever had...it does not let up. So she wants me to see a brain surgeon. (Great, yet another doctor.) At least this *pineal cyst* has stayed *unchanged* in the last yr & 8 months. They have me set to see him Oct. 10th. I hope he can do something to get rid of this headache...I know I've tried everything. (Going to *all* these doctors is enough to give anyone a permanent headache.) lol So basically my MRI's are clean the way I look at it. :)

Chelee

[Sheila]

Chelee
It is good news that the MRI is clean and the cyst is unchanged...but you definately need to get to the bottom of the headaches..nothing more annoying than a headache that wont quit. Hoping Oct 10 comes quickly and this gets resolved for you.

[Joe]

Chelee,

Please read the attached paper, you should actually see a radiation oncologist. Where do you live? We may be able to recommend one.

http://her2support.org/paper.pdf

Regards
Joe

[Believe51]

You will be in our prayers on your continued journey. I hope that you can maintain a even level of peace waiting until October 10 for the appointment. Until then you shall remain in my heart, protected from everything but positive energy!! Keep the faith and surely keep us posted. We are all here for you Sweetheart.>>Believe51

[chrisy]

Chelee,
Good news that the MRI is unchanged. And that despite the headaches inherent in going to yet ANOTHER doctor, you may now be able to get better progress towards resolving the terrible headaches you have been enduring. You never cease to amaze me - keep pusin on, girl!

[Chelee]

If it is *really* a pineal cyst in my brain causing these headaches...everything I've read about it is says they are very difficult to remove without serious risks to consider. (Sounds like they will only try to remove it if it gets to big & starts causing other problems.) So I'm not so sure what this brain surgeon can do for me at this point? I do know the pain behind my eyes, and this constant headache is killing me. It never lets up. All my brain MRI's from day one have mention this cyst...but it *always* says probably represents a pineal cyst. Its the probably part that concerns me? I hope its not brain mets?

Joe, I live in Orange County...is your concern that it might be brain mets more so then a pineal cyst? I've had four brain MRI's and so far they all suggest its a pineal cyst. (But other things have not been ruled out yet.)

Chelee

[Joy]

Chelee, I really hopr you can solve your noggin problem. Headaches get old really fast and you have had this for along time. It doesn't sound like anyone is too worried about brain mets. But this cyst thing is its own dumb situation. So while another doc is a headache in itself, more opinions are a really good thing. Keep us posted-I wonder if this cyst thing has anything to do with ooph, Zolodex, etc as all thes hormones play together a lot. Just a dumb last minute thought.

[caya]

Chelee,

Just a thought, as I am obviously NOT a doctor -perhaps you should see a neuroradiologist. It was a neuroradiologist who successfully diagnosed my DH's brain aneurysm in Jan. 2006, and then was treated with a coiling procedure - the neuroradiologist went in through DH's groin and stuffed the aneurysm with tiny platinum coils. This is a much less invasive procedure than the older technique of open brain surgery, and DH has been fine since.
DH had 3 tests before they could find the aneurysm - 2 MRIs missed it - it was a CT angiogram that did it.
He has had followup MRIs to check the coils,all fine (thank G-D), and then in 2 weeks is scheduled to have a cerebral angiogram - the dr. wants to go back in through the groin with a tiny little camera and take pictures of everything, again just to make sure it all is okay. Apparently this is routine.
Again, this may mean absolutely nothing for your particular case, but I thought I would mention this.

all the best
caya

[tousled1]

Chelee,

Sorry you're having such problems with headaches. There is nothing worse than a constant headache -- except maybe a tooth ache. It's best you get to the bottom of what is causing you the pain. Another doctor is yet another headache but if you find out the underlying problem then it'll no longer be a headache. Good luck to you.

[tousled1]

Chelee,

I've been pondering your post and wanted to ask if you've had a cervical spine MRI. I suffered from headaches and back pain in between both my shoulder blade area back in 2000. In addition, I had pain in my right shoulder and sometimes it felt like my right arm was just going to fall off. I had an MRI of the cervical spine which revealed 2 herniated discs and a pinched nerve. I had a cervical spinal fusion and have had no problems since. Just thought this might be what's giving you the pain.

[Chelee]

Hi Kate, Since I have congenital scoliosis (Curvature of the spine) I've had all kinds of x-rays, scans of my back. I've *always* had lower back pain, but never upper. But just recently due to this new upper back pain my onc ordered a MRI of the thoracic spine. Of course my 1st thought was mets.
The MRI of course showed my scolisos and mentioned butterfly vertebral bodies throughout the thoracic spine. I was concerned about compressed or damaged disc's. But it said the disc spaces are well maintained. Also there is no evidence of spinal canal stenosis or neural foraminal narrowing. (Which is good news for me.) No evidence of mass or abnormal enhancement.

The only thing I can really put my finger on, and it could be a coincidence is...once I had the prophylactic mastectomy this pain started. The timing fits perfectly. It makes me wonder if some way due to my scoliosis, and removing both breasts has thrown off my upper body/back causing this pain? I just wanted to rule out cancer. Because its been very painful. Not fun as I am sure YOU can relate after reading what you've been through with your back. I was a little more nervous this time too because its the first time my tumor markers have ever went up? :( I know they aren't real reliable...but the minute I'm off herceptin...two months later I have severe back pain and my markers rise? Made me a tad nervous. Hopefully the thoracic doc will figure this out if my authorization ever goes through.

Chelee

[Chelee]

Joe, The link you provided was very informative. In fact I have printed it out & saved it. I've had four brain MRI's since my orignal DX. All reports refer to this thing in my head as a pineal cyst. (But of course they don't know that for sure?) The word *probably* is always used. Is that the reason you suggest I see a rad onc?

Chelee

[Chelee]

Bumping this up in hopes Joe will see my question & have a chance to reply?

Chelee

[lilyecuadorian]

Chelee dont forget that we all pray for all of us ...so you are in my prayers everynight and you are going to find the solutions

[Chelee]

Lily, Thanks for the kind words. I always appreciate the prayers. I see the brain surgeon this Wednesday so I do hope I get some kind of answers about this so called pineal cyst? (I picked up all 4 of my brain MRI's for this brain surgeon.) So I'm prepared. The headache is so much worse. It never goes away...really has me concerned. Then to top things off Monday I went to lay down on the couch for a minute and I had really bad vertigo. Any time I lean to the left or lay down on my left side it happens? So something else to be worried about. So thanks again for your prayers, I can sure use them.

Chelee