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Post by randynohappy on Mar 22, 2016 20:31:48 GMT -6
Had surgery Apr 2015 for intramedullary ependymoma at T9-T11. Preoperative symptoms were numbness in right leg with occasional spasms. Post operative, was numbness in lower back, groin and right leg. After about 2 months, I got worse. Spasms in both legs. Nerve pain and constriction in both legs. Pain in middle back. Dr says that is normal but I've seen no stories here in which initially one is improved and then gets worse. Anyone else have this experience?
I'm on neurontin for nerve pain and use Extra Strength Tylenol for back pain. Both are largely ineffective and Dr won't give me anything stronger for back pain. My quality of life is for crap. I can barely get through the day just feeding myself and taking care of the house. I'm in too much pain to do things I enjoy like biking and SUP. Do these Drs not realize how debilitating these pains are? It is so frustrating to not get better post operative support once surgeon has done his job.
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Post by dawn on Mar 24, 2016 6:19:38 GMT -6
Sounds like you have had a challenging year. I am only 14 weeks post op. I do have nerve pain and constriction. I also have pain around the incision. I am using Lyrica, Tylenol and Baclofen. Baclofen may help with the constriction and spasms. I also use a compounded cream that I apply topically to nerve pain as needed. It is a combination of Ketamine 5%/Lidocaine 5%/Elavil 2%. I find it very effective.
Surgeons are often not responsive to follow up pain regimen because they feel their job is done. Try working with your primary doctor or a pain clinic for any prescriptions. Sometimes we have to mention ideas for them and if the ideas are not narcotics they are often willing to give the med a trial.
Also, find a physical therapist that is creative in working with these symptoms. Get out of the medical world and explore. I have found that cranio- sacral therapy is immensely helpful in controlling my symptoms. Something else may work for you. Be curious and relentless in your search. Once you find relief life will look and feel better. We are all in this together. I wish you all the best.
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Post by randynohappy on Mar 24, 2016 19:03:20 GMT -6
Dawn,
Thanks for your reply. I'm not down on my surgeon. He did a great job in removing 100% of the tumor and I know his job is done. I've been working with a neurologist as I felt he may know more than my GP when it comes to neuro issues. Apparently that isn't the case. What did you have? What concerns me is that I had no back pain or nerve pain for the first 2 months. I had neurontin for nerve pain and valium for spasms for the first 30 days. Maybe the pain was always masked by those meds until they wore off? So now I'm taking neurontin again for nerve pain. Baclofen for the spasms. ES Tylenol for the pain...which does nothing. Why are the Drs against the limited use of narcotic pain relievers? I'd like to get through just one whole day without pain.
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PGC
New Member
April 28th, 2015, surgery for excision of schwannoma intraductal tumor t10-t12.
Posts: 3
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Post by PGC on Mar 24, 2016 20:53:46 GMT -6
Hey Randy,
Sorry to hear about your struggles. I had similar surgery in April 2015. I made great progress for months and months, even ran 5K back around Thanskgiving. After stopping PT, I fell while running and have been experiencing a good bit of back sliding with pain, nerve sensations, continued leg spasms, balance issues and some digestive slowness. I have sought out multiple alternative modes of help including yoga, accupuncture, massage and meditation. I think people don't realize how difficult these spinal issues can be both physically and mentally. I recommend looking into some supplemental support systems like those I listed above.
PGC
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Post by randynohappy on Mar 31, 2016 15:54:45 GMT -6
What I was trying to get my surgeon to tell me but could not get a straight answer is:
IS the nerve pain a result of nerves that were damaged by the tumor in my spinal cord and it takes time to regrow? Or,
Is the nerve pain a result of something still impinging on my spine?
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Post by nelly81 on Apr 18, 2016 10:41:12 GMT -6
I had surgery to remove a large schwannoma at L1/2 in August. The instant I woke up from surgery my pain was gone. It was incredible. I did (and still do) have some numb patches, but other than that I felt totally "cured".
In the last 6-8 weeks I've been getting (fairly mild) pain intermittently in my lower back and hips again. Plus pins and needles in my feet. I'm trying to figure out if this is from nerves coming back to life after the trauma of surgery, or if I need to contact my ns and arrange another MRI
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Post by mateo on Apr 18, 2016 11:22:00 GMT -6
Hi Nelly81,
I think the symptoms you are describing in your feet are paresthesia. This is something that I have been dealing with since my surgery. Its an abnormal feeling of the feet feeling like they are asleep and numb. I have feel in both feet but there is still a dullness I encounter under the skin. Its tough to describe to people, you kind of have to experience it to have a better understanding. I was told it would get better with time and it has but I likely will have to deal with some of this long term. The pins and needles has gotten much better for me and im sure in time you will too.
Mateo
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Post by peaceandlove on Apr 19, 2016 7:59:55 GMT -6
Dear Randy,
Please try to overcome your pain. Don't surrender. I know the difficulty of dealing with this pain. But you have to adapt with it. This pain may be reduced if it come as result of surgery. What is the scientific explanation of this pain? During the surgery, the surgeon have scratched or touch in a rude or smooth way, a sensory nerve. as a result pain will appear. Usually, nerve don't heal if the pain stay more than 3 month, and they call it chronic. Wait this 3 month and see. If no result, you should move to electrical stimulation for nerve pain, since the pain is wrong electrical signal which run in the nerves due to surgery and there is medicine can help called Cymbalta, it regulate the electricity of the body. You have multiple choice for nerve pain as follow check online, youtube :
Calmare therapy, Quell, Actipatch, ....Magnetic bracelet...TENS, even there is surgeries which they do in the brain at the area were you body recognize the pain which they implant a device with buttery to blind the pain......
Please try to inform us back if any of these technologies works for you that if one day you try it, but even I which you get well soon and don't have to try it.
Please report back as we do, your experience may be helping and inspiring and hope for others...
Peace and love.... Good day
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rk
New Member
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Post by rk on Apr 25, 2016 12:56:44 GMT -6
Randy, know that you are not alone. My mom recently underwent surgery for an intramedullary tumor (ependymoma) at the C3 level. Her progress has been good. Surgery was about 5 weeks ago. Her progress has been good, but she has recently experienced spasms/constriction which are extremely painful. Some days are good and other days are unbearable. It seems that for her, finding the right combination of medication (flexeril, baclofen, neurontin,and painkillers), mental relaxation, massage, and physical activity is the key. That combination seems to be elusive at the moment, but those techniques seem to be having the most impact. She has been most surprised how much her emotional state has impacted these symptoms. Hope you find the right solution.
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Post by funnywalk on May 23, 2016 6:48:08 GMT -6
dear Randy, there is no getting away from it - neuropathy sucks. It is difficult enough to describe to doctors exactly how it feels, but my anger is at the pharmaceutical industry which has not done any research into meds specifically for nerve pain. All the tablets we are prescribed [and yes, yours are ones I have taken too, and they don't have much effect] were designed for other conditions and accidentally discovered to have good effects on neuropathy. Sometimes. None of mine work, Tramadol takes the edge off the pain and I am on Sativex [cannabis oil extract] which also has a small but good effect. Without those two, my pain would be at level 9 out of ten. With them, it goes down to 7 and sometimes 6. I am currently investigating the Calmare Scrambler as it is supposed to work specifically on nerve pain. The fact is, that we are all soldiering on here, trying to live our lives as we did before. This site helps me remember that there are lots of us out there. Blessings, FW
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