Husband hit by a car

[Allidally123]

My husband was hit by a car 4/26/20 and left completely broken. Since the coronavirus thing is happening we haven’t been able to have any truly informative conversations with doctors. We know he has a t11 and t12 fracture. The put rods in his back from t8 to l1. At first they were telling us he had a complete injury around t12 but now they are saying it looks like more of an incomplete at L4. He can flex his glutes and quads so I would think that’s definitely an incomplete? He says he is numb below the knees but when I massage his foot he says he has a weird sensation there and he can feel what I’m doing but it’s not very strong. We are about 5 weeks post accident. Any hope for increased sensation or experience from anyone else? He’s so scared and crying all the time. I don’t care if he will never be able to walk again I just don’t know what to expect from these injuries. He also broke his hip, pelvis, femur, both knees and ankle. He has an external fixator in his right leg right now and his legs are really swollen. So I’m thinking maybe it’s common not to feel anything more until you get hardware out?

Any input, advice, similar stories would be greatly appreciated by the both of us. So glad we found this forum.

[Oddity]

I'm a T12/L1 'incomplete' from being hit by a car also. I have some sacral sparring and decent sensation and some muscle control down to my knees. I also have a fixation from t10-L3. I was considered "complete" (no sacral sparring) upon discharge from the hospital.

I made most of my motor and sensory gains within the first 6 months and steady slight improvement for a couple years later. Even many years later I learned to flex muscles I hadn't been able to before but I don't think that's common. Nothing very functional came back after the first 2 years. I can stand on my one stronger leg for a few seconds before my knee buckles but I can't walk and still need to use a wheelchair to get around.

Due to the nature of my injury my rods won't ever be able to be removed. The presence of hardware isn't gonna be a factor in his neurological outcomes, ie whether he can feel or move below the site of his injury.

It sounds like he's got more than most people have just a few weeks out, so that's a really good and hopeful sign that over the next ~6 months or so, as 'spinal shock' subsides, you might find lots of functional gains happen. Hope is good but there are no guarantees. Spinal cord injuries are like snowflakes. Every one is different.

Sorry you had to find us but glad you did

ps I had a 10, 6, and 4 year old when I was hurt, and my wife was 6 months pregnant. Being a Dad from a wheelchair has been super rewarding. That didn't change one bit.

[Allidally123]

Thank you! I don’t want to ask anything that makes you feel uncomfortable but I don’t know who to ask... Greg and I planned on having more children before this accident. Do you think that’s possible with these level of injuries? I want to ask his drs but I feel like that’s not something I should be making a priority. I read it’s highly unlikely SCI can conceive without something like ivf.
Also his hands and feet are ice cold. I read that is a symptom of spinal cord injuries and I wonder if that gets better once spinal cord injuries improve?
Also also... he’s had to cath everyday since being in rehab. He’s been home since last night and he’s only had to cath once today and it was only 300 that came out. He’s been able to urinate in his own every other time. I’m hoping this is promising news for recovery...??

So grateful for your response!

[Oddity]

IVF is a common fertility solution but so is IUI. It's much easier and much less expensive and less invasive. I'm able to produce an antegrade ejaculation (semen comes out normally) with only PVS (penile vibratory stimulation). They make medical devices designed for this (ie Ferticare) but I just use a Wahl 'Magic Wand' and it works fine. Most (I think) paraplegics can produce retrograde ejaculations (seamen goes into the bladder) the same way. It can be recovered with a catheter and separated by a fertility doctor and safely used for IUI.

The key to safely managing his bladder is going to be determined by a series of tests with a Urologist. If he's able to fully void on his own, while maintaining low bladder pressures, and never involuntarily leaking, then these tests will determine that. Urodynamics and ultrasounds are the big ones that he needs. I can hold up to ~350-400cc of urine without leaking, before my bladder pressures become unsafe, and I can voluntarily void all but ~25-50cc of that, so I still have to cath several times a day. Leaving even that little urine in the bladder consistently is very dangerous for infections.

At some point very soon he should have an appointment with a Urologist where these topics (will) should be front and center. A Physiatrist is also a good idea for being prescribed ongoing therapies and mobility equipment and potentially pain management. Incomplete SCI often come with a grab bag of chronic pain conditions (spasticity and never pains, etc). Gotta get him lined up to see these specialists soon if you haven't already.

It does sound like he is fortunate in his injury (relatively speaking...it all sucks, of course) and has reason to be more hopeful than many of us had reason to be as early as this after the injury.

(This place is dedicated to helping folks deal with SCI so no question is really out of bounds. We tend to speak very frankly about our experiences and sharing is caring, so don't be shy with questions. There is also a Members Only area that is not indexed by internet search engines, or available to guests, for more personal or sensitive topics, if needed.)

[Allidally123]

Interesting about the bladder thing! He was told in rehab that if it was 300 or under (via ultrasound) they wouldn’t even cath. He currently has a uti so looks like we should be cathing more often.

So far his only appointments are follow up with primary care dr, neuro dr, and ortho dr. I didn’t know which of these I should talk to about sex ed stuff I was thinking maybe more neuro dr. Definitely need to make an apt with a urologist. This life change feels overwhelming at times. Greg isn’t incontinent but struggles to pass a bm and needs assistance. I feel like that’s the opposite of a lot of SCI?

So hard to look at pictures and imagine this is what would happen... it’s devastating and hard to grasp. We’re you home from rehab long before your new baby arrived? How did your family cope with all these changes at once? My husband and I have a toddler and 5 month old when he got injured. It’s a lot.

I need to get the wahl wand that’s a good tip thank you. He says he has lots of random erections but of course hasn’t been turned on by anything (understandably) so we don’t know if they can last or if he can ejaculate. That’s good to know you are able to and that it’s possible... google says it’s extremely rare.... but you’re the first person I’ve talked to so it can’t be that rare!

I thought I was posting on an only
Members part of the forum now ha.. oops. Oh well.

[Oddity]

It might be too soon for a full Urodynamics work up, but it's still a great idea to have a Urologist make the call vs the rehab folks. There is still a lot of recovery to happen over the coming months. Just keep it in mind and see what the neurologist and others say too. They're the pros.

Needing some help (suppositories/laxatives and/or digital stimulation) is the norm for a managing bowels with SCI. Sucks but it's what it is. Bowel and bladder and managing sexual function can be worse than not being able to walk for some of us.

How to deal with changes? One day at a time I guess. It is overwhelming. We had a huge support network of friends and family who collapsed around us for the first few months. Very fortunate in that regard. They managed all the home modifications and stuff while I was in the hospital for a month and my wife focused on me and the kids. We also had a home birth (our second, already planned) so that was a whole lot less involved than it otherwise would have been. It went perfectly. That was just a few months after I was home.

Your husband has many months of recovery ahead of him but has some promising signs already. Hard to make firm statements about it as so much can change the first 6 months or so. Keep your chins up! It definitely gets easier.

[Allidally123]

Thank you! One last question... are bowel/bladder/sex problems the norm for all SCI? Is this inevitable?

[Oddity]

Yeah. There are no absolutes, but it is the norm. Those functions/nerves innervate the sacral region which is all the way at the bottom of the spinal cord. Most SCI occur above that, compromising signals to the brain from that region in some way. I'm sure some extremely incomplete SCI escape the worst of it, though. The next 6 months or so will reveal a lot of this for your husband as he recovers from the acute trauma.

[pfcs49]

Welcome to my neighborhood.
I am a T12/L1 complete injury since 1995, now 73yo. I remember the terror my wife and I both felt back then. Julie (my wife) journaled extensively about it and I have read it. The stress and loads you are undertaking is profound! Please give yourself a pass. You don't have to be perfect! There are many in this community who will step forward to support you. Life as you knew it won't be the same, but, with time and acceptance, and teamwork, you will transcend them.
As debilitating as my injury is, I wouldn't trade my life with anyone else's!

Oddity is a "reliable source" and I concur with his coaching to you.
Where are you geographically? If there is another member nearby, that could be a help.
Please, don't leave any concern unexpressed. Our experience has made the most mysterious and private processes topics of public conversation. It is what it is!

Good luck with your (mutual) recoveries. The first six months post-injury you are likely to see some, or sometimes even more recovery.
It seems you are pretty open about what's happening. It will really serve you and your husband to be in an open candid conversation as you take this on!
Keep no secrets and go forward together in this! If you want to talk to Julie, I'm certain she would be happy to support you. PM me and I'll get her in touch with you.
And finally, be gentle and be generous, to your mate AND yourself!
Good Luck

[Tetracyclone]

#4.1
Allidally123
Your husband's injuries are still new by recovery standards. You will likely see many good changes in the years ahead. I am still learning to activate new muscles after 12 years. Oddity has offered great information.

On4 thing that concerns me is all the other skeletal injuries he suffered. in my case, ancillary injuries were given scant attention or even forgotten as the sCI dominated doctor's thinking. I have a finger joint that does not bend because the doctor kept it in a splint for 8 weeks. I learned after discharge, when i read my medical records, it was only a joint injury that should have been worked and loosened after a much shorter time. If his other injuries are not carefully tended and rehabbed unnecessary limitations may limit his abilities after the sci fades into the past and becomes his new normal.

Hubby's grief is so normal. It will last a few years, just like losing a loved one. His good function was well loved. Include yourself in thinking about the grieving process. SCI happens to the whole family and, despite a demanding life as wife and mom, Make time or mental space for yourself to grieve the life you had and the "whole" guy you have lost. It is painful,

Lots of us have children, sometimes the normal way! New experimentation is in your future and it can include much laughter and fun, as well as a sweet level of intimacy.

[SCI-Nurse]

Did your husband have an inpatient acute rehab stay? If so, where? Was his physician a physiatrist? Were the nurses CRRNs? Many of your concerns should have been addressed in a good rehab inpatient program, or at least followed up in an outpatient SCI rehab program that includes care from a physiatrist, a CRRN, and therapists such as PTs and OTs.

Oddity posted good information on IUI and IVF. Some have had to go further with ICSI to achieve a pregnancy. Rarely do the vibrators for stimulating ejaculation work before 6 months post injury, and they are mostly effective in those men who have lower extremity spasticity. This may be difficult to assess at this point due to his orthopedic problems.

He definitely should be working with a good neurologic urologist. Many urologists are not up to date on the latest techniques for SCI/D bladder management, so it is work while to search for one who specializes in neurologic urology. Most though will not do studies such as urodynamics for 3-6 months post injury, as the innervation of the bladder (which is complex) can change quite a bit during that time.

How much is he drinking daily? It should be approx. 2.5 liters of water a day, more if he is exercising and sweating heavily. Catheterization should be done every 4-6 hours and rarely longer than that. Regardless of the volume, his bladder needs to be completely emptied at least every 6 hours. When he is able to void (and is this spontaneous/reflex voiding or voluntary?) he should cath afterwards to see how much residual urine is left behind. Generally residual should be less than 50 cc. He should keep a diary of all this to show to the urologist when he see them. He should also record any incontinence.

You may want to post (or get your husband to post) questions related to fertility and sexuality in our Relationships & Sexuality forum. This is one of our forums that is restricted to members-only, so no one who is not a member can either read nor post on that forum. It is a little more private than this one.

(KLD)

[hlh]

KLDs advice is excellent. And you've gotten a lot of great advice from others here.

He needs a neuro-urologist and ideally, a physiatrist who specializes in SCI to be following him long term. No other doctors will be able to help with the complexities of SCI.

If you feel comfortable sharing what city you are in, sometimes we can recommend doctors or physical therapy programs.

My father had a similar incomplete injury to your father's and it is a great sign that he has recovered some bladder function and is moving many of the important muscles in his hips/legs. With the function you describe, he will be able to walk again, and there is a good chance he will recover more function. He just needs time, and to get those fractures healed.

I strongly recommend you also find an excellent orthopedic doctor to follow all of his fractures, make sure they are healing appropriate, make sure he gets appropriate PT/OT for those injuries and doesn't develop complications.

And as soon as possible, he needs to start an aggressive inpatient acute rehab program that specializes in folks with SCI. Sometimes it gets delayed when you have a lot of fractures like your husband, until the major fractures are stable/healed, but push every single day... every single doctor visit.... to move to the next step. When can I start PT. When can I start OT. Where is the best inpatient SCI rehab for my husband? How can he transition into it.

Is he home now? Then ask your doctors to order home health care so PT and OT can come to the home and work on whatever he can do.

One day at a time. It is a lot to learn, to organize. And at times - overwhelming for the spouse/partner/family. Write down everything. Ask a lot of questions. Always appeal every rejection from the insurance company. Latch on to every good doctor/nurse/therapist/nursing assistant and learn everything you can from them. And never give up! It will get better.

[SCI-Nurse]

Wishing a great recovery. He will continue his rehabilitation at home. As long as he works as hard as he can. Some functions will come back, others will not or will partially come back. It is really hard to predict. But know that many, many people have lived and or living a full and complete life. There is nothing that cannot be tried. There are medications etc.. for erectile function, there are specialist who only do infertility for men and many concentrate on SCI pts. The female is checked out to so your ob gyn will be part of it. There is a sexuality forum you might want to visit. But know that the functions that we take for granted until we are having issues- all of these are normal and rehab doctors, especially SCI specialists will assist with this.
Urodynamics- usually like to wait till about 3 months and then repeat around 12-14 months.
The SCI persons in this Care Cure community are excellent. They will give you advice and so will SCI nurses. Sometimes it is difficult to get the perfect answer because unfortunately the spinal cord and nervous system are so complex and every person's injury is just unique but there are many similiarities and their experiences is priceless.
Care Forum pretty much addresses any bowel, pain, bladder, etc.. issues.
You can also private message the SCI Nurse moderator if you want more of a one on one advice.
NEVER give up!
CWO

[SCI-Nurse]

Also, the residual ( we call it pvr- post void residual) can be checked by the bladder scanner in the hospital. There is a home version but not sure insurance would pay for it but SCI/rehab and urology clinics have them also. Then depending on the amount of residual ( amount left in the bladder) he would need to cath or might be able to wait. Urodynamics is testing the electrical activity of the bladder and can actually see the bladder contraction which is what occurs with voiding and the pressure. The bladder is just a specialized muscle. The sphincter is another muscle that keeps the urine in and then relaxes when bladder is contracting in order to urinated(void). Sometimes with this level of injury, the bladder will contract but not strong enough to empty. It may get stronger.

CWO