Post Op TOS now diagnosed with RSD - a nightmare!
 

Hi everyone,

Well it's definitely been a while since I've posted. I'm sorry I've been away so long. Life has been pretty hectic and I have been going through hell the last year and a half.

I was diagnosed with TOS in January of 2007 and went through so many courses of treatment and all FAILED! I was in so much pain and my right arm was pretty much useless. I couldn't hold a pen or write my name. It was horrible! I was told that the only thing left was surgery and that was what I needed. I was scared and I worried about it but I was told it would most likely be a success for me and I would see improvement. I did have improvement for a little while but things started going down hill. I never really received post op physical therapy which I think is some of the problem. 5 months after the TOS surgery, I was back in the hospital with thoracic spine surgery. I had a major herniation at T10/T11 which was causing spinal cord compression. They have no clue why this happened. So I had 2 MAJOR surgeries within 5 months of eachother. The spine surgery was very successful. I was feeling better immediately following the surgery. I was still having lots of issues with the TOS though. I started going to physical therapy 2x per week and traveled almost an hour to see this therapist. He is an expert with TOS but even still he had trouble. We just couldn't seem to get anywhere at times. We started making some progress and I felt a bit better. I started exercising and even doing light jogging on a treadmill but I would do ok then have a huge flare for a week or two. We were constantly up and down with things and he said we just kept hitting a dead end.

I started going to multiple Dr's once again because I knew something was wrong. I was losing my hair, irritability, skin and hair changes, constant vision changes and headaches. My pain management Dr tried a nerve block which went horrible wrong! Instead of getting relief, I was in major burning pain for 2 weeks! I was trying different things and nothing was working. My Dr's looked at me like I had 2 heads. My primary Dr wanted to think that this was all because of STRESS! I begged for these Dr's to look and find the problem..something was wrong and I knew it! Things were changing rapidly! I had 3 different pairs of eyeglasses in a year! The headaches were getting so bad and I couldn't see. I was dizzy and feeling awful. I was scared to death. My primary Dr called in a prescription for antibiotics to try and treat what he thought may be a sinus infection! What a joke! I wasn't even sick! I called my surgeon's offie and they told me to get to the ER. My husband drove me down to philly to Hahnemann Hospital because that is where my neurosurgeon was at and my spine surgery was. I trusted them. They knew I was coming so they brought me right in and took charge. They called in Neurology also. They definitely could see something was wrong and they admitted me for 3 days and did every test under the sun. I even had a spinal tap done! OMG THAT WAS AWFUL!!! I never ever want to do that again! My neurologist in charge was pretty sure he knew right from the start that this was CRPS/RSD once he heard I had TOS and was still having problems. But they had to rule everything else out to get the diagnosis for sure. I left the hospital with the Dr telling me he was sure that is what I have. I saw him almost 2 weeks later in the clinic and it was confirmed that I have severe RSD.

I'm a real mess at this point. I was told that the only treatment that will possibly work at this point is the Ketamine treatment. I was a little bit in shock and quite upset. I went down for the QST (sensory test) and it showed exactly what I figured it would. I have hypersensitivity BIG TIME to cold and also to hot but cold is SEVERE. I can't stand fans, air conditioning, wind, changes of temperature, the shower, just about everything drives me NUTS! My family is going crazy with me because I hate the fans on or the cold AC and now it's hot outside. I can't stand being anywhere! I hate going into the grocery store, especially the cold sections..OMG I freak out!

I have constant burning pain. I feel like my right arm is on fire from the neck to the hand. It's horrible, It also spread to my left foot and now starting in the left arm and left leg. It's been spreading and pretty fast. I am having diffficulty using my right arm now and bending my wrist. My hand at times just doesn't work. It hurts so bad and is so stiff. I was picking up an empty soda can and I just couldn't hold it with my right hand. I cried! My skin is dry and sweaty all the time. I feel hot like I'm on fire but if someone else touches me they say I feel cool. My hair on my legs changed to coarse hair and I can't stand it. I have a red rash on the right arm and other places at times. I look like I have a bad case of the goosebumps most of the time. My legs and arms get red and blotchy looking then they can change pale white then blue/purple. It's horrible. It's also in my face. My face hurts and I get all red and rashy looking. My vision has changed for the worse again. I can barely see at times. It comes and goes. Sometimes everything in front of me is a blur. I have lost peripheral vision also and my right eye is now drooped and I have trouble opening it. The Dr's have to actually try and lift the eyelid up. It looks swollen and droopy. My scalp hurts, my ears hurt, everything hurts at times. My joints get stiff and I just can't stand being in this body!

I totally hate this..I am so darn frustrated and can't take anymore! My body has been through so much. I also now have trouble concentrating and thinking. My short term memory has gone bad also. It's becoming full body RSD and I guess my only chance of having any life is to have the ketamine treatment. I can't picture another 5 years of this. I don't think I can tolerate another year! It's horrible and I cry at some point every day. It's just so hard.

I'm looking to talk with others and learn more about the ketamine treatment. I'm on the waiting list for inpatient (5 day) but they will start me on the 10 day outpatient. I would like to hear from anyone who has gone through it and the outcome. My family is freaking out over this. I need some help through this ..I don't think I can do this alone. I've been fighting but I'm losing the fight it seems.

I hope to hear and talk with you soon!

Momz

Hi Momz,
That's quite an ordeal that you've been through.:(
I hope the ketamine will be helpful.
:grouphug:

I understand alot of what your feeling. Helpless and Hurting,but you will get better!!!! I had tos 20 yrs ago and developed RSD.It gave me back the use of right arm and got rid of alot of zingers and burning in it. No spinal surgery but after all these yrs you can see the damage on my spine, discolored. my tap was 18 yrs ago but i still remember it, couldn't lift my head for 30 days. I'm numb on the right side from eye down, doesn't droop but feels like it sometimes, this got alot better over the yrs. Affected my right leg and left arm. but their alot better. I might be able to offer some advice but I have a few questions. how long since your surgeries? What all did they do with the tos? How old are you? Do you have any jerking or muscle spasms? I don't know anything abt ketamine the only they offered 20 yrs ago was drugs., so I went to alot of alternative treatments and some worked some didn't .I know your family is upset, I remember my husband crying becasue he felt helpless.you are not alone. Denise

Momz,
You're describing almost exactly what I went through (Painwise) back in 83. It took 7 years for a diagnoses.
Why aren't you on daily pain meds?
There is no cure, there is management.
I've had this for 25+ years, rsd, tos, discs, and then a second accident in 98, that gave me a brain in jury.

You've got to get some REAL pain medications! and Get your sleep checked (I would assume you have sleep issues).

PM me, if you wish.
I've had the treatment at Hahnemann too.

You're in the right group here, you know that.

I wish you the very best!

Pete

I am so sorry for all you are going through. My eyes are effected as well though I am still not sure if it is rsd but every other specialty and condition has been ruled out. My major rsd is the foot/inner ankle/calf. Anyhow though not as bad as your results but my nerve block made me way worse too. I had looked into the op ketamine but right now am working with oral meds since the scs had been ruled out and the lidocaine infusion made me worse as well. There is another girl here who has ketamine and I think has gotten help from it. She goes if I recall to LA. If you do a search it may come up. I wish I had more direction and answers for you. As you know we all respond different and is part of the frustration. Are you currently on any oral meds for now? Hang in there and sending better thoughts

Thanks to all that replied

I am trying to enjoy the nice weather we are having this weekend. Yesterday was a nice sunny day and forgot sunscreen. I ended up with a bit of a sunburn on my shoulders. I didn't even notice it. My family keeps asking if it hurts but I say no..the burning pain I am having is far worse and I don't notice the sunburn. Today my system is out of whack. The fans on are driving me nuts every time I walk under them or near one. I feel like I'm on fire and the breeze is HORRIBLE! I am having issues with walking now also since the RSD has spread to my left foot. I seem to be limping alot and having trouble using the left foot. It gets numb and burns...kinda hard to explain. I seem to be walking on the side of my foot also. It's hard to put my foot flat. The burning is also starting on the left arm as well. The Dr said I have full body RSD and I guess this is what goes with it. I just cried some this morning because i am so limited to what I can do.

I am 36 yrs old and have teenagers at home. I am currently on neurontin 800 mg 3x a day but now taking a bit more because that doesn't quite cut it, fioricet for the headaches and pain, 60mg cymbalta to help with nerve pain. I have been lucky and not been hit with depression yet. I am a very tough and stubborn person. I am more angry then anything. I do get upset and down but depression has not set in. I've been fighting this whole time but I am starting to get a little tired of fighting when I see I can't win the fight.

I do have an open w/c case. I fought hard for that also. They put up a good fight for a year and a half but they lost on everything. I won my case based on TOS but now I also have RSD thanks to the TOS so I'm afraid of a new battle. We are submitting the bills to w/c but we'll see how this goes. I was sent for an IME in May and it was funny..the Dr who saw me was definitely seeing issues. She wasn't even able to touch me..I jumped away. She then saw my fingers turn blue and I was sweating like crazy and it was cold in there! She was wearing a sweater and I was wearing a tank top! She then asked me if "anyone has ever mentioned CRPS/RSD to me" I was a little stumped...now a little over a month later..I'm in the hospital and diagnosed with it!

I have decided to move forward with the ketamine treatment but I'm on a list and it should start in the fall. No other forms of treatment has worked. I have been through endless PT sessions, nerve blocks, accupuncture, meds and more meds, tens unit, chiro, etc, etc...nothing has worked! I am a mess and need help. The RSD progressed rapidly over the last few months and now we are all worried about it affecting internal organs since I am losing hair, have vision problems, IBS, nail and skin changes, etc. It's a mess and I can't see living like this forever. I have some family members who just don't understand this and are not being supportive. My husband and kids do understand because they see what this is doing to me. They don't like seeing what I'm going through and they are VERY worried but they are helping as much as they can.

It upsets me because this does not just affect me..it affects everyone. I'm not the same person I used to be. This changes everything.

Thanks again for your support and if anyone is in PA and would like to exchange phone #'s and talk some more..pm me ...I'm getting pretty lonely these days.

Just wanted to say hello. I am very sorry for your pain! I too, have recently been in excruciating pain. An arm surgery gone bad. I know how overwhelmng the pain can become.:eek: My heart goes out to you, truly.:hug:Continue taking care!:grouphug:

at church we prayed 4 all of u RSD patients - we've prayed 4 me over a yr now....i sympathize w/air blowing, sunshine, cool rms, etc. we all have our "mixed bag" of prob. remember that God is in control! pray 4 comfort, peace & understanding.... luv 2 all!

Hi mommzpeachy and welcome back,
I''m so very sorry you are going thru all this pain and frustration of being passed from Dr. to Dr. I got RSD following breast surgery, and it was 4 years before I was diagnosed.Following the surgery, my arm swelled up and became immobile, frozen shoulder. The breast surgeon partner withdrew fluid in huge amounts. It was lime green. Of course no one mentioned that meant INFECTION> Sent me to a rehab Dr. and said I'd need a few physical therapy treatments. Well , after 100 treatments and 100 massage therapy, I got the use of my arm back. They told me, don't be surprised if you get frozen shoulder in the other arm. Well we moved from Oregon to Arizona, and I got frozen shoulder in the right arm. More therapy, got my arm back. Was OK for a few months. I was water skiing all summer and then in Sept. I felt a nerve pull in left hand. It became frozen straight. The Dr. said I had Rheumatoid Arthrisit. I was misdiagnosed, but knew I didn't have rheumatoid arthritis. My left hand was curling up . I flew back to Oregon and went to a sports injury group, the hand specialist. He diagnosed me in 1 minute. Sent me to hospital for nuclear med test, confirmed. Ordered a Ten's Unit and started me in physical therapy. I came back to Arizona and found a good neurologist, more tests, and meds. Saw a Hand specialist, confirmed rsd, and started physical therapy and desensitization. Because of the delay of treatment my hand is permanently curled like a claw. But I'm grateful because of the desensitization, I can use my left hand again, I can cut up my food, I can peel potatoes, zip my zipper, button buttons.They had me do the desensitization every day at home. Take about 6-7 plastic bowls. Fill one with cotton balls, another with soft coffee grounds, one with rice, one with popcorn, The different textures are good -run you fingers, toes thru the bowls. You can put fabric also in the bowls. Doing this over and over gets your limbs to desensitize. Massage therapy was painful, but very good for me. Physical therapy was likewise painful, I took pain med before going each time. My daughter would drive me, and I would get the massage therapy first, I paid for that, and that loosened my body up and then would get the p.t.
Swimming has been one of the best things too. The water needs to be at least 86 degrees. My toes started curling up off the floor, My Dr. had me swim every day and curl my toes, and after about 4-5 months, my toes touched the floor again. You can also do this in the bathtub, but swimming keeps you mobile.
To help with the never ending pain, I used distraction, Movied, comedy, music, scented candles, bio-feedback, massage therapy, essential oils, swimming, floor stretching, meditation, prayer, visualization, journaling. Journaling is a wonderful way to release your feelings, I think counseling is extremely important. WC should pay for it. I went thru 2 years when my partents died-pre rsd. Then when I got diagnosed full body, the neurologist suggested I see a psychiatrist. to help me cope with this life alterning monster. I didn't like the two people he suggested, so I found my Dr. in yellow pages.!!!Can you believe that. I have been seeing him 5 years. once a month. He doesn't take insurance but he has hel[ed me so much the $ is worth it.
RSD is an autonomic disorder. That means it effects involuntary organs, like the heart, lungs, kidneys, bladder. It affects our circulation, We can have both hot and cold symptoms. We can have the burning pain high blood pressure caused by the sympathetic nervous system. The para sympathetic nervous system causes low blood pressure and deep cold bone pain. I bought a $30 blood pressure kit to keep an eye on my pressure. I woke up one morning and passed out-an hour and half, by husband thinks-He was upstairs in his office. When I woke up, i couldn't get up so crawled on the floor till I got to the door and banged on the door. I asked him to call 911-4 times he was in shock. The ambulance came and paramedic said he thought I was dead. My pressure was 90/40
Spent 4 days in semi-ICU. My Dr. said it's likely to happen again.
I was on 3200 mg. of neurotin for years, then switched to Lyrica. For me, the Lyrica worked better for pain. Last October, I asked my Dr. if I could go slowly off, I'm am doing real well off the Lyrica. I was so foggy in the brain. Still have short term memory problems and grasping for words, while talking. I had gained 60 lbs on neurotin, and lost 30 lbs already and going for the 2nd 30 lbs. I know that's not healthy either-the weight.
I rarely have a spasms now, or electric shock etc.
I take 120 mg. of cymbalta, two blood pressure meds, Toprol xl 50 mg. and diovan 160 mg.5 weeks ago I stopped taking Ambien cr It stopped helping me sleep. I laid awake all night for weeks till about 5-6 a.m. My Dr. switched me to seroquel. Normally it's used for bi-polar, which I don't have or schezophrenia which is spelled wrong and I don't have that either. My Dr. is just finishing a 200 person study on low dose seroquel for sleep. With restorative sleep, pain levels drop, I saw my Dr. today and he allowed me to reduce two meds as I saw fit. Because of the good sleep, my pain level dropped and so did my anxiety med. I went from 6 vicodin a day to 3. I went from 6 mg. of lorazepam, an anti-anxiety to 2 mg. of lorazepam. I feel so much better, I still burn some, but nothing like before. He is about ready to publish report on seroquel for the pharmaceutical company.
Please don't give up, You just need the right amount of drugs. We are all different as to what works well for us. This is so complex, it takes Drs. time to figure it out.
The Ketamine study was done here in Scottsdale AZ at the mayo clinic. One of my good friends assisted Dr. Swartzman, Harbut, Correll and others.
My Dr. just built two clinics and put HBOT in them. That is what I'm going to try, as soon as I built our business back up, from the economic disaster. Insurance doesn't pay for HBOT and it's spendy. I didn't sue my Dr. so, everything comes out of pocket or private insurance.
I'm glad you don't have depression. That's wonderful. I'm going to buy Michael J Fox's book, "Always Looking UP"
I'm 61 and have a caring husband, and wonderful married daughter and son in law. They have been married for 9 years. She is a court reporter and her hubby is an commercial airline pilot. They have a min pin doggie, named Roxy and we have a main coon cat named Sabrina. My daughter & hubby moved to Chicago for the airlines for 15 months and then came back. They are living with us for a while. We love it.I think they are going to stay another couple months, but I wish they would stay longer. Our house is big and they have lots of privacy. Laura had a RSD case=deposition pre-trial. The Dr. didn't tell this lady, she could get RSD from the surgery he was going to perform on her.
If you would like to give me your phone number, I'd be happy to call you. Thru the Private Message. Take care of yourself.

MOMz,
Here's one thing I worry about for you.
Your family is asking if it hurts. You say No, because you're angry, and stubborn.
They're obviously getting some "vibe", and they may think it's something that they're doing.
Nobody likes to hear a whiner, that's a given. But, you've got to let them know, at least, that you hurt, and it's not them, that's the reason that you're angry, or "acting" as you might, when Any Normal Person is in pain!

Emotions run deep with this monster, and it can consumer a family unit.
I always say honesty is the best policy.

I'm sorry to be so in your face with this.
I don't mean to be that way, but consider it?

Thanks,
and
Feel as well as possible.


Oh, BTW, you don't really have any real pain meds goin on there....
You might want to talk to your doctor about better pain management...
:hug:
Pete
asb

Well I'm having a rough week this week. I am in a huge flare up and been trying to get it to come down. I had neuropsych testing on Tuesday and I just couldn't believe how PAINFUL it was to THINK! We didn't even get half way through the testing. It was a mierable rainy day Tuesday and I had to walk from the parking garage to the building in the rain and it was only 65 degrees out! I was all freaked out by the time I got in the office. Then I was sitting in the waiting room and the AC kicked on and started blowing right on me...ACK! I was moving all over the place. People were looking at me a little weird but this one woman who was there knew exactly what was going on.

My memory and concentration has definitely been affected. During the testing, I started burning so bad down my right arm then the headache started..then everything hurt and I was feeling sick. By the time we were done..I could barely walk and was throwing up from the pain. I was exhausted and upset because I realized how bad things are. The Dr also did and said "I'll be cleared for ketamine".

I do have full body RSD. It has spread and I really hate the feeling like I have bugs crawling on me or being stung by bees! I look ridiculous when I'm always looking to see if something is on me. I so hate shaving my legs now also! UGG! This is very difficult in every way shape and form!

I totally understand everyone's pain with this and I'm glad there is somewhere we can all go to vent.

I finally got my family to understand what's going on for the most part. My father finally got it. I don't like to talk about it much because I get upset and cry. I try to not talk or think about it but it's hard. I have learned to relax more and sit on the floor in darkness and quiet and just meditate. I listen to music and do some light stretching also which helps a little. I can't stand lights so I'm always in the dark. I'm learning little by little. It's just so much to absorb and accept

I am not taking narcotics because I was on morphine for 2 years and came off of it in April. I went down hill after that. THe morphine masked the symptoms and made things worse. At this point I am taking 2400mg of neurontin a day, 60mg cymbalta, and fioricet every 4-6 hours (which helps) and lidocaine patches. I have allergies to most medications so it's not easy to find something that works for me. Morphine was the only narcotic I really could take. There are days that I wish I were still on it but I don't want to go that route again. It was AWFUL trying to come off of it. What a nightmare that was!

Anyways, I have been thinking about how I'd like to start a local support group. Not much is around and I'd like to get people like us together and find things that we can do together instead of thinking about pain all the time. I'm just not sure how to get that started. ANy suggestions?