Hello all! This is the fourth installment of our series as we have been asking members of the Schwannoma Survivors Facebook group how long it took for them to recover normal life functions after having had various kinds of Schwannoma surgery (by various we mean Schwannomas that were in different parts of their bodies.) In this blogpost we have asked our friends with Lumbar Spinal Schwannomas this question - how long before they felt better, i.e., could resume normal life functions - and here are their responses. We hope you find them helpful! - Neil
_____________________________________________________________
First Answer:
I had my tumour out at L4/L5 and a nodule above that. Both were schwannomas. They were inderdural extramedulary. My surgery was 9 weeks ago so I'm still recovering. I had back and pain pain for lots of years before they finally did a MRI and found the tumors. I'm on lot less tablets now than before surgery and only get pain when I over do it. My leg pain is better i would say 80% and I do have few other issues with back as well so know that will take longer to heal.
Second Answer:
Oct 2013, L3L4. Still not doing well. Seeing pain management. Nerve pain is a kill joy, people
Third Answer:
One week after surgery I broke out in a bright red "rash" over the entire ribcage on one side, front and back. That same surgeon misdiagnosed it as shingles, and it was only several years later when I was turned down for insurance that I found out it was post thoracic neuritis. While the recovery for the surgery itself probably wasn't too terrible the neuritis was horrible. I returned to work after 6 weeks but it was months later before the almost unbearable pain from the neuritis lessened, and I still feel it in my ribs with every breath. Having been misdiagnosed with and treated for shingles, there were several mis-starts for treatment. Finally as a last resort I tried acupuncture and fortunately it worked immediately for some relief. I strongly suggest to anyone that they keep looking for a surgeon until they find one with specific experience with schwannomas.
Fourth Answer:
I had a 2cm schwannoma at L4-L5 removed 10 months ago. After 10+ years of intermittent sciatica and back pain, my back feels great. Spent 2 nights in the hospital and went back to work part-time after 4 weeks. It took about 3 months before I could bend over comfortably. For 5-6 months, I felt like there was a rock inside my back at the surgical site. Acupuncture was a great help with this. My tumor did not have a nerve running through it as my surgeon had suspected, but it was stuck to the nerve and had to be peeled off. The left side of my leg and foot have been numb since the surgery, along the S1 dermatome. The numbness isn't a big deal, but my foot aches considerably if I stand too long or walk a long distance. It's been very hard to exercise because of this. Taking neurontin now, which has alleviated the occasional shooting nerve pain, but not the discomfort. Follow-up care has been very lacking. My advice is to ask lots of questions, including how often and who you will be seen by in the months after surgery.
Fifth Answer:
I now have my second spinal schwannoma between L3-L4. It is currently 3 mm so they will not remove it. The first one before discovered got as big as a golf ball before found. I got down to 80 pounds and couldn't use me right side of my body (leg and arm).... I had a full recovery with minor symptoms. I now have a list of symptoms again and told the tumor is to small to remove. I am going to try a spinal block next month to hopefully return to normal life. It is so hard feeling like the crap all the time and just trying to be normal.... I appreciate this web page to know I am not alone. I wish I could have surgery now instead of them allowing it to slowly grow, I also battle scoliosis and going ongoing physical therapy to correct this thanks to the schwannomas.
Sixth Answer:
(Schwannoma) 11cm at L2/3. Two surgeries and total resection. I suffer terrible nerve pain and limited movement in left leg. It had grown some into my psoas muscle.
Seventh Answer:
I had 99% of my intradural extramedullary schwanomma removed which was located at my L4-L5 about a year ago. I felt immediate relief after surgery but went back to doing my norm in about six months. I still feel some nerve pain but it's minimal. Other than that I can do almost anything now.
Eighth Answer:
I had my "ancient schwannoma" removed from my L4 vertebrae 6 yrs ago today actually! Took about 30 days to be able to fully get out of bed without vomiting. I still have a pocket of fluid right there that they supposedly can't do anything about. I still to this day have pain and an 8lb lifting restriction. I have nerve damage in my right thigh and also behind left knee from surgery. It wasn't my first and unfortunately not my last schwannoma.
Ninth Answer:
Had a Schwannoma L5/S1 discovered during August 2012. Had surgery and it was removed. Terrible nerve pain and total numbness of left leg. Left leg very weak with several muscles not functioning. 3 Months ago it was discovered after back pain that the Schwannoma has reoccurred. Neuro Surgeon wanted to remove and give up the L5 nerve root. I did some investigation and went to India Bangalore for Cyberknife treatment. Had 5 sessions and a very good examination with full blood, MRI and CT (PET) scans. Stayed for 2 weeks and only came back the day before yesterday. However the results are not immediate and will take time to get smaller. Now for the wait - 6 months to do another MRI. The HCG Oncology center is actually very good in what they do and the dr's very experienced. Will report back in 6 months time.
Tenth Answer:
Having read peoples experiences here I count myself very fortunate. I started pain in my left leg and groin 2 years ago, it was diagnosed as probably sciatica and prescribed low dose cocodamol. Over time pain increased and was bad at night when flat on my back. Eventually my GP sent me for an MRI scan, this revealed a 17mm spinal tumour. The surgeon was surprised that I could still walk as the tumour was crushing lower body nerves. He told me to expect a numb leg after removal of tumour. In December 2014 I spent one week in hospital following laminectomy of L1, L2 and the complete removal of schwannoma. Thankfully the leg has no numbness, there is a small numb area at base of spin on left buttock. After three months I was able to split logs with an axe and the only reminder of the surgery is some back ache from time to time. Life is completely normal now with no symptoms. May be I have been lucky, may be the tumour will return only time will tell.
Eleventh Answer:
I had surgery for my tumor in February of this year. I had a large schwannoma from L4-S1. My neurosurgeon conducted a laminectomy and was only able to do a partial removal of my tumor because of a great risk of paralysis. After surgery, I was feeling much better and was able to do physical therapy and I also completed 5 weeks of radiation therapy for the remaining tumor. I had no side effects from the radiation throughout the treatment. Two weeks after completing radiation I developed severe diarrhea and skin burns to my back that blistered pretty bad. Pain has also returned to my back and is actually worse than before surgery. Nerve pain radiating down my right leg has also returned with a vengeance. I had a follow up MRI last week and discovered that the tumor had eroded the dura on my spinal cord. So, the spinal fluid has pushed the pia and arachnoid out, creating a large cyst that is now putting pressure on the spinal cord and nerve roots. I am not able to work a full day because of the intense pain. I am now awaiting a second surgery to remove the cyst and repair the hole in the dura.
Twelfth Answer:
I was very lucky with my spinal schwannoma-at least so far. I was not having ANY symptons. This was found when I was being diagnosed with breast cancer via a CT scan. I had my surgery on March 31st. The tumor was the size of a large egg. They were in at my waist and did not get it all during the surgery. He cauterized what was there and, it appears from the MRI I had at the first of June, that it killed it. I will have annual MRIs to monitor this.
______________________________________________________
