just diagnosed with syrinx/tumor at C-4

[mtbboulder]

Hello All-

Shoulder pain and weakness, then both arms painful to elbow and numb down to hand got me to get MRI and it shows both a neoplasm/tumor and syrinx but docs disagree if it is for sure a tumor.....nonetheless the neurosurgeon wants to biopsy it and I am wondering, especially researching this site and others, why not just take it out! I am scared and my partner is freaked too!Thank you!

Lisa

[Todd]

do not allow docs to biopsy without removing it. the biopsy surgery is just as dangerous as the removal surgery, you shouldn't be subjected to 2 operations. if your docs don't agree, see different docs. best practice (and this comes from my NS who told me this), is, if it is causing neurological symptoms, then it is causing neurological damage (maybe not permanent but damage none-the-less). if it's causing damage, it needs to be treated. If taking it out is the treatment, then take it out and biopsy at that point.

very common to have a syrinx with a tumor. the syrinx is not as big a deal as the tumor itself. none of us here are docs but we have all heard from them and been treated by them.

my advice, go see more neurosurgeons. the course of action being suggested to you is inappropriate and dated.

this is scary stuff, it's normal to be freaked out. we all were and most are still in some stage of being freaked out even after surgery (jeez, i know I am).

where are you from? what docs did you see? interesting that you started out with a Poll.

Todd

[jasonohio]

Lisa, I agree with Todd. Find other doctors to consult. Find somebody with a lot of experience. Don't be afraid to travel. There is a huge gap between the good ones and the bad ones. Tell us where you are from and somebody will be able to give you some names. Jason

[susan]

I agree that the standard of practice seems to removing the tumor, not doing a biopsy. However I don't believe it is true that a syrinx is not a problem. I had a relatively small tumor with 2 large syrinxes that were causing a tremendous amount of pressure on my cord. Removing the tumor is often all it takes to cause the syrinx to drain.

I too would recommend getting a second opinion. Personally I prefer going to a teaching hospital for big things like this. Spinal cord tumors are rare and even big teaching centers don't see a ton of them, but they most likely see more than smaller community hospitals.

It is true that none of us are doctors. At the end of the day we are really just experts on our own experience. We share in the hope that it makes someone else's journey a little easier.

Best of luck in your journey and keep us posted.

[jasonm]

Whether you should wait or not depends. I feel that the doctor should be able to tell you his best guess as to what this neoplasm is, if removing it might restore any strength, and if its safe to wait for another MRI. So you should definitely get another opinion.

On the other hand, my tumor hemorrhaged, probably from being super stressed out from work. I never even new I had a tumor, and a syrinx, until it hit me one day like breaking my neck, so consider yourself lucky to have found it before things get out of control.

Actually, the symptoms from my syrinx contribute to a lot of my deficits. It also has a chance of getting bigger, not likely im told, but it can happen. the syrinx will most likely collapse some after the "blockage" is removed.

[paul55]

Like susan, my syrinx is what caused my problems. Although I didn't have a tumor, the syrinx caused a considerable amount of damage, just by having to go in to treat them. One arachnoid cyst inside the dura was removed, and the other in the middle of the cord was drained, and I now have a tube inside my cord. Great!! Anyway, they are generally caused by tumors, but can wreck havoc just like one. They do need to be watched!

[diane]

I hate my syrinx!

[Todd]

don't misunderstand me folks, syrinxes are not to be ignored. I wasn't indicating that. what I find is that syrinxes are generally not a cause for an operation but tumors are. a lot of folks here on the forum are living with them, so, the doc didn't think they needed draining. if you were to get it drained, I am guessing a little more than a lumbar puncture would do the trick as opposed to the very invasive surgeries most of us have had taking out a tumor.

yes, syrinxes do cause problems.

[diane]

Well actually, no, they can't just be drained. The only way they can be gotten rid of is to surgically correct the problem that caused them, most commonly a Chiari malformation, but in the case of people here, an sct.

Even correcting the underlying cause does not always get rid of them, as is the case with me and others here who are still dealing with their syrinxes. They can be progressive and lead to paralysis. They can cause severe pain.

Surgically placing a shunt can help keep a syrinx drained, but shunts tend to occlude over time, requiring further surgery.

[diane]

I'd also like to add that the surgery to place a shunt is the same as the surgery to remove a intermedullary sct: the shunt is placed into the center of the cord.