Need advice on nerve block decision.
 

Keeping this short as poss typing one handed, and sorry for spelling etc for the same.
I feel like my arm is is hell !!
I am in desperate need of advice because I am too depressed and on what feels my last leg.
Had nerve block before total shoulder replacement on feb 12, which I firmly believe was the root of my prob due to one particularly terrible sensations I was feeling at the time of the procedure.
3 days later I go home and start to feel this fire in the whole inside of my forearm that is still hurting just as bad today, mar 15.
Been complaining to my surg and my pain management dr, but not rly seen for an proper evaluation to date. They proceed to tell me I need to come down next friday for some kind of nerve block, and keep taking hydrocodone, which I have done under dr supervision for many years, but I have an appt with an actual neurologist a cpl weeks later on the 9th.
I am so damn scared now suddenly, of more nerve blocks. I am litterally having suicidal thoughts on a daily basis, and I can,t rem things like usual after surgeries for me, but not this long.
So, if anyone has an opinion about whether you would wait to be seen by a neurologist, or go try a nerve block that I have read don,t usually work, I would greatly appreciate it.
I,m on here for a while, because I can nvr sleep good now, so any advice asap is welcome and needed.
Thx a lot

Hi CaseyB
 

I had a good result from several Stellate Ganglion Blocks which I received to treat my CRPS in my left hand and forearm. It is important to have the blocks as soon as you can because if the problem is CRPS, the sooner you block the nerve signals and get your arm moving the better. Also from a diagnostic standpoint, knowing the outcome of the block is helpful for the neurologist. I know what it feels like to have constant excruciating pain, which is what I felt before the blocks. Proud of you for reaching out to this community of wonderful people who are here for you. You are not alone.

Hi Casey and welcome,
In my experience with nerve blocks they were used as a dx tool. They let my neurologist know which nerves were involved and then she tried different meds until there was relief.
(I,like you, is typing one handed!)
CRPS is a crappy monster to deal with for sure. I so wish for you to find releif.
We finally found a good med cocktail that works. In my case it's Gabapentin, Cymbalta and Amitryptaline. Cocktails very for each person so don't be affraid to experiment.
Even blocks work differently on different cases.
That's my humble opinion.
Good luck...

I would see a neurologist before getting anymore nerveblocks. You can always go back to the pain management dr for more nerveblocks if the neurologist okays it. I had nerveblocks from a pm dr before seeing a neurologist and wish I saw the neurologist first. She prescribed a more effective and less invasive way to help get me to get some movement in my hand and fingers with prednisone and lessen swelling of rsd a little. It helped alot more then the eight nerve blocks I had prior. They didn't do much at all for me except cost me more money and discomfort. Everyone's different, but this is what happened to me. I hope you find someone who can help you feel better soon.

Could it still be crps/rsd when missing some symptoms?
 

Had shoulder replacement right after a standard nerve block they did in the side of my neck, i think it resulted in injury to one of the brachial plexus.
Have not seen a neurologist yet, told surg and my pain dr about the strange experience during the shoulder/neck numbing block, yet they are insisting I have crps and want me to do some other nerve block this friday, and I have an appt with a neurologist on the 9th.

I don't know whether to do the nerve block, or wait to see the neurologist first, because I don,t have some of the symptoms of crps.
My skin feels normal temp, no visible swelling (tho it feels like it), and no discoloration that I can see.
My only symptoms are the intense burning from the bottom of my rt bicep all the way to my wrist, mostly just on the inside, which I think is the anti brachial nerve, and the right side of my neck is really sore.
The birning in my foerearm is 10x worse than my worst day with my bad shoulder even after surgery.
So, missing these symptoms....does that possibly erase the diagnosis?
Could this be type 2?
Could it simply be a very irritated nerve from the replacement block?

And if so, could a ganglion nerve block be suggested too soon?
And finally, what would you do in my shoes?
Have the nerve block first, or endure the pain and depression issues for a few weeks and let a neurologist advise you?

I'm sorry I posted almost the same but added a lot of questions because I'm kinda freaking out in my head from reading about all this new info,
and i'm having trouble thinking right and being able to correctly search the forums.
I just can't figure out in my mind what to do, and I have no family left or anyone else that I can talk to about this that has the slightest clue of how bad I feel.
Since '99 I have had 6 broken femur surg's, 2 disc repairs, 1 cervical fusion, left knee scope, rt shldr scope, rt elbow repair, and rt shoulder replacement a few weeks ago.

Hi CaseyB,
I merged your 2 threads together so replies and information is in a single place for you.
:)

You don't necessarily have to have all symptoms to have RSD. They also tend to vary between person to person. Some symptoms come and go as well.

Stellate ganglion blocks are a great diagnostic tool (as others stated). If the dr does a SGB and you have a favorable response to it, it can confirm your diagnosis of RSD/CRPS. Also, your best chances of them being successful is to get them early on. I was diagnosed with RSD 23 years ago in the right side of my face. I was treated very agressively with SGB's and medications and this put my into remission for many years. After I came out of remission and had new injuries, it spread. The first thing I wanted was SGB's! They were not as helpful that go around because it was too late for me. I highly recommend them because they helped me so much in the past! If you decide to go for it, you need to do it asap for best results. Just make sure you have someone very knowledgeable administering them.

You do not need to have all of the symptons to have RSD/CRPS.

Personally, neurologists did absolutely nothing for me.

Wishing you the best,
Nanc
:hug:

Casey I've never been seen by a neurologist either.
I have a great P.M. Dr. however & I've had over 20 Stellate Ganglion blocks
now. They're not the same as the total numbing blocks prior to surgery.
I had the best improvement with the first 3 then going immediately to P.T.
I didn't get remission but the signs of improvement also dx'd the RSD but
I had ALL the symptoms
If you can find a Dr. who uses ultrasound guidance instead of or in addition
to flouroscopy (X-ray). If you go to youtube theres videos to compare the
difference.
BTW I'm also in the 1 handed typing club :hug:

My opinion...if you aren't sure you want a nerve block...then don't get one until you are sure. Don't feel pressured into treatments you don't want. Blocks CAN be a tremendous help to some people but there are risks with them (as there are with ANY procedure). If you would feel more comfortable seeing the neurologist first then that is absolutely what you should do in my opinion.

Casey, Catra is right it's a very personal decision, I
remember not wanting to feel pressured into having them either.
I should have said that but got off track.

I would get immediate nerve block intervention. My RSD spread rapidly within a couple weeks and within 4 months it was total body. I had a nerve block on my mid thoracic that helped tremendously. I had to get 2 in the same place as the first one only worked only for a few weeks. It's been 5 months now and still benefiting from it. Unfortunately my stellates had poor responses. 3 years too late from when it spread to my face and arms. If done while still sympathetically driven it can actually interrupt the pain signals and quite the nerves down and sometimes cause remission. Is the block a sympathetic block? If so try it. You don't want this stuff spreading and it does through the sympathetic nerve chains and then it becomes centralized and you're screwed. My opinion and experience. I am not a doctor.

Thx a bunch for the response. Do you know what they do if the block does not help?
.

Ty
 

I didn't think I put enough facts in the op

Thx for all the answers.
 

I had some kind of nerve block or something before they decided to do a neck fusion, and this same thing happened to the back of my scalp and went away after about 5 months.
Can't rem if it was as bad as this forearm, but I do rem I couldn't even lay on a pillow without the pain.
That's what scares me. But this is also a diff dr now that has done an injection in my spine a few yrs ago for a 2 week long spasm in my shoulder blade area that didn't help. Just had to wait for it to stop.
Used to get those a lot before my neck fusion.

Quote: Casey
I am so damn scared now suddenly, of more nerve blocks. I am litterally having suicidal thoughts on a daily basis, and I can,t rem things like usual after surgeries for me, but not this long.

Casey,
RSD can be cause from venipuncture or an injury to a nerve or anything for that matter. What strikes me about what you wrote is the above line.

When I firs started having RSD issues post op I had this weird loop of thoughts that were extreme and like post traumatic Stress Disorder from some poor medical responses and experiences. I began to have more and more problems with the medical profession in my quest for help. My surgical unit tried to marginalize my issues as mental health and did some containment tactics. I had problems with insurance company too because nothing is "standard treatment" for RSD and they wouldn't approve diagnostics. I am concerned you too may be experiencing some of those same early symptoms of PTS.
When you first develop this is starts by reliving medical events, stressing out when ever you have to do another medical event or see a doctor. Trying to control events so it won't happen again & so on.
Their is a neurological component to having a traumatic event happen and this neurological loop thing of going over and over the same experience or same thoughts. Sometimes it clears up in a few months, sometimes it doesn't and you develop PTSD. It is real important you don't let this experience that harmed you, hinder you from getting treatment. Ask your doctor for some anxiety medication to help you short term with this. If it continues get help. I still suffer since getting RSD, have melt downs every time I have a Dr appointment or a problem medically or with insurance. You can become very traumatized by the process of getting help for rsd and treatment covered. It's not an easy road because no one knows what they're doing for the most part or heard of it.
Take care of your MH issues early. Feeling suicidal isn't a normal post op experience. That flew a flag up and reminded me of my early post op feelings and experiences. I didn't feel like that before and I knew it had something to do with my sickness.
When I had an infrared thermography done my forehead showed severe hyperthermia on it. That demonstrates something was going on in my brain during the early development of RSD. I also had weird woozy sensations and emotions all over the map. That is also a sign of RSD limbic involvement. Don't ignore those symptoms. I hope this helps. RSD can cause your judgment to become impaired too.
Don't let anyone try to run you into mental health AS TREATMENT for RSD. RSD is not a mental disorder, it is a neurological disorder that has limbic involvement. (emotions)

If they are doing the block to try to help you and as a diagnostic tool and it doesn't help, then they would normally run other tests to rule out anything other conditions. If they are sure that you have RSD/CRPS, then they will just keep trying other treatments, usually a combination of different meds. It can take some time to get the right combination/dosages. Surgical options, like a spinal cord stimulator or pain pump, should be a last resort and after all other options have been exhausted.

The SGB's were so helpful to me the first time around, but I got them asap. The second go around wasn't as helpful because it took over a year to get a correct diagnosis in my hand, by the time I was correctly diagnosed it had mirrored over to my other hand. I got venipuncture RSD in my left arm when I tried to donate blood and the phlebotomist missed my vein and punctured a nerve. I never had problems from any of the blocks I received (only developed a problem with the steroids). Some have had problems from SGB's and other blocks. It is a lot to think about and you have to be comfortable with your decision and your dr.

I would highly recommend that you talk to a therapist or psychiatrist to help you deal with this. NOT saying that this is in your head or anything like that, they will help you deal with this mix of emotions you are having. It is VERY helpful!

All the best,
Nanc
:hug:

Hi I have shoulder replacement surgery both shoulders I have RSD since 1980 an they did the same thing to me when they did the surgery after about 2-3 I had to go and get SGB done to claim the arm down that that the surgery done. If you want to talk let me know I have been dealing with this for a long time. Good luck

I'm pretty sure I've had ptsd a long time
 

I had a major mc accident in "99 and broke my femur. Hardware kept breaking about every 15 months on average, so had it repaired 7 times in total.
Plus the 3 spine surgeries, elbow, knee, shoulder, the bone graft donor sites were really bad.
For about the last 7 yrs or so, I have gotten good at putting on a happy face, mostly because I feel like such a burden to ppl around me. I am/was a tattoo artist for 2 decades, so I had to see and talk to people all day long, and I owned my shop which meant I was usually back to work in a matter of just a cpl weeks after surgeries, even if my leg was still swollen like crazy. The last time I had the femur fixed, my ex and I had to fly to houston for it. Then even after making hotel reservations for over a week to make sure I didn't have complications, the very last night before our flight home it started hemmoraging. I took an ambulance to the ER and had them just wrap it up so it wouldn't bleed everywhere because we had to make that flight. Then, as my luck goes, we had over 6 hours of delays in airports due to weather probs.
I'm getting off the point....
The post about breaking down at Dr appts hit me like a brick!
Every time I go to my pain dr I cannot help but sobbing uncontrollably. The only way I can keep tears inside is if I don't talk about what is going on. Even when my gf asks me, I try my best to keep it in, but it's really tough. I had always worked and done for myself since I was 16 in 1986, and to have all these things going wrong with me, I find myself depressed and thinking of suicide almost daily.
I only think though. I have plenty of ways and means at my disposal, but I think about my gf. She lost her husband 2 yrs ago after a long fight for life while having probs with diabetic issues. He passed away slowly and painfully, and the thought of putting her through my passing makes me just as sad as my health does. This new nerve pain is like nothing before, so the stress of the whole thing is rough and my mind is overloaded.
I worry a lot though. In just the first 10 yrs of my 15 yr adventure in pain, I went from the guy with a perfect job, nice home, a family to raise, etc. to daily pain, sleeplessness, unable to to pretty much anything, the death of most of my family, and the suicide of my lifelong best friend, and now I have to live in an RV. And my worst fear is when I think about what my life will be like in another 10-15 yrs. particularly if these random things keep happening, and if this thing gets worse.
My pain dr has had me on hydrocodone for the last 5 yrs, (I had a 2 1/2 yr period when I was almost pain free after my neck fusion) and I can't seem to get him to understand that I worry about taking acetominafin for so long, and that they just don't work anymore, and I don't want to add organs failing to my list. Rt after my shoulder replacement, he prescribed me nucynta, but I had a bad reaction to it and could barely get words out of my mouth, so he told me to just go back on the hydrocodone!
I can't stand the thought of having to rely on someone else for litterally everything! Much less having my pains only getting worse. My hopes of being able to do what I love most again are almost gone. Idk if my forearm will ever let me be an artist again.
And thinking about putting her through all of it with me makes me feel terrible as well. She has enough of her own issues without me adding more. I struggle with it every day, but I also am very conflicted about telling my dr's about it, because not long after my accident in '99, I felt very suicidal after what I think was a bad reaction to Paxil and after telling a dr about it, I was escorted by police while in my wheelchair to a phsych ward. Fortunately, I was able to talk my way out of it with the dr that was there.
So these thoughts are def not something new for me, and I am sure almost any dr would agree I have ptsd because since then I've had more stress than I thought was possible.
And when it comes time for a surgery, it's like a living nightmare just thinking about it. Sometimes after a surgery, I think the sedation reacts to me in a weird way. I lose all control over my emotions amd memory for 2-3 weeks. It's like I'm actually dreaming and sometimes I can,t remember my own name. Then after a few weeks, I wake up one morning, and it's like it never happened and I can't rem hardly anything of the previous weeks except small peices.
As I said before, I can't keep myself together when I talk to ppl in person about this, so I want to say thanks for all the positive words and being able to vent a little of what I feel. It has really helped me over the last cpl days, and especially tonight.
I wish I could just talk to my dr's in a calm manner instead of like a blubbering kid. But it just doesn,t happen for me.
This took me 45 min to type, so I have to stop, (i'm sure I've said enough anyway for now)
Thanks again for the responses. Today was a pretty good day just getting my mind off the pain for a little while

I'm so sorry you are suffering so much both mentally, physically and economically. I too have had things go wrong on top of having RSD. ( if RSD wasn't bad enough. ) RSD has affected my already fragile marriage, cost me a good paying job and my home. I had to move out of a home my husband and I worked for for 25 years to get, because we simply can't afford to live there anymore. We can't even afford to pay all of our bills let alone our mortgage and medical bills. I'm disabled and get SSDI and am very grateful for that, but it's about half of what I was making at my former job so our bills sit in a pile and we pay as we can one at a time. I am going for a third surgery in the past two years next week and right now my skin is on fire so bad I just want to SCREAM that I can't take it anymore. I'm so done and feel completely defeated in every aspect of my life. There are times when I want to give up, but just like you have your girlfriend, I have my son and I can't give up because he needs me. He may be grown up, but he still needs me and I need him. I don't want him to think that giving up is the answer to our problems when things get tough. I pray alot and try to just concentrate on today. It's extremely difficult especially right now because I am having a rsd flare, but I have to keep trying to get better and in the meantime, I am trying to help others feel better. I've recently tried to do something nice for someone every day. It gives me a purpose and a reason for continuing to endure this awful nonstop pain. I don't do anything huge but at least it is something to help someone in need. Like giving clothes to the poor, donating a dollar to help sick people like those with MS. (The grocery stores have these things) or helping to find a lost pet. It's not much but it gives me a reason to get up in the morning and makes me realize that other people have problems too. It also gets my mind off my troubles and pain for a short while. Maybe that may help you feel a little better. I know it's not much to offer, but I hope that by letting you know that I understand your pain (literally), it will help you to feel less alone. Someone once told me that once you hit rock bottom you have no place to go but up. So up I go. I hope you go up to. Don't give up. Your life matters.

Had the ganglion block friday
 

Thought it was going to start working this morning. Barely started to feel a bit like it was easing up, but I think it was just a little help from having the lidocaine patches on it all night. Because it's 5:15 and has resumed 100% and with a vengeance!
Going to keep trying to lay as still as possible for the rest of the day.
If only I could get back to drawing to keep my mind off it and off the tv.