Re: Finally! A doctor who gets it!

[Guest guest]

Good for you! Cyberhugs. That is a neat development. So glad ithings are looking up for you.

Sara

On Thu, Apr 24, 2008 at 6:48 PM, Tracey White <tracey.white@...> wrote:

I went to see my physiatrist (rehab) doctor today for advice on my pain/pain med issues. Since I'm not sure how much I've told this group about my current issues, I'll give a little bit of background.

I am 32y/o and was born with Spina Bifida, Hydrocephalus and Arnold-Chiari Malformation Type 2. I've had six spine surgeries, 9 shunt revisions, and a decompression for the arnold-chiari. One of the spine

surgeries and three of the shunt revisions took place between January 2002 to the present.In terms of my hydrocephalus, I also have slit-ventricle syndrome, and am *very* sensitive to pressure changes within my skull as a result of

weather shifts.When I first moved to MN, one of the first things I did was find a GP. When I started seeing her in '01, she had just started her practice and admitted she didn't know much about SB, Hydrocephalus, etc., but was

willing to learn. Over all, she's a great doctor and has learned quite a bit about my specific health issues and what's involved in treating them.The one issue we continually butt heads over is pain management...

especially in regard to my headaches. No matter how often I have explained that weather is a major factor in my headaches, she has refused to change the kind or amount of pain medicine she prescribes for me, and refuses to try med combinations. So some months, I may only need

2-3 days of medication and the medicine she prescribes is way too strong for my needs, OR, the medicine isn't strong enough, and 30 pills barely lasts me a week.Well, a few weeks ago, something inside just " clicked, " and it occurred

to me to see if my physiatrist (rehab) doctor had any ideas, so I made an appointment.It hasn't even been 12 hours since my appointment, and I already feel that I made the right decision. After telling him everything that's been

going on the last few months, we talked about everything I have and haven't tried, what's worked and what hasn't.Joy of joys, I've *finally* found a doctor who seems to *really* understands that my pain is multi-factorial, and its going to take a

multi-factorial approach to treat them. He started me on Tramadol Extended Release once a day, and 5mg Oxycodone every 6 hours as needed for break-through pain. He also wants me to try craniosacral therapy twice a week for six weeks. Then I'm supposed to see him again in August

to discuss how things are going.I finally found a doctor who isn't insisting that narcotics do more harm than good and that I stick to NSAIDS (which caused a stomach bleed the last time I used them with any regularity, and even one dose makes my

stomach hurt now). I am so happy!TraceyThe dance of social graces exhausts me to the bone - Levi Kreis, The ReckoningTracey WhiteLoving Life Partner to PiskurBuddy and Pitter's female human

[Guest guest]

Hi Tracey,I don't believe we've talked before, but I agree with you about the GP. I would never trust my pain management to my GP or any GP. I'm kind of in the same position you are, my GP is a new doctor and she had never even heard of some of my problems, actually had to look them up (promised me she'd do that before my next appt! unbelievable! - and I just say that because I was living where I had really good medical care (Dallas), cutting edge technology as far as medical equipment/machines - and now I feel like I've stepped by 20 years in time, doctors who don't know what a condition is, have never had patients on all my meds before, and never heard of some procedures I've had). But I'm wondering why you are using a psychiatrist to manage yourpain.

Before I moved 6 months ago, I went to Pain Management and they handled all my pain issues, I went once a month and if I had problems before my next appt, all it took was a phone call; sometimes we solved it over the phone (with them calling in a different RX or dosage of current one or having me come in early). I did see a psychiatrist just because of my depression; which they say was caused by my extreme pain and stress. I'm not judging you, I'm just trying to understand. I do know that all areas don't have access to Pain Management, like where I'm living now, if I'm going to go (which I will have to and soon) it's 1 1/2 hrs away.... that's a long way to go once a month when you don't drive anymore and I don't know the quality of care it will be. I could drive to my docs before the move, they were all about 5 minutes from where I was living.I've never heard of your conditions and I'm really sorry. We're all on

here because, as my father always told me, I was dealt a bad hand, drew the short straw.....that was the only way he could explain it. I hope/pray for better days ahead for you, me, all of us. Take Care, B. in ILLINOIS Finally! A doctor who "gets it"!

I went to see my physiatrist (rehab) doctor today for advice on my pain/pain med issues. Since I'm not sure how much I've told this group about my current issues, I'll give a little bit of background.I am 32y/o and was born with Spina Bifida, Hydrocephalus and Arnold-Chiari Malformation Type 2. I've had six spine surgeries, 9 shunt revisions, and a decompression for the arnold-chiari. One of the spine surgeries and three of the shunt revisions took place between January 2002 to the present.In terms of my hydrocephalus, I also have slit-ventricle syndrome, and am *very* sensitive to pressure changes within my skull as a result of weather shifts.When I first moved to MN, one of the first things I did was find a GP. When I started seeing her in '01, she had just started her practice and admitted she didn't know much about SB, Hydrocephalus, etc., but was willing to learn. Over all, she's a

great doctor and has learned quite a bit about my specific health issues and what's involved in treating them.The one issue we continually butt heads over is pain management... especially in regard to my headaches. No matter how often I have explained that weather is a major factor in my headaches, she has refused to change the kind or amount of pain medicine she prescribes for me, and refuses to try med combinations. So some months, I may only need 2-3 days of medication and the medicine she prescribes is way too strong for my needs, OR, the medicine isn't strong enough, and 30 pills barely lasts me a week.Well, a few weeks ago, something inside just "clicked," and it occurred to me to see if my physiatrist (rehab) doctor had any ideas, so I made an appointment.It hasn't even been 12 hours since my appointment, and I already feel that I made the right decision. After telling him

everything that's been going on the last few months, we talked about everything I have and haven't tried, what's worked and what hasn't.Joy of joys, I've *finally* found a doctor who seems to *really* understands that my pain is multi-factorial, and its going to take a multi-factorial approach to treat them. He started me on Tramadol Extended Release once a day, and 5mg Oxycodone every 6 hours as needed for break-through pain. He also wants me to try craniosacral therapy twice a week for six weeks. Then I'm supposed to see him again in August to discuss how things are going.I finally found a doctor who isn't insisting that narcotics do more harm than good and that I stick to NSAIDS (which caused a stomach bleed the last time I used them with any regularity, and even one dose makes my stomach hurt now). I am so happy!TraceyThe dance of social graces exhausts me to the bone - Levi

Kreis, The ReckoningTracey WhiteLoving Life Partner to PiskurBuddy and Pitter's female human------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./links Personal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

He's not a psychiatrist; hes a physiatrist. AKA: a physical

rehabilitation doctor. My Partner and I started seeing him originally

because we needed a doctor who knew how to write very descriptive

letters for our insurance to get them to cover our custom wheelchairs.

Our physiatrist uses a wheelchair himself, so he understands a lot of

the related complications.

I was going to a pain management clinic for a few months, but it was two

hours away and they would NOT do medication changes/refills over the

phone. That meant that at least once a month I had to take a two hour

ride sitting up in my wheelchair in a van with horrible shocks because I

don't drive and the company that provides free transportation to doctor

appointments hasn't gotten new vans in forever. Since one of my primary

pain issues is back pain, it seemed self-defeating to ride in a van that

gave me back pain in order to get medicine for the back pain.

I do see a psychiatrist to get my Prozac and Xanax prescriptions, but my

psychiatrist knows even less about my physical problems than my GP.

Tracey

On Fri, 25 Apr 2008 9:35 am, B wrote:

> Hi Tracey,

> I don't believe we've talked before, but I agree with you about the

> GP.  I would never trust my pain management to my GP or any GP.  I'm

> kind of in the same position you are, my GP is a new doctor and she had

> never even heard of some of my problems, actually had to look them up

> (promised me she'd do that before my next appt!  unbelievable! - and I

> just say that because I was living where I had really good medical care

> (Dallas), cutting edge technology as far as medical equipment/machines

> - and now I feel like I've stepped by 20 years in time, doctors who

> don't know what a condition is, have never had patients on all my meds

> before, and never heard of some procedures I've had).  But I'm

> wondering why you are using a psychiatrist to manage your

> pain.  Before I moved 6 months ago, I went to Pain Management and they

> handled all my pain issues, I went once a month and if I had problems

> before my next appt, all it took was a phone call; sometimes we solved

> it over the phone (with them calling in a different RX or dosage of

> current one or having me come in early).  I did see a psychiatrist just

> because of my depression; which they say was caused by my extreme pain

> and stress. I'm not judging you, I'm just trying to understand.  I do

> know that all areas don't have access to Pain Management, like where

> I'm living now, if I'm going to go (which I will have to and soon) it's

> 1 1/2 hrs away.... that's a long way to go once a month when you don't

> drive anymore and I don't know the quality of care it will be.  I could

> drive to my docs before the move, they were all about 5 minutes from

> where I was living.

>

> I've never heard of your conditions and I'm really sorry.   We're all

> on here because, as my father always told me, I was dealt a bad hand,

> drew the short straw.....that was the only way he could explain it.  I

> hope/pray for better days ahead for you, me, all of us. 

>

> Take Care,

>

> B. in ILLINOIS

>

> Finally! A doctor who " gets it " !

>

> I went to see my physiatrist (rehab) doctor today for advice on my

> pain/pain med issues. Since I'm not sure how much I've told this group

> about my current issues, I'll give a little bit of background.

>

> I am 32y/o and was born with Spina Bifida, Hydrocephalus and

> Arnold-Chiari Malformation Type 2. I've had six spine surgeries, 9

> shunt

> revisions, and a decompression for the arnold-chiari. One of the spine

> surgeries and three of the shunt revisions took place between January

> 2002 to the present.

>

> In terms of my hydrocephalus, I also have slit-ventricle syndrome, and

> am *very* sensitive to pressure changes within my skull as a result of

> weather shifts.

>

> When I first moved to MN, one of the first things I did was find a GP.

> When I started seeing her in '01, she had just started her practice and

> admitted she didn't know much about SB, Hydrocephalus, etc., but was

> willing to learn. Over all, she's a great doctor and has learned quite

> a

> bit about my specific health issues and what's involved in treating

> them.

>

> The one issue we continually butt heads over is pain management...

> especially in regard to my headaches. No matter how often I have

> explained that weather is a major factor in my headaches, she has

> refused to change the kind or amount of pain medicine she prescribes

> for

> me, and refuses to try med combinations. So some months, I may only

> need

> 2-3 days of medication and the medicine she prescribes is way too

> strong

> for my needs, OR, the medicine isn't strong enough, and 30 pills barely

> lasts me a week.

>

> Well, a few weeks ago, something inside just " clicked, " and it occurred

> to me to see if my physiatrist (rehab) doctor had any ideas, so I made

> an appointment.

>

> It hasn't even been 12 hours since my appointment, and I already feel

> that I made the right decision. After telling him everything that's

> been

> going on the last few months, we talked about everything I have and

> haven't tried, what's worked and what hasn't.

>

> Joy of joys, I've *finally* found a doctor who seems to *really*

> understands that my pain is multi-factorial, and its going to take a

> multi-factorial approach to treat them. He started me on Tramadol

> Extended Release once a day, and 5mg Oxycodone every 6 hours as needed

> for break-through pain. He also wants me to try craniosacral therapy

> twice a week for six weeks. Then I'm supposed to see him again in

> August

> to discuss how things are going.

>

> I finally found a doctor who isn't insisting that narcotics do more

> harm

> than good and that I stick to NSAIDS (which caused a stomach bleed the

> last time I used them with any regularity, and even one dose makes my

> stomach hurt now). I am so happy!

>

> Tracey

> The dance of social graces exhausts me to the bone - Levi Kreis, The

> Reckoning

> Tracey White

> Loving Life Partner to Piskur

> Buddy and Pitter's female human

>

> ------------------------------------

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

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> Message Archives-/messages

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> receive.

> 2) Daily Digest - sends you 25 messages in one single email for you to

> browse. This is an excellent option if you receive alot of email.

> 3) Web only/No mail - means that you can pop into groups at your

> convenience and receive no email.

>

> To modify your subscription settings please visit:-

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>

> To subscribe or unsubscribe please email:-

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> This group is not intended to diagnose or treat illnesses.  No one on

> this group is qualified to diagnose medical conditions.  If you feel

> you need medical attention, seek the advice of a qualified physician.

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> When nothing is sure, everything is possible.

>

> --- Margaret Drabble

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

>