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Unread 12-15-2003, 08:04 AM   #1
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Joined: Aug 2002
Location: Virginia
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RSD

My friend Savanna has RSD
she has had it for a year now
this is her web site

this web site will explain

http://www.rsdescape.com/

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Unread 12-15-2003, 10:25 AM   #2
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I read through some of her site. Sounds awful. I'll be praying for her.

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Unread 12-15-2003, 02:21 PM   #3
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Thanks for praying for her,
here is something from her web site

It's a little long, so you might want to make some Coffee or tea,

_________________________________________________________________

October, 2003

Hi!

Welcome to RSD Escape. I've only had this site up for a few months now, but I'm already excited at the response that I've gotten from RSD'ers, friends and family, and other people who suffer from chronic pain all around the world.

My name is Savanna and I'm 15 years old. I live in Virginia (By the way, a lot of people who don't live in the U.S. have asked me where VA is...it's near the east coast of the U.S.) where I am now a sophomore at a local high school which I can only attend on a part-time basis due to the pain. I have had Reflex Sympathetic Dystrophy (RSD) for a little more than a year now.

Here's my story....

In late October of 2002, I was doing a handstand and accidentally fell, twisting my foot under as I landed and hurting my left toes and part of my foot. I am so accident-prone, so it wasn't like this incident was unusual. When I went to the doctor the next day, it was decided that I had a sprain and should be off crutches in a week or two.

Unfortunately, this injury never seemed to heal. The pain started changing and quickly grew worse every day. I developed burning sensations, shooting pains, and extreme sensitivity to any kind of touch. My whole foot and ankle started turning strange colors and it was almost always ice-cold.

I kept getting referred to different doctors because no one knew what was wrong. I had x-rays and an MRI which showed that I did not have a fracture or even a sprain. I started to dread doctor appointments because doctors either thought I was exaggerating the pain or just looked perplexed because they had not seen any cases like mine.

A little more than a month after my initial injury, I received the diagnosis of RSD. (This was actually considered a really early diagnosis, but I've come to realize that the diagnosis does not really matter if the doctors never want to treat you or lack the knowledge to treat you). Of course, I was excited, thinking that doctors would now know what to do. I was wrong. Not many doctors knew what RSD was, much less how to treat it.

My RSD has continued to spread and is now full-body. I'm in pain from my toes to my head, even my face and throat hurts. Because I don't have enough strength in my legs to stand and because the pain is so unbearable, I am unfortunately now in a wheelchair. I'm unable to continue with hydrotherapy because of the extreme pain that the water causes (because of hypersensitivity). Fortunately, I now have some doctors that are really trying to help me and the best part is that they believe my pain and they want to help me get better. (I know that all of the RSDers that view this site know how hard it is to find someone that wants to help us, so of course I'm SO excited!)


--------------------------------------------------------------------------------



However, I might have written about the basic medical facts, but I haven't really explained what it is like to live with RSD every day, all the time.

First of all, it can be really frustrating and not JUST because of the pain. It can be awfully discouraging when doctors abandon you because a treatment doesn't work or even the mention of RSD scares them. Many times, I have felt like I should apologize to them because I had RSD. I didn't want to get RSD and make it difficult for them. Some doctors tried to help me, but eventually they didn't know what to do anymore and sent me to someone else. I got so tired of being passed from doctor to doctor. Every time this happened and another doctor couldn't help me, it was like a another letdown.

Please don't misunderstand me. I don't mean to sound like every doctor was awful. In fact, there were many doctors who were very kind and they just did not understand RSD or didn't know what else to do with me. It's just that it gets really depressing when I have gone to more doctors than I can count and yet no one knows what to do. And the same thing happens with friends. Some friends wanted to help me and encourage me, but they didn't know how to do it.

Most of my friends were originally supportive, but even my closest friends started to fade away as the RSD continued. I now value both my remaining old friendships and my newly formed friendships so much more. Even with my family and friends though, I was still really down until I was searching the Internet one day and found an online support group for RSD kids. At first, I was a bit hesitant to join the group because I wasn't really sure what to expect, but I've now developed many friendships with chronic pain kids since I joined this group. I now realize how much experiencing pain can be a really strong bond between friends. I guess this is why I can talk more to them, than "pain-free" people.

But, I have not only developed friendships on the Internet, I have also switched schools and churches this past year. My new classmates are so friendly and are always willing to lend me a hand if I need any help. My teachers are great too and they really try to work with me and help me with any questions I have whether it's on homework or tests or anything else. My new youth group is wonderful and we're all becoming close friends. I have found so many people that help support me, especially my family. (And to any of my classmates, teachers, friends, and family- thank you all so much! )

But, for awhile after my diagnosis, I really struggled with trying to cope with the pain and all the things that went along with it, so I know how many people can make such thoughtless comments without even realizing that their remarks can be cruel. I have definitely learned who my real friends are. People who I never thought of as close friends have turned out to be really kind and thoughtful, yet some of my best friends have basically deserted me.

I have learned how to hide my pain and force a smile because that is what so many people expect me to do. People are scared of pain and they don't want to see it....so I try not to show it. Frankly, I really am genuinely happy a lot of the time, but I wish that people would understand that it is impossible to always be positive when the pain seems unrelenting.

And then there is the thing that is the root of all the problems, the RSD pain. A lot of people have asked me what RSD feels like, but it can be difficult to explain to someone who has not experienced the pain. However, if you are willing to listen and try to understand, then continue to read....here is my description:

The worst part is the burning, however it doesn't really feel hot....it's kind of like a cold fire spreading up through my body. My feet and ankles can get really swollen and the skin feels tight, almost like they are about to explode. My knees get really hot and red with stabbing knife-like pains, while my feet remain horribly cold with a purple and blue tone. My skin is always dry or shiny and the hair has almost stopped growing. Sometimes, I feel deep aching, as if the actual bone aches and I can get weird tingling sensations up my legs, like spiders are crawling on them. It's literally impossible to wear any form of long pants or even capris, just having shorts on hurts (anything rubbing against my legs really hurts) , and I can't wear any form of socks or shoes. My back and arms are really hypersensitive too and wearing a shirt hurts so much! Long sleeved shirts and jackets are impossible to wear now. Even my face is hypersensitive and I don't wear much make-up anymore because it hurts so much to put on. My fingers are getting stiff even though I'm really trying to use them and I can't write at all, only type, because my hands can't seem to control the pen/pencil whenever I attempt to write. Because the RSD is now full-body, everything hurts and even a hug from a friend which is meant to be comforting is really painful. A blanket can feel crushing (can never even cover up with blankets!) and cold air or a breeze is excruciating. I can't sleep most nights because of the pain, so I get tired easily. Whenever I put any weight on my feet, it feels like I am stepping on broken glass and every step can be agony.

When I first got RSD, I thought the pain was bad, but now it is a thousand times worse. Out of the 1-10 scale (with one being the least pain and 10 being the worst) the pain very rarely goes below a 10 (hmm, then again, I think that the RSD breaks the scale, it's more like a 20...it could even be a 50 during nocturnal episodes!). At first, I sometimes had days when the pain wasn't quite so bad, but now it's absolutely constant and so awful and overwhelming that at times, it's hard to talk and think or even remember to do something as involuntary as breathing.




--------------------------------------------------------------------------------



It is hard trying to struggle through every day and not being able to participate in things I used to do. It is hard attempting to keep a smile on, when many times I want to cry instead. And it is HARD to stay hopeful when treatment after treatment fails and the pain continues.

I know that every teenager with RSD has experienced loneliness, sleepless nights, accusations of being a hypochondriac, clueless doctors, and of course-pain. We have to stay on the sidelines of our previous little world, missing Homecoming dances, lots of school, and playing soccer or basketball with friends. We quickly get thrown out of our old life and pushed into the pain world, never having time to look back. We have grown up and matured faster than many of our friends because we have had to go through experiences that no one understands, no matter how much we try to explain to them.

However, if there is something positive about RSD, it is that we have learned how to reach out and help others in pain. RSD has taught me patience, understanding, perseverance, and hope. I've learned that RSD is a journey down a long, rocky road that we sometimes have to travel alone. Always remember that the longest journey begins with just one, single step....and remember that we can and we WILL beat this awful pain someday! (Don't ever stop believing that.)

Don't ever give up. Don't ever give in.

Loads of pain-free hugs,

Savanna


______________________________________________
Please pray for her


God Bless

-Asia

I can do all things through Christ who strengthens me.
Philippians 4:13
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Unread 12-16-2003, 08:47 AM   #4
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Here's a update from Savanna
_________________________________________________________________

I created this timeline mostly to help out other RSD sufferers. We're always asking each other what treatments we have tried and what side effects we have gotten from them or what new, weird RSD symptoms we're developing, so I thought that this chart might help out others when they see what helped me and what did not.

Fell from handstand with full weight onto left foot. The left toes twisted under, absorbing the impact of the fall.

-Immediate pain followed the injury, unable to bear weight. The R.I.C.E. technique was followed and the pain subsided a little for a short time.

October 24, 2002
________________________________________________________________
Following day, family G.P. diagnosed injury as a sprain; X-ray was taken which showed no injury to the bones.

-Told to elevate foot, use crutches and foot brace to keep foot immobilized and all weight off it for a week.

October 25, 2002
________________________________________________________________
Two days after injury, burning pain (first symptoms of my RSD) developed and foot gradually become more painful.

October 26, 2002
________________________________________________________________
Within four days of injury, foot became discolored and ice-cold.

October 29, 2002
________________________________________________________________
After a week, allodynia and hyperalgesia developed and any type of cold breeze was intolerable. Burning pain, discoloration, temperature change spread throughout the whole left foot. During this time, shooting, stabbing pains developed.

1st week of November, 2002
________________________________________________________________
Referred to a podiatrist, X-rays were taken, but no fractures were noticed. His first diagnosis was a sprain, but when it would not heal, he suggested an MRI, which later showed nothing but some very mild soft tissue damage. He noted that the injury was not healing normally and gave a referral to an orthopedic surgeon.

-Told to use Ace bandage, continue to use shoe cast and keep all weight off foot.

November 4, 2002
________________________________________________________________
Saw orthopedic surgeon and he mentioned several possibilities, but was not sure of a diagnosis.

-Gave a referral to a vascular surgeon and prescribed Tylenol #3 as needed to help with pain.

-T #3 did not help pain, just gave side effects.

November 20, 2002
________________________________________________________________
A little more than a month after initial injury, vascular surgeon diagnosed Reflex Sympathetic Dystrophy and made referral to an anesthesiologist to see if a nerve block was needed.

November 25, 2002
_________________________________________________________________
RSD symptoms start spreading rapidly to ankle (e.g. pain, discoloration, temp. change)

Last week of November 2002
_________________________________________________________________
Anesthesiologist suggested a TENS unit to try before a block and gave a referral to a physical therapist to show me how to use the TENS.

Hydrotherapy is started and helps with mobility, although not with pain.

Last week of November 2002
_________________________________________________________________
TENS was used for a month with a little pain relief, but very little. During this time, it was getting harder to weight bear, not easier.

November- December, 2002
________________________________________________________________
Anesthesiologists administered five epidural blocks during Christmas break but they had no lasting effect. We were given a referral to a local pain clinic.


December 26, 2002– January 1, 2003
________________________________________________________________
Saw anesthesiologist at pain clinic.

-Topamax 150mg and Lidocaine 5% patches were prescribed.
Also referred to a physical therapy location for PT on land.

January 6, 2003
_________________________________________________________________
RSD symptoms start spreading gradually from initial injury to knee throughout the months.

December-January, 2002-2003
_________________________________________________________________

Due to a language barrier problem, we were given a referral to another pain clinic and hour and a half away from our home.

-During all this, the Topamax was not helping the pain yet and the side effects were growing frustrating (e.g. extreme drowsiness, dry eyes, upset stomach). The patches helped a little bit, but it really hurt taking them off!!

Mid-January, 2003
________________________________________________________________
RSD symptoms once again spread rapidly from initial injury to the hip. Tingling sensations, like spiders crawling over the skin developed.

Gradually started to develop an intolerance to heat. This is helped by alternating cold and warm compresses.

January-February, 2003
________________________________________________________________
Saw anesthesiologist at new pain clinic and he suggested that we try using the TENS unit in a different manner for two weeks to see if it made a difference. (This helped, but not a great deal.)

-Gave a referral to a pediatrician for his input.

February 7, 2003
________________________________________________________________
Saw pediatrician and he prescribed 900mg of Neurontin in the place of Topamax (side effects were getting worse and it was not making a difference in pain level, Lidocaine patches were also stopped around this time because they were not really helping and it was agony removing them).

-Told us to try Neurontin for a month and see if it made the pain more manageable.

February 28, 2003
________________________________________________________________
Neurontin was helping but not very noticeably, so we scheduled an appointment at same pain clinic with a different anesthesiologist for a series of five nerve blocks with Bupivicaine;

Nerve blocks lessened pain anywhere from 2-3 hours immediately after blocks which helped me bear weight for a short period of time.

-anesthesiologist also added Nortriptiline 20 mgs to help with insomnia (nocturnal pain always makes it hard to sleep). Side effects include dry mouth and increased sensitivity to sun.

April, 2003
________________________________________________________________
Scheduled nerve block with phenol (chemical sympathectomy) for long-lasting effect. This was later canceled due to concerns about risks and the lack of study showing results in children with chemical sympathectomies.

Thursday, May 1, 2003
________________________________________________________________
Visited the National Institute of Health Pain Center regarding RSD clinical study with Japanese drug, Neurotropin. Rejected as participant because RSD was present above knee. (Criteria specifies that subjects cannot have RSD in more than one extremity or above the knee.)

Spoke with NIH team of doctors, including an anesthesiologist, who explained phenol blocks. He mentioned other means of lessening pain for PT, (e.g. Bier block, or as a last resort, a spinal cord stimulator).

Also spoke extensively with rehab physiatrist, regarding PT treatment plan.

April 25, 2003
________________________________________________________________
After a recommendation by another RSD sufferer, we saw a foot and ankle specialist (although the RSD is not contained in just the foot and ankle anymore). He prescribed Topamax 200 mg, Medrol 4mg (6 day pack), Vioxx 50 mg, and Darvocet as needed.

-A CT scan was set up because a Lisfranc injury was suspected. More X-rays were taken, but the same results revealed no injury to the bones.

April 28, 2003
________________________________________________________________
All meds were attempted, but Vioxx produced an a allergic reaction (e.g. extreme shortness of breath, extreme dizziness, and extreme drowsiness). Neither Medrol or Darvocet produced any allergic reactions, but Darvocet had the usual side effects (e.g. severe drowsiness and stomach upset) and did not produce any reduction of pain. Medrol was also associated with side effects (e.g. fever and stomach upset), although it helped reduce the edema moderately. The Topamax is still being used with Neurontin, and Pamelor. The Topamax is producing the same side effects as previously.

April-May, 2003
________________________________________________________________
Alternative methods are resorted to both earlier and later on in the course of illness.

Herbs and natural remedies that reduce inflammation and swelling are used (e.g. bromelain, turmeric, and Zyflamend-a mixture of herbs) because of previous allergic reactions to NSAIDs. So far, no adverse reactions other than stomach upset have been noted. Acupuncture is also being attempted in the following weeks to see if there is any reduction in pain.

May-June, 2003
_________________________________________________________________
Mild muscle spasms develop in affected extremity, described as cramping and acute, very sharp pains. June, 2003
Gradually came off Topamax until completely off it because of side effects and no pain reduction at all.
First few weeks of June, 2003
_________________________________________________________________
Acupuncture is stopped because no reduction in pain is noted.
Mid-June, 2003
_________________________________________________________________
Pain develops in right foot and ankle, but is assumed to be a strain from being on crutches for so long. Symptoms include achy joints, throbbing, unusual warmth, tingling, numbness, stiffness and weakness in the affected right leg.
Ice is applied and produces some relief.
Weight-bearing is continued on crutches (on right leg), but is painful.

June 21, 2003
_________________________________________________________________

RSD symptoms develop in right foot, ankle and shin. Symptoms include temperature change (very cold foot and ankle), tingling, some numbness, muscle spasms, burning, weakness, stiffness and mild edema. Edema is not as severe as left extremity and no discoloration is seen.
Weight-bearing is continued on crutches (on mostly right leg) around the house.
A wheelchair is resorted to outside of house because of severity of pain, but hydrotherapy is continued.

June 22, 2003
_________________________________________________________________
A week after RSD spreads to right extremity, very mild discoloration occurs in right foot.

June 29, 2003
_________________________________________________________________
Neurontin is gradually increased up to 1800 mgs which helps a little; side effects are worse, but are still tolerable. During June, 2003
Four-phase bone scan and x-rays are taken over a period of two days to rule out a Lisfranc injury.

June 30 - July 1, 2003
_________________________________________________________________
After studying both old and recent tests, the diagnosis is now assumed to be a Lisfranc injury (probably the underlying cause of the RSD) in which a ligament holding the Lisfranc bones & joint together is damaged.

First week of July, 2003
_________________________________________________________________
TENS unit starts increasing pain. The unit is used very little now because it can no longer be tolerated.

June-July, 2003
_________________________________________________________________
Evaluation at a pediatric pain clinic in North Carolina, where an inter-disciplinary approach (e.g. various doctors and other medical specialists) is used.
Treatment includes added meds (Methadone, Zoloft). Both medicines produce severe side effects, including migraine headaches, vomiting, and severe dizziness. Milder reactions include dry mouth, drowsiness, increased sweating & fever, and tremors. The two meds are stopped and Neurontin is decreased to 900 mgs w/ different time intervals than previously. Side effects gradually stop.
Later treatment is discussed and consists of cognitive-behavioral techniques (e.g. biofeedback, relaxation exercises) and inpatient physical therapy.

July 11, 2003
_________________________________________________________________
A visit is made to a pediatric hospital in Wisconsin where a team approach is also used. Physical therapy, and hydrotherapy is done over two weeks and CBT (as mentioned in the above column) is also used as pain management. GP appointments are made back down in home state so family doctor can communicate with the Wisconsin team.
A PT, desensitization, and hydro plan is made to follow at home. CBT exercises are also demonstrated to follow at home.
Nortriptiline is discontinued. Neurontin is increased to 3600 mgs. Amitriptiline 60 mgs and Celexa 20 mgs are started. Combined side effects include: dry mouth, dizziness, nausea, and extreme drowsiness.

First two weeks of August, 2003
_________________________________________________________________
RSD now involves both lower extremities, left leg has RSD spreading from toes to hip, right leg has RSD spreading from toes to thigh. Both legs have very prominent symptoms now including discoloration, temperature change, and extreme pain. A wheelchair is needed full-time and daily hydro is continued.

August 26, 2003
_________________________________________________________________
Constant aches occur in back and neck. These are assumed to be muscle strains and are not given very much attention to. Late August through early

September, 2003
_________________________________________________________________
RSD symptoms now show in entire back and neck. Severe sharp pains develop in neck which radiate down through the vertebrae column. Burning pain is in both neck and back with moderate hypersensitivity to touch. Very prominent RSD symptoms are still in both legs from toes up to the hips.

Second week in September, 2003
_________________________________________________________________
RSD symptoms are now full-body, excluding the face. Severe pain and hypersensitivity is from neck to toes. Discoloration and edema is plainly seen in legs and mild edema is in hands.

September 11, 2003
_________________________________________________________________
RSD symptoms worsen and neck & back get very stiff due to severe muscle spasms. Face, scalp, even throat is now involved in the RSD. Because of the pain in throat, eating becomes very hard.
Pain is unbearable and because neck is so stiff, a trip is made to the emergency room.
Lortab (just used once, doesn't produce any pain reduction, just side effects), and Norflex 200 mgs are prescribed for spasms and pain. Celexa is discontinued and Lexapro 10 mgs is used in place of Celexa.

September 12, 2003
_________________________________________________________________
Nothing helps the pain anymore. Severe hypersensitivity is now all over the body. Showers are impossible, so baths are used. No meds help reduce the pain, just produces side effects. Only type of clothes that can be worn are shorts and sleeveless/short-sleeved shirts. Any other clothing is impossible. Socks and shoes still aren't tolerated. Hydro is stopped due to the extreme pain caused by the water.
Pain never goes below a 10 (worst pain on the 1-10 pain scale) now. Stiffness and joint popping is present in hands. Although writing cannot be done, typing can be tolerated at times. Pain keeps climbing and getting worse.
Three treatments options are discussed with our GP: hyperbaric oxygen therapy, long-term epidural pump (6 months or longer), and spinal cord stimulators.

Late September, 2003
_________________________________________________________________
Three hyperbaric treatments are attempted. First treatment produces no side effects. Second treatment produces greatly increased pain. Third treatment produces the worst RSD pain that's ever been felt since the onset of RSD, so the treatments are stopped. After a few days, the pain goes back down to a horrible 10.

September 23 - 25, 2003
_________________________________________________________________
Lexapro is increased to 20 mgs, side effects include dry mouth, drowsiness, and nausea. Amitriptyline is increased to 70 mgs, side effects dry mouth, drowsiness, nausea, and sun sensitivity. Neurontin 3600 mgs is also still being used, side effects include severe memory loss, dizziness, drowsiness, and nausea. Norflex is discontinued.

Late September - early October, 2003
_________________________________________________________________
Spontaneous fevers occur up to 2 - 3x a week. Hair loss also occurs (due to RSD in scalp). September - October, 2003
Ketamine cream is tried. Produces no relief and many times actually increases pain.

October, 2003
_________________________________________________________________

An epidural, containing Bupivicaine and Clonidine where the dosages are slowly increased over the days, is placed mid-back for a period of two to three weeks. If this trial works, then an internal intrathecal pump and catheter will be implanted for as long as necessary.
Post-op pain flares up RSD in back from the epidural and flares up RSD in mouth and throat from intubation during the general anesthesia.
Cephalexin is prescribed to help prevent infections from the external catheter. Dilaudid(2 mgs) and Ultracet(37.5 mgs tramadol and 325 mgs acetaminophen) is prescribed for post-op pain from RSD flare ups. Ultracet does not help at all. Dilaudid takes the edge off long enough for a decent nap or bath, etc. Pain is still 10+ everywhere all over body, (except for mouth, throat, and back, where the pain is about a 50!).

November 4, 2003
_________________________________________________________________
RSD duration progresses to 13 months.

November 24, 2003
_________________________________________________________________

___---___---___---___---____---___---___---___---___---___---___---__

Merry Christmas

God Bless

-Asia
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Unread 12-16-2003, 03:36 PM   #5
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Savanna,
she had surgery December 2,
to have another pump put in.
First of all, Let me update you on her condition though if you haven't heard about it.
She's not recovering from her surgery like she should.
Her incisions healing normally, but the pain is even worse than it was before the operation.
The doctor changed the surgery at the last minute,
so now the pump is internal/external. This causes her more pain because she has to have a needle in her that needs to be chaged once a week.
She is swollen and her pain in her back is so bad that she can hardly breathe sometimes.
Her muscles are so weak she can't push her wheelchair.
The medicatio! n is having bad effects.
The doctor will not change meds for her.
He has pretty much given up hope.
He says the condition is irreversible.
My heart goes out to Savanna.
Shes such a sweet girl.
I also want to ask you to pray for her. Tell those around you to pray for her too.
Prayer can change things. I am still confident that God CAN heal her, its just a matter of if he WILL heal her. I'm just asking that you remember her.

Thanks!

In Christ's love,

-Asia

John 15:5
"I am the vine and you are the branches he who abide in me and I in him shall bare much fruit for apart from me you can do nothing"
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Unread 12-16-2003, 10:00 PM   #6
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I'll be praying for her
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Unread 12-17-2003, 08:54 AM   #7
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sound awful...i'll be praying for her also
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Unread 12-17-2003, 12:48 PM   #8
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Sounds terrible...I'll be praying.
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Unread 12-17-2003, 05:02 PM   #9
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Thanks you guys for praying for her,
it really means alot to me and her
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Unread 01-23-2004, 11:50 AM   #10
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Here's an update on Savanna
_________________________________________________________________

The semi-permanent epidural pump is surgically implanted, the port as the implant, and the tubing and pump as the external products; a needle must stay in the port to access it. The port is implanted near the rib cage in left upper back and the catheter is tunneled under the skin to stay in the epidural space. The op went well and although waking up from the anesthesia was excruciatingly painful, intravenous morphine helped a little.
The meds in the pump are the same as before, but are being increased higher than the previous trial pump.

December 2, 2003
_________________________________________________________________
The RSD flares up even worse than the surgery for the trial phase. Feet and ankles have more edema and temperature changes, hands are much more painful and stiff, but the back seems to be the worst. The throat and mouth aren't nearly as bad since the anesthesiologist used a smaller tube for the intubation during the general anesthesia. Due to this precaution, the RSD flare-up is much more limited in the throat/mouth.
However, severe breathing problems(this pertains to chonic asthma, a condition since birth, but has usually been controlled well w/ maintenance meds and exercise until these past few months from both trial and final pump) start after the procedure. This might be either a reaction to one of the meds in the pump or might be an after-effect from the anesthesia. Xopenex and albuterol are used in inhaler and nebulizer form which does help ease the breathing some. This lung condition is worsened due to hyperventilation and anxiety produced by the extreme RSD pain.

During December, 2003
Post-op
_________________________________________________________________
Pain is still very flared up and every time the needle must be changed in the port, the RSD pain gets even worse.
No pain med even touches the pain, although this might be because the pain is so high.
Morphine 15 mgs is prescribed for pain, along with promethazine to help fight the nausea that I usually experience with all the meds. Neurontin and amitriptiline are still being taken. Morphine does not even touch the pain, only produces a lot of drowsiness, some dizziness, and clouded thinking from the fatigue produced by the med.
Advair (fluticasone propionate 100mcg and salmeterol 50 mcg 2x a day)is suggested for breathing problems, since the usual Singulair and Serevent meds do not appear to be helping.
For good news, the blood vessel constriction does not appear in my back, so the incisions seem to be healing fine.

December 9, 2003
_________________________________________________________________
Amitriptiline is decreased to 50 mgs and Neurontin is being decreased. Neurontin is being eliminated due to side effects which grew worse every time the dosage was increased and even now the side effects are increasingly getting worse, plus there has been no reduction in pain from this medicine for months.
Side effects associated with Neurontin have been monitored over the months and include:
• severe nausea and vomiting
• drowsiness
• dizziness
• lightheadness
• weight gain
• loss of appetite (due to nausea)
• short-term memory loss
• mood swings
• personality changes
• tinnitus and extreme pressure in the ears

December, 2003
_________________________________________________________________
RSD duration progresses to 14 months.

December 24, 2003
_________________________________________________________________
Morphine .02 mg/ml per hour is added to pump during an overnight stay at the hospital in PICU- pediatric intensive care unit. Marcaine is at .25% and Clonidine is at 4mcg/ml per hour.
Side effects are mostly the same but increased: nausea, drowsiness, breathing problems, dizziness, short-term memory loss, etc.
Upper extremity pain continues to increase and discoloration and temp change are much more prominent in hands.

December 29, 2003
_________________________________________________________________
Morphine increased to .04 mg/ml per hour.

January 8, 2004
_________________________________________________________________Transdermal gel is started, containing Ketamine, Ketoprofen, and Tegretol. No side effects are noticed, since it's only transdermal instead of oral.

January 9, 2004
_________________________________________________________________

Please pray for her

God Bless

~Asia
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Unread 01-23-2004, 06:28 PM   #11
Micah 6:8
 
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Location: Louisiana
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I've been waiting for an update, thank you for posting again. I'll continue to pray for Savanna
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Unread 01-23-2004, 09:07 PM   #12
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Thank you for praying for her.
___________________________
I think she found a doctor that used to have RSD
and went wherever he was, please just pray that it will all go well,

God Bless

~Asia
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Unread 01-28-2004, 07:24 PM   #13
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Praying for your friend. Keep us posted.
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Unread 02-01-2004, 04:38 PM   #14
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Location: Virginia
Posts: 544
Hey Everyone,
here's a update on Savanna...
_________________________________________________________________
She arrived in texas last tuesday-the 20th-and everything there she said was so different from where she lives, she said the weather is usually between 40 and 80 degrees,

The treatments have worsened the pain for now and they had to stop
them while she's coming off the med pump. the withdraw has been
much worse than expected, but much of that is due to the fact
that the doctor decreased the medicine much too fast. it's been
really scary...she hasn't eaten for 10 days, she became so dizzy
that she wasn't able to move, and she started having heart problems.
at one point, she became incoherant, she couldn't respond to anyone
or anything, she couldn't lift her head off the pillow, she couldn't
even open her eyes. she was admiitted to the hospital for 3 days
and after medicine and oxygen to stabilize her heart/dizziness/nausea,
she's doing better, although she's still having trouble even w/ the
heart meds.
the rsd is worse too, both hands are now contracted into fists
and she can only move 2 fingers!

she moved into the ronald mcdonald house, the hotels and
apartments didn't work too well. surprisingly, even though there's
sickness here, the house is so cheerful and happy. there are
kids of all ages here and she just loves it, even though she's only
been in the house for a day.

_________________________________________________________________

She sent me an e-mail and told me all about it,
It's really hard for me to talk about her without starting to cry,
Please keep praying for her,

As Savanna would say "Loads of Pain-Free Hugs"

~Asia
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Unread 02-04-2004, 06:28 PM   #15
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Location: Virginia
Posts: 544
Thank you for all your prayers
it really means alot to me...and her

In His Love.
~Asia
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