new diagnosis L2 schwannomas

[faye]

I am hoping this forum will help me some. Even though I am an RN this is sbout MY body Two years ago i had a bad fall. With the help of some muscle relaxants and pain pills the pain was bearable. It started to get better but then I stsrted developing intermittent numbness . Drs did some MRIs snd EMG and the non-contrast MRI showed some ' nodules ' The pain Dr sent me to a local neurosurgeon who stated 'don't worry they are nothing-lots of people get them and they nevercsuse any problem '. About 6 months ago the numbness increased to my abdomen , down both thighs and to my left foot. I became totally incontinent of urine not only not being able to control it but also could not feel myself urinating. The pain increased to the point moving my left leg at night woke me in tears. I was in pain sitting and laying down Even though standing was the best position that too is unconfortable.I went to the pain Dr who realized the increased weakness - I could not even lift my left foot off the ground when sitting had to give up my 4 speed clutching car of my dreams because I have to lift my left leg with my hands to get it in the car or off the floor. He sent me to a neurologist and after a MRI with contrast they diagnoised the schwannomas saying I have probably had them all my life but the injury brought them alive. A specialist at Tampa General says the 7 mm one shouldcome out. I had a caudal epidural 10 days ago and now the pain is returning. There will be another epidural in 5 days. Has anyone had anything simular? Neuro says 2 days in hospital 2 weeks out of work OK I am scared and concerned but cannot live with the pain and falling

[faye]

I would really appreciate it if someone had input for me. I had my second caudal epidural. And it did nothing. Now I am trying a tens unit to help with the pain

[bowtruckle]

Hi Faye,

Sorry to hear about your diagnosis and pain.

I can't really help - I'm newly diagnosed myself. You should probably post your question in the main forum - more people seem to read that one and provide information (regardless of the tumor type).

If it helps, the first neurosurgeon I saw recommended surgery for the larger two tumors (probably schwannomas) that I have at S1, and said I should wait for the smaller (7mm) tumor at T1. But I am not having the kind of pain or symptoms that you are describing. I was told to expect 5 to 7 days in hospital.

I am going to see specialists at the Mayo Clinic in the first week of April to get their opinion - but I am fully expecting to be told I need surgery.

Definitely find a neurosurgeon who has experience with spinal cord tumors. As your pain and symptoms are quite severe, I would recommend that you get a second opinion as soon as possible. Where is your tumor?

Good Luck & please post on the main forum for more advice.

~ Kirsty

[Lady of Faith]

Faye,

Have you found a neurosurgeon? In my case, my primary care physician referred me to a neurologist and he referred me to my neurosurgeon.

Have you been scheduled for surgery? I apologize I don't know that much about schwananomas. My neurologist prescribes my Neurontin (Gabapentin) which helps with the nerve pain. I have gone from 300 mg per day to 2100 mg per day. It has helped tremendously.

Please post in the general forum. There are more knowledgeable people than I that will answer your questions.

I am sorry you are in so much pain but am glad you found us.

[faye]

Hi everyone well I am almost 3 months post op I highly recommend Dr Smith at Tampa General Hospital His bedside manner is straight forward but glad he was my doc The tumor was actually at L4-5 It had grown from 7 to 8.5 mm since December I had no sensatiin from my waist down didnt know when i needed to urinate and the last 3 weeks preop fell 2 - 5 times a day Surgery and recovery wereabout 9 hours combined But let me tell yiu how exciting it was ti have tge foley catheter taken out and FEEL that I had to pee !!! I have 90 - 98% of the feeling back in my left leg and 70-89% in the rught I can feel touch in my abdomen again and although I cannot always hold my urine I have the sensatiin back so I have a fighting chance to get to the toilet. I would lie if I denied having pain but it is NOT as badas preop and is mistly after a hard day at work or doing sometging I shoulnt.. I do still have some spasms I was back to work 16 days post oo Granted not everyine has the success I have had and life is not perfect but there are so many negative posts I want to let you know there are Good stories

thanks everyone for your support and prayers

[faye]

sorry typing that on my phone with big fingers and little letters

[kansasmom]

I'm glad to hear you are doing so well Faye. Thank you for sharing. Stay strong

[faye]

i am planning to stay in touch being a nurse and now having this experience I realize how easy it is for people to miss judge us. The pain before surgery was nearly unbearable. Like I said I still have pain not nearly as bad, but cannot work and take muscle relaxers or narcotics.. I have found that a TENS unit helps me