Surgery in T6-T8

[guest]

I had surgery on December 14 to have a ependymoma removed from my t6-t8. I woke up and have been paralyzed from the waist down. I have some movement in my right leg, but nothing in my left. Just looking for any similar experiences, rehab info or any info you might have. The only answer I get from doctors is "I don't know." I didn't ask enough questions prior to surgery. This was the "remote" possibility. I would love to hear positive or negative responses. I am currently rehabing at the the Shepherd Center.

[Penelope]

Hi Rob! Your situation sounds very similar to mine.I had a tumor at T6 that had almost closed up my whole spinal cord. I went straight to emergency surgery after the MRI so had had no clue what I was in for and asked no questions. The surgeon never even talked to me before the surgery.I was totally without feeling and couldn't move from T6 down. I lived at the rehad hospital for 3 months and gave 100% to learning to walk again. I was told I would so I never thought any different.It has been 2 years now and I can walk but not very well and in so much pain. Please do everything you can-research,questions,ect. to get the help you need to end up better than me.I did fight very hard to get where I am but surely with stem cell research there has got to be a cure.Keep giving all you have got to get your muscles back for now until more help comes your way.Please feel free to write my back-I want to keep up with your progress. Stay postive! Penelope

[chayo]

Hi! A year and a half ago I had surgery to resect an ependymoma from T9-T12. My neurosurgeon did a great job of explaining everything that could happen -- but, like everything that has to do with the spinal cord, he couldn't give me any specifics, but wanted to make sure I had as much information as he could possibly give. Even then, however, waking up to my new reality was very difficult. Namely, my left leg was fine motor-wise, but didn't "feel right" -- tight feeling, can't feel cold/hot sensations. My right leg didn't move for more than a month, then slowly started working. It's weak, and spazzy, but it's come a long way and continues to improve. It's a year and a half post-surgery. I work full-time. I thought I'd hate my wheelchair, but it allows me to go out and about in the world. My husband and I have tried to make sure to continue doing as many of the things we used to do -- it sometimes takes more planning, but it's great to feel a part of things, a part of the world. I walk with a walker at work and at home. My therapists have tried to ween me away from the walker and towards a quad cane, but the walker is like a security blanket. I'm working hard to go to a quad cane for longer periods, but the truth is...I will have to use my wheelchair for long hauls. 90% of the time, I feel emotionally okay. But there are still those 10% of times when it hits me -- when I think to myself, "What the heck happened?" My advice: (1) Allow yourself those moments of sadness, and then use them to gain strength and resolve to move forward. (2) Embrace small improvements. Sometimes I get frustrated with how slow improvements come, but then my therapists and my husband remind me that, a year and a half out, improvements are still coming, and that's good. (3) Give yourself time to find a new "normal". My life will not be like it was pre-tumor, but it's still a good life. I'm still very thankful for the things I still have. Good luck to you. You are in my thoughts.

[Todd]

you folks should post in the general forum, that's where most of the posts happen. these are great stories.

Docs don't offer much advice about healing because they don't know how the spinal cord heals. they just know it takes a long time. you count recovery in months and years instead of the weeks and days.

coming away paralyzed is unfortunate and, in my opinion, demonstrates how inexperienced a doc can be. my NS told me prior to surgery that I would be hooked up to nerve monitoring machines and that if those machines indicated that they were getting too close to paralyzing me, they would stop and go with a debulking plan rather than a removal plan.
my NS was very concerned about my post op experience and not just with getting the tumor out. I am numb on the left side of my body from the chest down and even this disturbed him greatly. he told me the machines never indicated that they were injuring me that severely.

anyhow, keep on keeping on, and I hope you get much better.

todd

[Geoff Davies]

Well, same thing happened to me. I was not well informed of the risks involved in this type of surgery. I was told the risks of paralasis would be 3% but don't worry, its never happened before. We base your outcome on how you are before surgery and because you are a healthy guy and you are still walking and working fulltime, you will be the same as you are now but we will stop the progression of nerve damage, and we will get rid of your back pain. I woke up paralyzed from the waist down. I do not have bladder or bowel function, I have no sensory, however i do have some muscle strength. I can stand for short periods, and shyffle with a walker for about 5 minutes. It will be a year in October. I spent 3 months in rehab, where i was only given 1 hour per day. I begged for more to no avail. I was discharged back to my home town where the hospital is only equipped with parallel bars. I was given 2 hours a week, then they decided I was not showing enough change, and they did not expect any more change so they stopped my treatments. My insurance company Great West Life is also denying me physio of any kind. I live with major pain everyday, and the medications do not help. I was just recently diagnosed with a syrinx now in my cord, and was told they will do another mri in a year to make sure it hasn't gotten bigger. My income is now less than half of what it was when I was working, I live in a wheelchair, but do everything I can to recover, but have recieved absolutely nothing from the medical field or my insurance company. I now live below poverty and have lost my ability to function because a surgeon played god in the operating room. Although they lost my seps and meps during the surgery he still continued to remove the whole ependymoma. After surgery he told my wife he thought it was a equipment mal-function, but not to worry, I would be fine. I would have weak legs for a few days then I could go home. When i woke up paralyzed the surgeon did not come to see me until the third day, after several calls from my wife, and no answers as to what was happening to me from anyone on the spinal care ward. I have since been ignored by the surgeon, and my gp does not know how to treat me. I have been waiting months to see another neurosurgeon to help explain what is going on. Its been a nightmare so far and if I could turn back time, I never would have had the surgery. They make you think that ypu will be great after surgery, he told me I would be in hospital for 4 days, recovery 4 weeks then I would be back at work. Now that I am paralyzed I have been written off, being told they don't know how much recover I will have, living in limbo, and trying to figure out what to do for my future. I can't live on what my disability pays me, so I am desperate to work, but I cannot sit in my wheelchair for any length of time because of the severe pain. I was a automotive mechanic before this happened and have done that for the last 30 years. I guess what I am saying is its been hard to adjust to what has happened to me and not knowing if I will ever walk again or have to live my life with this pain. Who knows, all i can do is to keep trying, and fighting for some proper care.

[imnotmaggie]

My tumor was C3-T1 and I had a great surgeon but the insurances idea of rehab was a joke. I spent 3 weeks in a nursing home and spent only 30 minutes a day in physical & occupational therapy combined. Thanks to an infection & additional surgery I was sprung from that awful place. It was thanks to the additional surgery that we found out there was an acute rehab facility in the hospital and thanks to the the persistence of my family and their borderline harassment of the social workers in the hospital someone convinced my insurance to cover me to be admitted for some serious physical therapy and rehabilitation. The acute rehab facility was designed for stroke patients and spinal cord injuries (the tumor counts as an injury). The facility was great and I had a daily schedule and they were serious about getting me on my feet and back to the life of a single mom. I think I. Had more PT the first day I was there than I did in three weeks in the nursing home. The key was finding the facility because the insurance doesn't want to pay the cost of an acute rehabe facility when they can dump you somewhere cheaper because you don't know what to look for. I would check hospitals in your area to see if they have an acute rehab facility and then call the switchboard of the hospital and ask to speak with their social worker or similar patient advocate position and keep pressing until they get you admitted. There are also spinal cord injury rehab centers across the country and who knows, maybe getting in to one of them could prove beneficial. I am certain I walk as well as I do thanks to the added amount of rehab I received and I will be forever grateful to my family that kept calling around the hospital until the answer was yes.

I hope you are able to get the care you need to help you as you figure out all the life changes these tumors bring with them.

[kansasmom]

I am saddened by your stories here. The truth is that we have to learn to advocate for ourselves and for our loved ones when it comes to getting the best medical care. No doctor cares about recovery the way we do.

For my son, before every medical visit I write down questions I have for the docs in a notebook I carry everywhere. If I don't get answers, I keep asking. I ask things like "what do you think we can do about X?" "Is there anything else we can try?" Most times the only time the doc thinks about you is when you are right there in front of them. SCTs are unusual and docs just may not be thinking "out of the box" enough. Ask them what they'd do if this were a spinal cord injury from an accident. If you have not already, go and see a physiatrist (they specialize in rehab medicine).

My son also came out of surgery with deficits, thankfully not as bad as others here, but they were still a surprise. The surgeon gave no explanation. I was frustrated for quite a while on the communication. So, I asked for copies of C's medical papers - surgical report, MRI reports, and his MRI images. It turns out the surgery was very difficult and the surgeon could not stop when C's nerves started to indicate a problem (C did have nerve monitoring). After reading the report I felt more comfortable that the surgeon did the best job given the circumstances. After looking at C's MRI images I better understood why he is continuing to have the problems he has too.

Here's one example. This Monday "C" had an appointment with rehab (the first since he was discharged in May). C's PT felt that a later appointment, once we have the next MRI and know how the tumor has responded to radiotherapy, would be better. But I had things I was concerned about so I was not going to delay that appointment. I must have asked the right questions on Monday. C has now had his walker adjusted (it's working better for him), he had casts made today for custom knee braces which will be useful no matter whether he stays the same, improves, or gets worse, and he will try elbow crutches to see if he can be more functional with those than with his walker. These are all because of specific concerns and goals we communicated on Monday.

There is no way to turn back the clock. I wish every one of you well on finding a doc who takes you seriously and tries to get you more help. If you have not yet found that doc, keep looking. With every serious medical problem there has been in my family we've had to go through about 3 docs who were not much help to get to one who was. And we had to just keep asking questions until we either believed that there was nothing else to be done, or we had a solution which might work.

If you have run out of ideas do say and I will try to point you toward something I've read which might help.

[sikorskig]

Hello T6-8 group! This is really a specialized board! I am new here.

After walking with a weird gait last summer, I was diagnosed through a MRI in October 2011 with a T 6-8 ependymoma tumor and had surgery in Dearborn, MI on October 19, 2011. Been about six months now. Being a fairly healthy 54 yr old active male all my life, this has been a real adjustment for me, but not as difficult an adjustment as some other have posted here. My right leg was very weak on sugery date and still weak today but getting better. I had right foot drop also but also getting better. My left leg was fine before and OK now. I spent about 5 days in hospital and saw my surgeon and his team several times. Spent 3 weeks in a PT rehab hospital with 3 hours daily of PT and daily Doc visits which really helped along with room service for good food! Had some bowel issues first couple weeks--urgency--but OK now, fortunately.

I had 5 days of cyberknife radiation treatment in December for remaining one-third tumor and recent MRI showed minor improvement. I guess you can't rush this radiation result! After my June 2012 MRI I meet with my surgeon for his feedback. My MRI report shows that remaining tumor still putting pressure in my nerves, so still worried about this issue.

I had 3 weeks of home PT therapy after getting out of rehab hospital and I learned how to do leg and stretching exercises on my own. I am now going to a local gym 2x week to work out with leg weight machines and ride recumbant bike. Since I still cannot drive, I am fortunate to live in a suburb with a local shuttle service for senior and disabled. Its nice to get out of the house for a few hours! I am looking into getting a portable left foot accelerator for my car to see how I can drive with it.

I can walk pretty good with my walker and cane, and can walk slowly around house without either and just have to watch where my 2 dogs are!

I have been without income for 6 months now since I had no disability insurance and I really learned a lesson about how important this insurance can be when something like this happens! SSI disability recently declined my claim but I might reapply with my updated PT and oncologist information. SSI feels I am still qualified to do some office type work, but I cannot sit in a chair for 40 hours yet. I have to get and stretch my stiff legs every hour and walk a little with walker.

I will keep you all in my prayers and hope you all had an enjoyable and blessed Easter!

Gary in Detroit, MI

[sikorskig]

Since my surgery, I have read a lot about cancer and tumors and have learned a lot from listening to Duke and the Doctor on talk radio daily and watching the Doctor OZ show on TV.

I recently starting taking curcumin supplements daily from what I have learned about its powerful antioxidant, antinflammatory, anticancer and tumor effect, and pain relief. Lots of ongoing medical research currently about this supplement. Anybody else taking curcumin or Tumeric? Good results??

[zoela]

Has anyone here gone in with NO paralysis before surgery or any deficits and come out OK? I am with no limb pain or paralysis, my tumor pain is basically localized to the mid back and my ribs. I am told that if I do not have the surgery it will compress the cord and I will become paralyzed. However, I am reading here about people actually being worse after their tumor removals? I have to say this is making me wonder if anyone goes in without the bad pain or paralysis and just has the tumor removed, and comes out the same minus all of these after effects I am reading about on the site...
Is there anyone that had a successful surgery with no additional problems?? Like tumor comes out with no problems?? I would appreciate any reply. No sugar coating for me...I truly believe that neuro surgeons live in the land of OZ and after reading these posts I am sure of it. How can so many people turn out worse after they have surgery to remove the tumor??? It seems many are paralyzed or numb, etc. after and were not before. So therefore what is the advantage of taking it out? I am due next month and am really quite frightened by many of these posts, yet grateful everyone shares.