L1-S2 nerve sheath tumors

[03244mom]

I was wondering if anyone else has had nerve sheath tumors in these same areas as myself, L1-S2. I have a large (3 cm) on my S2 and have had several MRIs to check on the size, but no one that I have spoken to has wanted to do any type of biopsies or surgery. I have seen several types of specialists and no one has done anything but give me pills for pain. I am seeing a Neuro-Oncologist at the moment, but I think I am going to make an appt. to see a Neurosurgeon. I have 2 children and taking these pain pills make it difficult. I need to be awake and coherent, especially for the 4 year-old. The 11 year-old is pretty good on her own if I need to take a nap. I think after I write this message I am going to call MGH and try to get in to see a NeuroSurgeon...ASAP. The pins-n-needles, creepies and other pain that I don't wish on my worst enemy is getting to the point of just curling up in a ball and crying until someone listens.

[millelacskay]

I have a schwannoma at L5-S1 about half the size of yours which was partially resected in February, 2011. They also did not want to do anything with mine (because of being in the middle of the cauda equina) but it was growing and I started having bowel and bladder problems along with the pain and tingling in my back and leg so they said it had to come out. Unfortunately the nerves were enmeshed in the tumor so he could not remove the shell. That is now filled with spinal fluid so the tumor is the same size as before the operation but does not appear to be growing anymore. Sounds to me like you definitely need to make an appointment with a neurosurgeon who can explain all the risks involved in both having the operation, and not having the operation. Good luck and keep us posted.

[crazycanuck]

Sorry you're going through this. Mine was a bit lower down (L3-L5 - cauda equina also) but large like yours (4cm). MRI diagnosis was nerve sheath tumor but biospy showed it to be meningioma. When the accompanying film came to the NS's office for booking, he saw me right away, between surgeries, for a consult.

Like you, I lived with terrible pain for quite a while, and like you I am a mom of two, and know how hard it is to be present for your kids when you feel so awful.

For me, surgery was life-changing. My surgeon opted to remove some nerves to remove the tumor entirely, and my body has done a good job compensating. I am swimming, back at spin class, and hope to start running again soon. Most importantly, I am pain free and on no meds. In fact, much of my pain was caused by the tumor pressing on healthy nerves, when I woke up from surgery I could tell that my nerve pain was gone, it was heaven (surgical and muscle pain are not fun either, but I knew I could recover from those).

Of course the surgery itself has risks, so you need to find a NS that you can trust, and work with him/her to make the best plan for yourself.

[03244mom]

Thanks for all the great advice ladies. I have made a call into a neurosurgeon, so hopefully I can get in soon. My primary just prescribed Lyrica to me today, we'll see how that works. I am also in the works of finding another (this will be my 4th) Pain Specialist. So, until then I sit here with my leg elivated, icing it every couple hours and taking my already prescribed pills as stated on the bottle. The past 2 years have just been a roller coaster and I just want some type of closure or someone to tell me something that someone else has missed. I will keep this updated as things happen. It's nice to know that I am not the only one going through this and that there are ways to cure it. Thanks again.

[03244mom]

I am quite happy...I received a phone call this morning, I finally got an appt. with a Neuro Surgeon. It's not until the end of July, but it's a start. I am hoping that he can answer my questions and guide me in the right direction. I am keeping my fingers crossed that talking to this doctor will give me some light into my future with this medical issue.

[Lisaathome]

Hello, I was diagnosed with a nerve sheath tumor Schwannoma from 5 MRI's that were done 1/2011 and 4/2011. It is in L-1 and about 6-7 MM. I have alot of pain and they are taking a wait and see approach. I have been given hydrocodone for pain and the doctors have increased the amout to 5/3.75 and also now prescribed Lyrica for the chronic pain. I also was diagnosed with degenerative disc disease and osteo arthritis from L1 down to L5. I had a lamictomy/laminotomy in 2008 for a massive ruptured disc at L-5. I have weakness, terrible muscle cramps and aches in my legs, pins and needles in my legs, feet and arms with numbing. I have increasing loss of bladder control. I walk with a noticeable limp and now use a cane. I am a caregiver mom of a disabled adult son as a single parent and I know what you mean about taking the pain meds and finding them making thinking fuzzy. I have become used to them now (increasing tolerance?) and my thinking is clear. I am not sure that is a good thing. I had been taking tylenol extra strenght but my MD said that was too much. I sit on ice blocks on my lower back at night, wrapped in a towel. I use a heat massaging pad on my back as well and elevate my legs. My legs ache at night. I elevate my feet. I am hoping the LYRICA will help. I have also started acupunture recently and go to session #2 today. I have started seeing a counselor for support for depression and anxiety. I am only 48 years old and the thought of living with all this pain is discouraging to me but I keep on going for my son. Am hoping to find relief with the lyrica and acupuncture AND to have surgery to remove the tumor eventually. Anyone here tried acutuncture and or lyrica?

[03244mom]

Greetings to all....sorry I haven't answered in a while. I got a new laptop and lost the website. But, I'm back. I have some update news as well, I went to go see the 2nd NeuroSurgeon @ Mass. General Hospital in Boston, MA and he is willing to operate to remove all 3 of my nerve sheath tumors. The only thing that sucks these days is that I had to revisit my Orthopaedic doctor to get a reply as well that surgery will do me good. But, it's been almost a month and no word of when surgery is going to be. I have 2 kids with busy schedules so I would like to know soon. My husband needs to take the time off from work and all that. I was told that after the surgery that I will be spending at least a week in the hospital recuperating and then go home to get better and most likely see a PT. So, for now I continue to take my meds and ice my leg as much as possible. I have to apply the ice directly to my skin for it to work. My pain specialist has me on Nortriptyline and Lyrica to help with the "creepies" and I also take Valium and Percocet during the day. I am excited about getting surgery and I hope and pray that the week in the hospital after the surgery is the week of the most pain...since they can give me meds directly in an IV. So, when I find out when my surgery is, I will repost. So, until then...stay well and stay strong.

[kansasmom]

I'm not familiar with the term nerve sheath tumor. Does that just mean that they don't know what type you have until they go in there?

My 15 yr old son, C, ended up at the ER at the end of April after growing back, hip, and below knee pain, altered gait, and then affected bladder, misbalance, and saddle sensation loss. It turns out he had an L1 - L4 myxopapillary ependymoma.

I knew nothing about spinal cord tumors. It was clear that his pain was becoming unbearable and he was rapidly losing abilities so we opted for next day surgery, at the local children's hospital where he was admitted. His neurosurgeon is a very experienced pediatric neurosurgeon, but this was his first spinal cord tumor op.

C's surgery lasted over 5 hours and was very difficult as the tumor had a large blood supply. Most of the tumor was removed, but some was attached to the nerves and had to be left. Subsequently his tumor was shown to still be growing - it seems to have been unusually aggressive - and he is now having radiotherapy (almost done).

C did come out of surgery with some deficit - loss of feeling in his left foot and foot drop. His pain, however, was very well controlled and he was off the IV meds within a few days. Since his surgery his pain level has been better than before and controlled with a reasonable quantity of over-the-counter meds most days. The radiotherapy increased his pain initially, but now it is better than ever. He gets about with a combination of a walker and a wheelchair and he is doing PT.

My heart goes out to everyone dealing with SCT. Dr Jallo, a nationally recognized SCT surgeon, reviewed my son's case and he recommended radiotherapy rather than more surgery after he spoke to my son's neurosurgeon. It was not thought that the whole tumor could be removed in my son's case, though many here report full removal and few problems with regrowth.

Going to an expert gives you the best chance. However, I would encourage you to try and get some help in place in the event that your recovery takes longer than you'd like. One of my friends organized a meal train, which was a really welcome help. Also, ask the docs what type of deficits are most likely and try to prepare for them in a practical sense if you can. We moved my son's bedroom to the 1st floor. I needed several friends to help with this. Husbands have their hands full keeping things running, working with kids, and trying to get back to work ASAP. Don't be afraid to tell friends and family members, even if they are distant, what you need them to do for you.

[Todd]

have you spoken to your NS about what the surgery will most likely be like? do they expect to have to remove the nerve as well?

[anniemotherof3]

My daughter who is now 17 years old, was experiencing pain in her right buttock and numbness in her right leg. This went on for about 6 or more months, and she constantly cried and woke me up at night. We tried over the counter meds, heating pads and I even tried messaging it but nothing helped. Finally I took her to an pediatric orthopedic doctor who did an MRI on her pelvis and lower back. Turn out she has a small peripheral nerve sheath tumor on the right L5-S1 disc. Now I am scared and nervous. The orthopedist called and told me to schedule an appointment with a neurosurgeon and we have an appointment for tomorrow.