|
Post by juliefromca on Jun 30, 2008 3:14:15 GMT -6
Hi, all. I am new here and new to the lingo. According to my doctor, ependymomas are typically benign. Any other info about them I should know?
Also, I have syringomyelia with dystic lesions- any idea what that means. I'm sure you all know how it is- all the questions come to you after you leave the office!
Any info would be appreciated! Thanks!
Julie
|
|
|
Post by Lin Storonsky on Jul 14, 2008 12:37:54 GMT -6
I had a an ependymoma successfully removed from my L5 five years ago without a reoccurance. Much good luck to you. Keep positive.
|
|
|
Post by linny32 on Jul 14, 2008 12:43:47 GMT -6
Forgot to mention it was benign, as they usually are.
|
|
garyw
Full Member
Posts: 34
|
Post by garyw on Jul 18, 2008 16:31:44 GMT -6
I googled "syringomyelia" and "dystic lesions", and the computer asked if I meant "cystic lesions". So maybe you got the word a little bit wrong, and it is referring to cysts sometimes associated with a tumour? I'm not sure, as I am a beginner at this information thing too. If you google those terms, you will get lots of info with lots of big words. But I find I can sift through and generally some things become clearer. Give it a try.
|
|
|
Post by badtazz on Jul 20, 2008 10:43:19 GMT -6
I am new to the group again, I was a member in 2003, then my computer died so I forgot about the site. I have found that if I think of a question I will write it down for my next doctor visit and then ask. I felt stupid the first time I pulled out my little note pad and started asking questions, but my doc said I could ask him anything I thought I needed to know that he hadn't covered. Just a thought.
|
|
tripp
New Member
Posts: 2
|
Post by tripp on Jul 22, 2008 14:39:31 GMT -6
My son, was diagnosed and had surgery on June 9th. His tumor was benign.
We had a consult with the doctor, occupational therapist and case manager to see where he is in the scheme of things. He has been in rehab for almost 2 months. He is slowly progressing and is able to use his right arm somewhat. He was able to move his legs for a while, but is not at this time.
The general consensous is that it will take him about 1 to 1 1/2 years to get to where he is going. He might have to be wheel chair bound. During the meeting yesterday, he broke down and told us that he is actually scared to go home, because of the comfort zone that he has at rehab and the fear of the unknown at home. While it was very emotional for him and us, it was good for him to get it out in the open and not hold back.
He the main financial support for his family, his wife is a stay at home mom, and he feels like he will not be able to be the "support" that he has always been. I told him that even though things will be a lot different, he will still be "support" for his family as he will be there and will be part of their day to day. It sounds "pollyanna" like, but in time I think (I know) that he will adjust.
He has applied for SSI and if all goes well, his finances should be okay. He is slated to go home in about 6 weeks. So in the next couple of weeks, we will have a couple of ramps put around his house, a shower put in the downstairs basement and extend the driveway to the back of the house (paved) which leads to the basement where the family room is. That room was and is the place where he and the family spend most of their time. The fact that he will be able to use it, will be a source of comfort for him.
I am a planner. I write everything down and analyze the end result of what I am trying to accomplish. Once that is done, I put down the steps to get to the result.
I know that the family will be okay, because I have so much faith in God and the direction that he is sending my little family. The wonderful thing about God is that he may not come when you want him, but he is always right on time!
Please keep us in your prayers.
Thanks.
|
|
|
Post by belle838 on Jul 23, 2008 23:36:43 GMT -6
Tumor location: C 3-5 > > Treatment types and dates: Working nurse until Novemeber 1, 2007 > > Total knee replacement November 12,2007 > > Never got better after knee replacement and by December 24,2007 could not > write using right hand. Knee surgeon said don't worry everyone heals at > their own pace. January 3rd 2008 started experincing shortness of > breathe. Dr. sent to neurologist on February 26, 2008. Found tumor on C > 3-5 wrapped around spinal cord. Lapendectaimy on 3-3-08. About 4 weeks > later ITB therapy. Declinging rapidly. > > Tumor Status and Date of Most Recent MRI : no significant change > > Neurological deficits: quadrapledic, no bowel function or kidey no use of > arms or hands > > Current condition: incomplete quadrapledic > > How you've been affected: My mother is the one who has the tumor. It is > beign. She would have died without the surgery to safely remove as much > of the tumor as possible. This has devastated my family. Diagnosed with > needing a knee replacement and had a tumor instead. The doctor > misdiagnosed my mother and she would have died in 3 weeks had she finalaly > received the proper diagnose after 6 months of living hell and the doctor > not doing anything. I am extremely angry and need to know other peoples > experieces. My mom seems like she is just laying there dying. > >
|
|
|
Post by Oscar Medina on Aug 7, 2008 2:57:17 GMT -6
Intramedullary Ependymoma C4-C7. successfully removed by Dr. Ziya Gokazlan from Johns Hopkins in Baltimore, Maryland. Pathological tests were done during the surgery and it was benign. It has not returned after three years. I do MRIs once a year. The tumor was not encapsulated and in spite of that I have all my motor functions intact. The tumor had a cyst attached on top. Ependymomas may be benign, but where they're located makes them very hard to remove. Everybody seems to come out with some loss of sensation. How much motor function you lose will depend a lot on the neurosurgeon and the hospital and the condition of the tumor once they go in and can assess its condition. Also, from what my neurosurgeon advised me, the sooner you have the surgery the better, but I would also advise, don't compromise on who and where you are going to have your surgery to ensure a better outcome. I made absolutely sure they did a laminectomy and a laminoplasty (Do not let them decide on whether to do the laminoplasty or not). I have 10 plates and 20 screws. I requested that and my neurosurgeon did everything possible not to fuse me (fusion). We did speak about it during our consult. I have 75% range of movement in my neck which I'm thrilled about. I have some loss of sensation from my nipples to my feet. I was out of the hospital after two weeks (one week of intensive rehab) and did a year of physical therapy back at Casa Colina in Pomona, California. Beware of the medications you're given before surgery. This is important for a better outcome! Also, beware of the medication you're given after surgery. Don't take any strong pain medication for more than a month if you don't have to to make sure you don't become addicted. There's no way to predict how you're going to come out of the surgery, but if you make the right decisions with the right information in your hands, you will have a better outcome. One very important thing is to make sure they use both MEP and SEP (Motor Evoked Potential and Sensory Evoked Potential). After surgery you will need physical therapy and should speak to a physiotherapist (who should follow your neurosurgeon's directions) and he will guide you as to what kind and what amount of therapy you will need. Make sure that after the physiotherapist sends you to the gym, that it's a neuro gym and that the first person to see you is a doctor of physical therapy. As to their assistants, make sure they've read your file and are acquainted with your condition before they have you do any exercises. Collect all your medical records from the first diagnose of the tumor and all MRI images together with technical reports and take them with you to all your doctor's appointments. My regular doctor wasn't much help after surgery. She did not care much to understand my condition. I used to see neurologists, physiotherapists and neuro psychologists. I have given you as many of the terms as i can remember. Use google and enter the word you don't understand and you should get tons of reading material. Do educate yourself and make sure to get support from loved ones. It does get very difficult after surgery. Any other questions I'll be happy to help! You can see me at www.oscarmedina.com where i tell my story in spanish. Oscar
|
|
|
Post by akmoriarty on Sept 3, 2008 23:32:17 GMT -6
I am new here also. I had a tumor removed from C 3-5 on 8/19/2008, and was told today that it is also ependymoma. And that I have to do yearly MRIs. I have lost feeling in part of my buttocks, and it scares me. I start physical therapy next week. If anyone has any suggestions on recovery, message me.
My doctor was wonderful, I was his 3rd patient to have ependymoma in 23 years. I am in St. Louis, Mo if anyone would like his name and hospital.
I would also love to help anyone who just found out that they have a tumor. I wish I had found this group before surgery, I think it would have helped me a lot!
Anne
|
|
|
Post by tc on Sept 4, 2008 7:54:49 GMT -6
Welcome to the group, Anne. I'm glad you found us. Regarding the "loss of feeling in your buttocks", I have heard this group referred to as "the numb butt club" . . . so you qualify! Not all of us have that, but I hear of it often. As far as rehab, everyone just tells me to "work REALLY hard." I hope that others in this group will respond with more suggestions. I haven't had surgery yet, but I read everything here with great interest for when surgery becomes necessary. Again, welcome! And keep us posted on your progress and continue to ask questions. Teresa
|
|