PLEASE!!!! If anyone has any thought or experience with this, PLEASE talk to me!!!!!! I met with a surgeon. He ordered 2 more tests. a brain scan, to see the veins in the brain, & a lower back MRI to rule out any problems, since all the MRI's have been the upper back. I am 12mm with a huge syrinx. He did note that my syrinx was tilted sideways & was "sprouting" a whole other "growth" & he had never seen anything like it. Right before I was to see him again, the radiologist called to tell me he ordered a bone scan. Whe I called his office to ask why, they told me it was because of what he found in my spine, & I took that to mean the "thing" growing out of the syrinx. Well, I met back with him Friday, he showed me a spot on (IN?) my spine on the bone scan, & told me to go downstairs to speak with a malignant tumor specialist. I am still in shock, & nobody said too much to me. They told me I need to get some scans & bloodwork. So it seems I went in scared to discuss brain surgery, & walked out with cancer!? & not just bone cancer. I googled words I didnt understand on the bone scan report, & apparently, its a cancer that starts somewhere else in the body. The last paragraph says......... Focal radiotracer accumulation at the left T8 vertebral body which corresponds with abnormal marrow signal on the MRI study of 8/23/2013. An osseous metastatic lesion is suspected. Clinical correlation is recommended. PLEASE!!!! has anyone heard of anything like this happening due to chiari or a syrinx????? Of course this happens on a late Friday, so I am left to go crazy & nobody in office to call
Jessica, If that spot does turn out to be what they suspect I don’t think it’s caused by the Chiari. I think they are probably totally separate. You’ve probably had the roughest weekend of your life, I’m so sorry. I can’t imagine how you are feeling, and I’m worried about you. What’s next? Did ever get to talk to that malignant tumor specialist?
I'm so sorry you are going through so much right now! I can't imagine how worried you must be! I don't have any info about the spot on your scan but it sounds like it's probably separate to the syrinx and Chiari. Please keep us posted on what the doctors tell you!
Gentle hugs to you glad they found the growth. I couldn't imagine what you are going through.
Thanx guys. kinda feel real stupid now for making such a big deal bout the chiari surgery. seems this is a stage 4 terminal cancer. I dont understand what happened. everyone agrees all my symptoms are all chiari. I have NO symptoms from this but was given a death sentence, & GUESS WHAT?? 3 out of 3 docs still have not even called me back!
We are here to listen and keep you in our sites through the whole thing. You are not out in the weeds by yourself Jessica. Keep checking in and I’ll keep the prayers coming your way.
Love Jenn
Keep calling the doctors! Be the squeaky wheel if need be. You deserve answers!
You are in my thoughts and prayers! Please keep us posted!
Hi …
I am so sorry you re going through this. Have you heard back from anyone yet.??
I agree with Abby’s latest reply…from my experience with mylf as well as family members…it seems like the docs and other medical team like to get some sort of plan tougher first…which means they need to get all reports, ect to their …and it seems to take forever!!
Please know we are all here for you…please keep us updated.
Take care,
Lori
Yes Lori. As it turns out, my phone is acting up. My new neuro who I loved DID call sometime that night. I didnt get the message until well into the next day. It didnt show up as a missed call or on my call log. They were offering for me to come in this morning, but of course I got the message too late. Now we are playing phone tag. Same with my Chiari surgeon, but I did however speak to him today. The Tumor specialist never did call. I will try again tomorrow. At least I know I am not being totally ignored. No matter. there is no doubt that there is a tumor in my lower spine. My chiari doc doesnt seem to think it is related to that or the syrinx. They do agree I am a-symptomatic, & all my pain is due to the syrinx though. The radiology report says "bony metastatic disease suspected". Appaerntly there is a chance it is an infection or a malignant tumor, but it seems like a small chance though. My nightmare never stops getting worse. I am so scared to get these tests. This is a whole different reality now.
The doctors think that also
Anglyn said:
I'm so sorry you are going through so much right now! I can't imagine how worried you must be! I don't have any info about the spot on your scan but it sounds like it's probably separate to the syrinx and Chiari. Please keep us posted on what the doctors tell you!
yes. he ordered a chest scan, mamogram & bloodwork. didnt say much, & I was in shock so didnt think of my questions at that time. He is the doctor that has not returned my call. I will try again tomorrow. My chiari surgeon doesnt think they are related either. was kinda hoping it was though
jcdemar said:
Jessica, If that spot does turn out to be what they suspect I don't think it's caused by the Chiari. I think they are probably totally separate. You've probably had the roughest weekend of your life, I'm so sorry. I can't imagine how you are feeling, and I'm worried about you. What's next? Did ever get to talk to that malignant tumor specialist?
I plan to use my new neurologist as my primary. Still playing phone tag, but I think he is trying to get me in soon. He already took me seriously before this, so i'm sure he will. Thank you
Mandy said:
Jessica, I am so sorry :(
I hope your primary care doctor is taking this seriously, and is making sure you are getting your pain meds now, even if you don't have a definite diagnosis. If you haven't already, I would make sure they are up to date with what is going on.
Wishing you the best,Mandy
Thank you, Beeba, I thought of that ironic scenerio, but if it is the "bony metastatic disease" that is suspected on the radiology report, then there is no life saving. That is stage 4 terminal.
Beeba said:
Jessica, please contact them. Do a rotation of continuous calls. Never apologize for complaining about what was bothering you. Sadly or ironically having chiari may have saved your life. You were not getting symptoms from this so possibly having it detected early is great hope for treatment. We certainly all hope and pray that is the case. Please let us know after you get in touch with the drs. You are in all our thoughts as we certainly understand this must be devastating. Sending you great strength and many many good wishes.
Much love,
Beeba
PS - regardless of what you need support for - we are a big family. And if it cancer or chiari you please continue to come here so we can all do our best to keep your spirits up and allow us to support you through this.
Thank you. all I can hope for is the small chance that the tumor is benign
Thank you Mandy. I'm not gonna lie. Im angry, mad & scared, & my mind is racing. I really wish I could go back in time when chiari surgery was my biggest problem! doesnt seem that bad now!
Mandy said:
Jessica, words don't express how sad I feel for you right now, what terrible news. Keeping you in my prayers.
Mandy
Thanx. No marrow test. I had a nuclear bone scan which is what showed this, & tons of MRI;s for the chiari & syrinx. Now I have to get blood work, a chest scan & a mamogram. I did get to speak to my chiari surgeon who ordered the bone scan, & missed a call from my neurologist, so maybe I can catch him tomorrow. Will try the neuro-oncologist again tomorrow. My surgeon is great. he talked me off the ledge today
Abby said:
Jessica,
I am so sorry you got this and no explanation from your doctors. Your week must be awful and I am sorry, my heart aches for you. What can we do? We are here for you thinking of you with prayers. Have they done a bone marrow test yet? I would be asking questions to them and tell their receptionist I needed to talk to your doctors. Start by listing questions you want to know.
I agree with Jenn, Chiari is not related to the this. But, I would ask for a complete body x-ray, blood tests, and if they though it was contained just within the bones.
I just want you to know you have us. Do you have a oncology doctor assigned yet?
Hugs, prayers and thoughts
Abby
Thanx, I did. got 2 outta 3. playing phone tag with 1, but at least they are trying. Will be sqeaky with the tumor specialist.
Anglyn said:
Keep calling the doctors! Be the squeaky wheel if need be. You deserve answers!
You are in my thoughts and prayers! Please keep us posted!
Thank you, I really need that!
jcdemar said:
We are here to listen and keep you in our sites through the whole thing. You are not out in the weeds by yourself Jessica. Keep checking in and I'll keep the prayers coming your way.
Love Jenn