Quote:
Originally Posted by hipgirl9109
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