2 x 2 x 2cm Schwannoma between L3 and L4 - Confused by Neuro

[Victor]

Hi All,

This is my first post.  I'm 35 years old and never had any issues until this year.  After my ski trip in mid January, where I fell a few times, I started having a sore back.  I though it was muscle related so after three weeks of soreness I went to get a massage and soaked in a hot tub for 1 hr.  I get out of the tub coughed really hard and then came the crazy pain.   

For the first three days I could not do anything without intense pain from my lower back to hips and weakness in the quads.  For the first few days I'm unable to drive or even walk around the house.  By day three I would lay on my bed and unable to move an inch without sharp pains and almost called 911 on multiple occasions.  I was prescribed Medrol 6 day pack by an orthopedist and that really helped with the swelling and pain.  Thanks to the Medrol I'm able to walk around the house and sit strait up.  It's been three weeks however I can't stand or drive for a long period without feeling pain and discomfort. 

The orthopedist orders two MRI's first without contrast and second with and referred me to a neurosurgeon. 

I've seen four Neurosurgeons and it's frustrating that not one has the exact same treatment plan. NS2 and NS3 specializes in spine procedures. 

NS1:  Suggested surgery to remove it as it will have to be done sooner or later, but he will have to remove a joint in order to get to it thus fusion is needed.  Wanted to get a CT scan and special x-ray to see how stable my spine is today.  Said Cyber knife should only be done if needed after surgery. 

NS2:  Gave me two options get surgery or just monitor.  If surgery is selected he does not have to remove a joint but will be drilling a hole about the size of a thumb nail in order to get to the tumor.  No CT or extra x-rays needed.  Said Cyber knife should only be done if needed after surgery.

NS3:  Gave me two options get surgery or just monitor.  If Surgery is selected he doesn't have to do anything with the bone but rather go through the back muscle to get to the tumor.  No CT or extra x-rays needed.   Said Cyber knife should only be done if needed after surgery.

NS4:  Thinks it's muscle related and suggest physical therapy then Cyber knife then surgery as last resort.  If surgery is done he will also have to remove a joint and have fusion.  He said Cyber knife is 70-80% success rate of now growing bigger within 10 years. 

The NS4 really threw me off.  I was all prepared to ask about surgery and he throws me a curve ball saying he thinks it's muscle related.  Now I have a bunch new questions and it completely caused me to second guess my decision to have surgery earlier last week. 

My question are:

1.  Has anyone elected to monitored instead of surgery upon discovering their Schwannoma?  How big was your tumor and how long did you monitor? 

2.  Did you still have to have surgery eventually?  If so how many years after discovering it? 

3.  I was in so much pain that I couldn't even turn in my bed without pain.  How could this possibly be muscle issue and not due to the tumor? 

4.  Has anyone done physical therapy and was successful in relieving these symptoms of pain in the lower back, pressure on hips and weakness in quads? 

5.  Did your Neurosurgeon propose Cyber knife as an option after surgery or before it?  

[Ruth]

Hi victor you situation sounds identical to mine, I have a nerve sheath tumour at L3/l4 2x2x2 cm also! I was diagnosed two years ago after having pain and weakness in my left hip and thigh and Lower back. My pain is mainly at night. I have also had 3 opinions. 1st opinion felt open spinal surgery would cure pain. At 2nd opinion I was advised to watch and wait, I asked about minimally invasive surgery and this surgeon told me this was not possible. The 3rd surgeon I saw is happy to do the minimal invasive procedure and would drill two small i holes to get to the tumour, however says it's better to wait as surgery won't cure pain and still had many risks. I've always been told gannet knife radiotherapy is not an option. Your 4th opinion sounds very promising to me !!!! Radio surgery is not as readily available in the UK unfortunately. I am now having physio through my job and I feel this is helping. I have decided to go with the 3rd surgeon. My research tends to collaborate with what the surgeon said.

[Victor]

Hi Ruth,

Nice to hear from someone in the same situation. After my post I reached back out to NS #1 thru #3 for followup questions. Basically all three would do surgery if they were in my situation. Thus I've decided to move forward with NS#3. All three didn't feel like physical therapy before surgery made much sense and thought that cyber knife before surgery is a bad idea. The reason being cyber knife will make the tissue sticky and scarred so if you had to do surgery later it would be even more difficult.

The best that cyber knife can do is stop it from growing. I would have been OK with that if I didn't have the symptoms I have today. If it was just soreness I may be OK to cyber knife it and still go on being active. Right now the discomfort keeps me from any sporting or outdoor activities and that will make me unhappy in the long run.

[terry]

Hi Victor,

I have posted before on my experience with treating a schwannoma with Cyberknife.  To make a long story short:  approximately one year ago I had the CyberKnife procedure to irradiate a tumor [it was thought to be a schwannoma but it was never biopised] at L2-L3.  This tumor was causing significant pain down my upper right leg. My neurosurgeon did not want to operate to remove the tumor.  There were probably several reasons for this:  (1)she said she could not dissect the tumor from the nerve root [but it seem to me that other surgeons could do this], (2)I had a previous surgery for scoliosis which fused my spine to L-3 [and she was worried that another surgery might de-stabilize my spine] and (3)this was an HMO and they likely discourage expensive surgeries.   Given the nature of the surgery and my limited choice of surgeons in my HMO, I didn't want to push this decision in the direction of surgery.  But given my pain, I felt I needed to do something.  If I could have changed medical insurance, I would have done that but I was way out of the time window to do that. 

I elected to have the CyberKnife procedure.  The consent for this procedure mentioned increasing pain but indicated that that was a very small probability.  I was fine for about 2 or 3 days after the CyberKnife BUT then I was in a LOT of pain probably because the irradiated tumor put more pressure on the nerves.  I was then put on a steroid to reduce the swelling.  Steroids are nasty drugs and it caused a wide variety of unpleasant symptoms [e.g. severely disrupted my sleep patterns].  It took me a long time to finally wean myself off this steroid because of the pain.  After that, my neurosurgeon said that a laminectomy was an option to relieve the pain I was in but I needed to wait 3 months to see if the swelling would go down on its own.  Even after 3 months, I was still in a lot of pain but I elected not to have surgery because I just didn't want to risk having a bad outcome.

But here is the bottom line:  after about 6 months, I felt better and now [at about the 1 year mark] I have pain levels that I can manage with Gabapentin and medical marijuana and I have a pretty reasonable quality of life.  In the end, I am glad I didn't have surgery.  Given the nature of the surgery to remove tumors like this, I didn't want to have it done by a surgeon that not only didn't want to do it but also probably didn't have that much experience in this type of surgery.  You really need to find the best surgeon you can find if you elect surgery. 

I know that having a CyberKnife procedure is not the recommended procedure for treating spinal tumors [in part due to the painful experience I endured] BUT I did not have to risk a bad surgical outcome.  For this alone, I am grateful.  I hope you get some relief from this tumor but my guess is that you are going to have to have some treatment other than physical therapy.  I wish you the best of luck and I would be happy to answer any questions you might have.  Terry