51 replies to this topic

[Apparelyzed]

Once you have left hospital, when you go to see your local doctor, do they understand important issues regarding your spinal cord injury?

[monikamadrid75]

When we went to the doctor in August for a routine check-up and suspicions about a UTI, the doctor was very open about the fact that he had no idea about caths, bladder issues, AD, or anything for that matter. However, he is very open-minded and keen to help and learn, and referred us to someone 'in the know'. Jeremy has the disadvantage, however, of being in a small town where there is not a lot of access to doctors with knowledge of SCI, and the nearest big town for that is Brisbane, 4 hours away. I get frustrated, never mind him....but he's patient, thank God. I start to need a lot of soothing sometimes, and he's the one with the SCI!

It's a pity really, but I guess it's up to us and our partners to be extra vigilant, patient, and educative as there is often no other option. Sometimes the most important thing is to have someone who listens carefully and takes you seriously, just to get the ball rolling when it comes to medical care.

[mttb14]

We regularly find that GP's do not understand an incomplete SCI. John's cord is flattened on the left side at C5/6 and because he can walk and move about, his main complaint is chronic 24 hour pain and tight tendons in his arms and legs which then mean he struggles to walk or hold things or use his arms. He also has the internal problems with bladder, AD, etc, but because it can't be seen then its obviously not a problem.

One GP told him to take up speed walking to lower his blood pressure, he tried about 5 times to explain about his tendons and still she didn't understand. Rheumatology Dr sent him for intensive physio, 4 days a week - 4 hours a day, he was seen by the physio for an assessment and they altered it to 1/2 hour a week and they gave that up because it was too much for him, he nearly passed out on several occasions.

Now we just monitor it ourselves and try to see the same GP which isn't easy and he carries the AD card, which works a treat. The fastest bed in the hospital, no waiting, just straight into a ward.

Maria

[darrel]

I found my GP after my accident, but I'm not sure she understands as much as I'd like her to. but in the same token my theropy Dr. Probably doesn't know to much about heart problems.

[russ1]

I've been really impressed with my GP since being SCI. They seem to understand what's going on and are willing to listen to me. However I've not had any serious issues with which to test them properly. (Touch Wood)

[wheels5894]

Yes our practice is very good though I have been aided by the local urology consultant. I think they are happy to learn a bit and work on a problem. Some of them ring friends in hospital practice first which seems fine to me.

[smokymtn memories]

Mine is a retired doctor doing volunteer work at the clinic I go to for people with no health insurance. If it were'nt for him, I would'nt be walking with a cane. I did'nt know I'd fractured my neck and even had an old injury compressing my spinal cord.

He managed to get me seen and treated without insurance. To be honest though, I don't know what he did before retirement. He sure knows a lot of doctors in the field of Neurology? I'll have to ask him...

[rkzenrage]

No one really understands why I am as sick as I am and why so much is as wrong with me as it is.
"Probably genetic" is about all I can get.

[dom]

my doc is ok but she does'nt understand about sci,she suggested a colostomy bag and an indwelling cath,? i am a walker and told her i prefer intermittents and a colostomy bag was out of the question!!maybe its a cost cutting exercise?i get through 6 boxes of caths a month[25 per box]i buy latex gloves though as these are better[easier insertion] than the plastic ones

[hockeydahc]

my doctor pre accident had a stuck up personality, and lacked care(bedside manner) so she was history right away. during rehab, my SCI doctor was also able to be my general. she was as lovely as could be. I miss her terribly since she transfered to Baltimore. The clinic in the rehab facility provided other great doctors, and my new one is great, and reccomended an SCI knowledgeable doc. I like her too.

[nomis]

I’ve had a bunch of doctors over the years, changing whenever I moved. There’s a couple I wish I could have held on to. When it comes to SCI I expect them to be a bit dumb and so it’s my job to tactfully fill them in or point them to where they can get info (usually one of the spinal units). But they’re a sensitive lot and often try to bluff there way which is stupid.

I’m currently changing doctor. The last time I moved some six years ago I couldn’t bear to lose the good doctor I had but the distance is becoming too great and will get worse as the oil shortage kicks in. So I’m shopping for a new, more local recruit to train.

[Lee]

Neither my gp or hospital doctor understand my problems and dont even care. I had a miss diagnosed internal spinal tumour which means i was treated as a neuro case and never had any contact with spinal units or there good advice. When i said i was having probs going to the loo for a dump all the hospital dude said was we can give you and opperation for a bag to be fitted. I wasnt happy. I am currently going to write to my gp asking to be referred to a spinal unit as a good friend has already asked them and they are willing to see me if reffered. So no, gp and hospital are useless.

[Joed]

My GP is basically clueless. He does try to impart what he knows to me, but it's the basic stuff I've known for decades, so I just nod my head. Much of the problems I have in accessing health care due to SCI issues derives from having an HMO. They are quite resistive to going outside of their own networks, and those in their network do not specialize in SCI. In an HMO, the doctors are penalized for overextending their allotted yearly referrals. Not a very helpful system at all.

My NS wants me to be seen by a neuro-optimologist, but my GP didn't even realize there is such a specialty, so he sends me to an optimologist instead. At my last NS visit, he once again stressed that I needed to see a neuro-optimologist, not an optimologist....so I'm in the midst of trying to battle the giant.....again.

[smokymtn memories]

Don't feel too bad about the ignorance of some of your GP's. I did'nt mention the young lady I had at the clinic before the one who diagnosed me. I went in three times during the spring/summer that I was loosing the ability to walk/bladder/bowel, and the most help she could give me was"you need to eat a bananna a day, get a mamogram, and a bliood test. Now, I ask you, what the hell did that have to do with the pain, falling, and all of the above mentioned?

[wheeliebear75]

My Dr. just treats the symptoms that come up. He doesn't look at it like a package deal; each thing is looked at individually(pain is 1 issue, neuropathy is a whole separate issue, as are leg spasms.........I think it'd be better to see it all for what it is..........all part of the SCI).

[hanguk]

I go to a nurse practitioner for routine things and gyn checkups. She does indeed seem to understand spinal cord injuries pretty well (she doesn't get amazed when I have spasms). But I felt I needed more specialized care (it's been 20 years) so I went to the nearest SCI rehab place which takes a while to get to, and there I have an occupational therapist to check on my wheelchair and cushion, I had a DEXA scan and am now on medication for osteoporosis, and am being followed by a urologist to make there's nothing wrong with my kidneys or bladder. The worst experiences I had with doctors was when I was pregnant. The doctors who took care of me were mostly residents. The first got annoyed when I told her I was especially susceptible to urinary tract infections in pregnancy, and later on the same doctor got annoyed because I was having spasms in my legs on the exam table, making her exam difficult (stop doing that!, she said). I was also informed by another doctor that 1 baby would be enough for me...and after a discussion with a social worker about how I would manage a baby at home, in which I told her how I would do that, she asked me if I was sure I could do it and wanted to keep the baby.

[RaginTurtleHead]

One of the first times I went to see my urologist.... I was there in my wheelchair, in my back brace, and with a cast on my leg.

The receptionist asked me if I could step onto the scale, and was serious. The urologist had seen me while in the hospital, they were aware of my injuries

I found a new urologist

[Mikerowaved]

I have a local GP that I go to for 80% of my illnesses. He's pretty well informed on SCI, but I also go to a "real" SCI rehab specialist a couple times a year for my serious checkups. He makes sure my bladder and kidneys get their annual screenings and stuff like that. I would go to him more often except he's about 25 miles away and because he's a "specialist", the office visit copay for him is 3x what it is for the GP.

[knowthill]

Apparelyzed, on Sep 25 2007, 09:50 AM, said:

Once you have left hospital, when you go to see your local doctor, do they understand important issues regarding your spinal cord injury?

Have decided to go to a Veterinarian (Animal Doctor) at least they are used to working with patients that can't tell them where it hurts.

[Kwag_Myers]

I think I might be my GP's first SCI. Maybe not, but I go to Physiologist for the SCI stuff. Added bonus - my Physiologist is a quad, so I know he knows what he's talking about.

[Trinity]

Can I change my vote please!

I originally went for the second option now having just got back from my GP I want the 4th option. Stupid, over paid, lazy, useless, pen pushing

There, thats better, got it off my chest now!

Tx

[alwyen]

not sure how relavent my vote is as im spina biffida but i have to be honest my gp looks confused if i go down there concerned about somthing and get told im to complecated and to talk to my hospital even if it's not to do with my sb

[wheelinmom]

my answer is no...my doc is great, willing to do whatever to help me, fact is he's clueless to sci, and doesnt know who to refer me to. i cant even get on the examining table because of its highth. im really not sure what kind of a doctor i need, i have a urologist because my sp catheter gets changed every month, other than that im sol.

[MTB John]

I try to find out what the problem is and how to resolve it on this site first. Then tell my GP what I need..

Thanks by the way,
J

[rattrap]

ii give a resounding no i only go to my GP for benign things like a wart or a flu shot. i have a physiatrist who specializes in sci. before i had a physiatrist the GP was completely incompetent but thought he knew all, he tried to change my meds and take me off others that were helping. i recomend finding a physiatrist that knows sci if youre having medical problems. ive actually had two different doctors who were in wheelchairs themselves. unfortunatly both retired for health reasons, but the were in their 60's.

[cathie]

My GP can't get his head around the fact I have a SCI and still have some movement. in his words "but if you have a sci you should be completely paralyzed" Has no clue about bowel, bladder, pressure, lung, spasm, pain or AD issues. Generally I have to explain things to him as they come up

[quadinva]

I havent seen my gp since ive been paralyzed (didnt really go to him before for that matter)...i see my rehab doc every year, i dont know if he should "replace" my gp or not, but i seem to be healthy enough. Urologist is another story, friday will be my 4th visit in two weeks. no problems just routine tests. gotta make sure those kidneys remain healthy.

-Bags-

[pistol_pete]

My GP is fantastic. She knows everything about SCI.
She has been in a chair for seventeen years. she was a real find.
She's moving to a new town about 5o km away.
I'm thinking of making the extra drive to keep seeing her.
She is actually the only person in a wheelchair that I have any contact with.

[greybeard]

As a matter of interest, has anyone given their GP the web address for Apparelyzed ? ......... and if so did your GP make the effort took at it?

Edited by greybeard, 10 November 2010 - 08:07 AM.

[jenny407]

greybeard, on 10 November 2010 - 08:07 AM, said:

As a matter of interest, has anyone given their GP the web address for Apparelyzed ? ......... and if so did your GP make the effort took at it?

Believe it or not: Before reading this, I just wanted to write the same. True.

How hard can it be to read around this forum - if this is part of your JOB? Obviously, there are books on the subject, too. I find this lack of interest and of sense of responsibility appalling. Even IF a doctor didn't know anything much before having SCI patients (bad enough, in fact!) - how about getting informed WHEN they actually have one (or more)? Can't you insist your GP gets informed? In a polite but firm way? It's your right.