HUSBAND just had ependymoma removed

[bobmiami]

I'm sorry to hear of the struggles your husband has experienced, and of his frustration.

This is a step-by-step process. His Anger and frustration, it sounds like, is translating into determination to improve. This is obviously far better than depression, and miasma, which some have experienced.

In ALL Cases, I urge you to stay in touch with the forum, and keep us posted. You are part of a network of VERY concerned and motivated individuals. Unlike MOST of your friends and relatives, and perhaps, in some cases, even the medical personnel, - WE ALL can relate - and want to help.

Everyone is different, of course. No one has exactly the experience of your husband - AND - We are NOT DOCTORS. However, having said that, the anecdotal stories and experiences - you WILL find, - often come VERY close to approximating various different aspects of what he is going through.

The Reality is this - We must "become our own Doctors". That is to say, we must learn a GREAT DEAL about this thing - this ependymoma - so that the best options and strategy can be pursued. For THAT Purpose - you are in the right place!

We are all the SAME - in that - when the diagnosis is first given to us - it is incredibly hard to relate to. We felt out of our depth, and - compared to our life BEFORE that - a bit helpless. With the help of this and other forums, step-by-step, we have progressed.

The after-affects of this operation is no cake-walk. It's a major insult to the system, and the Surgeon should have prepared you for that ('sounds like he didn't). It gets better, and it sounds like it already has.

Study - and find out enough - so that the best strategy can be employed going forward. That is:
a/ Some things are tough and painful, but you probably find (now) that they are "normal", and part of the long 'road back'.
b/ Other things - I'm generalizing - FIND out - and keep an eye out for what is "not normal" in the recovery so that you can AGRESSIVELY / ASSERTIVELY ( that's worth repeating), pursue it with the Doctors.

Unfortuantely the DOCTORS are not nearly as helpful as they SHOULD be in regard to "what's normal". We can help, and Todd's suggestion about a good physical Therapist is a good one. Even better , a Physiatrist (you'll have to look it up - Superman's Doctor, Christopher Reeve had one)
Physiatrist: A physician specializing in physical medicine and rehabilitation. Physiatrists specialize in restoring optimal function to people with injuries to the muscles, bones

We don't know your husband, Geoff, - but I think we are getting to. He sounds like a very determined, courageous man. We wish him well - and we are here for him - and you!
Bob
C6/7 Ependy since Aug 2007

[Todd]

very odd that you had a specific incident where you got worse after surgery. did the docs explain this at all?

[crowning]

Hi everyone,

It's been a long time since I have posted or visited this site. But thank-you all for your replies. There were a few questions asked about the surgery. Yes, we were told only 3% of anything going wrong, and definitely not paralysis. We were told not to worry, it had never happened, and my husband was a strong healthy guy, so his outcome would be the same, minus the back pain. When I saw the surgeon immediately after the surgery, he said everything went well, he removed the whole ependymoma. But a strange thing happened during surgery, I was told we lost the readings to Geoffs left side but I was told that his right side was ok. But don't worry he said, it was probably a equipment malfunction or a number of other things. He said they could not wake my husband up, so wait a few hrs to see him, and his legs would be weak for a few days then he could go home. When my daughter and I went in to see my husband, he said he couldn't feel or move anything from the waist down. I have since received the medical reports and they lost the SEP's as soon as they cut into the cord, then they lost the MEP's to left side, never recovered, then lost the MEP's to right side which recovered slightly with increased input. In the surgical report he does not even talk about the readings, never paused during surgery to let spinal cord rest etc. The medical person that did the readings,( I forget their title) said that the functional outcome of my husband was consistent with the readings given during surgery. So what did occur was the surgeon ignored the readings, and as he said, it was probably a equipment malfunction. It was not a equipment malfunction, but I suppose in his head, he thought it was, because this had never happened before to him, he was just playing god, and kept going, in the process he paralyzed my husband. Update on Geoff after a year. He still has no sensory, bowel or bladder. His muscles are getting stronger and he practices walking with forearm crutches at home. He can only do this for a limited time as his legs give out. But when he started he could only do one lap, was falling, and now he can do 7 laps. Physiotherapy was discontinued months ago, the therapist said he was not showing enough improvement and she did not expect anymore. She told him he could have a nice life in a wheelchair, that he should seek counseling before he does something stupid, and he was angry and in denial. This is how he has been treated since this happened to him. My husband never gets angry, and he is not in denial. He is determined and has hope. We are now trying to get funding for a stand-up wheelchair so he can return to work in his former job as a automotive mechanic. His insurance company wanted him to get a desk job, but the pain is just too much for him sitting in his chair all day, and besides, if he can do what he did before, and loved doing it, he should be given the chance. The funding will be another battle, as everything else has been, and he probably won't get it, but we will continue to try. He had been volunteering at work for free, just to feel useful, which he is at work, and his boss appreciates it, but we struggle on his small disability and he wants to make a decent living again. It helps alot when he goes to work, it makes him feel useful. He has never been out of work, never missed a day of work, so that has been a struggle for him. The things he used to do, that he cannot do now, frustrates him and he feels bad that I have had to take up the slack. I try to reassure him it is not his fault, and I don't mind, but some days, I am just as frustrated as him. It has been a long and hard road as you all know, and it still is just the beginning. Thank-you all for all of your support! For all you fellow Canadians, that have received second rate medical care why does the public not know? I haven't told you guys a quarter of our horrible treatment. I would tell a newspaper but so far no luck getting anything published. Maybe one of you guys would have better luck. I think the public deserves to know.

[crowning]

Thanks Bob,

He saw a physiatrist, he did not touch him, or exam him, to see where he was in his recovery,he talked about his pain meds and a syrinx he now has in his cord. He told him to go home and continue his exercises. And it took 6 months to see him. He just recently went for another 6 month consult with him, my husband asked him to write a letter for him to see if he could get funding for proper physio. He would like to try overhead gait training, which is not available here or even better a lokomat. Anyways, again he did not examine him, talked about his pain meds, then sent him on his way. When we went to see his GP last week the report we got from the physiatrist on the appointment was, my husband was abrasive with him, he wrote a letter on his behalf for physiotherapy but did not know if it was justified and he suggested my husband find another physiatrist. We were shocked and I asked my husband what happened. I have never seen my husband being abrasive, if anything I get mad because he is too passive. Anyways he said the only thing he could think of was when he arrived the receptionist was angry that he was 7 minutes late and the appointments were 20 min. only. He struggles to get out of the van. It's not adapted. Anyways, he mentioned to the physiatrist that he had traveled 2 hours to see him and he apologized for being 7 minutes late. Other than that he has no idea why this physiatrist said that. It seems to be the norm now. Nobody wants to help my husband in his medical care. I don't sleep at night because of this. I just don't get it. At that same appointment, I was there, his GP told him to find another Doctor because we were taking up too much of his time. I agreed we needed to find another Doctor, because this one has done nothing but argue with everything we say, will not send my husband to any specialists, and will not advocate for physiotherapy. Actually he wasted our time for not listening, speaking over us, cutting us off and arguing constantly. He even refused to fill out a insurance form. So in a nutshell, we have been our own advocates, I have tried my best to get Geoff the help he so deserves, but everyone is slamming the door in our face. I feel like Geoff is being treated this way because he is paralyzed. Out of frustration we went to a walk-in clinic, very nice Doctor, but he was retired and just filling in. He was the first Doctor to ask Geoff to move his legs, and he said yes, you could really benefit from physiotherapy. We explained what was happening and he wished he could help, but he was just filling in. I asked him why patients get treated better with a broken leg, and he said, that's because we know how to fix them. He then said we needed to see a lawyer. I said, how sad is that, you need to pay for a lawyer to fight for you to get proper medical care. He agreed.

[Todd]

horrible. PT is crucial, nerves do heal and reconnect themselves, stimulation is critical to this process.

why even have the equipment hooked up if the doc is just going to ignore it? I would be more than angry. not sure what legal action you can take in your country but it might be worth looking into.

I feel so bad for your experience. guess that doc gets to keep his practice, keep on hurting more people because he doesn't know what he is doing. wow.

[kansasmom]

Crowning, I am sad at the way your husband has been treated. I don't know what to suggest to help. Maybe try to focus in on one part of the problem, like getting a better GP, for a start, someone who treats him as a human being, and not a nuisance!

Also, you might look into whether there is any legal help available to him through some kind of advocacy group, citizen's advice bureau, or such.

[billanschell]

For what it's worth: My SEP monitors cut out for good at the beginning of surgery, just like your husband's, and my MEP monitors cut out twice during the surgery as well. This is apparently not at all unusual, though of course not good.

My new neurosurgeon told me last month that the monitors are so unreliable, and send out so many false signals, that the only reason he uses them is so he can't be sued for NOT using them! This is contrary to the prevailing wisdom on this website and many studies I've read, but it does make the case that your neurosurgeon may not have been grossly negligent.

[Todd]

jeez that's scary.

[betty]

Hello Crowning,
Im so sorry to hear all that your nusband and you are going through. Keep the faith and positive attitude in spite of difficulties. It does help. What you see today probably will not be the case a few weeks
from now. Little baby steps is what it seems like and some days no steps but recovery takes time. Im glad you have found our site for support. It's sure not easy being a caregiver in tough times like this but your husband appreciates all you are doing or just being there.
God bless you and your family.

[m1ta]

Hi Crowning,

Sorry to here about what your husband is going through. I had a T2-T10 laminectomy to remove a grade 2 ependymoma on September 9th, 14 hour surgery with the MEP monitors cutting out with 95% of the tumour resected. The neurosurgeons agreed to cauterise the tumour and end the surgery there.

Immeadiately after surgery, in the recovery room, I remember waking and not being able to feel anything from the waist down. As I was struggling to open my eyes due to the anaesthetic I couldn't see if I was able to move my legs and had to ask the anaesthesiologist if my legs were moving. She said they were. Over the next couple of days I discovered I was able to bend my right leg and raise it from the bed a little and move the foot of my left leg.

After 10 weeks of rehab and 3 weeks at home I am sat typing this being able to walk unaided. I can climb the stairs and over the last couple of days have been working on standing on one leg. In fact I now believe I can, with alot of effort in the gym, recover to my pre surgery level of mobility and fitness and return to work. Lying in bed during those first two weeks post surgery I thought this would have been impossible.

I would say I was highly motivated to improve my condition and that motivation came from my wife (our first child is due in February). I used to do 20 minutes of bed exercise 3 times a day in the early stages and would get excited about the smallest little improvements. I can remember being sat on the komode next to my bed, with the curtains drawn, literally fist-pumping the air when I achieved my first bowel movement independently.

Things do get better and I hope they do for your husband. It takes time and the first few weeks are definitely the hardest. After spending 2 months in a spinal rehab unit observing people with all sorts of conditions I can definitely say those that make the most progress are the ones who stay positive and work hard.

Good luck and I wish you and your husband all the best.