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Post by mtbboulder on Dec 10, 2010 9:10:02 GMT -6
I was interested in reading this thread to know what people were experiencing when they finally had surgery but it looks like these replies are all addressing AFTER surgery which is scary as it seems most people are having MORE issues than prior to surgery. Can you please clarify. I was diagnosed with a possible hemangioblastoma at C-4 with syrinx, now possibly an Epy per Dr. Jallo and the docs here are conflicted, my NS saying we should do surgery as the symptoms will just progress and the other (Kaiser) NS saying as I have posted before, as I had a "slip" while rock climbing in October, it must be a brachial plexus injury. My pain is in my neck, down my left arm and numbness in my left hand, loss of sensation around the nape of my neck and tops of my feet, and at night and morning the right arm gets involved and hurts to the elbow and goes numb below that. On Dilaudid and Neurontin, my pain is about a 6/10 until the end of the day when it jumps again, to maybe and 8/10 or worse. I do not think it is a brachial plexus injury but am trying to do "therapy" and wait and see for three months. We'll see........
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Post by jtsky7 on Oct 14, 2011 17:49:23 GMT -6
Prior to surgery I would have some shooting pains, stiff necks and sensitivity on right side and muscle atrophy in chest and back. Nothing as severe as after the surgery.
I had hemangioblastoma C2-T2 removed in 1993. Post surgery I was paralyzed from chest down but able to gain most of my body function back. Most of my pain is right side from chest down. I do have severe burning on right arm especially around the elbow and itching through the index finger.
Burning and hypersensitivity from chest to waist. Then again around the knee area.
I also have pretty bad spasticty issue mostly affecting right leg. I have good days and bad. Its usually a 24 hour cycle, but some days it switches and I will have 2 bad days in a row. Rarely 2 good days. Makes if very difficult to sleep when combining with nerve, sensitivity issues. The 1st thing I do when I get home each day is take my pants and shirts off and walk around in shorts to give me some relief.
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Post by HisashiWada on Oct 17, 2011 9:05:08 GMT -6
Hi! @ My pain is at my hip and both whole legs, especially, I feel along a nerve of my thighs' backside, which is a typical sciatica. There is no pain at my body above my surgery level S2[S3. @@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@my@pain scale is 2[8 all the time, however, I can sleep well. I have no spasms of pain. @@ Regretfully, because I walked and drove my car too much after my surgery, my pain became worse. To move my body or walk too much seems to stimulate my pain in my case. I'm using medications like tranquilizer to mitigate my nerve tension of legs, and 50[‚P‚O‚Omg@vitamin B@per day sometimes. They gave me some relife. I'm going to go to the Pain Center and try more vrious medications. Hisashi , from Japan
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Post by dadof2 on Jan 6, 2012 3:18:28 GMT -6
My pain mostly on my chest. I was diagnosed with a cavernous hemanioma at T1 a year ago. The skin on my chest on the right side feels like it is melting off my body. I have very little feeling on my right shoulder blade. On bad days my right forearm burns like my chest and when I move my head forward or back it feels like it is made of stone and I get shooting pains down my spine and some times up over my head to the backs of my eyes. Most of the time the pain is around a 2 and bad times around an 8.
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Post by sikorskig on Apr 17, 2012 18:00:50 GMT -6
I have mild pain and discomfort 24/7 from my right side love handles to my bellly button over my right abdomen. My doctors and I are thinking it could be a DERMATOME condition possibly post cyberknife treatment. Anybody know anything about DERMATOME issues??
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Post by rdejme on Jun 3, 2012 21:16:43 GMT -6
Does anyone experience vertigo? My husband had an intramedullary ependymoma resected in 2001. His balance is terrible and he has vertigo. He has discomfort, but takes naproxen. Tramadol was very effective, but he was a tugboat captain, and could not take those kinds of meds when he was working. He is now 65 and on disability. I just see him deteriorating before my eyes. He has been numb from the chest down since the surgery.
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Post by peaceandlove on Dec 11, 2012 5:44:42 GMT -6
Hy When it is a SCT the apin is 24 Hr.Certain position will increase the pain.Why??Because when you fold your body while sitting for example, the nerves will compress on tumor and will generate pain.The pain of tumor is like no other pain.It is catastrophic.It is 10 of 10 in pic time.It is a feeling of broken bones in hips heavy legs tingling even electricity in toes some time...Lower back like a bag of 100kg is resting on my lower back...I bielieve that we are starting hell before we die.There is no medication.Nothing will help.No drugs.Physiotherapies are all usless.Untill resection with no nerve damage nothing will help. My only self experience is when i fold and cross my legs under me when wtching tv, this will help to reduce pain,only little not much.I bielive since the nerves stretching will reduce little the tumore compression.I hope this will help some one. Thanks
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Post by teacherjohn on Mar 5, 2013 17:12:05 GMT -6
I have just been in formed I have cancer in my vertebrae, the horrendous pain is like an electric shock stabbing across my lumber region so much so I can not now stand up with out horrendous pain across my back and sometime if I stand wrong in my grown area.
Us there any advise you can give for pain control, tomorrow I go back to see the specialist to see what my choices are medically
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