New Diagnosis

[Nick]

I have pain under the right shoulder blade, into my right arm and tingling in my hand. I made an appointment to see a minimally invasive orthopedic spinal surgeon to consult about surgery for a pinched nerve I suspected I had. Previously I had many injections manipulations, etc etc for the last 3 years.

He wanted me to have a cervical MRI before seeing him. I went to see him and looking at the pictures and reading the report which showed I had an increased T2 weighted signal in the cervical cord at the C5 level. He wanted another MRI on the brain, cervical, thoracic, and lumbar with and without contrast. Different MRI machine as well.

He also referred me to a neurologist and wanted me to come back after the MRI.

I spent 2+ hours in the tube with a small break for the contrast injection.

I went to the neurologist today and he verified pinched nerve at C5-6. He also read the second MRI report which said there is a hyper-intense lesion in the central cord at C4-5 measuring 5mm AP by 6mm transverse by 1cm craniocaudal. I also have disk protrusions to various degrees all along the cervical spine.

Now the neurologist has referred me to an oncologist. I'm thinking this is incorrect.

The orthopedic spinal surgeon wants to see me this Tuesday. The second MRI results were also forwarded to him first.

I don't understand why the neurologist would refer me to an oncologist? It seems to me after what I have read here that I should have been referred to a neurosurgeon.

Maybe it is to rule out malignancy?

I'm guessing he thinks the lesion can be left inside if benign?

It seems to me its size is very small compared to some examples I have read about here.

And then just monitored routinely?

Anyone here can shed some light?

[bethann]

Nick,
I think you should do some research in your area and find a good neurosurgeon to go to. Also since you have been doing research here at the SCTA site you have no doubt seen the information on Dr Jallo. I would suggest you get a copy of your MRI and send it to him.

I don't think the Doctor can say that it is cancer until they go in and remove the tumor. It is not a good choice with these types of tumors to have a biopsy. If you do have surgery they should go in with the plan to remove all or as much as possible. The fewer times you go into your spinal cord the better off you are!

I hope we can help you with your questions.
Beth

[tc]

Dear Nick - I'm so glad you found us. It's so hard to get answers when your tumor is first found! Scary times. Been there, done that!

You are right that your tumor is pretty small. My cervical tumor is a similar size and I'm still in the "watch & wait" category (since June 2007).

There is one reason that the neurologist wants you to see an oncologist. When my tumor was first discovered, I had a CT to check for cancers elsewhere in my body. An SCT can be a metastasis from another cancer. I didn't have any cancers, but they wanted to rule out this possibility. I also had a spinal tap (ordered by the neurologist) to rule out Lyme disease and MS. Spinal cord tumors are so rare, that the doctors have to "rule out horses before they go looking for zebras".

I hope that the orthopedic surgeon can fix your pinched nerve (leaving the tumor untouched - I'm assuming your SCT is intramedullary).

Do NOT let anyone biopsy your tumor. That is done during the surgery to remove the tumor, not as a separate operation.

When my tumor was first found, I had MRIs frequently to see if it was growing. (2nd MRI three weeks after the first, then every 3 months, and now every 6 months or longer). SCT removal is not a surgery that you have proactively (unless the tumor is growing rapidly or is already very big when discovered).

Please send your MRIs (registered mail or FedEx) to Dr. Jallo at Hopkins for his opinion. He doesn't charge for this. If surgery is recommended, then consider traveling to Hopkins. The neurosurgeon's experience is very important for your outcome and recovery. Don't go to a neurosurgeon who only sees one or fewer spinal cord tumors a year!

I sent my contact info to you privately, so check your messages. Feel free to write or call. I'm also sending your questions to some of my SCT cervical friends for their comments. Hopefully, they will write to you.
Teresa

[stevieray]

Nick,

Welcome to the group, sorry to hear about your situation. I would suggest like others here to get an opinion from Dr Jallo, maybe a referral to someone close to you who has experience with these tumors. I was sent to an oncologist after my surgery to talk about radiation, but I chose not to pursue that after doing my own research on that. Its hard to say why these doctors make the decisions they do and frequently its due to lack of experience with these tumors. Hopefully you have time to do your homework. I was sent to a neurologist who told me my back pain had nothing to do with my tumor, I think to protect the orthopod, but I knew then I needed to find my own neurosurgeon and I went to UCSD. Large research hospitals linked to top medical schools are a good way to go in my opinion. My neurosurgeon is a professor of neurosurgery and I feel very fortunate to have found him. Good luck.

Steve

[bobmiami]

Nick,

We are glad you found this group. You are already on the way towards getting very valuable "been there/done that" info which you fill find will be of more PRACTICAL Value to you, that what the Doctors will say. That is ESPECIALLY true when you are in these "early stages". (before the operation).

Teresa and I have been in these "early stages" for 2.5 years - and that is a GOOD thing.

Frankly - I see more GOOD news than Bad in what you have indicated so far. IF I read it correctly:
1/ You discovered you have what seems to be an Intramedullary Tumor, BUT your symptoms are NOT as a result of that.
2/ the MRIs, and subsequent diagnosis, thus far, were prompted by more "garden variety" (as I like to say) back issues i.e
- pinched nerve
- disc protrusions along the spine to various degrees (Herniantions, probably)
3/ You have already sought a minimally invasive surgeon - for your pinched nerve (self-diagnosis).

So far so good.

NeurOncologist vs. Neuro Surgeon:
For Illustutration purposes ONLY - please allow me a rather inexact but USEFUL analogy:

I/ Your car engine is acting up. Performance is affected, it's not like it used to be. You decide to get two opinions:

A/ Diagnostic Shop: (NeuroOncologist) -
He charges you a minimum to uses his equipment and his expertise.
He connects your car to his "Mchine" to link the OBDII system. (onboard diagnositics) available since 1996 (MRI, etc.).

He says your engine is not performing well in a few areas. His recommendation is a tune-up, and routine fluids replacement, then watch it and see how it performs after. It costs a little out of pocket, but it's pretty painless.

B / Engine Re-Builder: He can make your engine "almost like new", but hey, he's got to "open her up" and grind things down (rings & such) and replace a few things, and then ..hey - "she should be good". it costs a little more, and by the way he'll need your car for a week. (Buy HEY - this is ALL he knows How to DO!) - [As I said, inexact analogy - but this is your NeuroSURGEON - he knows how to CUT ]

The point is - after you go to A - and hear his opinion.. you can ALWAYS go to B and get cut.

My PERSONAL EXPERIENCE: I have had 5 significant Opinions:
1/ Uof Miami NS - We need to cut, maybe not next week but soon, and get that lil' ol' thing outa there.
2/ VA Mimai - We need to cut. Why delay, if you were my relative i'd say do it.
3/ Dr. Jallo - yep - it's a tumor. But you should Wait. Don't talk to me about wanting surgery until you have pain and clumsiness from it.
4/ Min. Invasive NS -Chicago = Wait , until you have symptoms.
5/ Min. Invasei Ns - New jersey = wait. " ", AND .. just a guess but i think you will outlive the tumor!

Nick, - it TURNS OUT.. those symptoms, you know the ones.. left hand tingling, kinda funny bone thing downleft arm.. - the ones that caused me to get an MRI. They went away.

AND the NS's all implied that tumor caused them. NAW, probably not says my next opinion. And WHO would THAT specialist be? heck, that would be Todd G - (you'll hear from him - he's a member of our C6/7 club and had the operation). Todd told me, hey Bob you've got the same bulge at C5 that i had.. and MY NS said THAT's what caused the tinglnig. AND once I offer that "Scenario" the next to NS's say " YES . that's probably right, with 2.5 yrs hindsight.).

MY Bottom Line: Good thing we DIDN'T CUT. I'm still waiting - after 2.5 years. (but ya know...I probably Do need a tune-up!)

Bob C6/7 Ependy since 2007 - still wait and see.

[Michael_P]

Nick
As others have said, I'm sorry you too have to make this journey, but glad you're finding these valuable, on-line support groups. While you'll get a lot of support and great information here, the journey for every person here is unique. Not all information will apply to your situation. Use the information to help formulate good questions to be a better consumer, patient & partner with your health care team. Be sure you bring someone with you to all appointments (spouse, partner, sybling, parent, friend).

Ask your OrthoSurgeon what he/she thinks. Or get back to your doctor and question why the Oncologist and not a Neurosurgeon. From what you shared thus far, a Neurosurgeon may be better than Oncologist at this point. I may be misunderstanding, but from what I've read from others, ependymoma in the Brain stem area (many have 4th ventricle tumors) or Lumbar region, or multiple tumors, all seem more likely to need treatment by a Neuro Oncologist; cervical ependymoma seems less so. However size and shape, weather encapsulated or not, might make a difference and I'm not a physician.

Although my symptoms go back 2-3 years, since last June I've had more noticeable pain radiating down my right arm and particularly in my right hand and slowly increasing right-sided weakness down my leg to my feet. After 2 -3 appt's with Neurologist and numerous MRI's of Brain and entire Spine, and a spinal Angiogram, in January this year I was diagnosed with intramedullary ependymoma at C5. I am still working long days and driving. But pain and weakness are definitely getting worse. I am up to 600mg Lyrica per day, but its not really doing the trick! This coming Monday, I have my 2nd appt. with Dr. George Jallo, a Neurosurgeon at Johns Hopkins here in Baltimore. I'm fortunate, he's considered one of the best for surgery inside the spinal cord. At this next appt., I imagine we're going to talk more about "timing" of surgery which I "anticipate" will be in the coming months.

Be sure you always have someone with you. Write down your questions in advance. Ask questions, ask for explanations, ask them to repeat answers if needed. Be sure to understand (ask "Help me to understand"...) why this test, this procedure, this referral, this treatment? What if I wait or don't? What's next? What are the up sides? What are the down sides? Don't be shy or intimidated; yes, they are the Doctors and have patients waiting, but YOU are the patient; this is YOUR HEALTH and body; and we're not dealing with colds or zits here!! You're not just their next in a long string of appointments, "an interesting patient", or an insurance payment! Don't allow yourself to be herded forward without understanding their rationale and thoughts about your issues & treatment plan.

Although I still have lots of questions to be answered, at my first appointment, I came away with the understanding that for my particular situation (single Epy at C5), surgery will NOT "FIX" the current pain or weakness, AND I am likely to have some level of ADDITIONAL deficits, like increased numbness and weakness in extremities. So I may have some initial challenges walking or driving. Rehab may help but there could be lingering issues. After all, this IS the spinal cord....lots of little stuff inside there!

I hope this has been helpful. Good luck. Wishing you the best for as much improved health & pain-limited functioning as possible.

Michael_P
C5 Epy; Diagnosed January 2010
58 y/0; Baltimore, MD

[Nick]

Beth, Teresa, Bob, Steve and Michael,

I want to tell you all how much I really really appreciate your taking the time out of your days to sit down and write. I have carefully read all of your replies over and over. For me the fear comes from not knowing what I’m facing, with the early research I have done and the things I have read from you all, I have to say that I am feeling better today and my wife is feeling better as well. She was in fear last night after I told her the news.

There is no value that can be attached to the first hand information I have received and as I process through this and make the journey I will indeed keep the group informed.

I DO understand that what I need to do right now is see an oncologist to rule out any metastasis. This is first.

I am scheduled to see an oncologist but I wonder if I should get a referral to a neuro oncologist instead?

I also agree a second opinion can never hurt so I plan on contacting Dr Jallo and make arrangements for him to look at my MRI and give his diagnosis/ recommendations.

I will go to see my orthopedic spinal surgeon this week and see what he says. Ask some questions. I am hoping the reasons for my symptoms are the pinched nerve at C5-6, keeping my fingers crossed there is no malignancy. My hope is to be like some here and periodically monitor and not get cut.

Thank you all,
Nick

[bobmiami]

Nick,
Please let me RE-ITERATE something Teresa said, above:
DO NOT AGREE TO HAVE SOMEONE BIOPSY THIS!

The Biopsy IS the first part of the Operation (which you MAY NOT NEED)!

My (primary) NS told me, we really should biopsy that. So i took him down that path, and asked, in detail, what that meant... and YUP - it means having the operation.

These are early days. The Shock - of what this is- and what it could be - is still fresh, it seems. That is perfectly normal. We all went through that.

You have done very well, to find us, and to research about this, and educate you and your wife about it. There is still a lot to learn but at least now you can "come up for air".

So my STRONG Advise to you (I'm not a Doctor, of course) is this:
1/ Trust Dr. Jallo - send your MRI's to him soonest, make sure you make lots of extra copies, He will answer quickly. IF he said it can be serious, THEN that's the time to get more SERIOUS.

2/ YOU HAVE TIME - Do NOT rush into anything.
- If you are not having "pain and clumsiness", then SLOW down, and do some more studying, and get more opinions.

3/ You can't tell Anything until the NEXT MRI - to compare - see if it's grown etc.

Nick BASICALLY you have something there, which is not supposed to be there - just like i do. There ARE some circumstances where this can be serious.. BUT you are certainly NOT there yet... and as for me - after 2.5 years - I have a NO CHANGE situation - which means I continue to watch and wait.l

I believe that all the Oncologist is going to do is provide you with some cautionary warning signs, and ..from the MRI's,... he will tell you what he THINKS that it COULD BE. And Frankly, unless this is the 2nd or 3rd MRI, there is a limit to what he can speculate.

SO.. you have our permission to chill out, and turn down the anxiety. It's something we would rather not have... it's too early to be any more anxious that this initial discover already made you... AND you can relax a bit!

Bob

[stevieray]

Great feedback everyone! This is the best of SCTA in action. Nick, fear of the unknown is very understandable, we all faced that, particularly what the outcome of surgery will be and its different for everyone. I'm glad you and your wife are feeling better. If you want to talk to someone don't hesitate to contact me.

Steve

[betty]

Nick,
Welcome to our group. There is nothing I can add that hasn't already been said. Getting a neurosurgeon with lots of experience with spinal cord tumors is very important.
We are here for you and hope you keep us posted.
Betty