New L5-L6 S1 suspected Schwannoma

[jk]

Hi All

I have recently been diagnosed with this :

"L5-L6 /s1 25 x 17x 15mm lobulated heterogeneous T2 hyperintense lesion results in expansion of the left neural foramen with posterior scalloping in the verterbral body . no herniation. Central canal and right neural foramen patent. Consistent with a nerve sheeth tumor "



I have been reading the spinal cord tumour forum and am a bit anxious of the many complications, so I want to get this treatment correct.


At the moment I don't have any of the common symptoms. This was found by accident, when looking at upper back and neck headaches on the left side in an MRI.


I went to a neurosurgeon today and he advised that it seems to be a very old long standing tumour due to the enlargement of the foramen and bone scalloping. So because its long standing its unlikely to be malignant. Now he advised that because he has no direct access, it will be tricky and hence it will be easier to do a laminectomy - cut the bones from the back. near it to get access and then do a 4 pin fusion of my back !


Is it possible to do this tumour removal without cutting the bones and the back fusion ? As it seems to be lot more risky to do this, then simply remove the tumour.

Also because it has been so long, he think their is no exact rush to do this also because I have no major symptoms yet.

Also I have seen on here several people with L5 tumours had nerve complications or damage after surgery, is this more or less risky then the L5-6 S1 location ?

Should I request my doctor use nerve monitoring ?

Any advise appreciated

I am located in Melbourne Australia, so if anyone know any experts in Melbourne for this that would be appreciated.

Jk

[Leofwen]

Hi there

It is a bit overwhelming when you have this diagnosis. I have a schwannoma at L5 at the exit foramen. Mine is 27x 19 and is considered relatively small. It was diagnosed in Feb.

If you are not having any symptoms you can always watch and wait and have regular monitoring. However as you will see from all the literature the earlier they are removed the better.

I have lots of debilitating symptoms which have progressed significantly over the last 6 months. I am being monitored as they don't want to remove due to the risk of deficits. I think, but am not medical, that foraminal tumours are more difficult to access and can be a problem if they are dumbell shaped (on both sides of foramen).

Like most on this forum, get a second opinion and go to a surgeon who has experience of these rare tumours.

If they say it is benign, then believe them, as these tumours only become malignant extremely rarely, only about 1% of all schwannomas, and these tend to be for folk with NF 1 ( neurofibromatosis), which is a genetic disorder and you would know already if you had it.

Whilst it is a worry, there are a lot of really helpful folk on this forum and don't let it consume you.

Keep posting

Sue

[Todd]

Really can't get to the tumor without removing the bones if it's in that space. you definitely want nerve monitoring. always make sure of nerve monitoring and make sure that the doc has a game plan should the monitor begin indicating that motor nerves may be getting damaged. My doc said that if that was the case, he would stop resection and debulk, to ensure I was still able to walk.

[jk]

Hi All thanks for the feedback.

I have just sent my MRI photos to Prof Jallo for expert advice, before i go see 1 other specialist tumour neurosurgeons for their opinions.

So far i am in not too much pain or problems, but i fear that will change soon....

[gordy1]

Hi Jk,

I'm in Perth, Western Australia, and have been through a long journey with my son's tumour.

I was going to advise you to contact George Jallo (like many other people on here have been advised to do). We did, albeit a few years after my son had surgery in Perth, and I wish we had been in contact with him before any surgery was done. If the advice you get given by George differs from the advice you get in Melbourne, I would be very hesitant to follow the Melbourne advice.

In addition to seeking advice in Perth last year, we also met with a (paediatric) neurosurgeon in Sydney before we contacted George. His recommendation differed from George's.

We made the trip to Johns Hopkins last year (for specialised radiotherapy, not surgery) and were very happy to have made that decision.

Gordon

[gnupat]

I live in the LA area and was recently diagnosed with a 4.5 cm tumor near L5. I have experienced no pain or problems.

I would like to get a 2nd opinion on treatments, and names of local specialists would be appreciated, including Cedars Sinai.

Thanks

[jk]

Hi I had a second doctors opinion, and he has advised that since I had no major symptoms I should do nothing but do another MRI in 1 years time.

the only real sideffect is, on my left side same as the Schwanoma, I have a sort of back pain, and left side tension on my back and often get headaches that last all day.

but I am not sure if they are related to the schwanoma, or to a slightly bulging disk on C5-6 ?

[landofconfusion]

I have a tumor at L5-S1 as well and have been "watching & waiting" for about 2.5 years. If you decide to postpone having surgery & opt for this more conservative approach, then welcome to the club. I think you'll feel much better when/if your next MRI shows no growth.

I'm a bit surprised that the doctor is advising you to wait a full year for your next MRI, but that's based purely on my own experience & from what I've read on these boards. Six months for the first follow-up seems more common and then one year after that if there's been no growth and no changes in symptoms. Again, I'm not a doctor and am relaying only what I've read here & experienced myself.

[jk]

OK good to here their is others like me
On your MRI did it show scalloping of the bone ? in my case it does so it signifies that it has been their a long time to erode the bone. Do you have any symptoms or problems ? I just have left side headaches, but its also the same side I have a bulging disc as c5c6 so not sure what is causing them.

What size is your one currently ? mine is 25 x 17x 15mm

[landofconfusion]

I had a lumbar MRI in October 2010 because of long-standing episodic back pain (which started more than 20 years prior). The pain often radiates into my right hip.

I'm due for another MRI this summer. The one I had last July indicated no tumor growth and it's about 7mm x 12mm. My tumor does not enhance with contrast, as most schwannomas do-- so the neuroradiologist thinks I might have a benign epidermoid. These are so incredibly rare that my neurosurgeon thinks it might just be a non-enhancing schwannoma. The only way I'll ever know is if I have it removed and pathology takes a look at it.

I have not been told I have scalloping of the vertebra and see no mention of it in my MRI report. I do have a couple of herniated discs, however-- and the episodic pain could be coming from the one that happens to be right above my tumor. My neurosurgeon has indicated that this tumor could have been there for a very long time.

My next MRI will hopefully be of my entire brain & spine, as Dr. Jallo suggested when I sent him my MRI images.

I am fortunate because I do not have troubling neurological symptoms & so far my tumor doesn't appear to be impinging on any nerve roots. If I start having neurological problems, then I'll probably go ahead & have surgery to remove it. If not, then I see no reason to risk possible surgical complications... but that's just me.