Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 02-10-2010, 04:35 PM #1
hipgirl9109 hipgirl9109 is offline
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Post I don't know what is wrong w/me & Dr's won't touch me w/a 10ft pole

I will apologize in advance for such a long post. I am so frustrated with my injury and every dr i have seen acts as though they don't want to talk about my problems or what is going on.

I was a runner before this happened. On 9/1 i hurt my hip and could barely walk home after getting only 2 miles into my run. On 9/10 i went to my FNP and she too Xrays and said it looked normal. Probably a muscle.

Saw Orthopedic Surgeon DR on 9/26 (that i found myself, no referral) i believe. he looked at previous xrays taken at my primary care on 9/10 and they did appear normal. He lifted my leg up and to the side slightly. He asked what my symptoms were. Based on clinical he said he suspected i had a femoral neck stress fracture. He told me to take it easy. But no specific "do not do's" were given. If i had pain don't do it. If it got worse i was supposed to call immediately. I was given an appt in 4 weeks. Went back in 4 weeks, xrays were taken. Xrays some forming of callous on top and bottom of femoral neck. My pain was still present. He moved my leg up and side to side slightly. He said since it was showing signs of healing he felt i would be good to go. He said i did not need another appt.

Called on 12/7 spoke to nurse complaining of continued symtpoms and seemingly worse. Dr suggested i come in. Came in on 12/8. Xrays taken again and appeared the same as they were at my last appt late in Oct.
Dr said at this point he suggested surgery because there could be issues with loss of blood to the femoral head and then that could lead to hip replacement etc. I asked specifically "how do we know its not completely healed?". He said at this point it was purely clinical. He also said in hindsight had he thought it was this severe he would have had me on no weight bearing w/crutches. Surgery scheduled for 12/11. (in hindsight i am now wondering why we didn't eliminate other possibilites, ie give me an MRI).


Went thru surgery, woke up in anethesia recovery and right foot was cold. Mention from nurse regarding this and asking about it. Couldn't feel my leg, but i didn't put anythought into it because of the screws i knew were just put into my leg.
Went out of that recovery back to my "room". Foot extremely cold, recovery room nurse told my room nurse and a sock was put on my foot. She asked if i could move my toes, at that point i couldn't. I mentioned i couldn't move my leg either. She asked if i had a nerve block and i told her i did not think so because we had agreed to general. I would say within about 45 minutes i could move my toes up and down enough the nurse was satisfied. Given pain meds, etc and was discharged. My instructions were basic. I had a preop scheduled 10 days later.

For the first few days i could not move my leg w/out physically lifting it up. Foot cold and numb, wore two socks at all times. Constant muscle spasms in leg for first 5 days or so..mostly at nite. Had constant twitching, spasms in thigh.
5 days post op, called DR about foot numbness and coldness and slight swelling. I went in and he looked, said it felt cold, said he could feel a pulse on the top of my foot, checked my incision site and said it looked fine. I asked when i could drive and he said now.

10 days sutures taken out, incision site looked good. I mentioned the foot, said it hadn't gotten worse, but still the same. He said it was probably part of healing and was not concerned. I had to ask for what excercises i could do.

3.3 weeks post op, called and spoke w/the nurse about my concern with the foot. Explained it was numb, purple when vertical, cold up to my knee and sometimes my thigh. Dr called the next day. He asked/said "so your foot is still bothering you" i said yes. I told him what was going on and he said it wasn't really something he's seen. He said it could be because i'm thinner than most of his patients? I asked specifically about nerve damage. He asked again what my symptoms were. I told him. He suggested i see a PT and get some massage in my leg to get things circulated or compression stockings. I chose PT.

Went to PT following day. No massage was done..bummer She did some sensory tests, looked at the color and told him to do 4 excercises which were similiar to the ones from the list i had gotten from the OS previously. Said she felt there was nerve involvment, but there was nothing she could really do while i was not weight bearing. Said she'd call and talk to my DR. Never heard from her or him, not sure if she called or where that ended.

Went in to see my PCP who is a CNP 1/12. She noted foot color, lack of pulse or hard to find pulse on foot and coolness of leg up thigh. Sent me for venous ultrasound. US tech immediately asked if i was here for a venous or arterial ultrasound because although my symptoms sounded arterial the paperwork said venous, i did not know so she confirmed it was venous. She appeared miffed by that.
Ultrasound negative for bloot clots. FNP told me to go back to my OS and have him look at it again, or have a collegue look at it. Basically, she didn't want to deal with it i guess.

Spoke with operating surgeon right before my ultrasound to let him know i had gone to my PCP and what was going on. He said he had no idea why i was having these problems as open reduction/internal fixation for a stress fracture is a simple procedure.
Called OS back 1/14 to let him know the ultrasound was negative and that i would like to figure out what is going on or be referred to a collegue in his office who might better help me if he is uncertain of my condition.

Called me back to schedule appt. Told me after i asked of nerve involvment and arterial involvment that neither were in that area.

Saw ortho on 1/15 said he felt a pulse just fine in foot. Acknowledged the coolness of my foot. Said he wanted me to go weight bearing. Mentioned that there might be some nerves that got rattle up during surgery, some peoples bodies just don't handle surgery well. Only a day ago he was telling me no nerves in that area.

Called FNP after this appt, to tell her what was done/said. She told me to just try to "get better", go to therapy, whatever it took and try hard. WTF? I was insulted and hurt because that is my life motto..try hard, don't let anything get u down.

Fast forward to 1/24..hands are turning, pale, grey/blue/purple, the entire hand is molted looking, then gets red like sunburned. Both feet are now turning purple when dangling in a chair. I get cramping in my foot, calf and up in my thigh. Pain is worse during the late evening and thru the night. Bottom of foot is dried out looking and has a constant, burning type feeling to it. I have a great deal of pain over my incision site still and when i move i can feel a grinding/catching pain that feels as though it is in the bone.
I still have the same groin pain that i had prior to surgery. I am having a hard time with internal and external rotation of any kind. Specifically when i have recently tried doing yoga. Stretching seems to aggrivate symptoms. Stationary bike ok for 5 min..i have been pushing thru the pain and if i cock my leg a certain way can go about 20 min. Weakness and shakiness in leg aftewards, but that is probably from lack of use.

Went to another family practitioner 2/9. Assumed i would at least get blood work done. My hands are constantly red/blue/purple in color, both feet hurt and my legs are beginning to cramp at calves when i sit in a chair. She checked for pulse in feet, felt a solid one. Told me she didn't know why my Dr did the surgery and that she didn't know what was wrong. I got flustered and she could tell and asked what i wanted her to do? I said i didn't know but how come u won't do blood work. She said i had complete blood panel included ana, sed, ra 10 months ago and the did a red/white blood count before surgery.

But i have symptoms now that i didn't have before... she said she would do some research? OK??
No one seems to want to address any of my issues. I am so frustrated and confused.

Any thoughts, experiences etc would just be nice to hear.

Thanks so much!!
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Old 02-10-2010, 06:03 PM #2
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You don't mention pain. Most of us suffer from severe pain.

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Old 02-10-2010, 06:28 PM #3
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I thought that my mention of the below descpription was pain.

I get cramping in my foot, calf and up in my thigh. Pain is worse during the late evening and thru the night. Bottom of foot is dried out looking and has a constant, burning type feeling to it. I have a great deal of pain over my incision site still and when i move i can feel a grinding/catching pain that feels as though it is in the bone.
I still have the same groin pain that i had prior to surgery. I am having a hard time with internal and external rotation of any kind. Specifically when i have recently tried doing yoga. Stretching seems to aggrivate symptoms.

I'm simply grasping at staws here as there is clearly something going on with me.

** Thank you for clarify some of the symptoms.

Last edited by Chemar; 02-10-2010 at 06:52 PM. Reason: guidelines
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Old 02-10-2010, 06:48 PM #4
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Most states have a short period of time after a medical event to file a liability claim. ( 1 or 2 yrs)

If you care to pursue that path, you have to get a 2nd opinion ASAP.

This forum open to all questions. Please relax about that.

I will say... I had a groin injury...that caused severe pain, and it was remarkably similar to yours. Only I did not have it happen where doctors are. I had to wait, since I was in the boonies.
I hobbled along, used Lidoderm patches which I had for another reason, and went to my doctor 3 wks later. She sent me right away to PT which said I had a tendon injury. After 3 PT sessions of IFc and ultrasound, I started getting relief. If I hadn't it would have been surgery.

I could not move my leg, I could not be normal at all. I couldn't roll over in bed, or get dressed myself. Our cousin was up there too...he is a pediatric ortho surgeon, and he felt I had a tendon pull. So I toughed it out. It was more pain than my C-section or anything else I have had in my life. Mine was from a fall. I don't have RSD that I know of. I do get purple in the foot when circulation is affected by my blood pressure pills. So I don't take that drug every day--I have 2 others to use when the foot gets bad.

Pt told me to expect 8mos recovery, and it really took more like 2 yrs. Now I can get up from a chair, toilet, etc alone. I can do most things. But every once in a while it sort of flares for a day...like this bad weather we've been having.

I think you need to get another opinion to see if the surgery was warranted, and/or caused you further disability. Things in the hip are slow to heal, and jumping into surgery may have been not the thing you needed. Only another orthopedic doctor can tell that.

Doctors HATE the thought of suits...some may not talk to you.
The reason you get the feeling they are minimizing your pain, is if they delay you long enough, the statute of limitations will pass and they will be home free.

I see stretching aggravates you.... this suggests to me that it is adhesions or tendon issues you are facing. Stretching should be very slow very gentle and not a trigger for pain. Some movement is good, but painful movement is not...it only reinjures a damaged tendon.
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Old 02-10-2010, 08:40 PM #5
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Quote [Called on 12/7 spoke to nurse complaining of continued symtpoms and seemingly worse. Dr suggested i come in. Came in on 12/8. Xrays taken again and appeared the same as they were at my last appt late in Oct.
Dr said at this point he suggested surgery because there could be issues with loss of blood to the femoral head and then that could lead to hip replacement etc. I asked specifically "how do we know its not completely healed?". He said at this point it was purely clinical. He also said in hindsight had he thought it was this severe he would have had me on no weight bearing w/crutches. Surgery scheduled for 12/11. (in hindsight i am now wondering why we didn't eliminate other possibilites, ie give me an MRI).
]


Hmm, yes I would have thought a MRI would have been a better next step for diagnosis before moving into a surgery.
You don't have brittle bones or anything do you?
Maybe in that case a logical step would be surgery- but still no other imaging but x rays??
Doesn't really make sense to me.

Is your skin extremely sensitive to touch, hot, cold, breezes?
That is another part & symptom of RSD.

It's one of those conditions that aren't well known, so that's why the trouble finding Drs to talk about it.
Plus the surgeon doesn't want to be the cause of this continued problem.
There's is no way to tell who may get RSD or not - it's the roll of the dice.
But if the surgeon didn't follow proper testing or procedures before surgery then he could be partially at fault for an unnecessary surgery.

I don't know the legal laws or rules about it- just going with my logic.

But a second opinion or 2 from an impartial surgeon might be a good idea.
preferably a well known & expert one.
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Old 02-11-2010, 12:24 AM #6
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Quote:
Originally Posted by hipgirl9109 View Post
I will apologize in advance for such a long post. I am so frustrated with my injury and every dr i have seen acts as though they don't want to talk about my problems or what is going on.

I was a runner before this happened. On 9/1 i hurt my hip and could barely walk home after getting only 2 miles into my run. On 9/10 i went to my FNP and she too Xrays and said it looked normal. Probably a muscle.

Saw Orthopedic Surgeon DR on 9/26 (that i found myself, no referral) i believe. he looked at previous xrays taken at my primary care on 9/10 and they did appear normal. He lifted my leg up and to the side slightly. He asked what my symptoms were. Based on clinical he said he suspected i had a femoral neck stress fracture. He told me to take it easy. But no specific "do not do's" were given. If i had pain don't do it. If it got worse i was supposed to call immediately. I was given an appt in 4 weeks. Went back in 4 weeks, xrays were taken. Xrays some forming of callous on top and bottom of femoral neck. My pain was still present. He moved my leg up and side to side slightly. He said since it was showing signs of healing he felt i would be good to go. He said i did not need another appt.

Called on 12/7 spoke to nurse complaining of continued symtpoms and seemingly worse. Dr suggested i come in. Came in on 12/8. Xrays taken again and appeared the same as they were at my last appt late in Oct.
Dr said at this point he suggested surgery because there could be issues with loss of blood to the femoral head and then that could lead to hip replacement etc. I asked specifically "how do we know its not completely healed?". He said at this point it was purely clinical. He also said in hindsight had he thought it was this severe he would have had me on no weight bearing w/crutches. Surgery scheduled for 12/11. (in hindsight i am now wondering why we didn't eliminate other possibilites, ie give me an MRI).


Went thru surgery, woke up in anethesia recovery and right foot was cold. Mention from nurse regarding this and asking about it. Couldn't feel my leg, but i didn't put anythought into it because of the screws i knew were just put into my leg.
Went out of that recovery back to my "room". Foot extremely cold, recovery room nurse told my room nurse and a sock was put on my foot. She asked if i could move my toes, at that point i couldn't. I mentioned i couldn't move my leg either. She asked if i had a nerve block and i told her i did not think so because we had agreed to general. I would say within about 45 minutes i could move my toes up and down enough the nurse was satisfied. Given pain meds, etc and was discharged. My instructions were basic. I had a preop scheduled 10 days later.

For the first few days i could not move my leg w/out physically lifting it up. Foot cold and numb, wore two socks at all times. Constant muscle spasms in leg for first 5 days or so..mostly at nite. Had constant twitching, spasms in thigh.
5 days post op, called DR about foot numbness and coldness and slight swelling. I went in and he looked, said it felt cold, said he could feel a pulse on the top of my foot, checked my incision site and said it looked fine. I asked when i could drive and he said now.

10 days sutures taken out, incision site looked good. I mentioned the foot, said it hadn't gotten worse, but still the same. He said it was probably part of healing and was not concerned. I had to ask for what excercises i could do.

3.3 weeks post op, called and spoke w/the nurse about my concern with the foot. Explained it was numb, purple when vertical, cold up to my knee and sometimes my thigh. Dr called the next day. He asked/said "so your foot is still bothering you" i said yes. I told him what was going on and he said it wasn't really something he's seen. He said it could be because i'm thinner than most of his patients? I asked specifically about nerve damage. He asked again what my symptoms were. I told him. He suggested i see a PT and get some massage in my leg to get things circulated or compression stockings. I chose PT.

Went to PT following day. No massage was done..bummer She did some sensory tests, looked at the color and told him to do 4 excercises which were similiar to the ones from the list i had gotten from the OS previously. Said she felt there was nerve involvment, but there was nothing she could really do while i was not weight bearing. Said she'd call and talk to my DR. Never heard from her or him, not sure if she called or where that ended.

Went in to see my PCP who is a CNP 1/12. She noted foot color, lack of pulse or hard to find pulse on foot and coolness of leg up thigh. Sent me for venous ultrasound. US tech immediately asked if i was here for a venous or arterial ultrasound because although my symptoms sounded arterial the paperwork said venous, i did not know so she confirmed it was venous. She appeared miffed by that.
Ultrasound negative for bloot clots. FNP told me to go back to my OS and have him look at it again, or have a collegue look at it. Basically, she didn't want to deal with it i guess.

Spoke with operating surgeon right before my ultrasound to let him know i had gone to my PCP and what was going on. He said he had no idea why i was having these problems as open reduction/internal fixation for a stress fracture is a simple procedure.
Called OS back 1/14 to let him know the ultrasound was negative and that i would like to figure out what is going on or be referred to a collegue in his office who might better help me if he is uncertain of my condition.

Called me back to schedule appt. Told me after i asked of nerve involvment and arterial involvment that neither were in that area.

Saw ortho on 1/15 said he felt a pulse just fine in foot. Acknowledged the coolness of my foot. Said he wanted me to go weight bearing. Mentioned that there might be some nerves that got rattle up during surgery, some peoples bodies just don't handle surgery well. Only a day ago he was telling me no nerves in that area.

Called FNP after this appt, to tell her what was done/said. She told me to just try to "get better", go to therapy, whatever it took and try hard. WTF? I was insulted and hurt because that is my life motto..try hard, don't let anything get u down.

Fast forward to 1/24..hands are turning, pale, grey/blue/purple, the entire hand is molted looking, then gets red like sunburned. Both feet are now turning purple when dangling in a chair. I get cramping in my foot, calf and up in my thigh. Pain is worse during the late evening and thru the night. Bottom of foot is dried out looking and has a constant, burning type feeling to it. I have a great deal of pain over my incision site still and when i move i can feel a grinding/catching pain that feels as though it is in the bone.
I still have the same groin pain that i had prior to surgery. I am having a hard time with internal and external rotation of any kind. Specifically when i have recently tried doing yoga. Stretching seems to aggrivate symptoms. Stationary bike ok for 5 min..i have been pushing thru the pain and if i cock my leg a certain way can go about 20 min. Weakness and shakiness in leg aftewards, but that is probably from lack of use.

Went to another family practitioner 2/9. Assumed i would at least get blood work done. My hands are constantly red/blue/purple in color, both feet hurt and my legs are beginning to cramp at calves when i sit in a chair. She checked for pulse in feet, felt a solid one. Told me she didn't know why my Dr did the surgery and that she didn't know what was wrong. I got flustered and she could tell and asked what i wanted her to do? I said i didn't know but how come u won't do blood work. She said i had complete blood panel included ana, sed, ra 10 months ago and the did a red/white blood count before surgery.

But i have symptoms now that i didn't have before... she said she would do some research? OK??
No one seems to want to address any of my issues. I am so frustrated and confused.

Any thoughts, experiences etc would just be nice to hear.

Thanks so much!!
Hi Hip Girl & Welcome. Although we are very sorry you are having all these complications and need to be here. You'll find many good friends, willing to support you, compassionate, and kind. I read your letter maybe 3 times, you have a lot going on.
First of all, you had regular x rays Sept 10th, and then again by your ortho surgeon. I not sure at all if a regular x ray will show up a stress fracture. I had surgery in Oregon and immediately got rsd in my shoulder-became frozen. Had 100 treatments and remission, they said don't be surprised if it goes to the other side after you move to Arizona. It did. more treatment. another remission.
Four years after my breast surgery that triggered my RSD, I was injured water skiing, left hand nerve pull. I was misdiagnosed as having RA, but the tests were negative for RA. So I went to Oregon to sports injury group and saw the hand Dr. -ortho, and in 1 minute he said RSD just from at it.Sent me over to the hospital nuclear mediicine department. They dye test shows up in detail what a regular x ray won't show up. It was positive for Rsd, He ordered a tens unit and started me into
PT. I came back to Arizona and found a neuro and ortho hand dr. that had a physical therapy group. Both Drs. agreed with RSD, the neuro did more testing-nerve. The ortho had his own therapists trained in RSD. If therapists aren't trained they can do great damage, like use Ice, too much pressure, aggravate the limb. Even though insurance doesn't pay for massage therapy, a good massage therapist can do a lot of good.This was back in Oregon. I took a pain pill and every week went into massage therapy and over to physical therapy. It was like torture, but I had no range of motion on my left shoulder. My rehab Dr. said I had a lawsuit, because delay of a diagnosis and treatment for rsd does huge damage that can be irreversible. My left hand is like a claw for that reason. After 50 treatments they wanted me to see an ortho surgeon who wanted to operate and break it loose. would still have to do therapy. I called blue cross and told them. I had already told the ortho surgeon No. But I told
BlueCross I had a choice of surgery or continue with pt and massage
therapy. I had been paying for massage therapy for 6 months weekly @ $60 a pop. What would they like me to do? He said just a minute, came back and said we would be happy to pay for the massage therapy!!!!!!!
I went into at least a year remission after pt and massage. I didn't know what I had, but I knew I could play tennis again,, water ski, snow ski, etc.
run. Then when it moved to other should after we moved to Arizona, I got a got therapist. he had just come of the pga tour and open up his new practice just a few blocks from our house. He was very good, and fixed my shoulder up. Another remission, back to tennis, skiing, hiking etc. One day while water skiing, I felt a nerve pull. Hand swelled up, went to Dr. and he diagnosed me with rheumatoid arthritis- tests were negative. So I decided to go back to Oregon to the sports injury group. The ortho hand dr. diagnosed me in one minute, sent me to hospital for nuclear med test-confirmed, ordered a tens unit and got my into therapy next day. Came back to Arizona and found a good neuro and ortho hand doc.neuro did more tests, confirmed and ortho agreed.ortho had his own therapists experienced in rsd. My hand, because of delay of diagnosis and treatment is the only limb I have that is partially paralyzed. about 50%
It's been 15 years and I am so grateful I am mobile. I swim a lot here. Keep the pool at 86 degrees. I've learned so much from this forum and been supported. Thank you everybody. About 6 years ago, a neuro said I had full body rsd, generalized. I also have internal. I have a great Dr. from New York.
He is a neuro, psychiatrist, and pharmacologist. It is so important to be on the right meds. There are good meds that work on nerve pain, so you don't have to be on narcotics a bunch. I have a conservative Dr. In fact, he put me on a 200 person trial and I started sleeping 10 hours a night, so the restorative sleep lessened my pain, and was able to lessen my vicodin from 6 to 4 a day and lessen the lorazepam (anti-anxiety) from 6 pills a day to 4.
Reflex sympathetic Dystrophy is this nervous system sending continueing pain signals to our brain after we should have healed from a surgery or injury. It is an autonomic diorder so affects our circulation, body temperature, and immune system. That why it is important we keep our immune system boosted by good diet and anti-inflammatory should be watched carefully.
We will be high blood pressure from RSD and the para sympathetic nervous system will cause low blood pressure, which can become very low and pass out.
Because our body temperature is affected, we can have ice cold feet and hands and then the next hour they are red and on fire. We have sweating problems. We can get skin problems like red dots. itchy, Be careful in the sun, use lotion. You don't want to be burned.
Some meds cause weight gain so be careful. I was on neurotin and lyrica (not at the same time) but gained on 3200 mg of neurotin. I was having electric shocks and jerks, jolts thru the brain and spasms in legs and arms. Some are in wheelchairs. I'm off neurotin now and that feels good.
RSD affects the limbic part of our brain that controls emotions, short term memory. We can be talking and can't remember a word, or be able to finish what we were saying.
You need to take precautions before dentist, it can go in your mouth.
A website that is informative is RSDSA.org it our national organization-
they had their annual meeting here in Scottsdale and was very good.You can put your zip code down and get the closest support group meeting and a phone number for contact.
Also, rsd.rx is good. You need to go to puzzles #1-146 a lot of good information.
So after about 50 more, I had full range back. The pt. knew we were moving from Oregon To Arizona, and told me not to be surprised if it went to other shoulder. I thought that sounded strange. Still no diagnoses. We moved and about a year later, sure enough, it went into my right shoulder.
You need a good RSD Dr. are you able to travel? It's good to keep a journal and copy of all your medical reports. You have 2 years usually to file a lawsuit.The 2 years is from the accident or when you find out the Dr. was neglicent.Those are very stressful and difficult to prove. I forget you were hurt on a run-not a WC? When my Mom died from malpractice, we got an attorney from a larger city specializing in medical malpractice. We won a large settlement. She wasn't alive, but we did a video desposition of her testimony and cross examination and than was shown at trial. My daughter is a court reporter, incurance companies have deep pockets and if they think they can win, they will do the suit for percentage of outcome.
You want to stay mobile, water is the easiest. The right meds is huge is getting some quality of life without being snowed. I use as little as possible. Stay on a regular program. walking even 5 minutes or 3 minutes a built up.
If Drs. find out you are in litigation, they back off and don't want to testify against their golfing buddies.
That's why we went to a larger city to get an attorney and expert witnesses. I'm not encouraging you, I just sensed some bad feelings toward your medical procedures being done too soon. That's one thing that is critical for us not to have surgery if at all possible.
I hope this doesn't discourage you. With proper care you can do a lot,it's just different. You go thru the grieving process-the 5 steps. I have been in counseling -in my 6th year. Many Drs. don't take medical insurance so I've been paying $250 an hour every month, but it's worth it. I just lost my health insurance and now paying for all meds. I'm going to try and get SSDI.
Sorry I got this jumbled up. We were in Oregon . Got RSD there. Moved to Arizona. Got RSD 2nd time. Had a remission are each therapy. The got RSD in hand -water skiing, misdiagnosed went back to oregon and got correct diagnosis. back to Arizona and continue in treatment.
What part of the country do you live in? Others know a lot of good Drs. thruout the country. Take care, one of your new friends, loretta with soft hugs
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Old 02-11-2010, 01:17 AM #7
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Originally Posted by hipgirl9109 View Post
I will apologize in advance for such a long post. I am so frustrated with my injury and every dr i have seen acts as though they don't want to talk about my problems or what is going on.

I was a runner before this happened. On 9/1 i hurt my hip and could barely walk home after getting only 2 miles into my run. On 9/10 i went to my FNP and she too Xrays and said it looked normal. Probably a muscle.

Saw Orthopedic Surgeon DR on 9/26 (that i found myself, no referral) i believe. he looked at previous xrays taken at my primary care on 9/10 and they did appear normal. He lifted my leg up and to the side slightly. He asked what my symptoms were. Based on clinical he said he suspected i had a femoral neck stress fracture. He told me to take it easy. But no specific "do not do's" were given. If i had pain don't do it. If it got worse i was supposed to call immediately. I was given an appt in 4 weeks. Went back in 4 weeks, xrays were taken. Xrays some forming of callous on top and bottom of femoral neck. My pain was still present. He moved my leg up and side to side slightly. He said since it was showing signs of healing he felt i would be good to go. He said i did not need another appt.

Called on 12/7 spoke to nurse complaining of continued symtpoms and seemingly worse. Dr suggested i come in. Came in on 12/8. Xrays taken again and appeared the same as they were at my last appt late in Oct.
Dr said at this point he suggested surgery because there could be issues with loss of blood to the femoral head and then that could lead to hip replacement etc. I asked specifically "how do we know its not completely healed?". He said at this point it was purely clinical. He also said in hindsight had he thought it was this severe he would have had me on no weight bearing w/crutches. Surgery scheduled for 12/11. (in hindsight i am now wondering why we didn't eliminate other possibilites, ie give me an MRI).


Went thru surgery, woke up in anethesia recovery and right foot was cold. Mention from nurse regarding this and asking about it. Couldn't feel my leg, but i didn't put anythought into it because of the screws i knew were just put into my leg.
Went out of that recovery back to my "room". Foot extremely cold, recovery room nurse told my room nurse and a sock was put on my foot. She asked if i could move my toes, at that point i couldn't. I mentioned i couldn't move my leg either. She asked if i had a nerve block and i told her i did not think so because we had agreed to general. I would say within about 45 minutes i could move my toes up and down enough the nurse was satisfied. Given pain meds, etc and was discharged. My instructions were basic. I had a preop scheduled 10 days later.

For the first few days i could not move my leg w/out physically lifting it up. Foot cold and numb, wore two socks at all times. Constant muscle spasms in leg for first 5 days or so..mostly at nite. Had constant twitching, spasms in thigh.
5 days post op, called DR about foot numbness and coldness and slight swelling. I went in and he looked, said it felt cold, said he could feel a pulse on the top of my foot, checked my incision site and said it looked fine. I asked when i could drive and he said now.

10 days sutures taken out, incision site looked good. I mentioned the foot, said it hadn't gotten worse, but still the same. He said it was probably part of healing and was not concerned. I had to ask for what excercises i could do.

3.3 weeks post op, called and spoke w/the nurse about my concern with the foot. Explained it was numb, purple when vertical, cold up to my knee and sometimes my thigh. Dr called the next day. He asked/said "so your foot is still bothering you" i said yes. I told him what was going on and he said it wasn't really something he's seen. He said it could be because i'm thinner than most of his patients? I asked specifically about nerve damage. He asked again what my symptoms were. I told him. He suggested i see a PT and get some massage in my leg to get things circulated or compression stockings. I chose PT.

Went to PT following day. No massage was done..bummer She did some sensory tests, looked at the color and told him to do 4 excercises which were similiar to the ones from the list i had gotten from the OS previously. Said she felt there was nerve involvment, but there was nothing she could really do while i was not weight bearing. Said she'd call and talk to my DR. Never heard from her or him, not sure if she called or where that ended.

Went in to see my PCP who is a CNP 1/12. She noted foot color, lack of pulse or hard to find pulse on foot and coolness of leg up thigh. Sent me for venous ultrasound. US tech immediately asked if i was here for a venous or arterial ultrasound because although my symptoms sounded arterial the paperwork said venous, i did not know so she confirmed it was venous. She appeared miffed by that.
Ultrasound negative for bloot clots. FNP told me to go back to my OS and have him look at it again, or have a collegue look at it. Basically, she didn't want to deal with it i guess.

Spoke with operating surgeon right before my ultrasound to let him know i had gone to my PCP and what was going on. He said he had no idea why i was having these problems as open reduction/internal fixation for a stress fracture is a simple procedure.
Called OS back 1/14 to let him know the ultrasound was negative and that i would like to figure out what is going on or be referred to a collegue in his office who might better help me if he is uncertain of my condition.

Called me back to schedule appt. Told me after i asked of nerve involvment and arterial involvment that neither were in that area.

Saw ortho on 1/15 said he felt a pulse just fine in foot. Acknowledged the coolness of my foot. Said he wanted me to go weight bearing. Mentioned that there might be some nerves that got rattle up during surgery, some peoples bodies just don't handle surgery well. Only a day ago he was telling me no nerves in that area.

Called FNP after this appt, to tell her what was done/said. She told me to just try to "get better", go to therapy, whatever it took and try hard. WTF? I was insulted and hurt because that is my life motto..try hard, don't let anything get u down.

Fast forward to 1/24..hands are turning, pale, grey/blue/purple, the entire hand is molted looking, then gets red like sunburned. Both feet are now turning purple when dangling in a chair. I get cramping in my foot, calf and up in my thigh. Pain is worse during the late evening and thru the night. Bottom of foot is dried out looking and has a constant, burning type feeling to it. I have a great deal of pain over my incision site still and when i move i can feel a grinding/catching pain that feels as though it is in the bone.
I still have the same groin pain that i had prior to surgery. I am having a hard time with internal and external rotation of any kind. Specifically when i have recently tried doing yoga. Stretching seems to aggrivate symptoms. Stationary bike ok for 5 min..i have been pushing thru the pain and if i cock my leg a certain way can go about 20 min. Weakness and shakiness in leg aftewards, but that is probably from lack of use.

Went to another family practitioner 2/9. Assumed i would at least get blood work done. My hands are constantly red/blue/purple in color, both feet hurt and my legs are beginning to cramp at calves when i sit in a chair. She checked for pulse in feet, felt a solid one. Told me she didn't know why my Dr did the surgery and that she didn't know what was wrong. I got flustered and she could tell and asked what i wanted her to do? I said i didn't know but how come u won't do blood work. She said i had complete blood panel included ana, sed, ra 10 months ago and the did a red/white blood count before surgery.

But i have symptoms now that i didn't have before... she said she would do some research? OK??
No one seems to want to address any of my issues. I am so frustrated and confused.

Any thoughts, experiences etc would just be nice to hear.

Thanks so much!!
Hi Hip Girl, Under pictures on the opening page, you'll see different hands arms,legs feet with various colors. blotchy red, bluish-all temperature change and circulation issues. You mentioned the groin area-is it red/hot? Lymph glands are in that area too that can swell up, like under our ears. Right now my feet a freezing cold, but I have burning red places on legs and upper body.
I just glanced over your letter a couple more times. Have you actually been diagnosed with RSD or CRPS They are really the same thing. I'll explain the difference another time. Take care, loretta
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Old 02-11-2010, 01:50 AM #8
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Default Sorry bout ur trouble

Hi!.
I read ur story. I am sorry to hear about your story and it sounds a little like mine.. Mine was a work comp thing and they really kept throwing me around to different doctors and not telling me anything.. Wouldnt give me anything for pain and saying i was faking or whatever.. but i decided to call a lawyer and he gave me great advice and told me to find a doctor and not tell them i was involved in a case until i was in a room then they couldnt refuse treatment.. So i would suggest you go to a major ortho doc in another city who you have never seen before.. Explain about your pain and every thing, then when you get in there to see them tell them bout ur surgery and u can even take ur records with you so u have them if u like.. Then if they are a good doctor they will run some tests to find out what is exactly wrong.
I hope this helps you.. Hopefully your new friend Barbara
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Old 02-11-2010, 11:41 AM #9
hipgirl9109 hipgirl9109 is offline
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Thank you kindly to everyone for their warm responses.

I actually have not been diagnosed with RSD and only began searching on symptoms via the internet when an internist from a running forum i participate in suggested RSD (when only my foot was turning colors and having temp changes).

I think my initial post was a bit convoluted. I was having a very bad day, full of frustration, disappointment and after re-reading my feelings definately made the post hard to decipher. this one may be too (i'm still having a hard time explaining all i'm going thru)

My confusion lies in severeal areas:

1. is my pain that is actually in my hip from part of the healing process, the screws causing irritation, or something else. The pain is electrical shock, burning in the hip (yes I DO HAVE A SWOLLEN LYMPH NODE IN MY GROIN, larger then 1.5 cm. )Some of my fellow runners have suggested a labral tear. (unfortuantely, this is where i was getting the run around from my ORTHO. he was simply saying after surgery he had no idea why i was having so much pain because it was a simple surgery) I think the pain is a combo of healing from surgery and something else going on.

2. Had it stayed in the hip area i would have dealt with that by getting a second opinion with another ortho.

3. Now my right foot is numb and burns or feels more like icy hot (the feeling u get one it's so cold, it travels up my leg to just below my knee. Then my hands started changing colors and having the same "icy hot" feeling. Then my left foot is showing the same symptoms. All my extremities look like there is no oxygen being supplied thru the blood to them. What is causing this? My hands aren't tied to any nerves that could have been damaged during surgery. At least nothing i've read indicates that.

4. So with these "unrelated to injury" symptoms (or at least i assume/assumed they were) I go to see two family medicine practitioners. Both of which just don't seem to want to go any where near the issues i'm dealing with. I am SO SO surprised by the "i dont' know's" I mean if i walked in to the office and didn't mention my surgery, i think they would be all over finding out why i'm having these issues.

5. I don't want to say the OS did something wrong or did not properly diagnose me. What i do know is that i still have very similiar pain in my hip, new pain in my hip, severe temp changes in my feet and hands w/icy hot pain and my left foot has a pins and needles feeling. My feet and hands look very similiar to pics on here.

I wouldn't say the pain i have now is severe. The pain i had for the first 10 days was severe. The pain i have now is extremely uncomfortable and gets more irritating as the day progresses. Night time is the worst (in bed).

My next step is to get a second opinion from an Ortho in another city.

I've always been a very holistic medicine type person, firmly believing alternative medicine and that your body heals itself if given the opportunity. I can't say that this experience w/DRS. has made me any more faithful in western medicine.

I appreciate the opportunity to vent. I think just being heard and knowing that someone can symphathize with you when you can't get any answers makes all the difference in your mental health. I believe 100% that your mental being can harm or improve your physical being and even thought i believe that I find myself falling in that "woe is me" mentality.

Thanks for allowing me to come on here and just vent away regardless of what condition i may have.

I wish you all a day of normality and free of pain or discomfort (as much as you can).
hipgirl
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Old 02-11-2010, 11:54 AM #10
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Certainly CRPS is on the list of possible complications. I think that is there is a question of mismanagement as you went originally for what clinically would appear to be a hip stress fracture. X-rays early on are almost always negative (but later show a callous formation). In my opinion, generally, when a female patient who is a runner comes in with a sudden onset of hip pain that occured while running, regardless of the x-rays being done or not (although should be done!), it is a stress fracture until proven otherwise. If the patient is handled in a cavalier fashion as you were, then it can progress and fracture completely and lead to AVN with eventual hip replacement. An MRI would have revealed that and despite all, I would have thought you should have been given crutches on the first visit and rendered non-weight bearing until sufficient healing prevailed. I am unclear as to why and on what he performed surgery.

Secondly, your complaints of color changes, etc, all point to post-surgical CRPS for which the best outcomes occur with early diagnosis and treatment. Sounds like that did not really occur. Nevertheless, without delay you need to get yourself to an pain management specialist who is experienced in treating CRPS patients NOW! Your PCP likely will not have a good experience base to deal with this, the ortho should but may be in denial so it is incumbant upon you to get to the right doc.

As for med-legal issues, there probably is some basis for action but you would have to talk to the PM doc (once you get there!) or perhaps get another ortho opinion (one who doesn't associate with your surgeon) for that. There are errors of ommission (ex: not recognizing the CRPS and referring, not ordering the MRI or recognizing a potential hip stess fracture) and errors of commission (screwing up the surgery). Assuming you have CRPS (though you may not), even a perfectly performed surgery that was indicated, that orthopedically, had excellent results, can end up with complications of nerve damage or CRPS. And it is not malpractice, rather maloccurance. If the surgeon screwed up technic-wise or in another way that is decidedly below the standard of care, then you may have a reason to go after him, if that is your desire.

More emergently, you need to get to pain management ASAP, another ortho and perhaps a neurologist for assessment and tests for possible surgery related nerve damage. Lastly, you may want to talk to an attorney...
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