Thought I had a pinched nerve in my neck

[Todd]

Barrows is a great facility. MY NS is Barrow trained.

[susan]

Hope you are still checking in, I see your original post was a while ago. Who did you see in Pgh. I live in Pgh and had surgery here ( c spine also.) I was wondering where you went, I am assuming one of the big 2.
If you don't want to post it here you can send me a private message through the board here.
Susan

[dolphintale]

Thanks, Susan. I am checking in everyday....not posting but reading through all the posts. Just trying to gather as much info as possible. I have sent you a private message. I'm glad to hear that you are doing well. May I ask how long after your diagnosis did you have surgery and was the decision to do surgery because of the symptoms you were having or mainly because of the location and growth?

[susan]

I had the MRI that diagnosed the tumor on 1/3/08 and then had surgery on 1/21/08. I had to have surgery because of the location and the severe cord compression from a cyst. My symptoms were rapidly getting worse, but the were all sensory, no motor problems. I had to take a course of steroids prior to surgery to decrease swelling in my spinal cord.

[dolphintale]

Well....haven't posted lately so now after more MRIs and a CAT scan I found out Tuesday I'm dealing with a chardoma.....My husband and I zoned out during the consultation because we expected to be told it was a benign tumor since that seems the most common. Next week I go back for another MRI of my entire spine and a PET scan to see if the cancer is any place else in my spine or other organs. For right now they are scheduling surgery in 2-3 months. The doctor will go in through the front of my neck remove the tumor (maybe the verebral artery, if needed) and the cancerous vetebrae....the vascular surgeon along with a spine specialist will perform the surgery. Radiation most likely will follow....am a little overwhelmed at the moment but at least I know what I'm facing (to a certain degree, of course)

[landofconfusion]

I am very sorry to hear of your chordoma diagnosis. Thank you for giving us an update and sharing this news with us. I am sure it was not an easy diagnosis to hear.

My understanding is that chordomas are quite rare and I hope that anyone on the board who has had personal experience with this diagnosis will come forward & give you some advice & encouragement. If this doesn't happen, though, please continue to educate us by sharing your story because it could be a great help to others in the future who might be facing the same journey.

If you haven't done so already, please check out this site> www.chordomafoundation.org/ They seem to have a community there as well who can hopefully help you navigate your way through this. I can understand why you're feeling overwhelmed, but we're here to help support you in any way we can.

[dolphintale]

Thank you landofconfusion.....the surgery will be performed at UPMC in Pittsburgh. There are not many neurosurgeons that have experience with chardomas; however, I do have confidence in my doctor. He has discussed my case with other neurosurgeons and radiologists so I have decided not to go elsewhere for a second opinion, I do feel that he has my best medical interest. He has an excellent rating and does have experience with chardomas.

I have gone on the Chardoma Foundation website----that was one of the first things I did when I got home. I have found it very helpful.

I will keep posting because I know how helpful all of you have been for my husband and me.

[dolphintale]

Whew!!! It's been an overwhelming week and it's only Wednesday!! On Monday I had my CT/PET scan and the MRI of my entire spine. A few nodules showed up in the bottom of my spinal column and a few spots showed in both of my kidneys. Hopefully both are nothing...but now I have a spinal tap or a lumbar puncture (stop saying puncture) and an ultrasound of my kidneys next Thursday. Pre-op for removal of the spinal chordoma is July 2 and surgery is scheduled for July 5. It will probably be a 9-12 hour surgery, 5 days in the hospital and 6 weeks recuperation. Not sure about radiation therapy yet. Very nervous....emotions go from crying to laughing....mostly try to laugh...!!!! Gonna get my hair cut off in the next couple of days so that's one less thing to mess with!! Making a list of other things to take care!!

[lw]

Hi,

I've just been reading through your thread and I think you are an absolute star for coping with all this so well! You are right to trust your gut instinct and go with the neurosurgeon you feel is right for the job. Sometimes you need more assurance than just a list of qualifications. It is also natural for your emotions to be all over the place given what you have going on. You are more than entitled to cry sometimes and let your guard down. Throughout my SCT journey my emotions have changed at different stages. I remember the week before my operation I was completely pre-occupied with surgery and was almost acting like an automaton. I just couldn't see beyond the immediate, but life did go on and 4 years later I am still here.

The best advice I can give is to take each day as it comes and make the most of the good days along the way. Talk to people if you need to. Do what you need to to get by. Also, try not to worry (if possible!)too much about what 'might' happen - I did that too much and sometimes got myself in an unnecessary state.

I wish you the best of luck with your surgery - I shall be keeping my fingers crossed for you!

Leah

[landofconfusion]

Thanks for the update, Dolphintale! I can imagine how busy you are as you prepare for surgery, but I wanted to let you know that you're in my thoughts. I think Leah's advice is wise-- one day at a time and "make the most of the good days along the way." I haven't had surgery for my tumor yet, but when & if I do-- I'll try to remember those words as well.

Nevada