Mri of spine shows a syrinx?
 

I am getting IT Herceptin for spinal cord mets, has anyone ever heard of a syrinx, or known anybody with this. This is located above and below the lower lesion in the thoracic spine.
So does this mean the It Herceptin is not getting to the area?
Google is kinda of scary, especially since some of my pain and altered neuro symptoms fit. I am need of prayers, I had one of those days yesterday, that when I got my mri results back, after goggling, faxing reports, and hurry and wait for the cd and films to be delivered to Neurosurgeon and for him to review, which means probably will not hear from him till next week.
So after a disagreement with my wonderful spouse over a past issue with my family. , I basically cried myself to sleep, praying that I wake up able to move. The risks of me being paralyzed from bra line down are pretty high.
well my 3 year old Labrador made sure of that at about 430am this morning, because she wanted out and was hungry. Oh by the way my hubby went on his planned overnight fishing trip with his dad, brother. He usually takes care of dogs before work. i think escapism is his way of dealing with the medical changes after all these years. Very supportive at home , but avoids the Dr. Offices even for himself like the plague. I did get to see the sun come up, and have time to post and check a few posts. sorry for the morning rant of frustration.
Time for God time, shower, then wake up a grumpy 13 yr old for school, who was up making messes in the kitchen after midnight.GRRRR. I hope he is happy today. then go get cd's of Mri, then go get treatment. Thank you all for listening

Prayers and Gratitude to this Board and all of its members past and present whose thought and journeys are all captured here for those of us to seek out and find our place, find caring, understanding, clinically based answers.

Darita

Re: Mri of spine shows a syrinx?
 

Hi Darita Sorry to hear you are having a rough time. Sending you hugs from CA. Hope you feel better soon !

Re: Mri of spine shows a syrinx?
 

Re: Mri of spine shows a syrinx?
 

Darita, Please know that you and your family are in my prays. Gods blessings all around. I will be praying very hard to hear some good news soon.

Re: Mri of spine shows a syrinx?
 

Darita
Sheesh! You just can't seem to catch a break my friend!

Having never heard of a Syrinx...I googled it before starting this note too. It's easy for me to say, "It doesn't sound like there's any imminent danger" because it's not my spine, and I'm not walking around in your skin. But among others, I read the article from the Mayo Clinic site and it seemed to say that this things develop slowly...so it seems you have some time before you need to "panic".

Having said that...if I were you...I'd call my med onc and the neurosurgeon's office and ask for a callback. Somebody should be answering your questions about how concerning the development of a syrinx is for you. And, don't let anyone at the neurosurgeon's office kid you..the doctor can get the scan info anytime he/she needs it. Even if they don't have the official report yet...they're trained to read that stuff too!

In the meantime, take a deep breath...and try not to borrow trouble. Whatever the true story of dealing with a syrinx ends up to be...you'll handle it...you always do!

And girl! You are one awesome wife and mother! Forgiving the fisherman, and the grumpy mess-maker is definitely the 'right' thing to do...but I'm not sure many of us could do it gracefully as you have.

Sending love and strength to you across the miles.
Keep us posted!
Denise

Re: Mri of spine shows a syrinx?
 

Thank you for your feedback and prayers. Denise I just read your post. That is like the reviewer, for all of my imagining studies, was denied a cervical Mri because it was not part of the CNS!!! I would frame that letter.
Should hear from the Nuero surgeon on Monday he is comparing the last scan to the new one. Grumpy got up and had a great day. And the other came home no fish but very caring and glad to be home. God is still Good and I got my first dose 0f 60 mg It her yesterday, had Breakfast with my hubby, after taking 13yr to school. Came home took 3 hour nap. Head is a little more together, faith and hope are back in the the straight lines of my path, as we all occasionally have our moments. Thank you
Darita

Re: Mri of spine shows a syrinx?
 

Darita,
Ready for an update?

Thinking of you...sending prayers...
Denise

Re: Mri of spine shows a syrinx?
 

(((Thinking of you))))
Paula

Re: Mri of spine shows a syrinx?
 

THe Central Nervous system consists of the brain and spinal cord (cervical, thoracic, and to the very upper lumbar region and may even contain the conus medularis(rest of the lumbosacral region) and even the Cauda equina within the rest of the lumbar area and in some views the optic nerve/retina and parts of the cranial nerves)--http://en.wikipedia.org/wiki/Central_nervous_system

The person who told you that was ignorant, as you obviously know and this shows the need for asking your insurance company for a physician review of your need for a cervical study by a neurologist, neurosurgeon or radiologist specializing in imaging of the nervous system for others who migh face similar situations.

More pertinent to your present needs:

Dr. Ulrich Batzdorf of UCLA (now emeritus, I think) has made syrinxes his area of special interest. I do not know if he still sees patients (he is emeritus) but last time I looked at the UCLA website it looked that way. He has trained at least one surgeon who works out of the Barrow Neurological institute (in Arizona, I think) and would at least be aware of others who shares his expertise in syrinxes and might perhaps be able to stear you their way.

As he might be emeritus and may have more time on his hands, perhaps an email to him might direct you to someone with special expertise closer by.

http://www.uclahealth.org/body.cfm?x...etail&ref=1487 contains his email address.

As you know, I rarely make any type of recommendation here as I am certainly not qualified to do so... perhaps it is our recent loss of Sheila, Christine, Chrisy and others making us all feel so helpless that encouraged me to try to help since I do have some information here ( gained from several I know having consulted with Dr. Batzdorf, although over 15 years ago)

Hope this helps.

Re: Mri of spine shows a syrinx?
 

Lani thank you for this information. I appreciate your dedication and labor to help us all.

I do see a Barrow's Neurosurgeon. I dropped films off the other day, So hopefully will here back from him after the holiday. He is good at squeezing me in for appointments, and shows me the exams and explains it to me. Then he still will present to the tumor board as well.

I was able to move up the dose escalation to 80 mg IT herceptin last Thursday, with no problems. I also take IV herceptin and Tykerb, still on 1 mg decadron.

Prayers for Christine's girls, and the others whom we have lost and are struggling right now as well. Lani thank you for always being there with info and updated help.

Darita

I will follow up with the other Dr as well,