Asymptomatic Schwannoma and endometriosis.

[jackelyn]

Hi folks,

I was recently diagnosed with a Schwannoma (3.8 cm) off of left side by L5.  It was discovered by accident after complications from ovarian cysts due to endometriosis.  Saw a Neurologists after it was discovered and is taking a no action approach since its not causing any symptoms.  Ordered a biopsy and will keep an eye on it.  He mentioned that tumor is located on the outside of the spine nerves but actually on the nerves right in front of the spine...mentioned they are the nerves that regulate sweating, temperature, etc....Tried to visualize what he was talking about and I think I get it.
I recently had surgery to remove ovaries and cysts, two sizeable cysts were removed from the same left side.  Left side hurts more now and now so preoccupied with thoughts of this schwannoma.  Feeling fearful and worried, I try to stay positive, but it gets though sometimes. 
I asked dr if tumor could be an endometrioma (cysts created by endometriosis).  He said he has never seen one, but he said there may be a chance. 

Has anyone had any experience of having an schwannoma with no symptoms, and what was the game plan after?  Surgery, No Surgery?  Can I go around living with a tumor on or near my spine and ignore it?

This is new to me, any insight will help. 

[moddzee]

Hi Jackelyn,

I have a dumb bell schwannoma on T-5 and T-6 that is 6.8cm x 5.5cm. It also enters the spinal column through the foramen at T-6 and extends about 2.3cm inside the column. I believe it gets the "dumb bell" name form the fact it is squeezed tight in the foramen and expands on either side to somehow resemble a dumb bell. Either that or the surgeons were messing with me! Mine was discovered by accident 11 months ago since the only symptoms I had prior to discovery were so minor I never associated them as anything noteworthy. Mayo Clinic in Rochester, MN did the first diagnostics about 9 months ago and I just returned from my first follow-up visit last week. Another MRI of the tumor site showed no significant growth and a second MRI of the lumbar spine found no additional tumors. The tumor displaces the tip of my lung, and slightly displaces my aorta and spinal cord. The two neurosurgeons and the neurologist all agree that surgery should be considered only if there are nerve problems or very severe pain. The risks for my particular surgery far outweigh any benefits at this time. I am comfortable with their recommendation and will do my best to put it out of my mind. I might be an oddity after reading many posts on this site. I am truly blessed not have to make the surgery decision now. Since I'm nearing 57, and they think the tumor has been growing 10 or more years, I may be fortunate enough to avoid surgery for the rest of my life.

Best wishes,

Mark

[jackelyn]

Thank you for the reply! Truly appreciate it. I'm just trying to wrap my head around the idea of having this tumor that may or may not grow or cause me any pain. With my recent surgery to remove ovaries, I have been having lower back pain and all I can think of is that this lesion is starting to cause me pain.
I spoke to my neurologist's nurse for the scheduling of a biopsy and reassured me that I may be thinking too much and I must admit that I do..,all jokes aside, I am a bit of a hypochondriac.
Question: what was your experience with a biopsy? Are they necessary or seeing them on scans enough for diagnosis? My dr says he is certain its a shwannoma. Thank you once again for your time!
Blessed!

[lw]

Hi Jackelyn,

Biopsies are normally taken during surgery to re-sect the tumour. Most primary spinal tumours are benign and they can usually tell by looking at your MRI scan what type it is. The biopsy part is just standard practice to make fully sure it isn't cancerous. Schwannomas are by definition benign, so I can understand why your doctors are not too concerned. Spinal tumours, like tumours elsewhere in the body, are harmless until they start impinging on the spinal cord. When that happens you start to experience neurological deficits such as mobility problems (depending at what level the lesion is). I know it is a huge shock to be diagnosed with a SCT but it probably isn't as bad as you think. The docs are monitoring the situation and I gather from what you have said that you are fully functional.

I'm not a doctor but I do know that it is possible to have the nerves that regulate temperature and sweating severed. I watched some programme once where somebody had a problem with perspiring too much and they underwent a neurosurgical procedure. I know it was only TV but it was real life and based at one of the London teaching hospitals. So one would assume we can live without these nerves! Funnily enough, I had some of my nerves cut and can only sweat down the right side of my body. Save a small fortune in deodorant.

Seriously though, you should be OK. My experience with a biopsy was fairly straightforward. I got the results via telephone about a fortnight after my operation. Of course, not everybody's experience is the same.

I really hope you get better soon what with everything you've been through with your health, Jackelyn. You certainly deserve some good luck - and do try not to worry too much!

[jackelyn]

Thank you, feeling blessed and secure. Thankful for this forum.