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xenon
02-21-2008, 11:07 PM
I have some questions that I hope some of you can help me out with if ya don't mind. Here's some back info on me.

Currently 22, male, no other health problems except an inactive heart problem which I don't have any trouble with. I was diagnosed with scoliosis around age 15, then it was about 20 degree's. Last I saw a scoliosis specialist (about 1 year ago) it was around 32 degree's. I live in the DFW area currently and have a full time job with decent insurance. (Moved here about a year ago)

When first diagnosed I had very mild pain, ibuprofen would solve all my problems. About 3 years ago after trying every non narcotic pain med available my pain management doctor started me on vicodin. I was taking 5mg a day and would be good. My dosage has slowly gone up of course, I'm now taking 30-40mg a day of vicodin (10/325) My pain is getting worse even with taking the vicodin, I tend to stay home more and more and lay around due to the pain. In the mornings it's got to the point where it's hard for me to get out of bed if I don't take pain meds before I try to get out of bed. I'd like to see another scoliosis doctor here in Dallas to check on the curve and see what he thinks about possible surgery. I was always very opposed to this in the past and all the doctors I have seen so far said at this point they would not recommend doing it yet. The pain is getting to the point where I'm going to consider it now though.

Can anyone recommend a good doctor in the DFW area?

The other thing is I'm currently seeing a pain management doctor here and I'm thinking to look for a new one. The last 2 times I have been in to see him I have told him this isn't working anymore, I'm in tons of pain all day and I need to try something different. Whether that's more vicodin or different pain medication I don't care, whatever is best. Each time he has simply said there is nothing else he can do for me. I know there is as I've read and studied a lot about scoliosis and different pain meds people take along with reading on here a lot. Do you think I should look for a different pain doctor? Can anyone recommend anyone in the DFW area that maybe specializes in spine pain and can hopefully relate with the pain I'm in and help me try alternative pain meds until I eventually have surgery?


Thanks in advance for any help you guys can give!

txmarinemom
02-22-2008, 09:07 AM
... The other thing is I'm currently seeing a pain management doctor here and I'm thinking to look for a new one. The last 2 times I have been in to see him I have told him this isn't working anymore, I'm in tons of pain all day and I need to try something different. ... Each time he has simply said there is nothing else he can do for me. I know there is as I've read and studied a lot about scoliosis and different pain meds people take along with reading on here a lot.

Xenon, remember ... there may be 1000 different methods out there you've read about - and work for others - but it's no guaranteee simply because they exist, they'll be effective for all patients. I say this not to discourage, but to gently remind you your doctor may not be mistreating you because he hasn't tried every treatment of which you've read.

I *really* feel for you: My pain mgmt doctor (also an Anesthesiologist) tried every drug/non-drug trick in the arsenal on me for over four years (some of the procedures like rhizotomies and FJ injections *several* times). Only someone who's been through it all - and has had your doctor sadly shake his head and say "I've tried all I can with you, and there's nothing I can do anymore." understands the utter despair of "I'm only 32 years old .... what NOW???".

Just a few thoughts, and perhaps you're already ahead of me:

- If your doctor isn't an Anesthesiologist, and you decide to search for a new PM doctor, make sure the next one is. Just me, but I'd *have* to try to let at least one more doctor help me - especially if the first doctor's primary treatment modality consisted of throwing meds upon more meds. There's so much more to modern pain management

- When interviewing new doctors, get their explicit opinion on Eastern medicine and their views on how it may compliment traditional Western medicine. When my doctor sadly told me he was out of ideas, he referred me to a Vietnamese MD for accupuncture. Although the results were fantastic the first few months, they eventually tapered off. Regardless, it did give me a small break in pain (the longest I could recall, in fact), and I was so grateful for the rest. I'm sure I'm preaching to the choir when I say chronic pain wears you down like nothing else I've ever experienced.

- Have you tried yoga or pilates? Sometimes active methods can provide relief in ways that passive treatment can't possibly.

I hope you find someone to help!


-

nzgirl
02-22-2008, 03:28 PM
I also had good results from accupuncture, having been on a lot of opiates... I also found that the results were good for a short time, but tapered off after a while.

I also was started on amitriptaline (sp?), a sub-therapeutic dose of antidepressents which when are in small doses can have great results for chronic pain. I know how some people feel about anti-depressants, especially when you have REAL pain and it sounds like someone is saying that it's in your head... but this treatment is giving 1/10th the dose for depression, and it works on nerve pain. I found I had NO pain for about a week once I got the dose right, but the pain did come back. .However, I found that it reduced the reactivity of my back, so I wasn't getting big flare ups like I was.

The other good one is gabapentane, however it didn't really help me much.

As for physical activity, I began walking in the pool which was really helpful, building up to swimming. I found that it reduced my pain, although was hard to get the motivation to go given how much pain I was in. I perservered, and did find it really good for reducing pain. I would suggest if you were to try this, find a PT who is certified (or knows about) aquatherapy. I had to start at a low level and build up, but it was really helpful. Once I got to a good level with that, I began pilates, which was really good too. I'm currently rehabing from surgery, and am back into the pool with water walking.

Good luck with finding another doctor :)

txmarinemom
02-22-2008, 03:53 PM
NzG ... and everyone doing pilates/yoga ...

How long did your surgeon generally have you wait post op before letting you start this?

Regards,
Pam

trulyaries
02-22-2008, 04:24 PM
The ladies who wrote "Pilates for Fragile Backs" recommend that you wait a year before you start Pilates. Since my doc is so conservative I won't be able to do anything but walk for quite awhile. BUT I PROMISE I'LL DO EVERYTHING HE SAYS. No more surgeries for me ... ;)

xenon
02-22-2008, 05:30 PM
Thanks for the advice so far. If anyone in the DFW area on here can recommend good doctors I would really appreciate it.

I've done tons of physical therapy, it seems to help a little but not a whole lot. I also tried acupuncture, it helped for about a month and then nothing. I also tried the chiropractor thing which did help quite a bit but as soon as I would have something come up, go out of town etc and have to miss an appointment or two I would be absolutely miserable so I'm no longer doing that.

Right now I'm doing yoga and a lot of stretching which does seem to help some. I've noticed it reduces the pain a bit when I'm doing physical stuff but the pain in the mornings which is what bothers me most it doesn't seem to do anything for. In the mornings my whole back hurts, just everything, if I don't take a pain pill it usually takes me an hour or so to get stretched out and moving around. I feel like I'm about 90 years old in the mornings until I take something.

nzgirl
02-23-2008, 04:32 PM
TX, in relation to pilates, the surgeon told me to 'do what feels comfortable'... I'm just doing leg exercises on a light resistance on the reformer, and so they are fully supported in terms of my back. Plus I'm doing under the supervision of a PT. I think that the advice in pilates for fragile backs is sensible, because everyone is so different and people using that book would most likely be working unsupervised. They have to cover themselves in case people get an injury and then sue them!

I was doing pilates pre-surgery too, and that is what I was recommending for pain management for pre-op people!

betsy
02-26-2008, 04:24 PM
xenon,
I really don't know anything about pain management docs in the dfw area, but I'm pretty sold on my prospective surgeon, Dr. Alexis Shelokov and his partner, Dr. Richard Hostin. Dr. Hostin is younger, but very personable. I feel comfortable with both. You can access their website at consultingorthopedists. com. Their office is in Plano and they do surgery at Baylor Hosp. in Plano. Good luck!

Betsy

KScribe
03-07-2008, 08:53 AM
Xenon,
I wrote directly to the National Scoliosis Foundation and gave them my location (Fort Lauderdale area in Florida) and they responded with two specialists in adult scoliosis who work out of University of Miami. It's about an hour's drive for me, but I am definitely going to consult with them -- there is no one closer to me who specializes in ADULT scoliosis (just adolescents) and I want to talk to someone who deals primarily with adults.

I've also been through the pain management doctor "game" and have finally (thank God) found one who is compassionate and takes his time talking to me and who finally "gets it" -- he himself has had two hip replacements and understands perfectly what chronic pain is all about having been through it himself. I think this is really vital because the other pain mgmt docs I had seen, although somewhat helpful, just didn't fully understand what I was going through.

I suggest contacting the NSF by email or calling them -- I'm sure there are specialists in the Dallas area that you could consult with. I would also ask them about pain management doctors - they may be able to help with that as well?

Wising you luck on your quest -- let me know if NSF was able to help you out. Sure hope so! Kevin

StacieB
03-20-2008, 08:37 PM
KScribe,

Can you tell me which doctors in Miami were recommended to you? I live in Miami and am looking for a doctor to get a second opinion from.

Thanks for your help:)
StacieB

CHRIS WBS
03-24-2008, 11:57 AM
Hi Stacie,

I’ve become acquainted with a woman from Florida who had revision surgery two years ago in Miami by Dr. Michael O’Brien. She suffered for years with flatback syndrome from an old Harrington rod fusion that was done in Chicago in the late 70s. She highly recommends this doctor and could not have been more pleased with the results.

Chris

StacieB
03-24-2008, 03:06 PM
Thanks Chris! Anyone else with any Miami docs?
Stacie