Any advice for a newcomer?

[shan]

Hi, this is my first post. I came across this site while researching on my current situation. I hope some of you can lend an ear and offer helpful suggestions.

I'm a 35-year-old mom of three boys, and have a great husband. On February 19, 2008 I started having numbness in my right leg. A week later, my left leg was weak and my left hand became almost totally numb. There have been various other symptoms, but as of right now here is the list:

Weakness in left leg. Constant pain between shoulder blades. Numbness / loss of sensation all around torso from chest to hips. Sensitive area in left front area of torso that sometimes makes sitting very uncomfortable. Numbness down left arm that gets worse the closer it gets to my hand. Left fingers are swollen, and my hand started to curl up -- that has gotten a little bit better because I force myself to do piano exercises every day no matter how much my fingertips hurt when I press the keys.

My C-spine MRI shows some kind of lesion between C5 and C7, but the doctors are unsure what it is. Lumbar puncture labwork suggests that it is not multiple sclerosis. I'm playing "Stump the Doctor" and it's now in Round 3. The specialist in St. Louis has never seen anything quite like my case and is currently consulting his colleagues and radiologists to get their opinions on how to proceed. He says a biopsy is very risky because of the eccentric location of the mass -- it is more on the left. I asked him what his best guess is as of right then, and he said probably an astrocytoma -- but the PET scan didn't show up anything, so if that's what it is, it must be low-grade, right?

I was wondering if any of you with similar cases would offer suggestions, or things for me to keep in mind as I go through this phase of identifying the mass and then choosing treatment options. There is, after all, no teacher as effective as experience.

Thanks,
Shan

[tc]

Dear Shan,
I am so sorry to hear about your situation. I am glad that you found this website!
Hopefully someone on this board can tell you whom to go see in the St. Louis area. Whatever your local doctor tells you, go get a second or third opinion! Do not let anyone operate on you without asking how many of these surgeries they have done! You need to be seen at a major medical center or large university hospital.
Dr. George Jallo at Johns Hopkins (Baltimore, MD) will look at your MRI if you send it to him on a disk. There are other neurosurgeons who will do that for you also. Duke in North Carolina will also look at scans. I'm on the East Coast, so those are the doctors I'm more familiar with.
I am concerned by the rapid onset and the quick progression of your symptoms. I have a lesion at C6 and C7 - centrally located, probably an ependymoma. It's 7mm wide by 10mm long at the last MRI in January. I do not have the severity of symptoms that you mention. I do have a weak left leg. My fingertips hurt. My big toes hurt. My neck and shoulders hurt when I turn my head. However, I don't have the numbness that you mention (just a little numbness around my big toes). I do wake up in the morning with my pinkie and ring fingers on both hands asleep/numb almost every morning. Sometimes, my whole right arm is asleep when I first wake up.
I have not had a biopsy either. It is a big operation to have a biopsy, so they might as well do the whole surgery at the same time. That seems to be the standard from what I can tell.
How soon is your next MRI? They can see how fast the tumor is growing or not growing when you have a 2nd MRI. Make sure they check your whole spine at least once, too. (They checked my whole spine and my head.) I had my second MRI within 3 weeks of the first one, so don't let them make you wait 3 or 6 months for another MRI especially with all the symptoms that you have.
Please let us know what is happening. Ask all your questions. This is the best resource I found in all my searching!
Teresa

[Joel]

Hey Shan--Hey. Sorry all this is going on. This sounds very similar to the deficits many of us had prior to surgery. Was the mass INSIDE the spinal cord, or outside? I think you should read a number of the posts on this forum. And, here are my 2-cents worth:
1. Make sure you have identified several competent neurosurgeons to look at your MRI films and report. So, there was no affect when they did the "after gadolinium" pictures? This is what normally indicates a tumor.
2. Normally, surgeons no longer do biopsies on spinal cord tumors--if they go in there, it is better to try to remove the tumor, instead of doing a 2nd surgery.
3. Send your films to Dr. George Jallo--renowned tumor surgeon at Johns Hopkins in Baltimore--he will do this for free, and then talk to you about it--he did a number of our members' surgeries.
4. Don't just do something because you are scared or your NS has said so. Get other opinions until you are comfortable with the next move.
5. The kind of tumor or mass you have won't be known for sure, until you have surgery.
6. This is a tough and important decision. There are goods and bads for each decision. Weigh them carefully.
7. Good luck and keep in touch!
Joel

[shan]

First to Teresa:

Yes, I have had MRI's with and without contrast on my whole spine and brain too. The problem is that the mass doesn't "look" like anything they can identify. The neurosurgeon in St. Louis is talking to radiologists to see what kinds of imaging they can do in the next few weeks. Currently at Barnes-Jewish / Washington University, they do MR-Spectroscopy on the brain but not the spine. He's talking to them about that as an option. Barring that, he wants to get some better images than my local hospital could provide. St. Louis is the best within a day’s drive, and it takes 5 hours to get there.

To Joel:

It is INSIDE the spinal cord – central and left, an eccentric location, but I have read that astrocytomas often are (if that is what it is). As far as the MRI’s – the mass showed up after the contrast agent was injected.
The family doctor sent me to a local neurosurgeon, who told me it looked like either an astrocytoma or ependymoma. I think he thought he was out of his league though, because most of his surgeries are herniated disks, so he sent me on to St. Louis.

I teach high school math, and I am really glad we only have 11 days of school left. Every day my co-teachers ask how I’m doing and I answer, “Hanging in there.” Yeah, but just barely. lol

Thanks,
Shan

[Tmasgio]

Hi Shan,
I live in St. Louis,MO and had surgery a year ago to remove a intermedullary Ependymoma from C3-C7. I had it removed by Dr. Neill Wright at Barnes Jewish Hospital. He was excellent and I doing quite well for what I had to go through.

There will be a lot of good advice here and all are very accurate. I would be happy to discuss anything with you. You can send me a private message if you prefer. I am sorry for your symptoms but glad you found us. I did not find the forum until after my surgery but it has been uplifting when I needed answers.

Tony

PS- I sent you a private message with my information as well.

[went]

If they don't know what it is, having a MRI of your brain and a CT scan of your lungs could rule a couple of things out if the results come back clear. E.G. Tuberculosis and Neurosarcoidosis (the latter being what I had).

I know you don't have any symptoms in either place, but neither did I. Some "diseases" that aren't normally found in the spinal cord will be found in their normal places, though. Does that make sense?

I completely agree with not doing anything until you have multiple opinions, and go to a major or University Hopsital. Trust me.

Make notes of everything that the doctors say, and ask for copies of your imaging and the reports.

Keep a journal of the symptoms and when they start, when they get worse, etc.

Also, ask the doctors any questions you think of, even if they seem stupid to you.

[shan]

Thank you all for your replies. Tony, I'm about to send you an email, and I appreciate the information you gave about St. Louis. Went, I have had an MRI of my brain, and they did a CT of my entire body with the PET scan (down to the thighs anyhow), and nothing turned up. So they have limited this mass to either a primary intermedullary tumor, or a demyelinating lesion, even though labs for MS have not shown anything. The doctors do agree that it's most likely a tumor, but they are afraid that if they go in surgically and it's MS, they will have made a big boo-boo.

I feel like I'm on a game show called "Stump the Doctor", it's round three, and I'm "Winning".

I really do appreciate all of the excellent advice. Does anyone have any more?? lol

~Shan

[8338]

Shan,
Boy, this all sounds like what I went through 5 yrs. ago! I had all the mri's done and was constantly being passed from one doctor to another. Fortunately, this neuro surgeon back here in Buffalo, NY did recognize that it was an sct, agreed to operate but said that he didn't really deal with that many. Well, he did do the surgery but, seeing that he didn't have the monitors to help him during surgery, he couldn't get out any of the tumor. That is when I took the advice of the people on this site and emailed Dr. Jallo (at that time he was practicing in NYC) and he called me personally on the phone one Sat. morning. My husband and I went to see him and he agreed to do a second surgery. He did the surgery, using the monitors, and got out 98% of it. I get mri's done every year and, knock on wood, it's staying put.
In my opinion, I would email Dr. Jallo about your case. He does research and is driven to help out with these little buggers.
Let us know how you do. You'll be fine- YOU FOUND US, DIDN'T YOU :-)
Barb
PS Dr. Jallo always has them give contrast at the 10 last mins. of the mri because he said that the contrast is what shows up these tumors the best.

[Joel]

I'm with Barb--see what Jallo has to say. No cost.
Joel

[hairchik]

I totally agree... send your MRI to Dr. Jallo!!! He is wonderful. I was so happy to have found this site because that is how I found him. Don't hesitate.