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Post by Lisa on Apr 28, 2011 11:24:34 GMT -6
I am so grateful to find that I have most likely a Schwannoma tumor rather than another Spinal cord tumor type. They read many MRI's and 3 or 4 doctors came up with the same conclusion. I am in a wait and see mode. I will get another MRI in 6 months. I have a cane, some numbness, pain and an unsteady gait. I have headaches on occasion and numbness in feet, hands, arms when I sit too long in once place at the computer or recliner sewing. I find that heat or an ice block in plastic wrapped with a towel soothes my symptoms. I am taking anti depressants and also pain meds now. They do help. I was referred to physical therapy which I will start next Monday. I have a woman this time who I hope will have empathy for a middle aged lady ( I am 48). LOL Take care everyone!!! I pray for those on this site. Be encouraged and have hope. I am determined to enjoy life. lisa
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Post by Bhagwan Bharwani on May 1, 2011 11:59:29 GMT -6
Dear Erika Nikole,
My mother was diagnosed last week with Schwannoma on the outer spine L5/L6. Her symptoms are lower back extreme pain, unable to sleep due to pain occurring while she is resting. Also frequent shooting pain to our left leg all the way to her knee. She is now feeling numbness in her left leg which is making her hard to walk as she finds that she is unable to lift her left leg properly while taking a step thus dragging her feet through the floor. We visited a few doctors who diagnosed here with schwannoma. We are very much confused as the doctor explained to us in detail that he had to cut into her spine to get into the schwannoma which is attached to one or more nerves. Our worry is that that if this growth is malignant or not. The doctors say only way to find out is during the sergery after sampling.
Erika, my question to you is that we are not sure if this pain and uncomfortable feeling is due to this schwannoma or something else. Our doctor also told us that there is no guarantee if this pain will be relieved or not as it could well be due to other issues. Although he is quite sure that her symtoms are due to schwannoma compressing on her spine. Please confirm if these symptoms are similar to what you felt.
2nd question, our doctors advised us to have a 5 hour sergery. This sergery we have been told required some of the spine bone be cut to get into the nerve to which the schwannoma is attached. This seems to be a major surgery and we have been sick worried as none of our friends or relatives have even heard of something like this. Also, the doctors have advised us that he will try his very best to save as much of the nerve as he says he might have to take away bits and portions of the nerves which again he needs to decide during the surgery. Erika please confirm all this and what sort of nerve paralysis you felt post surgery. Please explain how long was your incision on your back and how long did it take to heal before you could walk normally. We hear that the post surgery pain is quite tormenting. What were any other symptoms you may have felt or occurred post surgery.
We would be highly obliged if you can provide any contact numbers so we may contact you to discuss in depth what you have experienced. Our entire family is sick worried and the thought of this surgery is fearing us even more. We would be very much relieved if we could hear from you first hand how to prepare ourselves for the surgery and what to expact post surgery. My mother is planning to have this surgery in the next coming week.
I am glad to know of this link where sharing of this information can be very helpful for anyone undergoing same issues.
Sincerely
Bhagwan
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Post by ErikaNikole on May 1, 2011 15:39:16 GMT -6
wow where to start.... well welcome to the group, first of all. everything you have been told is the same thing that all of us have heard one time or another. My symptoms sound very similar to what you have described. The doctors cannot tell what kind of tumor it is until it is out, but an experienced neurosurgeon (NS) will have a good idea before they get in there. statistically speaking, if there is not cancer in other parts of the body then usually the Spinal Cord Tumor (SCT) not cancer, at least what we think of cancer when speaking of the word. my pre-surgery pain sounds very similar to what your mother is describing. i complained primarily of sciatica pain, and i am only 33 so something was definitely wrong. my NS said they same thing about trying to save the nerve and all that.... everything you are hearing is normal. ask the NS if he is putting the bones that he cuts off the vertebrae back in. my incision is about 10" long. i had no staples, or stitches. they actually glued me back together my surgery was 7hrs long, although it seemed like a blink of an eye to me. the pain post-op was.... different. i was in extreme pain, and i was very scared for a while when i could not feel or wiggle my toes; they eventually "woke up" though. i laid flat for 24hrs then they would raise me 10% every 2 hours, until i complained of a headache. then they made me go back to laying flat and working my way back up, because they said headaches are a sign of spinal leaks. so if our mom complains of a headache make sure you tell someone, and if it does happen. try to have her drink a coke (if allowed) that's what they gave me and it seemed to help. getting up out of bed is going to hurt.... everything is going to hurt for a while. as for walking "normal", i don't. i walked with a walker for about 2 weeks then started getting around on my own after that. some one is going to have to be with her pretty much full time for about 2 weeks (this is just an est of course). i would ask about rehab therapy for her while she is still in the hospital if it is not already been discussed. this was the single best thing i did, and wished i had done it sooner. get a raised toilet seat for her, she will prob get a walker at the hospital. be ready for some psychological effects also depending on how active she is. it is hard depending on others for everything, and this is a major event. it changes people. hope this has helped and not scared you too much. remember this is just my advise. i am not a doctor and everyone's situations are different. if you have questions feel free to ask, but make sure you ask your doctor all these questions also. here is my email:[glow=red,2,300]SugarsRevenge@ aim.com[/glow] it is sent to my phone so i will get your email right away and don't hesitate to contact me. good luck my thoughts are with you.
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Post by seescott0913 on May 16, 2011 22:47:32 GMT -6
Hi all,
I am brand new to the site here and I am encouraged that I am not the only one here who has undergone surgery/treatment/recovery from a Schwannoma resection.
My story:
I discover what turned out to be a radial sensation in the front of my left thigh. After several consultations from my neurologist, he found i had an L5 Schwannoma and he recommended a neurosurgeon who was not necessarily eager or quick to operate. Long story short, once he got in my back to look at it, it was in such close proximity to my Vena Cava that as they tried to pull it up to cut it out, I bled and bled. 2 liters later, and they had to make a tough decision. Because they couldn't remove it outright, and because cutting it away meant it could cause damage to the vein, he decided to cauterize the tumor and he had to completely sever the L5 nerve.
IT all happened in 2010 (April), and I have spent he past year recovering. I have lost my ability to dorsiflex in that foot, and unfortunately an e-stim did not help with the drop-foot.
So, that is my ball of sunshine. If anyone has any solutions or suggestions, I am welcome to hearing them! I do wear a 'Walk On' orthotics brace that helps from day to day.
Thanks for Listening. Mods - if I have put this in the wrong forum please let me know or move it, if you don't mind.
Chris
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Post by rick81 on Jun 2, 2011 19:57:13 GMT -6
Hi I'm glad I found this board. I was recently diagnosed with a giant schwannoma at t3-t5 eroding the veterbrae and invading the 4th and 5th posterior ribs. It was initially first thought by the doctors that I had lung cancer that had spread to my spine. I was told a benign schwannoma was as fortunate a diagnosis possible considering the siZe of my tumor. Obviously I'm more than happy that I don't have cancer but I am scared stiff for my coming operation next week. I'm only 29 and I did not see rib removal and fusion as part of my future. Not to mention possible neurological problems. I hope I can be as strong as everyone on this board! I don't wanna be on pain pills my whole life:(
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Post by hisernr on Jun 4, 2011 19:38:54 GMT -6
01/02/12 Update: I'm doing great and wanted to expand on my earlier entry. My large tumor was in the C2-C3 area and my symptoms were intermittent numbness in my left foremost fingers, difficult to type, my left leg was difficult to completely lift, e.g., stumbling up stairs, uneven ground, curbs, etc. Because the symptoms were intermittent, I explained them off by "being tired", "not paying attention to walking", "getting old", etc. Also bladder control or lack of, was a big eye opener to the Neurologist, who "knew" the problem was not in my lower back but in the middle or neck area. I've always had lower back problems but never any neck issues. He immediately ordered an MRI of the upper areas and sure enough that's when the huge tumor was found. He immediately admitted me to ER, because TIME is of the ESSENCE....the more compression damage done to the spinal cord can be IRREVERSIBLE! Several docs were shocked that I was walking because my spinal cord was "as flat as a pancake"....6 hr surgery by TOP NEUROSURGEON at Cedar Senai resulted in ZERO side effects. I requested a 2nd opinion from my small local hospital to the best in Los Angeles, who agreed and accepted my Healthnet HMO insurance, I think because they rarely get the opportunity to do these types of surgeries and love to get the experience. He had done 250 of these types of surgeries versus the 25 the local neurosurgeon had done; imagine how things could have ended up differently. The tumor was next to my spinal cord plus a major artery supplying blood to my brain, so 1/3 of the tumor was left because the risk was too high. I get MRIs every 6 mos to ensure it doesn't grow back too quickly and cause problems again. Typically they're slow growing and could have been there for as long as 30 years. So much to be thankful for this past year. ;D I recently had a 3.5 cm schwannoma removed from the top pf my spinal canal. Symptoms had been progressively getting worse to where they couldn't be ignored any longer. My GP referred me to a neurologist who immediately ordered an MRI of my neck and back and then admitted me to ER. I did request a 2nd opinion from Cedars Sinai, in which I had surgery from a top specialist and was home 5 days later and am doing fantastic, no side effects, only the incision on the back of my neck. i did undergo 3 sessions of radiation to hopefully discourage it from growing back. My half sister (on my Mother's side) had an acoustic neuroma 30 yrs ago, even both both are somewhat rare. I live in Calif, if you have any questions, let me know.
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Post by rick81 on Jun 15, 2011 11:43:20 GMT -6
Im one week post surgery. It was a success and fusion was not neccesary. It was 100 percent removed;) My ribs are killing me however. Now its one day at a time the doctors expect a full recovery! Im so happy to hear that your surgery was a success and that u have no side effects! Must be great living down in california, im in montreal!
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Post by koalat1 on Jun 19, 2011 6:52:46 GMT -6
Just found you guys! I have not read all the threads - just most recent. I had surgery for intradural schwannomas with partial L5 laminectomy in December 2006. Removal was incomplete at the base of the spinal cord due to fear of diminished function/nerve damage. I had what I would consider total recovery, but in the past few months have experienced some of my original pre-op symptoms - bladder control weakness, numb regions on my butt and perineal areas. Frustrating. Don't think that I will opt for surgery again as I know that total removal will not be an option. Just glad to find the site and know that there are many stories out there, with less successful outcome than mine. I am happy to say that I never experienced any pain with the tumors (except the post-operative pain!) and only have the numbness to deal with at this time.
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Post by millelacskay on Jun 20, 2011 9:30:30 GMT -6
Your situation sounds a lot like mine koalat1 - subtotal resection of schwannoma at L5-S1. Are your MRIs showing any growth of the tumor? My NS suggested at my last appointment that radiation would be an option but when I emailed Dr. Jallo he said it was not recommended. Curious to know what your NS is saying. Glad you found us! Kay
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Post by twicebaked on Jun 24, 2011 4:31:14 GMT -6
I am 3 months post op. my sct was removed from my T-9 in a 3 hour surgery. unfortunatly i have a second one down low by my tail bone. Now, i am experiencing pain in my lower buttocks. My MRI from 2 weeks ago is having my NS leaning towards that being the reason for the pain. So, we have scheduled a L5-S1 nerve block (cortisone shot) for 2 weeks from now. Hopefully this will do the trick. Thank You
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