[03 SB FX4]

Hi Everyone,

I am not sure where to begin here or what exactly I need to put to see if someone can help me or help me find help.

At the end of 2011 after a near 4 year battle trying to find out what was wrong with me, I was diagnosed with Spinal Accessory Nerve Palsy and possibly Serratus Anterior Palsy. There could also be others but no one seems to be really sure.

Let me give you a little background , I was happy and healthy normal functioning person. In June of 2008, I was helping my parents move and I was lifting and hurt my right arm (shoulder). I didn’t think too much of it as I had done it before and I took it as (oh, well it will be ok). I iced my arm and rested for a few days and then went back to work.

Then in October, 2008, I started having increased pain. By the end of the month, I noticed that every time I lifted my right arm above my shoulder, I would terrible pain in it and I had developed a VERY nasty popping in my joint. I had by then figured out I had something I probably needed to get checked out. So at the first opportunity I had I, I called a local doctor and the soonest I could get in was 3.5 weeks. In the meantime the popping rapidly became more and more painful and more and more frequent. I also started to have the shoulder joint separate to the point where my arm looked like it wasn’t in socket all the way and I also noticed my back started to hurt me VERY bad.

My Mom noticed that I my shoulder blade was sticking almost straight out like a chicken wing. So I had to take off of work and wait my time to go to the physician. The physician took one look after looking at the x-rays and MRI results and said that I needed to go to STL right away and he sent me to a neurologist.

The neurologist was kind of stunned and went through literally every medical book he had and first said that I had loopis (sp). But it just didn’t sound right. But I went ahead with an EMG he set me up with. I only made it through about a ¼ of the MRI because I kept passing out and the pain was so bad I was screaming and started to vomit. So they stopped. They also noticed that my right hand was totally purple and I am not joking it was totally purple ( I had mentioned it but they hadn’t paid attention to it until it was REALLY purple). I also developed spots on both of my palms which I still have.

So, they started me on Gabpenten – (Nerotin), thinking it would help with the pain – along with vicodin and a few others.

Then what happened next I couldn’t have dreamed if I tried. I got sent to another doctor and subsequent 9 doctors later, I had no diagnoses and had been tortured in ways that I never thought were possible – I know doctors have to examine to get all the facts but I passed out or puked in so many doctor’s offices it isn’t even funny. No one could figure it out. All they wanted to do was more MRIs and more EMGs which were horrible.

Finally they sent me to a doctor that I swear got a kick out of hurting me. She would bring students in an literally for an hour pop my arm out of socket and jam it back in and push around. I would come out of her office sweating and near passed out. By the time I got to her – its now May of 2009. After a month of playing around she decided she needed to go in and do a full corocoid plasty – she went in and shaved nearly all of the corocoid bone off and then cleaned up the joint.

For a little while I couldn’t tell if it was surgery pain or if I was still messed up and after awhile I started noticing I had the same symptoms – they hadn’t gone a way it was just the pain meds masking it a bit.

After that I told my Mom no more, I would just live with it. For 2 years I kept getting worse, I tried contacting other doctors (phone and e-mail) but with no real diagnoses NOBODY wanted any part of it.

The only thing I found out by going to the 9 doctors was that I had 2-3 near herniated disk in my neck – consult with a neuro-surgeon yielded nothing – he said they weren’t severe enough to touch and the fact that whatever the problem in my shoulder was, wasn’t helping my neck anyway.

So fast forward to 2011, I am now in so much pain I set and cry and pray that I just die. None of the pain meds do anything but give me a bit of a buzz (which I totally can’t stand), so I don’t take them unless I am going to pass out.

I did some internet checking and a friend of mine told me about a doctor in STL that might be able to figure it out. I called and in two weeks, I got in to see him and he came in and took one look at me and did what exam he could actually do and diagnosed me with Spinal Accessory Nerve Palsy and maybe secondary Serratus Palsy.

All of my functions are 0/5 and he said that I have very little if any muscle left around my scapula. I also have so much atrophy now that my right arm is 5” lower than my left. I have at times no feeling in part of my chest, I am having problems breathing in my right lung. I feel at times like I have an elephant setting on me. My father or whoever is home has to help me put my arm back in socket.

The doctor that diagnosed me said that there are only a handful of surgeons in the US that deal with this and the one that he learned under that taught him about this form of palsy wouldn’t even touch me because it is too severe and with the problems breathing and stuff there would be too much risk to do anything. Plus the surgeon that did surgery did the worst possible thing by cutting the only support my shoulder has.

He did suggest pain management and I contact one that even other doctors say is the best in the area and he refused to treat me because he said that my case is so severe and with my neck involvement and my brain stem being involved that it was simply too much risk of killing me during the procedure.
So as of today, the pain is SO BAD that I can’t stand to do basic task. I have been told that because of the severe damage to the Long Thoracic Nerve and all the other damage – it could kill me – don’t know how much truth there is to that. I do experience chest pains and problems breathing so…

There are times where my hand is solid purple and I am having the spots on both hands. I am also within the last 6 months having the beginning popping and same trouble with my left arm.

The pain is wearing me out so fast. I can’t even hardly get out of a chair at times. My back is absolutely KILLING ME!!! I am having trouble walking at times – I stumble, not often but it does concern me. I don’t drive hardly anymore because I can’t hardly turn my neck in either direction because of the severe blinding pains. I get headaches that are the worst – they are in the back and base of my head. I have shacking spasms and I am having what I call lockups, I get stuck almost totally - froze - I am unable to move because of the pain.

As of about a month or so ago, I am starting to have problems urinating – It takes FOREVER sometimes.

I am in SO MUCH PAIN ITS INCREDIBLE!!!! I have had a lot of things – I have walked around with broken feet and a cracked hip – NOTHING IS COMPARABLE TO THE PAIN OF THIS!!!

PLEASE, I am begging can anyone help me or point me in a direction to get some help. Any ideas or help figuring out what this is – no one else will help me. I contacted a doctor in NY desperate, I did get a response and he didn’t seem to think he could help me either.

The general consensus is for me to get a pain pump but I don’t want to live on drugs – I JUST WANT SOMEONE TO HELP ME – I can barely use right arm and my left is following along.

All they know is pain meds and in spite of the meds the pain is getting to me!!!

Thanks in advance if you can help me!!!

If you have further questions I will answer them!!!

[MelodyL]

Hi. My name is Melody. I have been reading your story and I am heartbroken for you. You live with pain on a daily basis and no one will alleviate your pain? What about morphine? At least temporarily so you can at least have a tolerable life. I know you don't want to be on drugs but right now, you have to address your pain.

I know that others will read your post and advise you better than I ever could. You need to have some relief. You mentioned a pain pump. I have read that many people get relief with this device. Please continue on your journey in finding a pain management specialist that will work WITH you.

We have many people on this forum who will read what you wrote and they will advise you.

Please know that tonight you will be in my prayers. I really mean this.

I am so sorry that you are suffering this way.

Melody

[Jomar]

I don't know if any of these alternative therapies might help or not, but I know most MDs don't ever suggest them...

Acupuncture
highly skilled & expert & gentle chiropractor (avodiing the sensitive areas)
EFT ( emotional freedom technique)
Hypnosis
expert and skilled bodyworker - like hellerwork or such
TENS or IF stim
low level laser

sounds a bit like a winging scapula is involved - we have posts about that- you can use the search link in my siggy

the purple hands - have drs checked for vascular compressions?
Is there swelling also?


You might find some other helps on our thoracic outlet syndrome (TOS) forum, some of your symtptoms are very similar to TOS.

[bernadettemarie]

I am so sorry for your pain. I don't know where you live, but you may want to try the Hospital for Special Surgery in NY. They are like the #1 Hospital for Orthopedic Surgery. My husband had surgery there, and many people on Long Island where I live have gone there after having botched surgery. Please keep us posted and DO NOT GIVE UP....

[03 SB FX4]

Originally Posted by MelodyL

Hi. My name is Melody. I have been reading your story and I am heartbroken for you. You live with pain on a daily basis and no one will alleviate your pain? What about morphine? At least temporarily so you can at least have a tolerable life. I know you don't want to be on drugs but right now, you have to address your pain.

I know that others will read your post and advise you better than I ever could. You need to have some relief. You mentioned a pain pump. I have read that many people get relief with this device. Please continue on your journey in finding a pain management specialist that will work WITH you.

We have many people on this forum who will read what you wrote and they will advise you.

Please know that tonight you will be in my prayers. I really mean this.

I am so sorry that you are suffering this way.

Melody

Melody, thank you very much!!

A one point it was mentioned putting in a port (in my neck) to knock the pain down but they were worried that with me having trouble breathing already, they didn't want to lower it any more!

[SleepyD]

I was reading your background...like everyone else I am soo sorry you are going through this...I would like to make these suggestions, but I am no dr...so take it as one with health problems making suggestions only...
1) find a good orthopedic I like dr. Sloan in Jefferson City Mo--he does not do surgeries but works with athletes... I'm thinking you seriously need a splint of some type for your shoulder. The purple hand arm sounds like compartment syndrome as a result of the issues with your shoulder (or maybe Raynauds)...a lot of the Naseau is probably from the pain, but you could be having low blood pressure associated with the pain (an autonomic dysregulation) the same Dysautonomia could be causing I was diagnosed with relapsing Polychondritis and it can cause problems with breathing, problems with vascular systems and problems with joints I'm on Gabapentin and dapsone and they prescribed prednisone (but I can't take it) for the pain have you tried the fentanyl patches? They helped me with pain without feeling wonky (but I started having rashes so couldn't stay on them) maybe they would work for you...I know you don't like the idea of pain meds, but it sounds like your quality of life is such that you could benefit from just giving into taking them while searching for better solutions...best wishes and your in my prayers

[03 SB FX4]

Thanks guys - I appreciate all the responses and I am run down as many suggestions as I can!

[ginnie]

I agree with melody. Do not be afraid of the stonger medications. Your quality of life has been effected. NT will be here for you no matter what. I read the post and was ever so sad this happened to you. I will keep you in my thoughts and prayers. ginnie