Inspired Spinal Cord Injury Support Forum

lulu28
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Physician Advice for a Quadriplegic Jun 25, 2019 11:10:36 GMT -8

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Post by lulu28 on Jun 25, 2019 11:10:36 GMT -8

Hi All

I am new here and a caregiver for my best friend who is C5/C6 Quadriplegic.

We live in a rural area and she has only been using a general practitioner in our small town.

I would like to get her in with a physician who is more specialized in spinal cord injuries in a larger city near us.

What type of physician should I contact? Neurologist? Spinal Surgeon?

I want a physician who can understand the challenges and health issues that she deals with due to her injury.

Thanks for any advice that you might can offer to me.

Lulu

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Physician Advice for a Quadriplegic Jun 25, 2019 21:41:34 GMT -8

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Post by vintage on Jun 25, 2019 21:41:34 GMT -8

Hi lulu28. It’s always good to see that there are friends like you who don’t “bug out” on an injured friend. Some quadriplegics are categorized as “complete” and others as “incomplete”. Do you know which your friend is? An incomplete would have no intentional movement below the injury. But an “incomplete” might have some voluntary movement below the injury. In fact some “incomplete” paraplegics and quadriplegics can walk. The type of specialist who could best help her would depend on her health issues, and those in turn, would be influenced by whether her injury is complete or incomplete, and how much voluntary movement she has. Tell us a little more.

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tetra
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Physician Advice for a Quadriplegic Jun 26, 2019 7:23:44 GMT -8

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Post by tetra on Jun 26, 2019 7:23:44 GMT -8

Lulu,
To start, people can offer better advice if you fill out your profile more and tell us what large city you are near. Someone may know of a good doctor. You are entirely correct that a small town GP is unlikely to know a lot of what your friend needs. I suggest that if your friend is not presently interested in doing research online that you do so. no doctor ever knows enough and we all need to become experts on SCI in order to get decent care.

The Christopher and dana Reeve Foundation offers a lot of support and a useful information booklet to new people who sign up. Signing on does not invite advertising, by the way. They also offer webinars each week. I suggest you begin there.

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lulu28
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Physician Advice for a Quadriplegic Jul 30, 2019 9:30:20 GMT -8

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Post by lulu28 on Jul 30, 2019 9:30:20 GMT -8

Thanks for responding. We live in east Tennessee, between Chattanooga and Knoxville. My friend is C5/C6 incomplete and a full time wheelchair user.
She has limited use of her arms and no finger function. Fortunately, she has not had to be admitted to the hospital again since her injury six years ago, however, we know that this is not the norm and would like to have a specialist or group of physicians to manage her care. She has a supra pubic catheter and a colostomy as well. Sorry, I have been her caregiver for less that three months, since her husband developed cancer and is unable to care for her now, so I have lots of questions.

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Physician Advice for a Quadriplegic Jul 30, 2019 12:04:39 GMT -8

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Post by rhinehart on Jul 30, 2019 12:04:39 GMT -8

Jul 30, 2019 9:30:20 GMT -8 lulu28 said:

Thanks for responding. We live in east Tennessee, between Chattanooga and Knoxville. My friend is C5/C6 incomplete and a full time wheelchair user.
She has limited use of her arms and no finger function. Fortunately, she has not had to be admitted to the hospital again since her injury six years ago, however, we know that this is not the norm and would like to have a specialist or group of physicians to manage her care. She has a supra pubic catheter and a colostomy as well. Sorry, I have been her caregiver for less that three months, since her husband developed cancer and is unable to care for her now, so I have lots of questions.

The first killer of SCI victims is Urinary tract infections. About 20 percent,actually. So, you really need a urologist, who either understands SCI issues or is willing to learn. The big problem is not under-treatment, but over-treatment. Basically, you don't want to exhaust all of your antibiotic options treating lower tract infections, because, when the day comes (and it will) when you are dealing with a dangerous upper tract infection (kidneys) you want to have reserved options that still work.

Next on the list is pressure sores. This is the second killer, and almost as big as UTI. Also, entirely avoidable. So be warned. Any beginning of a sore has to be aggressively treated. Lying in bed for a few days to prevent a sore (observed redness) is NOTHING in comparison with what you will entail if that sore pierces. And the drastic measures required to cure a mere skin sore are again NOTHING in comparison with what it takes to cure a deep sore. Bottom line, bite the bullet right away at the slightest sign, and you will be happy. Also, of course, develop a routine that simply prevents sores. (hint: you don't have to stay in your chair all day. You can take rests lying down. ten or fifteen minutes is all it takes.)

For skin treatment, you need access to a doctor, or at least a specialized nurse who really understands the issue and how to treat (hopefully without surgery)

With those two bases covered, you should be good to go.

Best of luck,

Gordon

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vintage
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Physician Advice for a Quadriplegic Jul 30, 2019 13:16:16 GMT -8

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Post by vintage on Jul 30, 2019 13:16:16 GMT -8

Excellent advice, rhinehart. I will add here my alternative therapy suggestion. It’s what has always helped me. At the first hint of a urinary tract infection, I make an herbal tea of marshmallow root, hydrangea root, and gravel root. I drink only a quarter cup at first, and wait a couple of hours before drinking more. Black cherry juice is a good addition to the tea. There are many ways to buy these herbs online. This is a well-known alternative therapy recipe. I buy from drclarkstore.com for convenience.
drclarkstore.com/kidney-cleanse-tea-hydrangea-marshmallow-gravelroot/

Make sure your current meds don't interact with the above suggested.

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Physician Advice for a Quadriplegic Jul 31, 2019 4:50:48 GMT -8

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Post by lulu28 on Jul 31, 2019 4:50:48 GMT -8

Thank you both so much! She had a terrible pressure sore while in rehabilitation which required flap surgery, so we are vigilant in watching for pressure sores and any skin changes. Scary stuff for sure. Right now, we are dealing with redness on both heels, so we are actively treating this situation as well. She also tilts many times per day to relieve pressure.
Another thing that I want to work on is stretching. She currently does not have a routine. How should I proceed with this? I don't want to do something that will injure her, but I believe that she definitely needs to have her muscles and limbs stretched.
Also, for anyone who is quadriplegic, what type of exercises can she do on her own to work on upper body strength and better lung capacity? Again, she has no finger function, but limited arm function(no triceps). Is there adaptive exercise equipment that anyone can recommend?
Thanks for any and all advice!!!!

vintage Advanced Member Posts: 2,576 Post Likes Received: 1,757 Date Joined: November 2016 Injury: T9 incomplete Date Injured: March 15, 2014 Member is: Offline Send PM	Physician Advice for a Quadriplegic Jul 31, 2019 12:04:13 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by vintage on Jul 31, 2019 12:04:13 GMT -8 The hospital gave me a boot like this. It takes pressure off of the heels. www.amazon.com/Heelmedix-Pressure-Ulcer-Relief-Protector/dp/B00Q0Q7FXI

tarabev
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Physician Advice for a Quadriplegic Aug 3, 2019 3:15:24 GMT -8

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Post by tarabev on Aug 3, 2019 3:15:24 GMT -8

Jul 31, 2019 4:50:48 GMT -8 lulu28 said:

Thank you both so much! She had a terrible pressure sore while in rehabilitation which required flap surgery, so we are vigilant in watching for pressure sores and any skin changes. Scary stuff for sure. Right now, we are dealing with redness on both heels, so we are actively treating this situation as well. She also tilts many times per day to relieve pressure.
Another thing that I want to work on is stretching. She currently does not have a routine. How should I proceed with this? I don't want to do something that will injure her, but I believe that she definitely needs to have her muscles and limbs stretched.
Also, for anyone who is quadriplegic, what type of exercises can she do on her own to work on upper body strength and better lung capacity? Again, she has no finger function, but limited arm function(no triceps). Is there adaptive exercise equipment that anyone can recommend?
Thanks for any and all advice!!!!

Does she have sensation? When I was in rehab and still unable to move myself (I'm a C5/6 quad) I got a pressure sore on the back of my head, I was able to feel the pressure but the nurses didnt listen to me when I told them that the point on the lower back of my skull was starting to feel sore, hence why I ended up with a pressure sore which took a long while to heal (that spot still feels different to this day 21 yrs later)
You can check to see if a pressure sore is forming, the surface is still intact but it gets soft underneath the area, it can feel squishy (i hope that makes sense) as you gently press it.

The redness on her heels could just be from sleeping in bed. ..I also had some redness on my heels but they never got sore, it was because of laying on my back in bed, I found that putting a pillow (or two) under my calves helped with the pressure on my heels.

For working muscles without fingers and triceps ....there are hand grips which have velcro to attach to bars so that she push and pull weights...not push up because its the triceps which stop the falling down (I learnt the hard way in rehab when my hand hit my face).
There are also machines nowadays which one can use which work muscles in the legs and back when voluntary movement isnt possible.

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outlier
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Physician Advice for a Quadriplegic Aug 3, 2019 22:07:33 GMT -8

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Post by outlier on Aug 3, 2019 22:07:33 GMT -8

John Hopkins is a good place to start. According to google maps, about 8 hours a way. I recommend reading as much as possible because people with SCI are at much greater risk in general. I also am glad you hung in as a friend -- a lot of us lost our friends because they could not deal AKA were traumatized. Of course, we had to deal with the trauma and the trauma of losing our friends. Best of luck and if I think of anything not already posted, I'll post it here.

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Physician Advice for a Quadriplegic

Post by lulu28 on Jun 25, 2019 11:10:36 GMT -8

Post by vintage on Jun 25, 2019 21:41:34 GMT -8

Post by tetra on Jun 26, 2019 7:23:44 GMT -8

Post by lulu28 on Jul 30, 2019 9:30:20 GMT -8

Post by rhinehart on Jul 30, 2019 12:04:39 GMT -8

Post by vintage on Jul 30, 2019 13:16:16 GMT -8

Post by lulu28 on Jul 31, 2019 4:50:48 GMT -8

Post by vintage on Jul 31, 2019 12:04:13 GMT -8

Post by tarabev on Aug 3, 2019 3:15:24 GMT -8

Post by outlier on Aug 3, 2019 22:07:33 GMT -8

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