|
|
Post by bluelove10 on May 17, 2012 15:55:08 GMT -6
So glad to hear you've dodged a bullet for now!! Although it still sounds like pretty scary stuff! Since we spoke last, I had a laparoscopy done to explore why I'm having the abdominal pain episodes (since 1 set of my dr.s don't think it's the tumor). They said it sounded more gynocological. So I had the procedure done, half expecting for them to find endometriosis -and they didn't anything (except some bowel inflammation). I'm following up with my Gastro dr. On Monday. It just sucks because I have these episodes of abdominal pain, lower back pain, fever, etc. every 3-6 weeks and it's starting to take its toll on me. Plus the back and leg pain I have almost everyday. I just wonder if the tumor was causing all of this, would they then want to take it out? If no, I just have to live with being sick every 3 weeks and pain everyday? This all just stinks!  . Sorry-I'm actually having an episode now and am feeling pretty bummed about the whole situation |
|
|
|
Post by Jessica on May 30, 2012 14:43:04 GMT -6
So sorry to hear about the stress of the lesions, plus the abdominal pain. I have had a presacral lesion for a year now (3 MRIs) and the latest thinking is schwannoma, which led me to this forum/thread. I am posting to mention that I have also been diagnosed with Crohn's disease (prior to the lesion) and associated arthritis, which causes abdominal and joint pain. My impression is that there's no connection between the lesion and Crohn's ... maybe some of us are just unlucky ... although in comparison with malignant tumors, not so unlucky, right? Warm wishes - hope all is going better now.
|
|
|
|
Post by Va Doctor on Jun 1, 2012 16:04:29 GMT -6
Hi, Just had my Intradural Sacral Cystic Schannoma removed 2 weeks ago by the Neurosurgeons at Hopkins. It could not have turned out better and not possible to have had a better experience. When it came to my back I went to the best, and i advise you all the same. Best wishes to everyone. Virginia Doctor (not a neurosurgeon)
|
|
|
|
Post by Angie on Aug 23, 2013 16:15:06 GMT -6
In September 2010, I had a Sacral Schwannoma removed. It was the size of a softball. The surgery took about 6 hours, but I was only in the hospital for 3 days. The surgeon was not able to remove the whole tumor, and now I'm beginning to have the same symptoms as before. I have radiating pain starting in my lower back and going down my right leg. My pain is pretty constant, and nights are bad. I'm getting ready to have an MRI to see if the tumor is growing again, I'm just ready for some relief.
|
|
|
|
Post by Kbon on Apr 4, 2018 9:46:43 GMT -6
Hi everyone just wanted to share some important info I learned from going thru a very long year of being sick and in constant pain after having spinal surgery, I had a schwannoma removed from my spine. If you are continuing to have issues please look into being tested for NF2. I had never even heard of this before and thankfully after a year of seeing a million different drs I finally found a good one. Turns out right after surgery I have 2 more schwannomas growing and a hemangioma.all on my spine. Not many drs are familiar with NF2. There is NF1, NF2 & NF3..NF3 is also called schwannomatosis. It is a genetic disorder and can cause many many other issues so please get tested. There is an NF2 specialist in NYC his name is Dr.Kaleb Yohay and he is wonderful.Schwannomas need to be sent to university of Alabama to b tested to see if you have NF2.
|
|
|
|
Post by dragon on Apr 28, 2018 17:23:36 GMT -6
Hi, I am recently diagnosed sacral schwannoma without symptoms. It was an incidental finding from MRIs followed by a biopsy. My neurosurgeon let me decide on the surgery. I read from the literature and this forum that the surgery posts significant side effects (loose bowel and bladder controls) other than surgical risks. Can anyone share the surgical experience?
|
|
|
|
Post by Randyliale on Sept 20, 2019 5:44:47 GMT -6
If you’re upset about your weight and want to lose a little more, get this… An overweight mother with pre-diabetes has just SHOCKED the medical community by losing an unheard of 22lbs pounds in just 13 days… ....Without starving herself, she lost a total of 37lbs in the first month! <a href=http://webbyt.co/weightloss>-> CLICK HERE to see her Transformation Pics!</a> ...Even without exercising, she went on to burn off 84lbs (almost a pound a day) and eliminated any sign of diabetes or any other life-ending diseases. And the amazing thing is… All she did was this D.I.Y. “carb-pairing” trick that reconditions your 3 female weight-loss hormones to drastically accelerate fat-burning while still eating the foods you love. Check it out for yourself… <a href=http://webbyt.co/weightloss>“Carb-Pairing” Melts Away 37 Pounds in Just 20 Days (WOMEN ONLY)</a> Enjoy! |
|
|
|
Post by Lynn on Jul 10, 2021 7:16:37 GMT -6
In September 2010, I had a Sacral Schwannoma removed. It was the size of a softball. The surgery took about 6 hours, but I was only in the hospital for 3 days. The surgeon was not able to remove the whole tumor, and now I'm beginning to have the same symptoms as before. I have radiating pain starting in my lower back and going down my right leg. My pain is pretty constant, and nights are bad. I'm getting ready to have an MRI to see if the tumor is growing again, I'm just ready for some relief. |
|
|
|
Post by Lynn on Jul 10, 2021 7:20:46 GMT -6
Angie. I have sacrum schwannomas among others. I live near Hopkins. Have been seen there. For the past 2.5 years i have had walking weakness. Can only take 15 or so steps hipkins doesn't know why. But there is a mass s3 s4. Live 7s very limited. Who was your NS at hopkins? Im in VA. Been to NS here, many neurologist. No answers.
|
|
. Sorry-I'm actually having an episode now and am feeling pretty bummed about the whole situation