Schwannoma Case Study #15, Tina Baker, and the story of her Retroperitoneal Schwannoma

Hello all! We are happy to present to you our 15th case study, this one the story of our friend Tina Baker and her retroperitoneal schwannoma (This is a schwannoma near a person's kidney). Schwannomas of this kind are quite rare, and we certainly thank Tina for taking the time to sit down and share her story, in hopes of helping others who may be seeking treatment or answers!  -Neil
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1)  How old were you at the time of your diagnosis?

47

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

No

3)  Where was your Schwannoma located?  And what were the symptoms that lead to your diagnosis?

It was a right sided schwannoma between quadratus lumborum and psoas at the L5 level.

My diagnosis was an incidental finding.  In September 2012 I had a fall down a flight of steep brick steps and badly hurt my back.  After a couple of months I noticed I was having shooting pains in my right leg, especially when walking down steps.  I informed my back specialist of this (who I was under since the fall).  He requested a MRI scan.  This showed something up but I needed a CT scan with contrast for more defined results.  I had the CT scan (and ended up as an inpatient as I had a severe allergic reaction to the contrast medium).  A couple of days later I received a call from my back specialist to see him urgently.  He told me the scan had revealed a tumour next to my kidney.  He said he was referring me to another hospital to have a needle biopsy.  This was arranged and the result was a schwannoma. After this is where my visits to numerous hospitals seeing different surgeons really took off.  

My symptoms escalated from the shooting pains, to constantly having electric shock feelings from my thigh down to my knee, numbness and pins and needles.  I had pain in the hip area and back pain ( although I have suffered with back pain for many years and was badly bruised from the fall so can't really say if any back pain was associated with the schwannoma). 

The first Surgeon I saw at a London Hospital said he didn't think the symptoms in my leg was associated with the schwannoma.  He referred me to a neurologist.  The neurologist requested a full head and body scan to ensure there were no other schwannomas and EMG testing.  These tests confirmed an absent response from the symptomatic right lateral cutaneous nerve of the thigh in keeping with the known schwannoma around this nerve.  I then went back to the Surgeon and he said in order to remove the schwannoma it would mean major surgery, open abdomonial surgery.  He would have a mdt meeting to discuss the surgery and then I was to see him after.  At the following meeting he confirmed he did not want to operate taking into account the risks, he said I might never walk again.  He referred me to another Surgeon at another London hospital.  At this meeting I was told I had a form of cancer and it needed to come out!  As we know schwannomas are benign in the majority of cases so I don't know why he said this to me.  He said he was confident to do the surgery despite the risks.  However, he too changed his mind and my confidence in the Surgeons was rapidly diminishing.  By the summer of 2013 my leg was really symptomatic and it would be embarrassing when out and I am jolting with the electric shocks.  Walking was getting more difficult.  I was getting very frustrated as after the biopsy in January I was told I would not have to wait long for surgery in London, yet it was six months on, symptoms much worse and nobody wanted to do the surgery despite agreeing I needed surgery.

I then contacted the nurse I had been allocated and shared my frustration.  I asked if I could be referred to The Royal Marsden Hospital which is a cancer specialist hospital.  Although my tumour was not cancerous I felt that The Royal Marsden may be able to help me.  This was the turning point.  I met with a Surgeon whose special interest was schwannomas.  He had dealt with schwannomas before and although he informed me of the risks he felt things would be fine.  He said he would have to use the open surgery approach as it was important for him to be able to manipulate the nerve.  For the first time I felt optimistic about the surgery and felt I would be in good hands.  He booked me in for surgery two weeks later, 23 October.

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)

Through a lower abdominal mid line incision the cavity was entered.  The colon was mobilised out of the right peritoneum to the mid line.  The schwannoma situated in the lateral cutaneous nerve or just after it rises from the femoral nerve and was easily discovered.  The capsule was carefully opened in the direction of the nerve fibres and the schwannoma enucleated with ease.  The nerve was intact at the end of the procedure.  The organs returned to its normal place.  I was in ICU after surgery and remained in hospital for six days.  On day two during the night I was woken for X-rays as my right lung was being 'lazy' but I was closely monitored and was ok.  I came home with a walking aid and crutches and of course plenty of pain medication.

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?

It is crucial to find a Surgeon who has experience with schwannomas although be prepared it may take longer.  My experience with the Surgeons was they were eager to inform me of the risks associated with the surgery, which of course they have to, but not so keen on any optimism for the surgery.  As well as asking/being told of the risks and all the bad bits, ask how well it may also go and what the best outcome may be post surgery.  This will give you a basis to really weigh up the pros and cons and if you have to have surgery because of symptoms ruining your quality of life, hopefully enable you to go into surgery with some optimism that all will be well, rather than is it a gamble you are embarking on.  Ask about the pain afterwards and is it likely you may suffer with adhesion pain.  I was not warned of adhesion pain at any time.  Also ask the Surgeon for a realistic estimate of time before you will get back to some kind of normality although I understand everybody is different and may be a difficult question to answer.

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)

It was difficult to walk and move about for a few weeks and having a bath was extremely difficult as my leg felt quite numb and I had a lot of abdominal pain.   However, after about five weeks the abdominal pain was very intense and disabling.  To go out I had to be in a wheelchair as I just couldn't walk for longer than a few minutes.  On Christmas Day I was in so much pain I couldn't even walk to the next room, my two sons had to carry me!  I saw my GP and he said he would admit me to hospital.  I did not want this so I had yet another scan which proved to be ok.  I was referred back to the Surgeon and he said the pain is more than likely to be adhesions/chronic scar tissue. He told me given the nature of the surgery I could realistically expect it to be up to two years before I really started to feel better.  He then referred me to the Pain Clinic at The Royal Marsden where they altered my pain relief which helped.  It was not until about April/May time that the pain started to subside and walking became much easier and I felt I was getting back to normality. As each day passed I increased my activity to a comfortable level.
I feel I have made a positive recovery, although a very slow process.  I still have the same symptoms in my leg although they are no where near as bad as they were before surgery.  I found the recovery during the first four months to be quite depressing as I was so frustrated at not being able to walk and do everyday things such as driving (I was told prior to surgery I would not be able to drive for three months), lifting the laundry and basic things and being able to go out when I wanted.  I had to rely on being taken out in the wheelchair but I use to look forward to those trips out.  I think you have to be positive and literally take one day at a time,  and don't think about tomorrow, that's what helped me psychologically. 

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)

Yes most things, although walking for a long while can still be an issue sometimes as I can get hip pain (as well as back pain, but I don't think the back pain is related) and the symptoms in my leg can become worse and it feels numb.  I am still mindful that I can't lift anything heavy as I still have some abdominal pain which varies according to my activity. Despite this I am glad I had the surgery, it was worth it.