Hey I'm new. i'm looking for some info
 

Hey, My Name is Jamie. I've just joined here.

I'm doing my best to be brief as much as i can about this journey i've been on for the last 14 years.

Briefly; here's my story, I hope i didn't drag on too much. I apologize if so.
Currently i'm having my pain pump removed on april 29th.
I'm 22, i have has R.S.D./C.R.P.S. since 1999 wen i was 9, when i severely tore a ligament in my arm and it was replaced with a cadaver ligament. After the accident, My pain set in shortly.


I have done everything to my knowledge to try to lessen my pain.

I was not diagnosed for 5 years after my injury, was told i was faking etc. My pain, first only in one arm, my pain began to spread. In the end it went to stage IIII Full Body R.S.D./C.R.P.S. I also have TOS.
At 16, id had a total of 5 SCS's in 2 years, not counting a dozen prior surgeries.
Currently I've had dozens more similar operations and procedures
5 years ago, I was given my last option; an implantable pain Pump. I opted yes.
After 5 years of failed attempts of conventional pain meds and experimental stuff like high dose Prialt via the pump;(which i almost died from) i've decided to have it removed.
My Dr and i have tried every known combination of oral and intrathecal pain meds at various levels without help and many side effects.
Its become clear the pain pump isn't working for me and is causing more problems than helped.

Now, after 10 months of hard work weaning to lowest possible level the pump would allow, two months ago my Dr and i turned the pump off.

Now, today, I'm 60 days no pump meds that id had for 5 years, i'm pretty stoked. I've worked through so many horrible withdrawals to get to today, to right now.
I'm now scheduled for the removal of the pain Pump on the 29th.

My concerns; I haven't had a surgery for 5 years since my condition worsened and i'm sorta concerned what i'm facing here in less than a week.
I've yet to be given any information or what to expect.... How long ill be in surgery, how many incisions my recovery or anything on afterward stuff....I didn't get to even speak with my dr when i scheduled it. Annoying.
Can anyone share their experiences with this types of surgery, with surgery with having RSD at this stage?
I'm also just introducing myself as i'm new here and am looking to talk with other people. :)

Jamie It's important that you have pre-emptive analgesics prior to the op to prevent it causing spreads. The best I've read of is a continuos full sympathetic nerve block, for amputation its 48hrs pre to 48hrs post.

I too have heard of this. Thank you, I wish my asking would be worthwhile but im lucky to get any sort of pain relief from my dr.
My dr i think doesnt believe i have the pain i do, let alone stage 4 RSD.
His actions speak louder than words.
He drastically has cut my oral pain meds on top of the pump being discontinued. During the initial pump pain pump turn off was some of the most horrible 4 weeks i remember and i still do have really bad days like today.
After surgery, I will be lucky to receive post op pain meds in recovery and ill be shell shocked if they send me home with any.
Ive never misused or been tested positive for anything besides what i was prescribed and at correct amounts. I have found no good reason for this kind of kick ya to the curb treatment.
This dr diagnosed me but is not willing to treat my pain appropriately. Im removing the pump also bc it will open up my options for a new dr.
I hope surgery and recovery goes better than im expecting, but right now with taking my meds, im lying in bed after relaxing all day and napping too, and my pain is so extreme, i can hardly think. through every nerve in me and i cant even think of a week from now how ill be feeling....:(
Jamie

Hi Jamie,

Sorry you've been going through such a tough time for so many years, must wear you out... Just my opinion, but your doc doesn't sound like he's doing his job properly, the most basic rule of CRPS is to treat the pain appropriately - and of he doesn't want to give you pain meds or discuss your hospital anaesthesia options then he is being downright mean. It is so important after all your problems and spread, that they give you decent pre-op pain treatment, and extremely good post op care, including whatever you need when you go home. I would be very wary of going on for the op without knowing how they are planning to deal with your pain. This stuff is just way too important...

I wish you all the luck in the world, and good for you on coming down on the pump relief to this stage. That's one long hard road!

Hope your op goes well and you get some answers and reassurance before you go in.:)

Bram.

Hi Jamie
 

Brambledog is very right in what he said. You need good communication with your doctor, and have all the issues adressed before your surgery. If he isn't talking or listening to your worries, it is time to seek another opinion. I would have to trust my doctor 100% before I would submit. Full CRPS needs extra special attention, before during and after your surgery. Your doctor needs to tell you exactly what he will do for you. I hope you get all the help you need. You will be in my thoughts and prayers. ginnie:hug:

Is the pump causing you problems, if not and they won't give you pre-emptives refuse the op and leave it there and start looking for a doctor who knows about RSD

I have to strongly agree with the other replys here. My heart goes out to you. I do know the feeling of not being able to think clearly and I only have CRPS/RSD in one hand and arm! But all the meds.............
Again to agree with everyone else I think you should find another opinion.
It was the best thing I ever did because luckily I found a Dr. very familiar with CRPS (she had it herself).
The best advice I was given by a physical therapist is "You must be your own best advocate" with this.
I'm not normally very assertive but now I tell myself to do for myself what I wish someone would do for me.
Call Pain Management Clinics and ask if any Dr.s are familiar with CRPS/RSD and if you find one do whatever you can to get in there.
PLEASE fight for yourself!
Wishing you all the best:hug:

Jamie; Pain Pump removal
 

Thank you or all the replies and support from everyone. I agree with you all.
I've had a fairly difficult time finding doctors who will accept a patient with a pre-existing pain pump with my insurance and then with the complex medical history I have...

I made an appt with the 'doctor himself' oh my; how lucky am i?
I'm seeing him a few days after surgery.

What I plan on doing;
Probably going through the surgery monday, and calling the next day if my pain is unmanageable.
My main doctor and his associate performing my surgery monday are two very different people with different ways of treating. Neither doctor is on my side, but the main one has a softer approach.

I do have a best friend who assured me she'd fight with my doctor for me if i wasn't able to. She assured me she won't leave me in pain, alone to fend for myself right after surgery (i have my own apt and live alone with my dog)
This friend is going to come with me for surgery and will be coming to check in on me a couple times a day to help me and help me with my dog (live on the second floor)
'll just call or come into my drs office, if my pain is unmanageable. (Reception likes to avoid certain callers or take days' to return a message/call at times)

After surgery at my consult; I plan to plainly ask my doctor if he really diagnosed me with RSD then why is he treating me like i don't have it now...?

Thanks for any info :)
-Jamie

Jamie print this out and take it with you
Reflex Sympathetic Dystrophy(RSD) also known as
Complex Regional Pain Syndrome (CRPS) is a chronic
condition characterized by severe burning pain, pathological
changes in bone and skin, excessive sweating,
tissue swelling and extreme sensitivity to touch. People
afflicted with RSD/CRPS are extraordinarily sensitive to
certain stimuli, such as touch, movement, and injections.
Patient Tips
1. Bring a written copy of your medication regime. It
is important to verify whether your medication regime
can be taken care of solely through use of the hospital's
pharmacy. Some medications may not be part of the
hospital's formulary.
2. Avoid having ice applied to the RSD-affected limb
3. Instruct all hospital staff to always ask before touching
you!
4. Request that the surgery protocols be adjusted so
that the pre-op shave be done after anesthesia
(catheter is in place for epidural or whatever). It feels
like a lawnmower has been run over your legs when
they shave without anesthesia.
Patient Room
1. Whenever possible patient should be in a quiet part
of the hospital
2. In a semi-private room, patient should be in the second
bed to avoid inadvertent bumping
3. A Zone-Air bed should be used (adjust mattress pressure
to patient preference)
4. Heat and air conditioning should be well regulated
5. Standing orders should be issued for patients to have
warm blankets
6. Foot Cradle to hold bed linens off body area (will
diminish tactile stimuli)
7. Frequent linen changes may be necessary due to
hyperhidrosis (increased sweating).
8. Allow family members to bring in clean sheet and pillowcases
for patient. Hospital sheets are not soft and
can irritate the skin.
9. Place a sign above bed designating affected limb
Procedures
1. Perform a phlebotomy on unaffected limb only
2. Use Pediatric needles (any trauma can cause the
spread of RSD to a new site)
3. Warm Alcohol or Betadine wipes with warm running
water on outside of package before opening package
(these wipes can be very cold to the patient)
4. If PICA site is available, see if blood can be obtained
from PIC instead of using vena puncture technique.
Blood Pressure and Pulse Rate
1. Use cuff on unaffected limb only
2. Use thigh cuff if both upper extremities are affected
Transport
1. Ask what kind of help the patient needs when transferring
to a stretcher or wheelchair (simply touching
arms or legs may cause hyperalgesia)
2. Use extreme care over bumps, such as elevator doorways
Feeding
1. Be careful not to touch patient extremities with bedside
table
Patient Identification
1. Place red bracelet on unaffected limb
2. Place red dot sticker on patient chart
The Joint Commission on Accreditation
of Healthcare Organizations has mandated
the healthcare institutions that
they accredit to assess and treat your
pain. Pain is now to be assessed as the
fifth vital sign. Patients have the right
to demand pain control and to be pain
free.
Hospital Protocol
RSD/CRPS Patient:
Handle With Care!
PO Box 502
Milford, CT 06460
Toll-free: 877-662-7737
info@rsds.org
www.rsds.org

Hi Jamie,

I have the CRPS in my left side, I can't imagine how you're feeling having it as long as you have and as badly as you have....

BUT....please PLEASE don't go through with the surgery under these circumstances. You are at risk of things becoming so much worse if your docs don't handle things correctly, and it sounds like they haven't a clue. Once the surgery is done, there is no guarantee that they will treat your pain any better than they are now. If they are failing you now (they are, badly) then they will fail you after surgery as well. Even a good friend to fight for you means nothing if your doctors are unsympathetic to your pain and don't understand CRPS - they won't listen to your friend any more than you.

I completely agree with taking the CRPS in Hospital form, but going into surgery with two docs who both basically dont believe your pain and dont understand your condition, is a recipe for disaster. Nurses take their orders from the docs a lot of the time - if your docs tell them that your pain isn't that bad and they mustn't give you morphine (for example), then all the forms in the world won't change that. Don't forget that most nurses don't understand CRPS either, and they are always very busy.

Cancelling surgery now must be a horrible thing to consider, especially as you have prepared for it, taken time off, arranged help etc., but surely it is better to wait a few weeks or even months and have a better surgery experience and decent aftercare, with docs who believe you when you cry out in pain?

Sorry to be so dramatic, I'm not trying to frighten you, but you are clearly having a tough time already with pain and spread, and we all know that CRPS and surgery are a very dangerous mixture at the best of times.

I wish you all the very best, and I really hope that you will reconsider.

Bram.