new here and daughter in hospital

[melindasoo]

Hello everyone, I just came over from the Pediatric Brain tumor support group, where i was told about you guys. My 17 year old daughter Rian has an intramedullary grade II astrocytoma from the C-1 -C-7. She had surgery three years ago, followed by 32 treatments of rads at University of WA. The neuro couldn't get the C-1 vertabrae back on after surgery so she is currently w/o the C-1. We have been in hospital since March 19 mostly for pain management. Doc's can't seem to control the back and neck pain. And she has shooting pain down her right side. She does have some hemi-parisis on the right side from surgery. Now, she is having hormonal issues (menopause like) and bladder and bowel incontinence. The neuro does not want to do another MRI becasue the tumor is a slow growing one and she had one in March. The tumor was inoperable. Dr. Avellino was only able to remove 15% of the tumor. SO............. my question is, Any advice on pain mngt. or even if this is going to be her life from here on out. Is this normal stuff. After surgery when she was 13, she did terrific for three years, just until November, and now she can barely walk with out a walker. I don't what what happened. She is on Neurontin, Baclofen, Methadone, Morphine, Naproxen, Tylenol, Clonidine Patch, among others just for pain, not to mention the other meds she is taking for the side effects of the meds. Need advice badly. Also, she is having crazy violent outbursts that she never had before.

[bethann]

I am so sorry to hear your daughter has to go through this!! I a sure it is rough on you also. Have you talked to other doctors about your daughters condition. I am thinking the pain alone can give you outburst but all the medication she is on could also be doing something. Has she had MRI's in other areas also (her brain and lower spine)?

Pleas keep us updated on your daughters condition.

We will keep both of you in our prayers!

Beth

[Joel]

I had a nerve block done shortly after surgery that worked well with some pain that radiated from my surgery site. If I was her, I'd probably be mad as hell too, so maybe that is a normal teenager's reaction...It sounds like she is on a lot of medications, so adding more or upping what she is taking may not be a realistic option. Is most of her pain or the neuropathy-type, ie, in her legs/feet? Maybe switching to Lyrica instead of neurontin might help. And what about PT? What are you doing in that regard? So sorry. Tell her to interact with us here, OK? I would love to hear from her.
Joel

[drummer904]

I can surley understand the outbursts, thats way to much to go through, especially when meds aren't helping and i can relate to that. im sure the horomonal issues are a part of that also. I hope things impove soon and i wish i could help.

[gatorshime]

Melindasoo,
I am so sorry to hear about your daughter. I have a 6 year old daughter myself. Unfortunately, I know a lot about pain and pain meds. I have had two surgeries to remove ependymoma's at T7-9 along with syrnix's from C4-T10, one surgery for MRSA I caught with SCT surgery number two and my last surgery was 8/07 for a twisted and tethered spinal cord. I have tried about every medicine out there. I had pain so bad in 2002 that I had a medtroics intrathecal pain pump put in. They work but, it takes awhile to get the meds right. I have morphine, baclofen, bupivacaine and clonidine in mine. You have to adjust the meds a lot at first and SLOWLY to let the body adjust but, the amounts are far less since its directly into the spinal canal. One syringe lasts 60 days. The second medicine I suggest is called FENTORA or ACTIQ. These are fentanyl products which work within 15 minutes of use. Acitq is a lollipop you rub on your gums, its good but, causes dental problems over time. ( 150 calories ea. ) Fentora which I use now is a tablet the size of an aspirin that you put in you gums to disolve usually in 15 minutes. When I am in serious pain these are my life savers. Is he on any steroids now? They can cause the moods but, also help with the pain, swelling and the like of surgery. I am 43 and I've had my tumors for 7 yrs. ( since surgery ) I get moody with pain also. Plus to be young it has to be hard. I'd really look at the pump and the actiq/fentanyl. Some of those you mentioned can be put in a pump. Please let me know if you have any other questions.

Scott
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[melindasoo]

Thanks everybody for the respones. I brought Rian home today and she is feeling much better. I have 18 medications to keep her on at this point, so it may take me awhile to get the schedule right, but whatever it takes. I'm going to definately check into some of your ideas, as I'm up for anything at this point. We are both tired of getting up at 2am and rushing to the ER for pain management. She is getting an MRI in six more weeks to check the tumor, since her last one in March had "enhancements". So we just have to wait and see what happens!! Thanks again everybody.