New and Lost
 

Hi everyone my name is Jennelle and I am new to this and a little lost. I go to untold amount of therapy and doctors but have a hard time finding the right kind of doctor that knows enough to help. My pain person actually seems to know the most, the others say they treat RSD but pass the buck to other doctors for treatment. What Dr. do you all see? To make it worse I am at the whim of my L&I people to get treatment. 4 Dr have recommended a sympothectomy... anyone else had this or a spinal nerve stimulator placed? If so please let me know what the experience was like. L&I won't pay for either- I have had 6 nerve blocks and they helped at first but now only for a couple of hours. PT and OT have dropped me until I get the surgery that was denied, I can't get L&I to pay for message so I do home programs...any ideas? Please, please, any help as to find a doctor that knows what to do? I feel like my life is on hold from my wedding (supposed to happen last year) and starting a family (other than my 3 soon to be step-kids). HElP!!!! Thanks so much finding you all has made me feel so less alone!
Jennelle

Hello Jennelle and Welcome to Neurotalk - you will meet many great people here who I am sure will be more than happy to help you if they can!!!

I am SO sorry to hear that you are going through all of this right now and really hope that things start getting better for you real soon!!!:hug: Please know that you aren't alone and that I DO understand some of what you are going through!!!!

It is extremely important that you try and find a doctor that understands RSD. It took me about 5 months to finally see a doctor that understood RSD and during that time, I was just getting worse and worse. I see quite a few doctors to treat my RSD however the main doctor that treats me is a Pain Management Doctor. I also see a Neurologist for the Myoclonic spasms and Dystonia's I have, Physical Therapist's, GP, Orthopaedic every now and then and an Orthotics specialist for my splint.

If you aren't happy with your doctor, please try and find another one!!!!! I KNOW it is extremely frustrating trying to find another doctor but it's really important that you get a doctor that you are comfortable with and that can help try and treat you!!! From what I understand, most RSD'ers see a Pain Management Doctor as they are usually the best doctor to treat RSD - a PM Doctor was the doctor that diagnosed me and has been treating me for nearly 2 years now!!

There are quite a few people on the forum that have had a Sympathectamy. From what I understand now they, they are NOT recommended at all as in more cases than not, they just aggrivate the RSD and make it worse and the pain doesn't go away. Also from what someone told me (i'm not sure if this is true or not though), if you have the Sympathetic Nerve cut then there is no chance of finding a permanent cure even if a cure becomes available as the nerve affected isn't there anymore. Please, please ask your doctor lots of questions before you decide to go ahead with any drastic surgery like this and ask people that have the procedure what it is like and if it helped!!! No-one can force you into doing anything - it is YOUR decision and you know your body better than anyone!!!!

Take care and know that you are in my thoughts and prayers. If you need anything, I am here for you!! I hope you feel better soon!!:hug:

Alison

Jenelle,

Hi and welcome to our family. That is what we are, family. We are here for you thru all of your ups and downs. I have had 2 scs implanted. The first was in for almost a year, but my PM (pain management) dr put the battery in my butt. It was uncomfortable and it was moving around. The 2nd one was to move the battery to my side, and replace the leads into my spine. Unfortunately,I ran into some problems from surgery and it had to be removed. Before you get the scs you must undergo a trial. I loved mine, although they don't tell you that you will be really sore for the first few days. I loved the trial and I loved the perm. It was just one of those things that caused it to be replaced. My 2nd surgery was done by a neurosurgeon. I'm now seeing another PM dr. and I really like him. He was put me on this wonderful new medicine called OPANA ER. I'm still getting used to it, so I'm still sleeping a bit more, but so far as pain relief goes, it is great. I've been looking for something to work for over 5 years, and this med is great!. You can always ask your dr. if it would be good for you. It is a new med. If you trust your dr. you can follow what he says. If you don't trust him, Please find another. I know that is hard, but you really want someone who cares about you. Any other questions, just ask. I don't mind answering anything I can.

Hugs and welcome again.:circlelove::circlelove::circlelove:

Hello Jennelle and welcome.

Here are a few of my thoughts.
I understand completely the feeling of being lost. I sometimes still feel that way after over 20 years. Even in a large city, it is hard to find a doctor who really knows about RSD. My pain management doctor seems to know the most.

When I was first diagnosed, a doctor suggested a sympothectomy, but another doctor said "DONT"T DO IT!" and stated a number of reasons. One of the biggest arguments against was that you lose the ability to detect danger and react to it. (With no feelings, how would you know your leg was on fire?)

I have a spinal cord stimulator. One of the first tests to see if it is appropriate is to do nerve blocks. If they don't help, good chance the SCS will not, either. Then, you get a temporary one for a few days to a week or so to see how it works. Again, if there is not a good result, they will not install a permanent one. It is also very expensive.

Personally, I am rather conservative when it comes to treatment. I want to try the least invasive and treatment with the fewest side-effects first and move from there. I was on dozens of different med combinations at first, before anything else was tried.

Good luck to you. I hope you stay with this group. Not only is it a source of information and opinions, it can be a good place to vent your frustrations and find out you are not alone.

Mike :hug:

Hi Janelle,
 

Ali, Mike, and Mary told you quite a bit there in their post. I agree with all they are saying.

I would definatly do the least invasive at first. The SCS works for a lot of people but I believe you see almost or more that it doesn't. I have met 3 people in my area that had them in. Larry had his taken out, Jenny only had hers on a month and it's turned off but they won't take it out, and the third said she'd had it in for about 10 years and it helped but started causing a spread. I see a lot on the forum that don't do good with it. So definatly seek every other avenue before you do the SCS.

As far as the Sympethectmy, I didn't think they were doing them anymore. I know Diana has had one years ago but not many come on that have had them done.

Physical Therapy with the right Physical Therapist is good. Some people have used Hypeberics treatments.

As far as Drs. I saw 4 Neurologist and about 5 PM's and none of them were worth their weight in salt. My PCP deals with mine and I think that Anesteolgist are good at blocks more so then PM Drs.

I am glad you found the forum. You will get a lot of help here. I made friends on the old forum years ago that actually saved my life by talking to me on the phone all hours of the night so I know you will get the support you need here.

You can't have MRI's with SCS's in I don't think either. I have a different implant and can't have an MRI and let me tell you, my Dr. called all over the state thinking there might be an MRI machine made just for patients with these things in them and there isn't.

These are just my opinions. I know others come on and will have some good ideals for you.

Ada

I agree with everyone else. The people I know who had a sympathectomy done, some docs still do them, have had disastrous results. It resulted in the pain being 10 x's worse and spread all over. My personal opinion on the scs is never get one. I've not met more than a couple of people in 6 yrs now that were glad they got it. Everyone else dealt with various things like whole body spread, infection, multiple surgeries for leads popping out of place and other things, etc. It's not something I recommend at all.

Seeing as the blocks are beginning to stop working, it may be because your pain is starting to become sympathetically independent, instead of sympathetically maintained. Once it's independent, blocks nor scs will have any effect. There is hbot therapy and lidocaine infusions. Hbot is something insurance won't pay for unless it's for a "approved" condition. The infusions is a maybe or maybe not thing. I've met ones who've done the lidocaine and had very good results, as well as the hbot.

Don't give up, keep fighting, find a good doc and ask questions. It's the only way we learn from each other.

Hugs,

Karen

Jennelle
 

Hi Welcome,
I just wanted to say "hello" and agree with what the pervious members have said. I did have the blocks, they were temporary pain relief for me. I also had the sympathectomy, grant it that was years ago, but I had spread following. I can't say if the spread was from that, the shoulder surgery or just because. But, I really haven't heard of anyone that it may have prevented spread or lessened the pain permenately. Having said that...there may just be that one person. You never know. I, am adovcate for HBOT. That is quite frankly, because it works for me. The benefits are many. I have had CRPS for 20 years in July, and this after all other treatments failed miserably, worked the best. Good luck with finding a treatment that works for you. Keep asking questions. I hope you feel better soon. Di

Jennelle
 

hi and welcome sorry to have to meet this way but welcome !!!!
i wouldnt do the sympathectomy this really isnt done anymore. i would be careful with the SCS as this isnt for anyone. i have had rsd for 11 yrs and its full body and internal. i had a pump put in 5 yrs ago and this has helped me a great deal. like you blocks dont work very well. but SCS and pumps should be the last option in my opioin .

your question about the right doctors i have found that Pain managment doctors are the best they have the knowledge most of the time but there is a wide range of drs that can treat us. like ada said her PCP treats her


carrie

My husband is awaiting approval from w/c to recieve the scs trial. he drives for a living and will not be able to keep his cdl and drive if he has to stay on the pain meds. The blocks worked for a few hours each time. He's on dilaudid for pain right now. The pain is too bad for PT still. Our lawyer has told us to expect a fight with w/c, if they deny it, we will continue to fight it, but might proceed with our private insurance, For us its a fight against time as his arm is already showing distrophic signs and again, could be the difference of keeping the job he loves or totally turning his life upside down. If it doesn't work we will deal with that, but need to find out if the scs will be the answer.

We have been to many doctors but now he only sees his Psych and Pain managment doctor. The pm dr is wonderful and been the most helpful and informative with regards to crps/rsd.

I wish you the best.

One of my doctors said the effectiveness of sympathectomies and amputations are about the same; 10% get total remission. The rest are rarely helped much and a large number have the RSD come back "angry". Get a second opinion from someone who is well versed in this.

It's said the only pain worse than RSD pain is phantom pain from an amputated limb.

i had a SCS put in about a year after being diagnosed with RSD... the trial worked great for me, however the perminant one caused my RSD to spread and then failed to give me the pain relief afterward. Needless to say I had it removed about a year and a half after having it implanted.

If you scroll through a couple pages of topics on here there are some surveys I posted from a bunch of different people with RSD that i took for information for a paper I was writing (That as well is posted on here some where). But one of the questions on there asks about the treatments/medications they've tried. That may help you out some.

Hi New and Lost Jennelle,
Welcome to Neurotalk and a large family of compassionate, informtive, and friendly group. I have learned so much here, and hopefully have encouraged others. I know I don't feel misunderstood or alone. Most of us had no idea what RSD was or how our life was going to change. Sure, we all miss our good health, but have learned many ways to cope with disabilities and pain. I agree with all the above comments regarding SCS and Sympath.
I have been helped by physical therapy and massage therapy. I had frozen shoulder following surgery (really rsd, but wasn't dianosed for 4 years) Started therapy right away to get use of my left arm. took 100 massage therapies followed by 100 p.t. I paid for the mass. therapy, felt it would loosen up and help speed up recovery of range of motion. I never regret that. I have full use of arm. Then a few months of relief followed by sudden frozen shoulder in right arm. (They told me that might happen) More therapy.
Full use of right arm. Then left hand frozen from injury while water skiing. Wrong diagnosis. Changed Drs. and diagnosed with RSD in different state. Started therapy in hand and got partial use. It's permanently partially paralyzed. Have full body now. Both feet started to turn upwards, toes. Dr. had me start water therapy and in a few months, my toes were touching he ground again. My Dr. is a neurologist, psychiatrist, and pharmacologist, so he basically manages my pain and rsd.I've been seeing him for 5 years and it was this smart Dr. that told me my rsd started 13 years ago following my benign breast surgery. The next day my arm swelled and shoulder froze up. Not even the Rehab Dr. and physical therapists recognized the rsd. We desparetly need rsd education in this country. Every state needs new laws passed. I attended the national rsd annual meeting here in Scottsdale last week. There are 50,000 new cases of RSD being diagnosed every year now!! We can't afford for people to have 4 years pass before being properly diagnosed. More and more children and teenagers are getting it. If you go for water therapy, the water needs to be at least 86 degrees. Cold water is not good for us or ice.
I'll pm you an evening when I'm feeling a little better and share more information that has helped a lot of us. At the top of the page is a 4 page list of suggestions that Mom in Pain has started with a lot of good suggestions from different ones that has helped us deal. You can also read the introductions to learn more about each one of us. It takes time, but the more you can read, the more you can learn what helps us and avoid things that make our condition worse. I'll post some information about the annual conference soon.
Please take care, loretta

Jennelle,
hello I'm also one here who has had a sympothectomy done to me also and I live in pain still even worse on some days! I also asked for help with anyone who had a sympothectomy done years ago and no one had any answers for me. I can say please do not do it! I did it cause at the time I felt I had no choice and the pain so great as I was left for months and months without treatment as I was in work comp hell ! as some here understand how we get mistreated in that system I think worse at times... I regret what I did as it did not help me and now I have lost allot more as I do not sweat on that side anymore also and the sun burs me more also as well as losing motivation and some thing I cannot describe :(
DO not do a sympothectomy learn fro me too!:mad:

Dear Loretta

I have been keeping an eye on the RSDSA website for any information that may have come out of the Scottsdate conference - especially new treatments recommendations. Hopefully it will be published soon.

Sandy

Hello Jennelle,

Welcome, you will find a lot of knowlegable people here who are helpful and care.
It takes a great deal of time to find and assemble a medical team that you trust. Most doctors have heard of RSD and know enough to know it's complex and the same treatment plan doesn't work for any two people. We all have different nervous systems and RSD acts different for each one of us. Doctors are intimidated by it, after all they are in the business of helping people and this condition makes it hard to help you. I have a PM doc, chiropractor, pain management doc, physcologist, allergist (without medication my body itches out of control wherever pressure is applied) cardiologist (RSD effects my heart rate a very very small % of open heart patient get RSD)
I went through 17 doctors over an 8 year period.
So your medical team will have many doctors on it who should understand RSD.
I read somewhere early in my DX (I have only had RSD for 8 years)
Just as patients get frustrated with doctors because they can't help, doctors get frustrated with a patients health and their inability to treat them. My GP doc. gave me the never quit never give up speech. Several months later I was having trouble with my meds working together. He walked in the room the first thing he said is "I'm through we aren't doing this anymore". I left the office in tears because, up to that point, I really liked his approach with my health. After I cooled off I went home and wrote him a letter. Telling him he couldn't give up on me and he couldn't quit. I reminded him of his pep talk with me the first time he saw me. He called me after he read the letter. We laid out our expectations and agreed he was having a bad day that day. He has been treating me for the last 6 years .I have also had disappointing appointments with my pain management doctor. Keep the communication lines open. That's what it takes in any relationship and that's what is really needed when you are living with and trying to get help managing a complex health conditon like we all have.
I had a SCS for 2 1/2 years. It stimulated my arms, legs and low back (I have full body RSD). The programmers from the the manufacture couldn't get it programmed. Ask for it to be explained to you how they program it and how many hundreds of combinations there are. The last year and 1/2 it was in I didn't even have it turned on. I was having awful low back pain and all my doctors agreed it should come out. My low back pain has improved since it was removed.
Sorry to ramble so, I hope you get some information from us that you can talk with your doctors about.
Take care,:grouphug
Sherrie