HealthBoards (
-   Arachnoiditis (
-   -   Neck and Upper/Mid Back Pain with Other Weird Symptoms (

Tri21MomX2 02-25-2009 06:40 PM

Neck and Upper/Mid Back Pain with Other Weird Symptoms
Hello, Everyone.
I'm so glad I found this site as I am about at the end of my rope. I have been reading previous posts and it seems I am not alone. The frustration I feel with all of my doctors right now is unbelievable. They all seem to know exactly what the problem is and refuse to consider anything else. I so wish I could find a doctor who would just think outside of the box. Why are they all so rigid?

I had MRIs done of my entire spine (in sections) in November/December 2008 which revealed that I have four bulging cervical discs, stenosis, and instability at C4/5. It all started last spring with what my GP termed a muscle spasm. I had been having increasingly painful episodes between my shoulder blades and perhaps a bit lower, kind of right where my bra strap sits. He took x-rays and showed me that it was just spasms, but that it could take anywhere from 3 weeks to a year to get better. Lovely! Well, it didn't get better at all. It got worse. By the end of the summer I went back and told him I couldn't just take Valium and Skelaxin hoping this would get better. It wasn't. On top of it, I have two little boys with special needs who rely on me for their daily care. I have to be at the top of my game all the time. So he sent me to my neurosurgeon (I had a "gnarly" L5/S1 extrusion which led to a complete left foot drop and another herniation at L4/5 in 2004) who then ordered lumbar and thoracic MRIs. They showed nothing impressive. Then I went in for the cervical MRI. That one WAS impressive. He said I wasn't a candidate for surgery and wanted to treat me conservatively. Okay, fine. Well, I have been in PT for about two weeks now, have had two ESIs, trigger-point injections, and am taking Percocet and have a Fentanyl patch for the pain, which can "in no way be caused just by the bulging discs alone" according to my neurosurgeon and my pain doc. Lately I have begun to develop weird sensations along my spine starting right about where the "muscle spasms" are (I'm still having those alright and they've gotten more frequent) and running down to the lumbar surgery site. It's hard to describe the sensations. They are extremely uncomfortable, but I don't know if I would say they are painful exactly. It almost feels like "something" is running up and down my spinal cord, under the skin, with heavy feet because there is quite a sensation of pressure. I suppose it could be muscle spasms because sometimes it feels like squeezing. I know I have them in my neck and shoulders. My neuro said that once you have spasms in one part of the spine you can get them anywhere else along your spine because it's all connected. Oh yeah, I forgot to mention that I also supposedly have fibromyalgia. I guess I could have this as well since I have all the classic symptoms. The thing is, I have recently lost 60 pounds and I should be feeling better. Instead I'm feeling MUCH worse. I was diagnosed with Adult ADD and placed on Adderall. I have absolutely no appetite at all, thus explaining the weight loss (hopefully). I just have so many different types of pain: sometimes the back of my neck from the base of my skull down to my C7 hurts so bad just putting it on the pillow hurts terribly; I get burning sensations in my back, shoulders, and neck; I get a choking sensation, or really more like I am being strangled and with a lump in my throat; I also sometimes have trouble swallowing. My pain doc seems to think the last three are all related to Generalized Anxiety Disorder. He's given me Cymbalta and I'm supposed to start it once I've gotten the Lyrica at the right level to take care of the fibromyalgia and also the residual nerve pain in my foot from the lumbar/sacral disc extrusion. My history with bulging discs isn't exactly one that gives me a lot of peace knowing I have four little time bombs ticking in my cervical spine of all places. Can't ONE physician understand this and offer me a little bit of hope besides "the cervical spine isn't like the lumbar spine. We never see those types of injuries in cervical herniations". Okay, thanks Doc. I feel SO much better. Can you show me where in the owner's manual it says this? And can you PROMISE me that one of these bulges isn't going to completely extrude??? Sorry, I got a little carried away. I'm just very frustrated. And very, very frightened. I'm so afraid that there have been changes since my last MRIs because a lot of these symptoms I didn't have then. Of course, I also was unaware then that I had the issues that I do. Stress can do amazing things to the body. I just want to make sure it IS stress and not something else......can anyone relate?

So I am basically a mess. I can't find symptoms like what I am experiencing anywhere, but I did find a condition called "arachnoiditis" that comes kind of close. Anyone familiar with this disease? Me neither. So any help would be most appreciated. Just the stress alone of trying to deal with all of my issues is enough to make a person have a nervous breakdown. And I can't make my family understand what I am going through. My pain doctor likely thinks I'm a head case. My surgeon isn't really in any hurry to cut me, which is probably a good thing. He sent me for a second opinion on surgery that he is willing to do for the instability (which is what most concerns him), but that surgeon said he didn't think I even needed surgery.

But in the meantime, how am I supposed to care for my 6 and 1 year old sons with Down syndrome and be a smiley, chirpy, sexy wife while keeping the house spic and span and having dinner on the table when "my dream man" gets home from work?

I'm interested in similar stories, opinions, comical anecdotes to make me laugh, commiseration, pretty much anything. It's why I joined this board. Thanks and God Bless!

feelbad 02-26-2009 08:29 AM

Re: Neck and Upper/Mid Back Pain with Other Weird Symptoms
while you mentioned that the c spine WAS impressive for problems,you never really mentioned just what was found there? do you actually have your c spine rad report in your possesion right now? could you type out just what was actually found in that area from the summary at the very end of the report,word for word? it just really does matter how the radiologist actually words a particular type of finding. honestly,depending upon the overall knowledge and the experience any given 'specialist" actually has is what really dictates how severe/pertinent any given finding actually is 'to them' not always the true picture,just what their overall impresssion is, you know what i mean? in otherwords,not all specialists,NSs are created equal,trust me on that one. another NS may actually see your findings in a completely different way. this is why obtaining second opinions of any condition really does help in most cases, just to know what another NS would feel about your particular problems.

if you could actually type out that summary for me,it would really help tons in giving you the best possible advice. from what you have described as symptoms, it really does sound like you may have at least some level of possible spinal cord affectation to some degree. so knowing just what really was found in your c spine would help alot. marcia

trychocolate 02-26-2009 02:02 PM

Re: Neck and Upper/Mid Back Pain with Other Weird Symptoms
Be sure you post that info. as feelbad can really be a big help, as others.
Keep your sense of humor, you'll need it.
I know what it's like when they say stenosis and then act like there's a skunk in the room. No one wants to rush into unnecessary surgery, but it doesn't help when you are told uh way...when you want the problems gone. I was told the odds for a positive outcome were not favorable with stenosis as they 'need more space to work in.' I researched the fibromialgia come-back as well, because many get told they have this. There is such a thing as Stenosis created fibromialgia so the symptoms are similar but different, if you know what I mean. Birth stenosis can go unnoticed until there are problems back there and then everthing is magnified pain, disability, and discomfort-wise cause maybe you 'need more room back in there ' or something. I think this is why it might be difficult for doctors to understand what you are feeling from what they are seeing.
That running sensation feeling you have up and down your spine is annoying, I know, and sometimes it feels like it stalls in spots, right? I don't know what this is either but I often wonder if a running sensation has anything to do with the spinal fluid flow and possible interruptions in it. But it does feel like nerves, doesn't it? Maybe feelbad can help you.
You are probably lifting alot more than you should with your young ones. This irritates c spine and lumbar problems, only you can strengthen lumbar a bit, bulking up your neck doesn't really work, does it? Watch how you are positioning your neck and back when weight bearing. When I tried the isometric exercises from Neuro, it really got the pins and needles going so am really enjoying conservative therapy as well and highly recommend it for boredom.
You might have an Anxiety disorder (wouldn't anybody by now), but the swallowing problems can happen with c spine problems. I went through 2 swallowing tests to rule out cancer! They found a swallowing delay. I told them don't worry about it, I have a blender if it gets that bad. End of story. Maybe my doctor didn't think Anxiety disorder was an option because it might make me feel like smacking him that day. If you notice some relief with laying down (if you ever do) and heat, then it might not be totally anxiety. I keep a heated bag on my neck some of the time and I'm pretty sure the weight of our heads on our troubled necks doesn't help.
As far as keeping your house perfect, the kids all looked after, with dinner on the table for your dream man (not to mention your family who thinks you should just get over it), you should be able to do all that quite nicely. Until you drop. Which could be fairly soon. Anybody in your world to help out? Do you qualify for any help in your area because of the special needs? People expect alot from a girl your age and may not understand what you are up against with your spine misery. I hope that your husband is understanding, even though he possibly comes home overworked and tired himself.
I hope you can avoid a nervous breakdown as although you might get the needed rest, it's really not a pleasant option.
I hope to have been of some help and not too sarcastic. I just wanted you to know that there are people who will respond to your post in some very helpful ways so get those results posted!

hoping to cheer,

Tri21MomX2 02-27-2009 08:33 AM

Re: Neck and Upper/Mid Back Pain with Other Weird Symptoms
[I]Feelbad and Choc:[/I]

Thank you so much for responding to my frantic post. You are both angels, IMHO, :angel:

I have the CD of all of my MRIs, but cannot figure out how to get the report to open. There is an icon for it, but it just won't open so I'm thinking only the images were stored on it. I will endeavor to get a copy of the report of the Cervical MRI. I can't bring myself to look at the images. It makes me queasy. I can look at anyone else's. Just not my own. Is that normal?

Anyway, what I meant by impressive is the four bulging discs and the stenosis. Not to mention the instability they found on the x-rays (albeit "mild" according to whomever read it at the hospital).

I guess I'm just really trying my best not to panic at this point. If I can tell myself the pain is really only muscular, and it'll ease as soon as I can just find the time to relax (HA!), then I think MAYBE I might make it through the weekend. I go back to my pain doc on Tuesday. So far, he's been just about zero help. Unfortunately his is like one of two practices here locally (I think) that will even take me because I've been treated with narcotics. What's with all these so-called "pain centers" lately? If you're currently on narcotics, they won't even touch you? What about if I want to get off of them? Because I DO! The absolute LAST thing I need is to get dependent on even stronger pain meds than I've been on. It looks as if that's the way I'm headed unless I can find SOMEONE who will take me seriously. If I've missed previous posts on this subject, can someone please point me to them? I wish I could sit here for hours scrolling through, but I can't. Both of my boys are sick. Again. And the seven year old, Aidan, is home from school. Today and yesterday as well. I've really had my hands full the last two months. One of them is ALWAYS sick. Or they're sharing it with me.

To answer your question, [I]feelbad[/I], I do have help. We live with my mother. Moved in after my dad passed away in 1999 (5 days before Christmas). That wasn't a very pleasant holiday as you can imagine. But we always bounce back. We cope. We manage. I don't know how, but God gives us just what we need. Nothing more, usually. This road is a hard one......anyway, my mother takes over when I just can't any longer. Lately that's been more and more. And don't I feel guilty that I'm causing all of this extra work? You bet! My husband IS very understanding. In fact, I couldn't find a better one. He is, in many respects, [I]every woman's dream man[/I]. He takes the majority of the boys' care at night and also on the weekends so I can sleep in (8:00AM! woo-hoo!). He does all the heavy lifting and the big household chores, including the lawn in the summer. He's bright, and I still think he's handsome after all these years (haha!). He's from Australia, so he has that lovely accent. I don't hear it too much anymore, but I can tell it's still there 'cuz you should see the looks he gets from the ladies.....That's one reason I want to make sure his needs are met. If you know what I mean. I'm sure someone else would be happy to if I can't.

[I][I didn't mention in my original post that the baby is adopted. I didn't think it wasn't relevant. But it has occurred to me that someone might think there may be a genetic component to this that there probably isn't. Just FYI.][/I]

So, once again, thank you for the support. I surely hope I can find the information you asked for because you sound like a veritable font of information, [I]feelbad[/I]. And [I]choc[/I], you seem like such a sympathetic lady. I cannot thank you both enough!
God Bless!
Mom of three: Catie (21), Aidan (7), and Colin (1)

feelbad 02-28-2009 07:52 AM

Re: Neck and Upper/Mid Back Pain with Other Weird Symptoms
at least you have a great support system and someone to simply take over when you just cannot anymore,and believe me,that is a really HUGE thing when we are in the types of situations we have to live in with this crap.
if you cannot open up that report,you can call the place where you had this done and see if they can help you to get it open or simply ask them to send you out a copy of the radiologists report. you could also just stop in there too and sign a release of information and they should be able to just run you off a copy right there. having that rad report really would help, just to know what he or she found as the most pertinent findings. its just knowing what that rad found with your films would help alot for me to help you. marcia

megss 02-28-2009 02:06 PM

Re: Neck and Upper/Mid Back Pain with Other Weird Symptoms
Oh my, how I can relate to you. Your story is SO similar to mine that it is not even funny. If you don't mind reading a long post, I would like to share my story with you.

I have one young child. She is 18 months. I also worked full time, and maintained the household so my hubby could also work full time and go to college full time.

My pain started last May, so around the same time as yours. After a month or so, I saw my GP. He said I had strained a muscle and thats it. After another month, I called his nurse stating that I was not getting better, and in an annoyed tone, I was told again that it is just a strained muscle. I mentioned it to my OB at my annual exam over the summer. He prescribed Naproxen for a week which is an anti-inflammatory. It didn't initially help with the pain or anything, but at the end of the week, the pain was totally gone. A few days later it returned with a vengance. I went back to my GP and he prescribed Prednisione, which did not help at all. I called him back and he said to make an appointment for 2 weeks out. I did not make that appointment and instead referred myself to a pain management clinic, thinking it was an orthopedic or something.

I ended up taking myself to Urgent Care a week before my appointment because the pain was so bad. They did an x-ray which showed I had grade 1 Spondylolisthesis of L5 on S1. I have the kind where there is a fracture in my spine, causing the vertebrae to not be stable and slip forward. HE gave me some pain meds and another round of prednision, which again did nothing. At my PM appointment, he wanted to do an injection, have me start PT, and call it a day. I was very un-happy with that treatment plan because I wanted an MRI first to see the whole picture. I had to request the MRI myself. The MRI showed the Spondylolisthesis as well as 2 disc problems and some sort of cyst. L4-L5 has DDD as well as an annular tear and bulge. L5-S1 is herniated. I decide to refer myself to an orthopedic.

The ortho gives me pain meds and sends me on for an injection, which did nothing for my pain. At my follow up appointment with him, he sent me on to see the surgeon. The surgeon ordered more tests: a CT scan and a discogram, and he put me on disability from work. At our next appointment he revealed that I would need a 2 level spinal fusion, but first he wanted me to try PT for a month and another injection. Again, the injection did nothing, and I completed the PT with no pain relief. (All this time the pain is becoming more and more severe). He then had me start another, more intensive PT program, and promised that at our next appointment he would schedule surgery. The PT caused such SEVERE pain, that the doctor there told me I needed to stop and see the surgeon for surgery, after only being in the program for a couple of weeks. That doctor and my surgeon never communicated however, so when I went to see the surgeon, his plan for me completely changed. (we think he maybe thought I was just trying to get out of PT) Also, I had gotten a second opinion during that time. That Neuro surgeon wouldn't give me the time of day since my tests showed no nerve root impingement. I asked that office not to let my current Dr. know I had been there for another appointment, but they sent him the notes anyway. We also wonder if that had something to do with it.

I should also note that by this time I had been fired from my position because I was going to need to much time off. (I had been with the company less than a year so this was legal). I will be loosing insurance coverage on March 31st, and we will have to pay for Cobra because my husband is also being laid off. This has made my situation all the more urgent. I cannot return to work until I am fixed. So needless to say that is another HUGE stressor for us.

So suddenly, the surgeon says that my pain is coming from weak muscles and he will not do surgery. He also doesn't believe in prescribing pain meds for weak muscle pain, so I had no more meds. He basically said good luck to me. Luckily the PT doctor gave me some meds to get by.

I found another surgeon and made an appointment with him, but in the meantime I ended up in the ER twice from severe pain that I could not handle. Both times I wanted more imaging done because I swear more damage is present now, but no one will give me one. My symptoms have gotten so much worse, including increased numbness and pins and needles. I cannot cook or clean anymore, or do any of my responsibilities around the house. Taking care of our daughter is a huge challenge and I normally have someone here to help me when hubby is working.

Thankfully I have found a wonderful surgeon. He is doing my surgery in a month. There was no question about it in his mind. I will be having a spinal fusion. He thinks it will really really help me, and I hope he is right!

Sorry for such a story, but I wanted to share since you sound just like me. I have also lost a bunch of weight from the pain and meds. I have come across a lot of rude doctors along the way, I have found it so hard to find help and compassion, and life is difficult when you have to care for a small child. I hope you get some answers and some help soon.

ZenRider 01-02-2011 05:28 AM

Re: Neck and Upper/Mid Back Pain with Other Weird Symptoms
I can understand being at the "end of your rope". We should be able to wave at each other because I am at the same place.:wave: Our medical situations are very similar, except that you have more docs "stumped" than I do, only because I haven't seen that many yet! I have had the spasms for about 18 months now, and they have been getting progressively more intense. The latest tweak is that I am beginning to have some issues swallowing. At first, I just thought the "occasional" choke was from something going down the wrong way. But lately I have been experiencing this on my own saliva! And now the swallowing, itself, has started to become "laborious" on occasion. No pain with it, just seems to get right to the threshold of the muscles following through with the swallow and they stop, dead in their tracks! That's kind of a "drag" when I have food there! So my remedy has been to do a little "bio-feedback" and relax, with the food still on the threshold of me choking on it, and do a sort of mental "reset" until it all works again! That's a bit "un-nerving" when it happens. Another new development, which may or may not be, is a "drone-ish" dull pain in my mid to upper-mid back when I swallow. My only conclusion is that this too is nerve related.

I recently completed the first 3 sections of the "full rack" MRI series, from the brain stem to the LL. I have known L5-S1 bulge and rt. formina stenosis, from a head-on collision in 1989. I also have DDD in T3-6 and C1-6. We won't know if there is nerve involvement until the series is complete and they have been read. The Musco-skeletal guy that did the physical on me, found I have NO reflexes anywhere and that neither "cornea" responded to stimuli. Hence the full testing. However, I am doing this through the VA West LA Medical System - the slowest in the country. I don't have any other insurance and I am getting worried that in the time it's taking to evaluate me, I could develop the one "acute" episode that ends me. On the bright side, they would save the expenditures of further testing and treatment. Sometimes I wonder if that's not the plan anyway...

On a more "Cheery" note, the pain meds prescribed makes me feel like I'm on a cruise liner in a storm! Sort of like a cross between Mr. Toad's Wild Ride and The Magic Tea Cups, for free! :round: Now all I need is some "early" Pink Floyd and I could take a trip, and of course, something that actually takes away the PAIN!.:blob_fire

In retrospect, some 'ump-teen' years ago, I suppose my grandfather would have "his" cure that would be the "end-all". I am figuring he would be looking for his 40oz. ball-peen hammer for one of my big toes! Yep, I can hear him now "See, forgot all about that "other" pain, right?!"...UGH! :eek:

sassy411 01-02-2011 09:10 AM

Re: Neck and Upper/Mid Back Pain with Other Weird Symptoms
I have no advice, sadly. But I just wanted to say I love your attitude & sense of humor.

I hope you find a doctor worthy of both.

teteri66 01-02-2011 10:18 AM

Re: Neck and Upper/Mid Back Pain with Other Weird Symptoms
First, welcome to the board. I agree with Sassy's articulate comments. Your symptoms do not pop out as being any run-of-the-mill spine problem to a layman like myself.

Are you being tested for neuromuscular diseases in addition to spine problems? There are some that cause problems with swallowing. Neuromuscular disorders and auto-immune disorders can cause symptoms similar to cervical back issues, so it is for the reason I ask...not to send up any red flags to alarm you.

platnm 04-01-2011 04:57 PM

Re: Neck and Upper/Mid Back Pain with Other Weird Symptoms
I am in no way trying to lecture you, but heres my advice.

Do your doctors know you are prescribed/taking adderall and do you still take them? Taking adderall with pain killers is a very dangerous combination. I'm also prescribed adderall so don't take this the wrong way.

The first thing you need to do is stop taking adderall completely. Adderall is known to cause the muscle pain/spasms you described. Adderall in combination with your appetite suppression means your body isn't getting the nutrients it needs. Another thing that contributes to the muscle pain/spasms is that adderall causes dehydration.

Adderall is also known for increasing the sympathetic activity of your autonomic nervous system. This results in less blood flow/bodily maintenance to your internal organs such as the GI, liver, etc and increased flow to your heart, lungs, skeletal muscles, and brain. This is also probably why you experience difficulty swallowing/throat pain.

I know adderall isn't causing your spine/disc problems, but it is very hard to treat/diagnose spinal problems when theres a multitude of factors to consider that could be caused by adderall.

So first, discontinue your adderall for atleast a month or two. Also, get back to your normal diet (healthy), drink a lot more water, and maybe even try vitamins/joint supplements. Third, its likely that with all your spinal issues and muscle spasms your body is out of alignment. It is important to start being conscious of your posture when you sit, stand, and especially when you sleep.

If you do this your pain will definitely decrease and make it easier to treat/diagnose your spinal problems. I know its hard to do certain things without adderall, but once your healthy again you can probably start back on it.

All times are GMT -7. The time now is 12:48 AM.