Hi, I'm new to this site and have never posted to a site like this. I have been having problems for quite some time. In February 2010 I had neck surgery. Since that time so many things have been going on with me. First I was told I had low B12 and Fibromyalgia. My B 12 is back up but I'm still having problems with my neck hurting and pain and numbness in my arms. I've recently went back to the surgeon who done my first surgery, because my symptoms seem to have gotten worse. Last November I noticed a lump on the right side of my neck. At first I thought it might be from scarr tissue, but as time has gone by it has gotten bigger and I'm feeling pressure on my throat to the point it feels like someone is choking me at times. The surgeon ordered a Ct of my neck and also did a MRI w/contrast. Today I was told the Ct showed several swollen Lymph Nodes in my neck. But he did not see any reason for further neck surgery as for as my spine was concerned. I'm having some headache's, numbness and tingling in my left ear, some on my face, and severe numbness in my right hand. Does any of this sound familiar to anyone out there? I'm a little concerned that I'm having all these symptoms. My surgeon recommended I see my Family Doctor about the Lymph Node and a Neurologist also. I'm soooo confused. Help Please!!!!
You say you have numbness and tingling in your arm, could this be residual from the spinal (where?) surgery? Possibly compressing a nerve? Most of the symptoms seem more relative to your neck complaint than to the node I would guess but at least he has refered you on to another dr, so that's good news. Good luck
Last edited by Administrator; 10-26-2011 at 12:05 AM.
Hi thanks for replying. I seen a Neurologist Thursday and he sent me for a Emg (I think)
some of my hand pain is coming from carpel tunnel but my neck gives me fits so I'm sure thats still part of it also. However my Neuro Surgeon seems to think most of my symtoms are not related to my neck. I'm having a ultra sound done Monday and seeing a ENT specialist Tues. Most everyone that I've seen, seems to think that there are a few different things going on. The Neurologist is leaning toward a autoimmue disorder. Maybe I will find out more this week. I'm am concerned about the lymphnodes its a little scary to me. Thanks again for replying.
Hi there glad to see we can get some posts going!! The EMG should be done with an NCS(nerve conduction study) and basically this should tell you if any of the nerves or muscles are impinged in your cervical area. Not pleasant but not bad!!! Are they concered about Lupus? Or did they give any idea as to which autoimmune disorder they suspect? You still didn't mention what your neck surgery was and to which area it was on. maybe a bit more info ie age, recent health probs, test results etc and maybe we can chat about it!! We are not professionals but sometimes all we need is someone to talk with about our worries as I know I don't want to burden my husband or family with whats really on my mind!! Good luck and talk soon Mish
Hey Mish, I've just turned 50 this month, and boy do I feel older. I had neck surgery in Feb. 2010. it was a neck fusion C5-C6. I know there is more problems in my neck according to my MRI's but my surgeon feels that something else is causing all my symtoms. No-one as mentioned Lupus, the only thing the neurologist told me was that he thought it might have something to do with my autoimmune system. My symptoms are basically numbness and tingling, at times all over my body.... most of the time I have tingling in my left ear and parts of my face (weird huh?) My right arm burns and tingles. Feels like it trying to wake up after it's been asleep. It is painful. I cannot do much of anything without having some difficulty. When the lump on my neck first showed up, I thought it was from scar tissue, because it is under my scar from surgery. A year and a half later I find out it's my lymphnodes. The sad thing is I've told every Doctor I've seen that I feel as if I'm being choked.... One Neurologist told me I had Fibromyalgia because my muscles in my arms and legs aches so. Almost like I'm sore from working out and yet I've not worked out. It's all crazy and sometimes I feel crazy for saying it out loud. Thanks for listening. And your right I hate to tell my family everything I'm thinking and feeling at this point. I just want my life back!
Hey Mish, Thanks for getting back with me. I just turned 50 this month. I had neck surgery in Feb. 2010, it was a fusion to C5-C6 since then I've been diagnosed with Fibromyalgia, for some reason I started feeling like my muscles were sore and tender to the touch. Almost like I had worked out and was sore from it. I noticed the lump on my neck not long after surgery but thought it was probably scare tissue. Over the past year and a half it has gotten bigger and is putting pressure on my throat like someone has their hand on me and applying pressure. I've told every Dr. I've seen since my surgery and just recently got my Surgeon to really notice it. That's when they ordered the CT scan and found swollen lymphnodes. It just so happened I had a appt. with a Neurologist right after I found out. He thinks there may be something going on with my autoimmune system just not sure what yet. I've also seen my family Dr. on the advice of my surgeon that did the Ct. and now he has order a ultra sound on my neck and wants me to see a ENT. I feel like I'm seeing so many Dr's and everyone is looking at something different. How I wish I had them in one room to figure out what going on. I'm not for sure which study it was that they done first other day, but they didn't use the needles on me. The Doctor that did it said they didn't need to do it because the found the carrpal tunnel in my hand. I know something is going on..... My neck and arm are both giving me fits!!!!! I have tingling in my left ear spots on my face and sometimes all over my body. Everyday task such as blow drying my hair, cooking meals for my family, have become difficult to say the least. I have a rash that will show up from time to time on my face and it's always in the same place with is on my left cheek under my jaw line. I have terrible head sweats where I can actually ring water out of my hair. Even when I'm standing in front of a fan. I had a Hysterectomy this year and I'm on hormone patches so I don't know if some of this is coming from that or now. I'm starting to think that even though, I do have a bad neck, there is more going on and I hope they find out soon. Thank You so much for replying to my post. Like you I don't like to tell my family everything I'm thinking or feeling for that matter. I hope I've given you more information as to what it going on.
Hi there hope you are holding up!! If your Dr has suggested fibromyalgia there is a specific kind of test he should do(something to do with certain amount of points on the body criteria). Just something you may want to think about though is anxiety. I know this may sound like a cop-out dx but I've actually experienced the "tingling" all over that you have described and it was due to anxiety attacks. The brain is amazing when you really think about that by just stressing over something(which could be something like you health!)can cause such a serious physical reaction. Just thought I'd throw that out there for consideration By the way I also had a c5/6 injury 5yrs ago but the dr's "didn't feel" it needed any intervention. Just out of curiosity what made the Dr come to autoimmune? Bloodwork???
Hey, I don't know why he's thinking that exactly. It's weird, I've seen two surgeons and both of them have thrown around the idea that it could be MS. However the Neurologist didn't think so. I know he done the Nerve conduction test to see if I might have Neuropathy, they tested both legs and feet and my right arm, came to the conclusion it was the carpel tunnel. I think the Neurologist thinks it autoimmune because of the swollen lymphnodes, I guess it being a sign my body is trying to fight off something. He done blood work on me back in Feb. this year and it came back ok. However, I'm not sure what all he done he just said a blood workup??? I'm sure anxiety can do all sorts of things to the body. I'm am on Celexa which has helped my nerves. I've always been very active and this whole thing has gotten me down a bit. Maybe tomorrow will give me some insight to what's going on. I have the ultra sound tomorrow and seeing the ENT Tues. Maybe then I will know alittle more.
Hi Pam just read your last reply on my post so said I would reply to you on yours!! Was just about to ask you had you had an ultrasound scan so you have answered that. Was that today? The good thing that showed up(imvho)is that your nodes are showing up bilaterally and that there doesn't seem to be any supraclavicular nodes there. I had been tested in the past for lupus and am aware that there is a very specific blood test for that disorder I think its called ANA(anti-nuclear). So surely if they suspected lupus they would have ordered this test so you need to get a copy of all of the bloods you had done. Its not good enough for your dr just to say blood is fine. If you haven't had the ANA test done, get it done and that can rule lupus either in or out. I think the sweats you talk about may very well due to the patches(HRT I presume)but again all we are doing is bloomin well guessing!!!!!
Hey Mish, Actually they did a couple of ANA test... One was the ANA Titer and ANA Screen. I have a copy of the results the ANA Titer just said see notes... the note was
Homogeneous 1:320 titer ??? the other test showed >1:80! with normal being <1:80- (don't know what any of this means though) As far as it being the hormone patch, I've been doing this for quite some time, I thought the patches might help but so far that hasn't happened. I did have the ultra sound Monday, but know results yet. Today I see the ENT specialist. Maybe I'll have word soon. What are supraclavicular nodes? I tried to question the Ultra Sound Tech as to if she could tell what Nodes were swollen and she was very vague. Which is no suprise. Hope your doing okay? I tried to post on your comment on this site and I don't think it did it for some reason. I don't know what I did wrong.
Hi Pam how's things? I have no idea what your bloods mean but did you have a look at the site "Lab Tests Online" really good site for working out what blood results mean. Surpraclavicular nodes are nodes under the clavicle(collarbone) and as far as I'm aware their job is to service the lungs. I think the reason why dr's are sometimes concerned if the supraclavicular nodes are enlarged is that they dont usually enlarge without cause(ie not viral etc). So I suppose these particular nodes are more "suspicious". My nodes have been enlarged now for almost 2 yrs, it started with one and now there are lots!! Mine are a mix of superficial and deeper(but I can still feel them with my fingers)Mine are very uncomfortable but not what you would call painful. Hope you got on ok with the scan etc!
Thanks for the info on that site. I haven't been on it but will definitely check it out. I puzzles me that we can't go to a Dr. and have them figure out whats wrong. It's always a ripple effect. I feel like I'm going from one Dr. to another and not really finding out anything.... So what exactly are the Doctors telling you? It's amazing how many views we can get. I guess that's because our bodies are so complex. The ENT said he thought alot of mine was from my neck having so many problems.... Go figure.... Hope your doing good.
Hi Pam I totally agree about the dr's. Wouldn't it be great if you could get straight answers from just one or two(but then how would they make money if the problem got solved quickly?) I do have one v.bizarre symptom that no-one seems to be able to shed any light on(not even the net haha). Every time I eat within literally 5mins of doing so my heart rate goes through the roof and I get an unmerciful headache that feels like my face is going to fall off. I get really weak after it and the sensation lasts for a couple of hours. No doc knows what this is or seem to be in the least concerned by this. Odd huh???
Wow Mish that is weird. It has become very obvious to me lately how different everyone's body is. How different things affect us. My symptoms change at times. I honestly think after I had my neck surgery my nervous system has just gone haywire. I still haven't heard back from my ultra sound or the neurologist. Of course they usually take their time on everything but ur co-pay and the want it up front.
Keep me posted!
Hey Mish, just checking in with you. Hope your doing well. I finally got my ultra sound results today ( well sort of ) They called today from the Dr.s office to let me know that the general surgeon's office should be calling me to set up a time to biopsy the hard nodule on my thyroid. Of course my reply was ..... so I have a nodule in on my thyroid? She was a little thrown off by the fact that the nurse had not called me yet. Long story short. I have a hard nodule on the left side of my thyroid, which is strange to me because it's the rights side that is swollen. Could the lymphnodes on the right side be over compensateing for the left side. I'm soooo confused and every Dr. I see it just seems to add to it. I believe tomorrow I will call and try to actually talk to the Dr.s nurse. Maybe she can give me a little more insite. I also wonder why they are sending me to a general surgeon instead of a encrynologist (? not sure on spelling) What are your thoughts, since we seem to be the only people on here with any.