Monday, May 19, 2014

Schwannoma Case Study # 7, Anonymous Person with Schwannoma at L2-L3, with Partial Removal




Welcome to Schwannoma Case Study number seven, this one an anonymous person who had a Schwannoma at L2-L3 and only a partial removal.  Though the person chose to remain anonymous, we sincerely thank them for sharing their story in hopes of helping others! - Neil
_________________________________________________

1)  How old were you at the time of your diagnosis?  

I was 48 years old.

2)  Do you have any history of Schwannomas in your family?  

No. 

3)  Where was your Schwannoma located?  

The June 2006 neurosurgeons review of my MRI showed an intrathecal mass in the L2-L3 area that occupied ½ of the spinal canal.  The surgeon felt that it likely represented a cystic schwannoma or menignioma.  He ruled out ependymoma as that tended to be at the conus medullaris, which is in the L1-2 area.   It looked smooth and without evidence of bony destruction and he felt that it likely to benign.   He stated there were no other options to consider but surgery to obtain a diagnosis and eliminate the tumor.  It was scheduled for July. 

 4) And what were the symptoms that lead to your diagnosis? 

I have always been a very active person.   I remember my first noticeable pain in 2003 (age 45) when I was walking a flight of steps and had skipped over a few at the bottom and landed on the ground.  I suddenly had this sharp pain on the right side of the groin area and along pain the inner upper right thigh.  After feeling the pain for about six months off I saw my family practice doctor.  It was found that I had a very small hernia on the lower right side groin so surgery was ordered for Oct. of 2003.  To me it seemed logical, as I was prone to lifting heavy things and thought this seemed logical.  Following this minor surgery in, I continue to feel pain.  I was thinking it was possible adhesion pain so I revisited the surgeon and for about 3 months and received cortisone treatments.  There was temporary relief.  My primary care physician prescribed vicodin for pain and I would feel fine for periods of time. 

I was continually prodded by my husband, who would witness my pain attacks, to continue to seek better answers.  So from early 2004 until my 2006 MRI which revealed the tumor I felt like a pin ball bouncing from one specialists to the other. I was sent to gynecologist because maybe it was endometrosis.  It wasn’t.  In hindsight the groin pain was what seemed to be what was resonating more when I spoke to my family practice doctor although sciatic was also brought up as a possible condition. 

In December of 2005 I went with my Mother on bus tour to Branson Missouri, I was the youngest person on the trip.  I think it was over a 12 hour bus ride spread out over two days.  After eating a buffet I suddenly felt horrible pains once again in the lower groin area.  The only way I could describe it was that it felt like something inside this area was twisting.  That night in the motel I couldn’t lay down to sleep because the pain was horrible when I was in a prone position.  I was constipated and I remember walking the hotel hallways because the pain less intense. The next morning I was loaded on the bus (more sitting) and by mid morning at our first stop I called my doctor back home and said I needed some kind of pain pills (vicodin) to which an order was faxed to the Branson pharmacy.  While the rest of the busload went on a dinner boat show ride I laid in the motel room in pain; even vomiting probably because I was downing the pain pills like candy.  When my Mother returned I told her and the bus tour person that I needed to go to the ER; so off I went.  After 4 hours in ER I left being given the diagnosis of bowel obstruction issues and given some pills.  I felt better gradually.  The next day every senior on the bus tour had some medical story to tell me in which they felt was my condition! 

Once back home I saw my family practice doctor about my episode. At one point, I was sent to a nutritionist because based on the ER diagnosis of bowel issues they thought it might be food allergies or lactose intolerant.   I had a CT scan, nothing showed up.   Then I had a colonscopy performed; once again nothing irregular showed up.

I was getting frustrated and feeling lousy I decided to visit a chiropractor seeking sciatica relief.  I noticed more pain after days when I wore high heels or doing certain exercises like sit-ups.  With weekly treatments I thought I was feeling better or at least I wanted to convince my husband that I was.  In hindsight I’m surprised this manipulation didn’t cause more trauma to the cord.  I do remember my last treatment.   I climbed off the table and had an extreme spasm in up the lateral and anterior thigh.  After that episode, I sought out acupuncture.  It provided noticeable relief but because of the costs I had to back off the number of treatments. 

In May of 2006 I was in having my annual physical and while in the doctor was doing one of the tests I had an acute twisting in upper inner thigh area.  Having witnessed this and she immediately said this has to be nerve related and that’s when the MRI was order. 


4)   Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet) 

I underwent partial L2 and complete bilateral L3 laminectomy removal of schwannoma.  The tumor was found to be arising from either L3 or L4 nerve root on the right side.  The surgeon was surprised to note the tumor arising from the motor branch because more than 90% of the time this type of tumor arising from the sensory branch and the tumor could be removed totally with the sensory nerve.  In my case, the nerve that was the origin of the tumor remained active.  Every time the nerve was stimulated during surgery a strong muscle contraction was noted.  After he consulted with my family, none of them wanted to take the risk of causing grave danger to this motor nerve and my right thigh by removing the nerve with the tumor so he shaved the tumor off the nerve.  Estimating 60% of the tumor.  It was confirmed benign schwannoma. 

From the surgeon’s notes-  Initially, the tumor was not visible when they first began surgery.  However, after all nerve roots were mobilized laterally to the right side and the tumor was located anterior to cauda equina and became visible.  It was well capsulated and smooth, with multilobes.  The nerve appeared to attach running along the wall of the tumor.  The tumor was felt to represent a schwannoma arising from the nerve root which, after stimulation, was found to be the L3 or L4 nerve root because that nerves appears to a be a motor nerve which is not typical for a schwannoma to arise from a motor branch.  Every time it was stimulated a strong vastus lateralis muscle on the right side contracted strongly.  The nerve at the distal portion of the tumor gave a strong muscle contraction when it was stimulated.  However, at the proximal portion of the tumor and the nerve proximal portion of the nerve, it required a 1.2mA to produce muscle contraction.  The contraction by stimulating the proximal portion of the nerve was also noted to be weak, less that 50% of the distal nerve when it was stimulated with 0.4mA.  Since the monitor indicated that he tumor was arising from the motor branch which is unusual, the decision after consult with my family, was to shave it.  However, because of bleeding, by doing so might result in damage to the nerve with bipolar electracoagulation in the process of controlling the bleeding, they had to accept leaving a portion of the tumor slightly away from the nerve itself.  After shaving it was felt that 60 to 70% of the tumor was removed.  Based on the EMG monitor, it was felt that the tumor was arising from the motor branch of the L3 or L4 nerve because that nerve innervated the right vastus lateralis muscle. 

5)   Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of schwannoma?

Well, experiencing only a partial removal, I would pose these ‘what if” questions prior to the surgery.  I was told my surgery would be 4 hours with the outcome full removal.  It was seven hours because of the surprises encountered when they found the source of the nerve.  I think as the patient it would be beneficial to be in a position to be as informed about what situations could arise if they are unable to get the whole tumor.  This question never crossed my mind prior to the surgery. 

I felt lucky with my draw of surgeon as he was a very seasoned and well respected neurosurgeon in the Madison, WI area.  I think it’s important to know the number of surgeries of this type they performed and their success rate. 


6)   Can you describe what the recovery process was like for you – if you feel you have made a positive recovery…and what things you have done that have been of most help to you?  (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)

I remember having a horrible back pain while in intensive care.  The nurses rolling me throughout my time there and walking to the rest room created great pain in this operated area of my body.  But I was lucky to not have any complications and was released to spend 8 days in rehabilation/therapy section.  I took my pain pills as prescribed so that I could get the most out of the therapy.  I went home and followed all directions like walking and I weaned myself off pain pills.  I was back to work after 8 weeks. 

7)  Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)

I would like to mention that I received twice weekly acupuncture treatments prior to my surgery.  I wanted to prepare my body for the surgery and also did regular treatments from until 2010.  I exercised regularly and adopted a healthy diet.   During this time I had yearly MRI’s done that showed no tumor growth.   I was active doing all my normal activities including biking, cross country skiing, yoga and walking. 

In 2011, there began major live style changes related to my husband’s transfer to another state for his job, my job became increasingly stressful, financial issues, death of both parents, and eventual retirement and relocation to the state of KY.  During these years I started to neglect a healthy life style.  The MRI of 2013 and 2014 showed tumor growth which now leads me to the “what next” phase of revisiting surgery. 

I had about four noticeable spasms/pain since July of 2012.  One came as a result of a morning stretch that caused severe spasm/pain in the inside muscle of my right leg.  The others resulted from movements that put the right leg in weird positions (water aerobics and a yoga position).  In January of 2013 I visited a neurosurgeon who advised on the growth but said we would just monitor it and to come back in a year.  He went into the slow growing dialogue; minor nerve loss in right leg when monitored.   I have to admit after meeting with him I had no intention of seeking his counsel again as he didn’t have the personable touch that I had received from my surgeon in Wisconsin.

In January of 2014 I had an episode of drop foot; right foot.  It last about 3 weeks and so off to my family practice doctor I went.  She provided the name of a neurosurgeon but also sent me to an ENT after I complained about ringing in my ears.  I met with the ENT and stated hearing loss in my right ear, possible tintinus or allegies.  I informed him of the schwannoma cells in the lumbar area and so he ordered a brain MRI as well as prescribing allergy meds.

April 21, 2014 I met with the new neurosurgeon who reviewed both my new lumbar MRI and brain MRI.  Nothing in the brain that was a welcomed relief but the lumbar showed minor growth from the MRI of 2013.  He was very interested in my 2006 surgery and has ordered a cervical spine and thoracic spine MRI and a lumbar spine with Cyberknife protocol of the L1-L4 area.  This will happen on May 5 and my husband and I will meet with him on May 12.  He noted once again minor nerve loss in my right leg and the slow growth of schwannoma.  He emphasized the outcome of taking no action being paralysis and incontinence.  He described the Cyberknife procedure that has now been the fascination of my google searches!  He was very enthusiastic about this non-invasive surgery.  A second opinion will probably be considered as my husband’s insurance does cover surgeons at John Hopkins which is 8 hours from my home.  My hope is that the cervical and thoracic spine MRI’s do not show tumor growth. 


On April 24, I visited an acupuncturist and had a treatment as well as cupping.  I intend to journal my treatments and how I am feeling.  It’s my hope to get my body prepared for whatever future surgery I may need and also for the benefit of anyone else who may wish to include this as part of the wellness prior to a surgery. 

Schwannoma Case Study # 6, Bart Johnson, Schwannoma Located on the Posterior Side of L4 - Schwannoma not yet Removed

Welcome to our sixth Schwannoma Case Study - this one is a gentleman by the name of Bart Johnson who has a Schwannoma at L4, not yet removed.  Bart was kind enough to sit down and answer our case study questions as one who is living with a Schwannoma and keeping it monitored.  We thank Bart for sharing his story! - Neil
______________________________________________________
1) How old were you at the time of your diagnosis? 
I was 55 and the diagnosis was in March of 2013.  I am a runner and experienced a partial tear of my upper hamstring tendon.  The MRI that diagnosed the hamstring tear also noted a spot on the posterior side of my lower spine.
2)  Do you have any history of Schwannomas in your family? 
No, I have never heard of the tumor before my diagnosis.
3)  Where was your Schwannoma located?  And what were the symptoms that lead to your diagnosis?  

It is located on the posterior side of L4.  The neurosurgeon explained that it was nestled up close to the iliac artery.  I did not have, and still do not have any symptoms. If I did not have the hamstring injury I would still not know about the Schwannoma today.


4)   Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet)   
After the original diagnosis I went back for an MRI in three months and then again after another three months.  There was no growth.  I did not have any other MRI’s performed in that area in the past so there was no past benchmark to use.  The neurosurgeon explained that they know how Schwannomas grow, but they do not know at what speed.  It can be different for each person.  After the second repeat MRI the surgeon told me not come back for a year.  That was mid-February, so he told me to remember to call back to schedule the MRI at Valentine’s Day.  Great! Now I will associate Valentine’s Day with an MRI and the possibility of surgery!
The surgeon described the surgery as needing to be very precise.  The entry would be through my abdomen.  He explained he did not want to leave any of the Schwannoma behind, because when they do, they usually grow back.  He then said that may mean severing some small nerves that would lead to some numbness in my left leg.  He did tell me it would not harm my muscular control. After reading other’s posts about post-surgery symptoms the “numbness” has me a little worried.  I wonder how bad it would be.
Someone asked me if I was sorry they found the Schwannoma by chance.  I said “heck no” I was glad they found it.  The reply was “aren’t you going to worry about it now?”  I was truthful and said “Nope, I hope they burry me with it”.  I can truly block out thinking about it and just live my life.  If I become symptomatic, or the schwannoma grows, then I will think about it.  Not until then.
5)   Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of schwannoma?  
First thing you want to determine is what the physician’s experience with Schwannomas is.  How long has the Dr. been in practice?  What is their experience with your particular type and location of Schwannoma? What should you expect after surgery?  What percentage of patients have different types of post-surgical pain, or other symptoms.  Write down a list of all your questions.  Your doctor should be able to explain his answers to all of them.
6)   Can you describe what the recovery process was like for you – if you feel you have made a positive recovery…and what things you have done that have been of most help to you?  (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)
After my doctor explained the surgery I asked him how long until I was back to 100% of pre-surgery.  He told me there would not be a “100%”.  That was a shock.  He explained entry would be through the abdominal wall and a very delicate surgery going around the blood vessels and nerves.
7)  Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)

TBD, if surgery is needed.  I asked my doctor if they ever stop growing and he said yes.  Thanks what I am hoping for.