How Long Before I Feel Better After a Schwannoma in an Arm or Leg?

Hello all!  This is the next in the series of blogs we are doing which seek to answer what recovery times can be like for people who have had schwannomas in particular parts of the body.  In this posting we seek to answer what recovery time was like for anyone who had a schwannoma anywhere in the arms or legs.  We thank, as always, friends of the Schwannoma Survivors & Schwannoma Fighters Facebook page who contributed their answers to this question - and we hope you find them useful! - Neil
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Answer 1

I have schwannomas in my legs and feet. I had one taken out from my thigh and it only took a week to recover. The others cannot are causing a lot more pain than the first one. I am seeing my neurologist on Monday to see if they can be removed or not. The one on the bottom of my foot is excruciating, the one in my calf only causes pain if I hit my leg against something or touch the area.

Answer 2

Right Arm dec. 2013 and returned to work in feb. 2014. Pain until mid january. Still numb in 2 fingers and hand. Consistent cramping hand even now cannot hold items long time without cramping even typing writing at times cramps up and at times cramps up no reason. Where removed still tingling but no pain.

Answer 3

Right thigh November 2008. Prior to surgery I was unable to walk or bear weight. I was better IMMEDIATELY after surgery. I would say I had aches and "surgical" pain for 1-1 1/2 weeks after surgery but compared to the presurgical it was nothing!! Currently I have one in my right upper arm and left lower leg confirmed with MRI--surgeon is out of country for a month so waiting to schedule next surgery.

Answer 4

I had one removed from the bottom of my left foot in February of this year, 2015. It spanned 2/3 of my foot and was 9 cm by 4 cm long and a smaller growth in my second toe that was 2 cm by 4 cm. I was off my foot for seven weeks total. I had stitches in the bottom of my foot and couldn't apply any pressure for the first six weeks. I had to go weekly for them to change the bandages and check my foot. The seventh week I could slowly start to put weight on my foot. Even after I could walk again and resume regular activities it still hurt for several weeks. I had numbness in my big toe for almost three months after the surgery. Every once in a while I still have some pain that shoots through my second toe. It's just a sharp pain, but quickly passes over.

Answer 5

I had one egg sized removed thrugh the bottom of my left foot in July of 2014. I could not walk at all for six weeks. The pain was excrurtiating. It continued to hurt for several months. Pain from the scar and the nerve for up to six months. One year later the scar causes minimal discomfort but I do get shooting pains randomly from the nerve. It feels like a sharp pin is stickining up my foot and shoots to my knee.

Answer 6

Just coming off of removal of a cluster of schwannomas in my calf. Had one removed many years ago and a cluster grew back (5) Hurt terribly when I would bump it. (You become so protective of your lumps and bumps because the pain is awful )! Still have some residual nerve pain, but 80% better. So happy I had them removed and will go back to same neurologist to have an acorn sized one in my forearm and multiples on my hand .

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Case Study # 18, Anonymous Person With Deep Peroneal Nerve Schwannoma

Hello all - today we'd like to present our 18th case study, this one a lady and friend of the Schwannoma Survivors page, who goes only by the name Linda (no other personal details) She took the time to sit down and describe her experience with a Deep Peroneal Nerve Schwannoma.  As we seek to get stories from people who have had as many different kinds of Schwannoma as possible - we thank her sincerely for taking the time to do this case study for us, and we hope you find it useful! - Neil
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1)  How old were you at the time of your diagnosis?

I was 50 when the tumor was found.  

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?

I had two schwannomas on the deep peroneal nerve of my left leg.  Symptoms were similar to sciatica-foot pain, pins and needles feelings that became increasingly bothersome. The pain was especially bad at night.  I am a distance runner and attributed the pain to activity for quite some time (about 2.5 years-maybe more).  During that time I had done PT for sciatica/piriformis syndrome etc. but this never resolved the pain.  However, as the pain intensified to a point where I realized this can’t possibly be just be from running, I sought treatment from a local orthopedic practice where I mentioned the ongoing and intensifying pain and a palpable “lump” at my ankle.  Initially, this “lump” was thought to be nothing but doc said “we should check it out” and sent me for an ultrasound.   The ultrasound that was done to investigate the “lump” lead to the discovery of two possible schwannomas, one near the ankle as well as a larger one deeper within the peroneal nerve. Soon after the ultrasound, I had an MRI of the lower leg confirming the ultrasound findings.

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?

I was referred to an orthopedic oncologist at Rush University in Chicago for surgical removal of the Schwannomas. Tumor 1 stats: Mass, distal left leg;1.2 x 0.9 x 0.8 cm. Tumor 2 stats: Mass, proximal left leg; 2.3 x 1.4 x 1.2 cm.  Both were removed during the same outpatient surgery. Both confirmed as benign schwannomas  from pathology.  Surgery went very well.   I took it easy for about 5 days then started to resume most activities.  I was back to working from home 2 days post surgery. It is now 3 weeks post surgery and I am still feeling terrific.  I have no ongoing pain and I am sleeping like a baby for the first time in a couple of years. I would consider the surgery very much a success.  It was truly life-changing for the positive for me and I am grateful to my care team. 

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?

Ask about experience with these types of tumors, ask about pathology, post care and recovery expectations. Get a clear understanding of risks.

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)

Yes, I feel I’ve made a positive recovery. I think the location and size of the tumors made the recovery easier than most since they were accessible with minimal invasion or proximity to other organs and I’m in generally very good health overall (outside of these pesky tumor things).

*I did have another rare tumor removed in 2008. I had a confirmed phyllodes tumor (cystosarcoma phyllodes) of the breast. It was also benign and is not thought to be related to the schwannomas.

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. I haven’t tried running yet but I will be starting soon (slowly) and plan to do a sprint triathlon in August with a modest goal of simply crossing the finish line before the clean-up crew completes their work.