new sci

Hi;

I'm new to this site but not new to others. Have a friend injured this summer (end) with c4/5/6 incomplete. She is doing great physically initially nothing in hands now moving thumb a little and this week the fingers. Toes moved on feet at first but now much better sensation in legs (some) and can stand with help....lots of spasticity.

Here's a question...she has to learn to manager her urine and has asked me to find out if anyone knows what the best way to go may be. She has had one uti after another and has struggled with other infections vre, blood clots and more....we don't want to cause more problems but she said she needs to do something.

Have you all any thoughts? I'm going to try and find some info so I can be educated ....too big a topic??

Any help you can give would be great!

Thanks!!

[betheny]

So she was injured in July or August? Sounds like she's doing real well.

Did she not get rehab? She should have been educated on the urinary issues. This is really important. What method is she using now? Probably intermittent catheterization, with her hands that is hard.

She needs rehab. Can you post more info for us please? Her age, insurance status, rehab possibilities. We probably have the info if you can narrow it down a little. Thanks and good luck.

Can't stop the spirits when they need you/This life is more than just a read thru.-
red Hot Chili Peppers

Thanks for the reply. Yes injury was late august and .Yes, I think she is doing well...she feels she isn't getting enough back quickly enough even though she knows she may not get it all back. The hands have been really difficult for all of us...frustration at not being able to move the fingers.. but we all think that is probably normal. Um.To answer questions. She is 40, Yes, she is getting some rehab (mostly the physical therapy) and they have spoken to her a very little about managing the urine and bowels. (that JUST happened) She was handed book to read about her injury (a bit to bite off..and rather dry) and the staff hasn't done anything about caths up to this point...diapers is all she has had and she is tired of that. The docs haven't been in a hurry to do the cath saying they will do it but down the road but that it has to happen. She is tired of the current situation and since she knows they will have to cath she would like to get info about which may be best.

As far as insurance...I'm not real sure about that status. I think she will have to go to a nursing home beginning of the new year. The facility she is in is supposed to be a rehab and the doc she has is an sci doc but the place itself does not specialize in sci injuries and I think a the staff while used to dealing with injuries and recovery, does not have a lot of experience with sci.

So I was hoping to be able to read something to her or give her info ...

Sorry for all the babbling. Thank you very much for your earlier response!!!

[betheny]

Urinary overview, in a nutshell, by Dr. Young:

What happens to the bladder, bowel, and sexual function?

The spinal cord also carries "autonomic" signals that control blood pressure, blood flow, breathing, sweating, bowel, bladder, sexual, and other autonomic functions.

• Bladder Paralysis and Spasticity. Spinal cord injury paralyzes the bladder. The bladder must be catheterized to drain urine. Indwelling catheters (such as a foley catheter inserted through the urethra) have a high risk of infections. Sterile intermittent catheterization is recommended but may be complicated by bladder spasticity or spontaneous contractions of the bladder. Bladder contractions can push urine into the kidney and this may lead to kidney damage. A drug called Ditropan suppresses bladder spasticity but have side effects such as dry mouth and eyes. Alternative approaches are available, including cutting the bladder sphincter so that urine drains freely into a condom catheter but this approach is not suitable for women. An approach that does not involve compromise of the urinary sphincter is placement of a suprapubic catheter or creation of a intestinal conduit from the abdominal wall to the bladder, i.e. a Mitrafanoff procedure.

http://carecure.rutgers.edu/spinewire/Articles/AcuteSCI/AcuteSCI.htm

The url above has a great article for newly injured people. I recommend you read it for the very 1st step, print it and give it to your friend. It will help her know what questions to ask. I'm really bothered by the scenario you're presenting. A sci that incomplete, 40 yrs old...in a nursing home? They're a lot easier to get into than they are to get out of, she needs to be looking hard for options in my opinion. If she's standing so soon post-injury her chances of recovery are awesome. Not 100% but lots more than most people get offered. With her potential she needs to be admitted to an inpatient rehab facility with a whole lot of sci experience. We're not like stroke patients or brain injury patients, we have our own set of needs and only such a facility can maximize her potential.

Have they done urodynamics on her? I'm no doctor, but as I understand it she should be being catheterized at least every 4 hours, and should have been since the beginning. If they're just letting her void with no bladder pressure studies being done they're risking her kidneys.

Tell her to concentrate constantly on her fingers. I think she's still in spinal shock, they may well come back to some degree of usefulness. If not, she needs to have some kind of plan in place for her survival and chance at a fulfilling life post-sci. She has a huge amount to learn and not much time to do it.

Here are my nuggets of wisdom: (I'm c5-6, incomplete injury, Injured at 40, 44 now, started out unable to move any toes or legs or fingers, can walk some w/ 1 crutch now, hands not great but I get by...I got lucky and I worked real hard at recovery)

1. Hope for the best, plan for the worst.
2. Learn all you can, read books, websites, this site is an excellent resource. She has to be her own advocate and can't rely on the medical people to have her best interests in mind.
3. Figure out the insurance thing and work it baby. If she's got it, get on them for everything possible. If she doesn't she better get plugged into the system ASAP. If there's a chance for a legal case, pursue it. SCI is way expensive. The more $$, the better your chances for quality of life.
4. Every sci is different. Don't plan on her being like anybody else she meets. Nobody can predict her ultimate outcome yet.
5. Work. Work. Work. Trying may get her nowhere but if she doesn't try she'll get nowhere for sure. It's slow and frustrating and painful, but recovery doesn't get handed out like Christmas presents. She has to drag it back out of her body if there's enough cord there to allow...and it sounds like there is.
6. I'll say it again. Hope for the best but plan for the worst. She needs systems in place for her life if she gets no more return past today.

Read that article I linked. It has statistics for recovery. Do a search on this site for any type of issues, especially like bladder care. Our nurses are the greatest and our community has seen it all and offered up their experiences.

Don't let her be apathetic and herded off into a nursing home. At least let her go fighting. If her only issue is incomplete spinal cord injury, I think the nursing home is a bad idea.

Let us know what else you need-Good luck. Beth

Can't stop the spirits when they need you/This life is more than just a read thru.-
red Hot Chili Peppers

[SCI-Nurse]

Where is your friend? A "rehab" center that puts a female with a SCI into diapers definitely does not know what they are doing, and I would really question the qualifications of her physician too. If you let us know where she is, we can perhaps direct you to more appropriate and expert sources of care for her. Otherwise she is just wasting her insurance coverage on a worthless program. A nursing home should not even be an option for someone as incomplete as this and someone at her age.

(KLD)

[SCI-Nurse]

Hopeful and waiting - Thank you so much to Betheny for her very informative post and to KLD for 'telling like it is'!! I, too, am concerned about your friend. She is not receiving the kind of care that is so important for someone with a new SCI. The most important is the lack of bladder management...the least of which is the need for a healthy 40 year old woman to wear diapers and the most of which is the risk that she is at for skin breakdowns (from the wet diapers) and kidney damage (from a possible distended neurogenic bladder).

I would recommend that you begin, in addition to the excellent article referenced by Betheny, by reading some of the following resources:

1) University of Miami - PoinTIS (http://calder.med.miami.edu/pointis/handbook.html) Read both the patient and the provider manuals. This is an excellent overview of the necessary care for each system affected by a spinal cord injury.

2) Information on rehab facilities and selection guidelines - NSCIA - rehab (http://www.spinalcord.org/html/newinjury/rehabilitation.php)

3) Information on navigating and negotiating her insurance needs - NSCIA - insurance guidelines (http://www.spinalcord.org/html/insurance/)

Does your friend have a case manager or discharge planner at the facility? If so, has that person discussed with your friend and/or her family her health care coverage? Was her insurance her own, through work or was she on a husband's policy? It is important to know whether she will remain on that insurance or if she needs to apply for state medical assistance and Social Security benefits. These latter benefits can take from 3 to 6 months to be processed; it varies from state to state.

Your friend and family need to become strong advocates for her medical and health care rights being fulfilled. She does not have to agree to be sent to a nursing home, if that is not her choice. Depending on her insurance and financial circumstances, she should be able to live in the community. Does her home need to made accessible? Will she need personal care attendants for some of her activities of daily living (ADL) needs? What will be her options for transportation? The best place to help address these many questions is a Center of Independent Living, a local office of information and referral. To find the CIL near your friend, go to: CIL (http://www.ilru.org/jump1.htm)

Lastly, if you need more help, you can always call the National Spinal Cord Injury Association Resource Center at 1-800-962-9629, open M - F from 8:30 AM to 5:00 PM (ET). CRF

Thanks so much bethany and sci nurse. These things have been related to her. We are looking at transferring (thank god!) to a facility that specializes in sci...We got the catheter (foley) and things are much better for her on a day to day basis...fingers are getting better and better. Can open them and close them (not all the way either way but definitely better). Told her to hope for the best and plan for the worst (great recommendations by the way) and we are all trying to help her see the good side....

[betheny]

Can you explain to me what sort of facility your friend is in and what the HELL they think they're doing? I'm glad she's looking elsewhere but am boggled at the level of mismanagement you have described!

Can't stop the spirits when they need you/This life is more than just a read thru.-
red Hot Chili Peppers

Hi Bethany;

I would rather not post the site publicly. will register so I can send it privately. yep...it is pretty bad...but you know, unless you've had better, you don't really know what to expect...right??

Will register.

Thanks.

[Jen]

Hi All;

Betheny....I sent you a private topic but in my stupidity sent it to myself so I apologize.

Well time has gone by. We moved out of this facility and into a nursing home.... I related everything as best I could. I think it is too late now to get into a model care facility any way but if she decides to we are about an hour away from one.

Her progress is coming....she will be getting 3-4 hours of rehab a day. Can walk a little with a walker - exhausting though. Right side of body is definitely not as good as the left (less feeling less mobility)...is that brown sequard syndrome?

Also, She has been in acute care since end of the summer and for another 2 1/2 months followin the surgery. Isn't it the norm to send a patient home after that time? How long can we expect her to stay in the nursin home?

Family seems to think she could be there for some time...I'm concerned that there hasn't been enough focus on lifestyle and emphasis on working toward independence. We don't know what amount of recovery is likely to occur within the next two years (hopefully quite a bit) but it seems to me that home modifications should be made...no?

One final question. Injury was at the c4/5/6 level. Surgery didn't take place until 6 weeks after the injury. I read somewhere that compression should take place riht away...Doc said they wanted to wait for the swellin to go down before operating...What say you?

I contacted an independent life center locally and asked that they send out a packet of info.

So many questions...Anyway, Thanks for all the info on the links you sent. I've read it all.


Apologize for being longwinded

[betheny]

Yes, she needs home mods. How are her hands? She sounds to me like she's doing lots better than I was when I went home from rehab, so I still don't understand the stop at the nursing home. But if she's getting 3-4 hours of rehab daily, that's more than some rehab centers would give her. As far as the decompression goes, who knows? It's too late now, for sure. What about bladder management? She should be intermittent cathing, probably independently. If she's in a nursing home with a foley she's a serious infection waiting to happen imo. She needs lots of occupational therapy, probably even more than physical, because that's where we learn how to survive with what we have left. If she can stand and walk some, her home mods probably won't have to be extensive...all I have is a ramp, bedroom door, 1 bathroom door, 1 closet door widened. No kitchen or bathroom mods (well, grab bars by tub.) But trust me, that is bare minimum. She may want to think she can walk into the bathroom and will never need to roll. But everybody gets the flu eventually. She'll need a shower bench, big handled utensils for kitchen, who knows what all...that's where OT comes in.

Is she complacent, content, happy where she is?

Thanks for the update, hopeful-Betheny

Can't stop the spirits when they need you/This life is more than just a read thru.-
red Hot Chili Peppers