[CrazyLucky]

Hello Everyone,

This may be common knowledge to some, but it was new to me so I thought I would share and invite any comments, advice, or differing opinions...

I recently had 5 of the worst days I have had since my injury. I am not sure what brought it on, but I was doubled over with spasms, temperature regulation was all over the place, changes in bowel/bladder behavior, lots of pain, and psychologically it crushed me...so I decided to make some calls...

For two years I have been seen by an orthopedic surgeon who I was referred to from my original surgeon (surgery/injury was out of my home state). I had only been given Lortab (vicodin) for the 1st year and a half of my recovery. At that point, my injury more or less declared itself and I was finally placed on Cymbalta and Lyrica. Over the course of the two years, I found that my interactions with my orthopedic were very frustrating. I saw him infrequently and was rarely given the time to go through my questions and concerns thoroughly. Most of them had to do with neurologic issues, and he would generally say, "well, maybe we can go up on this med", almost as though he expected me to decide!

After the past five days of phone calls not being returned and his office gatekeeper refusing to even ask him to refill my lortab since it had been over 6 months since I'd seen him (this was the docs timeframe to visit, not mine), I decided to look elsewhere.

A friend of mine is an NP on a neuro ICU at a renowned trauma center. Within an hour of our conversation, she had two neurologists set up to see me and CT and MRI ordered (I had never had one since my initial injury...they were shocked!). Without even seeing me they stated that my medications were likely inappropriate for my symptoms, that a different medical regimen should have been started long ago, and that the level of care being provided for my type of injury was inadequate from the start (including too early of a discharge form my initial hospitalization).

So, I'm dumping the orthopedic and going with neurology. It was very interesting to note that neurologists typically deal with C-spine injuries due to their complexity, and orthos normally deal with everything below because they tend to be easier to manage (not sure if this is the case everywhere). The neuro docs said that orthos tend to be reluctant to "give up" their patients to neuro, even though the bones have healed, and most symptoms are related to neuro issues.

I'm curious if anyone else has run into similar issues. I am also curious if those seeing orthopedic surgeons have had similar frustrations.

Sorry this is long winded, but I thought it was important to share in case others (especially those newly injured) are essentially being treated ineffectively for neuro issues by ortho docs. This is not to knock those docs, they serve a very important role, but it doesn't mean they are the only option.

I have seen similar situations in my work life, where cardiologists can be very reluctant to send patients to cardiac surgeons for surgical intervention. It's so damn unfortunate.

[greybeard]

So far I haven't had any surgery, but I vividly remember being told by a PT that if ever she needed any spinal surgery, she would have it done by a neurosurgeon - never by an ortho. She was adamant about this. I think I would be guided by her advice if it ever became necessary, assuming I had a choice.

[Jax]

Both of my surgeries were done by orthos. The first was by a good ortho, the second was by an incredible ortho who works closely with a neuro. I have to say, I like the one that did my second surgery. His name is Dr. Mark Rahm. He extended my fusion. When there were 3 other orthos and a neuro that looked at my X-rays and didn't have a clue what to do, Dr. Rahm was the person they called upon. He told me I had a choice of having my surgery on the 20 or the 22 of March (2007). That was the first week of March, and I saw him the day before the surgery for a final scan. Had the (9.5 hr) surgery the next day, and haven't popped screws out of another vertebra.

I spent 5 weeks in hospital-9 days in hospital, and the rest in "rehab."

I think it's all about the individual doctor. I've met a lot of quacks, and some docs that are really good, but the general thing I've found is that there just are't many doctors who know much about long-term SCI patient care in general. Very few do much beyond the initial surgeries or referrals. I haven't seen the ortho that did my first surgery since he saw the X-rays of my back that showed I needed the second surgery. I haven't seen my urologist in over a year, I have seen 1 neuro 1 time (right before the second surgery), have been to several bowel docs (who are all fairly clueless as to treating SCI bowel issues), and haven't been back to see the doctor I had in rehab but for an appointment to keep my insurance (which I'm not really sure was worth it). Also, this ortho of which you speak sounds like either a total jerk, a lazy ass, or a moron. I'd have told him off a long time ago and found somebody else. Besides, with the particular symptoms you're describing, your ortho should have referred you to a neuro already.

[Tetracyclone]

I'm glad you started this thread as I now realize I should make the journey 70 miles to the nearest rehab center once a year and discuss meds with a neuro who is familiar with treating SCI folk. Locals are mainly clueless.

[dangerousdave]

I give thanks that back in 73 it was a ortho surgeon that went to work on me
In those days we were sent to lie on a board for the damaged area to fuse in a so called spinal surgery specialist hospital
Thank you Mr Lighthowler for all those hours on the operating table and taking the trouble to perform surgery that was at the time, just theory.

[MxDisasterGrl]

Hey crazy!!!

The moment i had my accident, after calling 911, i directly called my good friend who is an awesome ortho doc here. He was the one who saw me in my small town ER. I asked him if he could do it and he said, "no hun, but i have a great neuro doc waiting in alex for you.". However, after i got out of rehab and everything and came home. I only went back once for my 6month check up x-ray. That was the last time i saw a neurologist. He was a jerk, i didn't like his PA either. All he would really do is flirt, and i wouldn't get many questions answered. Since the ortho, and anesthesiologist docs here are good friends of mine, i just decided to let them prescribe everything i needed. But all the anest. did was keep me on what i was already on. WHile uping the doses getting me highly addicted to the fentanyl and lyrica. So, i made the choices on my own what to stop, what to lower, etc. Then i just started talking to my ortho friend about it all and dropped the other friend. But i do have to say, even though he knows a lot about my bones and outcomes and the drugs, i do sense sometimes that my questions are a bit too much for him to answer. Just differ. questions like, i can move this toe now, what do you think? Silly things. He's great, but i'm the one that took charge of my meds. He helped me to get off the fentanyl w/ the methadone. That worked GREAT! But i haven't seen ANY docs, no one for bowel, no one for bladder, no one for my back x-rays, no one for therapy, and no one else for drugs. I pretty much maintain things myself. And now i'm COMPLETELY DRUG FREE!!! Yayah! That's right, as of 2 1/2 weeks ago, i'm off of everything. Including baclofen!!! So, i'm happy about that. This nasty weather does have me down some days, but i just pop some ibuprofen in and go on w/ dinner! I guess it all depends on the docs in your area. Some are more involved in some area than others. I can't believe you went through what you did. I"m sorry for that!! ttyl,april