8 replies to this topic

[McRobb]

I have been wondering about this for some time but did not know who to ask and now I know this is the place to ask it. Who do you go to when you need a doctor?

Let me explain. During my rehab, I saw the doctor there at the hospital who was the resident of the unit. When I went home, his office made me an appointment to see him in a month, then three months, and then six months. I made those appointments as I had some lingering health issues from my accident and an infection that I thought he could help with. But, it seemed to me that he just referred me on to another specialist whenever I had a question about much of anything. At my six month checkup, he told me that he really should see me every six months, even if I had no issues. Well, when I got his bill, I knew why he wanted to see me so often! So I have not been back.

I have a local doctor here who has not had any other para's as patients but is willing to learn along with me. I see him for colds, etc. but there are things that he does not know about, I know.

Do you go see a specialist in paralyzation? How often and for what? Do they actually do something for you or do they send you to another doctor to deal with any thing that comes up? I would like to know how the rest of you handle things. Thanks for the help.

[Jennii]

I've always just had a general physician like I'm sure anyone else pretty much would. For anything specific, he just refer me to a specialist (like you said). I'm sorry you got handed one of the many buffoon doctors out there. I'm sure you should be fine with your local doctor — if not, be quick on the draw to change! It's your body, and nothing should have to be compromised.

[percepied]

I'm fortunate to have access to both a GP who has a number of SCI's as patients and the outpatient clinic at Craig Hospital, a rehab facility specializing in SCI's.

Initially I went to the GP I was seeing prior to my injury. He basically was clueless regarding the special medical issues related to SCI. I'm certain he was aware of more than he let on but his specialty was family medicine not physiatry. In other words he didn't have the time to acquire the knowledge necessary to treat me.

Nor did his staff and there's the rub. If you must depend on a GP with limited knowledge of SCI, it is YOUR responsibility to educate the doc and her/his staff. If you have a willing GP, you are more than halfway there.

So educate yourself on UTI's and skin issues (the most likely scoundrels) and know how to handle transfers, etc. If it's something else related to your SCI or the aforementioned get funky, I would suggest seeing the specialist. (But be aware even they may need some educating. ;~}

[Joed]

I couldn't agree more with the above post....when it comes to GP's, God bless 'em....generally we'll find ourselves in the position of the one being the expert in our spinal 'stuff'. I've found that even neurologists are sometimes limited in their exposure to certain neuro issues...There was one neurologist who once told me that tethered cords, once treated surgically, do not re-tether. I knew better....and knew to run, not walk, out of that office and find someone who knew what they were talking about.

Before my paralysis, I had mentioned my increasing neuro-symptoms to my GP for about two years, yet he wasn't compelled to refer me to a specialist. I often got the attitude of: well, you do have spina-bifida, what do you expect? But I now know that any neuro or functional changes were not a normal progression of my condition and should be investigated for cause. I wasted a lot of time with so-called experts, and probably lost some function that I'll never get back.

Having said that....it's fantastic that your GP is willing to learn about your condition....that's huge. I wish mine were as willing. Now, he usually defers to me if I think I need to see a specialist for any SCI related issues. I continue to see my neurosurgeon at least once a year....I feel that he has the best grasp of things and takes a comprehensive view of my condition.....(also, he's not influenced as much by my HMO, since he's out-of-network).

[gsp23]

I got to my neuro and happen to have a great one (although he is leaving the practice to head up a new sleep clinic in town in a couple months so I am pretty bumbed about that). My current neuro is the one who saw me in the ER and I went back to him after being discharged from the hospital. I started out in a local hospital and was transfered down to the Mayo Clinich where I finished of my treatment and inpatient rehab, and they wanted me back there again for followup but I wanted nothing to do with driving 4-hrs for a followup. My neuro has been awsome and if he doesnt understand something then he is the first to admit it and recommend a specialist.

My GP on the other hand is a great doctor but he doesnt have a clue about a lof of the things going on with me such as telling me that I should get over bowel issues, muscles spasms are just a new way of life that I just have to deal with and he wouldnt perscribe any Baclofen or the like because he didnt want to give me constipation and delay my bowels returning to normal again. Also he tells me that my pains will just go away on their own and to not worry about them. I tried to explain to my GP but he just doesnt get some of these specific issues, but thanks to my neuro I got the meds I needed to function.

Now that my neuro is leaving he said he could just refer me to my GP if I wanted or to another neuro at the clinic, I asked him to refer me to another neuro at the clinic and I trust him to make sure he send me to a neuro that will understand my condition.

[Texaswheelz]

I started out ok with my Dr. then had a long rough patch after moving, going from Dr. to Dr. then back to ok the last few years.

After i got out of rehab I moved back to a small town with family to finish high school and saw a family doc who was great, i was his first para patient but he was a learner and always had new info to share with me when i saw him and listened to me when I had something to tell him. I kept going to him even after i graduated and went to college about 4 hrs away. I ended up moving to far away in 2000 and thus started my search for a half way decent Dr. in the city. After 4 years living there I never found one that had a clue nor wanted one. I would be sent in for test and they wouldn't even have the results when I came back to visit them weeks or sometimes months later. I'd be sent to the rehab to have the physical therapist check me out and then the doctor would forget they even sent me or wonder why I had been. It was a horrible 4 years as it is when I started having back pain and never had found a Dr. that could help with it.

Then I moved again and started seeing a general nurse practioner, she was great, had to get some stuff ok'd by a Dr. but as far as some one listening to me and giving me the feeling that they gave half a damn instead of just waiting on their payment, she was awesome. Was actually the first time I'd had alot of check up's done that I should have had a few times since being injured. Hated to move and lose her.

Now I'm in Dallas, the first thing I did when looking for a Dr. was call Baylor Rehab and ask them if they had a Dr. there that worked with Para's, Quad's that also saw patience that weren't in rehab. So far I've only met with him twice but he seems knowledgable, as he should be.

So from my experience, being a Dr. at a large hospital or even with a big practice means nothing when it comes to meeting the needs we might have. My best care has come from a nurse practioner and a small town doc, who both had never had a patient that was a para or quad. Not saying you won't find one that is just as good at a larger practice, but they generaly have so many patients that they really can't remember you from the last guy they saw.

[McRobb]

Thanks for your input, everyone. Reading what you have been through has really helped me and the GP that has said he will work with me does give a darn about me and is great at listening.

I guess I will stay with him and he will refer me on as he sees fit. Best wishes to all.

[WheelsWithAttitude]

just go to my regular doctor, for regular checkups.
For anything else, like annual bladder control and so forth, he refers me over to specialists at the hospital or their offices.

Edited by WheelsWithAttitude, 19 February 2007 - 11:20 AM.

[hotwhlz]

I also go to a good GP for most health issues. I also have a urologist with SCI experience for bladder issues. One thing I would recommend, if you have a sore, find a good wound care clinic. The local one here has a nurse practictioner and she is very good. Because all they do is wound care, they are up on all the latest treatments. May save you from having to do surgery.