Ependymoma

[belle838]

I would love to hear from anyone on advice about my mom.

Patient's date of birth: 8/21/46

my mom has been a nurse all her life and worked for a doctor in Waco at the Hillcrest Clinic.
She started falling in September of 2007. The doctor she worked for referred her to an orthopedic surgeon for a total knee replacement. She worked until November 1, 2007 below is what all we have been through since the knee replacement.

Total knee replacement November 12, 2007

never got better after knee replacement and by December 12, 2007 could not
write using right hand. Knee surgeon said don't worry everyone heals at
their own pace. Not once did the orthopedic surgeon every look at her feet for Clonus.

She could barely walk on a walker and had fallen over her walker 2 times because of the weakness in her arms and legs.

January 3rd 2008 started experiencing shortness of breathe. So the doctor did some test to see if she might have had a stoke. The test results ruled out a stroke.

On February 26, 2008. The Orthopedic surgeon Dr. Goodnight finally sent my mom to a Neurologist in Waco, Texas Dr. Howlett. He took one look at my mother and told her she had a tumor on her spine. He did an MRI and found a tumor on the C 3-5. He was not sure what type of tumor it was. He then sent her to Dallas at UT Southwestern where she saw a neurologist and surgeon; Dr. Morgan said that if my mom did not have the surgery she would die within 3 weeks because the tumor would slowly cut off her breathing capabilities.

March 3, 2008 my mom had a lapendectamy. The tumor was on the C 3-5 it was the size of a grape and it was wrapped around spinal cord. The tumor was beign ependymoma. About 4 weeks she was making slow progress and the doctor over the physical therapy thought that she would benefit from a baclfen pump. She was in UT Southwestern in Dallas from March 2, 2008 until May 13, 2008. The doctors said she was not improving as much as she should have and I am sure her insurance was throwing a fit about paying the bill.

May 13, 2008 she was sent back to Hillcrest in Waco, Texas where she stayed for 3 week and was making great progress. He was actually standing a little bit at the parallel bars and the standing machine. She was getting function of her bowel and kidneys back and was getting stronger and stronger. So, I fought like hell to get her insurance to pay for her to go to Memorial Herman TIRR in Houston, Texas. TIRR was ranked 4th in the nation for Spinal cord injury patient and Rehab. She went to TIRR in Houston May 28, 2008 and we let her go by herself for the first 2 weeks to gain some indepenanace. That place was a living HELL…………….She declined so fast in a 2 week period. What a joke if they are ranked 4th in the nation I would hate to see the other places.

She was discharged from TIRR in July 3, 2008 and was sent back to Hillcrest in Waco. She stayed at Hillcrest until July 25, 2008. Hillcrest discharged her to a nursing home.

I asked the doctors over and over why was there such a rapid decline in her condition. Something had to happen for her too go down so far from May until now.

Tumor Status and Date of Most Recent MRI: no significant change

Neurological deficits: quadriplegic, no bowel function or kidney no use of arms or hands

Current condition: incomplete quadriplegic

I am so angry with these doctors who do not know anything. I would just like some help and advice. It just seem like they are waiting for her to die.

Thank you and May GOD Bless YOU.

[tc]

I'm responding to bump this back up to the top. I told my friend to post her mom's story here and ask for the group's advice. This seems like such a desperate situation. Does anyone have any ideas that might help her mother?
Thanks,
Teresa

[drummer904]

I wonder if this could be something psycological, maybe she hated TIRR so much it affected her mentally and needs time to get a positive outlook going again. Im sorry she's in a nursing home, I can imagine your anger about the doctors... finding doctors caring enough to go an extra mile is getting harder and harder. I hope she makes a quick turn-around and gets to improving. I wish i had some good advice for you...

[ScrapHeap]

I really am not qualified to offer any hard, fast answers here. What I can say, with conviction, is I firmly believe rehab techniques and quality of service is paramount. Especially early on in the recovery process. I have also experienced some significant improvements approaching the 2 year mark (i am now 2 yrs 2 months post-op). That said, there have been some significant declines too. Most of my declines are purely physical. Atrophy seems to have a prolonged affect. I lack strength and stamina where I had a bit more not too long ago.

I HIGHLY Recommend UPMC South Side Rehabilitation Hospital. I have NO idea where they rank nationally or otherwise. And really, I don't care much. They were hugely instrumental in my recovery process. Purely professional..... slave driver physical and occupational rehab. They do not take no for an answer. You WILL do the work. They didn't have to push me though. I pushed myself, and consequently, I pushed their envelope as well. I was suppose to be in there, from what all the medical experts predicted, for up to 8/9 weeks. They signed off on my release papers in 2.5 weeks. I went home to continue outpatient rehab locally 3x a week for 6 months.

Is she motivated to improve? If so, I highly recommend getting her into a solid rehab clinic. That could be inpatient or outpatient. Inpatient is obviously more hands-on.

[kerry]

I'm very sorry about a condition of your mother. It does seem like something happened to your mother about the time she was at TIRR. It is also interesting to note that even prior to that she was making slow progress. Usually, progress is quite quick following a spinal cord surgery (well, quick is relative).
You mentioned her latest MRIs showed no change & she has lost bowel and bladder control. I think you need to get a set of smart eyes to look at the overall health of your mother. By smart eyes I mean a very good neurologist. Syrinxes can be very difficult to spot in an MRI. Syrinxes can occur following surgery and can cause further damage. A syrinx is similar to a cyst that forms in the spinal cord.
You said that your mother was fitted with a baclofen pump. I just had a bad experience with a pain pump & I very well could of been paralyzed from the waist down with loss of bladder & bowel control if I had not had a doctor who sent me to an infectious disease specialist. My pump injured my spinal cord at L4 & L5 my bone is infected and I'm taking IV Cubicin to treat the infection.
I am so sorry that you and your mother have had to endure this & you are in my thoughts and prayers. Please take care of yourself as well as your mother.
Kerry

[shannan]

I also had a period of large decline following my surgery. I was progressing well following my surgery in May 2007, I was tranferred to a rehab hospital and continued progressing, to a point where I thought that I was going to be able to get rid of the walker shortly....then suddenly and rapid decline approximately 6 weeks after surgery. My legs started to give out and I was feeling weaker. They thought that I may have developed an abcess or something, I was shipped back to the hospital, more MRIs and tests, but nothing appeared wrong, no abcess, no leaks, no changes to the tumor. We still do not know the cause and I am fighting to get back, the progress is sluggish but present. It's been a year and I spend less time in the wheelchair, and I can feel some strength returning. It's been a hell of a fight, but worth it. I am in physio 4 times per week, electronic muscle stimulation has been instrumental in returning life to my left quad muscle, which was useless for almost a year. I also found that aquatherapy provided the most benefit. Hope this is helpful, in what must be a frightening situation.

[cindylee]

I agree with the others that something must have happened at TIRR that you were not aware of. But if we always look back and think I should have done this or maybe I should have done that, it doesn't always help us to move forward. I wish you could get your Mom evaluated by someone else. Not just for the physical part of her, but also to see how she is doing emotionally. I know how hard this is on both of you. But keep being supportive to her and keep looking for an answer. And please don't let her give up on the therapy. Cindy

[8338]

FIRST OF ALL, I HAVE HAD IT WITH THESE DOCTORS THAT DON'T KNOW ABOUT SCT'S AND HAVE YOU CHECKED OUT FOR EVERY OTHER THING EXCEPT THAT!!!!!!!!!!!!!! AND ALSO ABOUT INS. COMPANIES THAT DON'T WANT TO COVER THESE THINGS! Believe me, I have been there and am panying on a nice home equity loan because of it.

I'm so sorry to hear about your mom.
The MRI that she had taken, was it with contrast.? Dr. Jallo always has them add the contrast for the last 10 mins. of my MRI because, if anything was missed with the other part of the MRI, it will show up with contrast.

Let your mom know that she is not alone with this spinal cord tumor because you found a site where there are so many of us out here just like her. She need not be afraid now. Therapy needs all that she can give it. Now, five years later, I just don't feel like going to work out anymore but when I've been away from it for awhile, I have difficulty moving.

As far as bowel and bladder I am puzzeled on that. Unless it damaged those nerves so much. I have use of my bladder now but now it's to the other extreme where my muscles aren't that strong to hold it for too long.

If you want an expert's advice, I would email Dr. Jallo with your questions.
Barb

[Oscar Medina]

First, I'm sorry about what your mother and you are going through. I agree it's a good thing for your mom to want to gain some independence; However, when it comes to spinal cord surgery, independence is not the most important thing. Recovery is! You or another relative have to take charge of her health. She will not be able to do it. Not only do we not move like we used to, but medication makes it very hard for us to follow up on anything that's left up to us to remember. I'm three years post up and still dealing with issues. I cannot stress enough how important it is that you take complete charge of her health. First, by educating yourself as much as you can about the sickness that's afflicting her. Surgery only takes care of removing our tumor, after that come a whole host of issues we have to deal with. The problem with the baclofen pump is that it's not free of problems. Follow this link: www.nbiadisorders.org/baclofenpumpcaution.htm

Do not let anyone take you the road of "It could be psychological" Not when it comes to spinal cord surgery. Especially not this early in the sickness. Keep in mind that what happened to your mom is equivalent to any other spinal cord injury. it's a very, very delicate situation and requires only the most professional treatment. From this moment on, you can't count on your regular doctor, they don't really understand and in many cases, like it was with mine, they don't care to know. From here on your mom should be seeing, neurologists, physiotherapists, neuro therapy and when and if she needs it neuro psychologist.

Here are some suggestions: I would immediately take her to a specialist in baclofen pump and make sure they do a very thorough check of the pump (MRI, CAT Scan, whatever it takes to make sure it's still connected properly). I would also get all the information I could from TIRR about how they followed up in adjusting the pump so i could take it to the specialist. Did TIRR do a complete check up of the pump immediately after they noticed the decline. I'm not a doctor, but that would've been the next thing I'd check up on after i made sure there was no change in the tumor area. Do make sure they always do contrast MRI!

Here are some tips to help you get organized. Gather all her medical records from the first diagnose and keep them in a portable filing bin so you always have information at an arm's reach. Keep all insurance bills in there too. Collect all MRI images (get them on CD and film) and technical reports that should accompany each set and make sure they are always with you for every consult, so they're readily available for the neurologists to see. Keep a list of all medications and dosages in an Excel sheet or a notebook. Do not stop any medication without the doctors advise. Be aware of any addictive medications she may be taking. When choosing a hospital for her therapy, make sure she's seen by a physiotherapist who works in conjunction with a doctor in the therapy rooms. Make sure the therapist's assistants read your mom's file and know her condition before they have her do any therapy. Make sure all therapy is assigned by a doctor in physical therapy. "The potential for recovery will be affected by other factors too. i.e. access to good physiotherapy and occupational therapy, normally this will be on a specialist spinal injuries unit" Follow this link: www.spinal-injury.net/incomplete-tetraplegia.htm

May God bless you and your mother and your entire family. I hope some of this helps.