Hi everyone. I'm in the process of figuring out what's going on at the base of my skull and neck area. Things always seem pretty normal at the doctor, so it doesn't appear to be anything major. I had tried physical therapy and didn't get good results, but I'm trying a new physical therapy/chiropractic blend (same doctor). X-rays did show that I was misaligned where my skull and neck meet. My symptoms are a lot of soreness and pressure, as well as some neurological-type symptoms. My doctors believe there is some nerve involvement, likely from the muscles being too tight. The pain at least feels "normal" like a pulled muscle to me.
It's very tender in those "pockets" on either side of the back/bottom part of the head. On either side of my cervical spine, I feel very deep, hard lumps. These are not tiny lumps and feel quite large. My doctors check this area all the time and say, "Oh you must be sore here." Are these basically muscle knots? Just trying to get an idea of what I am feeling. My right side is typically more swollen feeling, but at times it might feel a bit better or a bit worse. There are no recent changes in size/shape and it seems to have just developed over time. I have a desk job and my symptoms started about 2 years into my job... I wouldn't be surprised if bad posture just created problems over time.
Can muscle knots really cause a lot of discomfort? I typically thought I would just be sore, but the pressure and vertigo interferes with my days. I get tingling on my right side in the afternoon and my ears are often bothered. If I don't do a good job with my posture and other preventive measures, it can trigger a migraine. I guess I was curious to hear if anyone else has had just regular tension that really built up over time and could cause significant discomfort.
PS - I have had limited relief from trigger point therapy, which does lead me to believe the lumps are large muscle knots. However, I've heard knots be described as pea-sized and this is definitely not the case.
Ah, those are the sub-occipital muscle inserts. I hate those!
Classic trigger points are pea-sized, but they can either clump up, one on top of the other, or they can involve the whole muscle to make a bigger knot around themselves. In my lower back, I frequently get one the size of a walnut!
But my neck is definitely where the worst tension is. I've had an MRI, it's structurally fine, it just knots. In fact, it's been knotted about 99% of the time for the last 13 years. Sometimes I manage to get the knots out, through PT or massage, but then they come back very quickly.
I'm in a new treatment program now, with weekly trigger point injections for a while. I've had 3 rounds so far, and it has helped, although the actual process isn't fun.
Hi janewhite1! Thanks for the reply. It could definitely be a cluster of them in the area I am feeling. These are big problem spots for me and it feels like they are close to the cervical spine as well... unless I'm feeling an actual part of the spine (which in that case, it feels bigger on that side to me!). At work I would sit with my computer angled and had my head turned some to the left. I think this played a big part in adding extra tension.
So would you recommend trigger point injections? I always hear mixed things about them, but I suppose I could always try it. I'm hopeful that my chiropractic/PT care will be helpful this time around, but I want to have backup ideas just in case. Someone recommended getting trigger point massage regularly. I guess there is no easy fix and whatever treatment is going to be regular, not a short-term thing. What about occipital nerve blocks? Wasn't sure if that was ever recommended to you or if you have tried them. I haven't been diagnosed with occipital neuralgia, but I do have some of the symptoms and do have something going on with nerves... tingling in my upper right shoulder area. Lately my tinnitus has been very distracting. My ears have been ringing nonstop for many years, but the tones change more now, like a song is playing in my ear (and of course when I'm trying to sleep or work).
Sounds like these kinds of things are difficult to treat, especially when the details of what caused them are unknown. I hope the injections continue to help you out! I manage to get through my workdays but I just want to feel like my usual self again and be able to participate in some races with my friends and husband.
Yes, my neck trigger points really feel like they are attached to the spine, or like the spine is extra-thick. That's because there are long thick muscles right next to the spine.
I've never tried nerve blocks, just the injections of lidocaine into trigger points.
I've had several round of the injections in my life. Some helped, some didn't, none caused me any real harm. Sometimes they hurt going in, until the lidocaine takes effect, sometimes I hardly feel anything, sometimes they cause brief nonpainful but weird sensations, like heat or cold. Sometimes I feel the injected muscle JUMP, and when that happens I know it worked. Usually I'm somewhat sore the next day, but it's no worse than a demanding workout might cause.
The Following 2 Users Say Thank You to janewhite1 For This Useful Post: titanium65 (07-11-2012), tUrRrRa (07-06-2012)
Thank you for sharing your experience. That is good to know about the "jump" that you feel in the muscles. Are there any activities that you find make the symptoms worse? I typically feel worse when I'm sitting for long periods of time, anything high impact, bad posture... but I definitely want to change anything else I might be doing to slow the improvement. When I am feeling up to it, I will carefully jog on the treadmill for a little bit, but I usually stick with the elliptical or a workout DVD. I know the jogging/running isn't the best for the issues.
hi tur. jane has given you some really good advice about at least trying those TP injections. they 'can' work really well for some, but not an 'always' type of thing(kind of like anything else we try for any painful area). i have had since way back in like 98 on, at least about 100 seperate TP injections done. some worked, some did not. but the real 'key' here is actually trying like heck just to find out what IS the main generator of these godawful nasties and treat that 'base of operations' if at all possible to try and prevent them from even occuring in the first place. most TP inj use a combo of lidocaine/maricaine to numb it and alcohol to try and really beter break down that tissue OF the inner TP too. then others will actually try the lido along with some type of cortisone too. it kind of depends upon what THAT particular doc just decides 'they like' to use.
i have had (along with tons of others all since early 2000s) two particularly horrid ones both under my R shoulder blade that generated from, back then unknown til MRI reavealed this, a glob of blood vessels i had been born with inside my spinal cord, and right AT the c 8 nerve level. anything that is simply 'in' anyones cord will trigger out all kinds of crappy stuff simply by being in an area that NOTHING is supposed to be. soooo we went thru like every imaginable therepy and injection possible hoping something would just 'work". and NOTHING did, until wayyyy down the road in 07 when i got a referral from my pain clinics NP that i was seeing called 'myofacial release and crainiosacral therepy.(i would recommend this highly to anyone who is suffering with the ugly TPs). THAT, much to my shock finally actually worked, and extremely well i might add. and i still go only becasue my messed up c spine that is seriously falling apart now needs to be constantly 'unwound' and my fascia released(and all the way up the back of my head) just to try and stay ahead of those lil suckers.
things DO get more involved and will eventually also migrate onto other muscle groups too as long as that 'trigger' is sending out some type of 'distress signals/inflammatory signals"(usually somehow spinal related when up that high), and that is the real reason that finding that instigator is so very crucial so it can be hit at it's own base and finally stop 'it' from even sending out those inflammatory signals which do go out to the muscle, but they hit the outter fascia first. this is the surrounding thin membrane that we just all have surrounding not just only our muscle, but also our blood vessels and all of our bodys organs, including the brain. this is all one very interconnected spiderweb like tissue that when inflam signals hit it, the fascia will first kind of thin out, then it just clamps down hard around the muscle group it surrounds, and hence, we have the trigger point..
that fascia litterally runs from our heads(surrounding the brain, then thru our necks, then on downwards and outwards) down thru our toes, and can involve other areas ONLY becasue it runs that way and is all one interconnected sheet. getting the TPs to just relase themselves is what truely helps the most when dealing with even these horrid huge ones like i ended up with too after they had to cut thru all of my thicker muscle in the upper back(right between shoulder blades) to get to my sp cord to just try and remove that cavernous hemangioma before it could bleed agin and paralyze me from my chest down. i was running out of 'good healthy cord space" in my cord by that time. that surgery left me with multi nightmare sized TPs where two of them, and i swear to god if you cut like a softball in half and then slid each piece of them both underneath my skin on each side of the incision area? THAT was the actual size of my TPs up there on my way upper back. the ONLY thing that eventually got rid of those too many years later WAS also that wonderful myofascial release therepy too.
what i am wondering here tur, is if any doc has ever actually ordred a good c spine/brain type of MRI with a contrast agent added that would really also show all the way into your vascular as well, both within your brain and that c spine that also carries, esp right AT c 6 level(this is right where your R and L vertebral arteries enter your c spine and then run along more of the outter spinal structure til it goes into the brain and becomes one with that basiliar artery), this particular blood that eventually flows on up to the brain and gives that 'hind brain" or the back of your brain ITS blood supply too. the carotids feed the frontal areas. have that ever been able to even tell you the 'whys' of why you even have occipital neuralga?
if those 'deep pockets' as you call them are running up against either vertebral artery in there, THAT alone could explain some things. getting that entire interconnected 'brain/c spine'(this IS actually our CNS as more of like one kind of interconnected organ there) fully MRIed and like i mentioned too, also using that contrasting agent to REALLY show the arteries of not just how those vertebrals look(i personally found out only with a contrased MRI that i have one vertebral artery that is smaller than the other in diameter) among other multiple types of bloodflow we all also have in our spinal , but also the arterial flow within your brain as well. i really DO think this one type of contrasted test would either rule in alot and also rule out alot of possibles for even your other neuro symptoms too. i just really do think that this test is badly needed right now to hopefully really show what IS and what is NOT there that could be impacting you. there are only two really basic things that can cause tingling and or numbness. they both are just capable, one being nerve impairment/involvement of some kind, and the other would be a bloodflow impaiment/involvement of some kind. these two very underlying things are just what anything would eventually in some way shape or form track back to somehow whenever all out numbness or just actual tingling is part of yopur neuro symptom picture. ao it does need some better definition just to even see what is generating the dx of occipital neuraga and other possible symptoms too. at least you would know one heck of alot more after that test as to the "whys' than you do right now.
if this were just me, and knowing what i have already been thru (and STILL dealing with daily)with my deteriorating c spine crap along with even having a vascular glob in my cord and what IS all possible there. then also having an actual brain aneurysm too, where i just had to do a ton more deeper neuro research as well just so i would be best prepared to ask the best questions of my interventional neuroradiologist, and my neurosurgeon too. i most DEFINETLY would be seeking out that one contrasted type of MRI. a chiros x rays really just are no where near enough just given your symptoms, which include some very deep trigger points as well."something' is just genrating the TPs in you that needs defining too.
hopefully you can get this test run to find out much more than you have merely kind of been 'told'. this just truely IS what i would be asking for right now if this were me hon. hopefully your doc will just do this for you and refer you off. you just really DO need and also deserve some answers here so the 'right" treatment(s) can really help you in all the BEST ways. i hope some of this helped you tur. good luck, marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
The Following User Says Thank You to feelbad For This Useful Post: tUrRrRa (07-08-2012)
feelbad - Thank you for your informative reply! I've definitely looked into some of what you were mentioning, but I guess I'm at that point where I have to try one thing at a time. I bought the highly recommended trigger point manual book (I got the one that for neck/head) and read all about myofascial pain syndrome and trigger points, and it really all makes sense. I'm not sure why more doctors don't mention this kind of thing. I was thinking of trying myofascial release/trigger point therapy specifically. I was considering getting a trigger point massage to start, but I looked into some places that do more myofascial release. I heard it can be quite painful, but usually very effective if you stick with it. Would you suggest I finish my first month of chiropractic care first? Yeah the x-rays taken by the chiro were definitely only for looking at where my head and neck connect to see if it was misaligned.
I previously had an order for brain MRI's with and without contrast. However, this was before all of this happened. I got the order from my neurologist that was helping with my migraines. I asked if there was a reason for the MRI since it was going to cost me over $500 (I hadn't met my deductible) and he said no, just routine and he recommends them to all patients just because. I chose to not get one then unless he had a concern. I saw a rheumatologist later on that gave me a similar order for c-spine, but it was the same thing... I got frustrated and had already wasted a lot of money that year on copays for things that didn't work. No MRI's that year.
After the first month of chiropractic care and if no improvement, I can certainly get another MRI order. Thing is, I'll be back to finding a new doctor for this. My neurologist moved away and I did not care for the rheumatologist. I do like my primary doctor. Would a c-spine and brain MRI likely cover what I need? I once had a jaw MRI mentioned to me and hear so many things... and I can't get my whole body MRI-ed haha. The symptoms already take up a lot of my life and I don't want them to cause financial difficulty as well. I'm trying to budget and do what I can, but keep running into other expenses. I make a good living, but my expenses are also high. I'll hit my deductible all in one month, so after that things should be easier.
If you guys have a recommendation on timing/order of trying things, please let me know. I assume MRI would be the next thing and then go from there. I also hear of SO many people that have the same symptoms and get an MRI that shows nothing. This made me frustrated since it seemed so common. Some doctors told me that surgery would be the next step after any MRI findings, and I'd rather try more conservative methods (like the injections) first. This is why I am not seeing certain doctors anymore.
PS - There is a HUGE link to working a desk job and this and I realize it. I was on a 2 week vacation and felt considerably better, even without treatment. This is another reason I feel hesitant to invest in a lot of tests. I think it really does stem from working at a desk all day. It just built up over time and causes many symptoms. I think some people do better handling this and maybe my body doesn't take it well. I need to learn more ways I can help with this. I also did a project on my tile floor and felt much worse after looking at the ground so much.
For this particular problem, I'm not pursuing diagnosis any more. It wastes time, it wastes money, it's stressful, and at this point, I'm confident that nothing will be found. (I actually did have a neck MRI back in the day.) If I develop new symptoms that are alarming, or if a doctor really suspects a mechanical problem, then I'll go for the test. But I'm not going to do MRIs "just on the off chance." I'd rather spend my time, money, and energy on things that actually HELP.
Now, for someone who's just developed the problem, by all means, pursue testing as far as seems reasonable, as there are many nonmuscular causes for neck pain that can and should be treated. But if nothing is found, and the problem doesn't seem to be killing you, there may be a time when you need to stop hunting for the answer and just live with it the best you can.
janewhite1 - I completely understand your thoughts about this. Although it's only been a year and a half for me, it's long enough that I've become very frustrated. It also prevents me from doing many things I enjoy, and I don't want it to take up even more time. I've been to the doctor so much and I'm usually the type to never have to go!
Today my ears are very irritated. They have a clogged feeling and the tinnitus is louder than usual. My ears have been ringing for as long as I can remember and it never stops. The clogged feeling makes me feel pretty disoriented. I kept having the feeling I was going to faint earlier, so I rested a lot. Makes me wonder if I can have any inner ear issue that can contribute to all of this. When my neck is acting up more than usual, so are my ears. Seems like a big connection there and I'm not sure which comes first. I'm going to do more trigger point exercises with the muscles that can refer symptoms to the ear and see it helps. I noticed my muscles were very jumpy there.
I also get a rolling sensation inside my head. Like it's pulsating/throbbing around in a circle, but not in a painful way. It feels like a migraine aura symptom to me. I feel it more on my left side. Do you ever feel this kind of sensation and any idea what it might be?
I don't usually get issues with my ears, unless I am actually sick. Jaw, sometimes. Feels like a toothache, only it moves around from one tooth to another! And sometimes I do get a headache all in one spot.
There could be other things going on, it's tough to say. If I were you, I'd keep doing the exercises and just see what happens.
Hi, I believe I've experienced what your going through. I began seeing one very skilled and knowledgeable chiropractor who said I had my skull locked at the very level ur experiencing pain at. I was in an extensive 15 month program with him with great results. I hope you can find some release!! *hugs*
The Following User Says Thank You to squirtatious4u For This Useful Post: tUrRrRa (07-09-2012)
hey tur. the one thing i forgot to mention here is that there are actually TWO different forms of the myuo release therepy. one is direct, this uses thumbs, tools, and even elbows to try and release. the other, and this IS what i get, is called indirect. this actually is dopne while you lie ON your back, and not the front like the direct does. the way the indirect releases tissue is believe it or not, by actually forcing our own bodys electromagnetic field back into the muscle and fascia. all i know is after five sesssions, those ugly two TPs that had been torturing me for well over a decade,were gone, completelyand those ones have never ever come back.
i had NO CLUE just what was involved in the myo release til i showed up that day to try it, but since this came sooo highly recommended by my then NP at my pain clinic, i figured what the heck ya know? i was and have been totally amazed at what my therepist has accomplished with this totally messed up body/c spine and upper back ,seriously. this therepy was also something that waay back in 03, after my spinal cord surgery left me with such a horrid and very painful mess between my shoulder blades where they cut in, all the way up to my c spine, my then therepist at the rehab hosp i got transferred to had also tried like hell to get my ins company to just cover some sessions, to no avail. now this same exact ins comp, now covers this the same way they cover chiro. i think they finally found out just hopw truely amazing this therepy can be for certain patients and decided to cover it now. can kind of be the only real explanation. but it brought my overall upwards pain actually down by at LEAST three points or so after those initial five sessions and that is more than proof to me that it simply does work. i still am seeing him now too since if I go without with all my continuing crap, i will get alot back from the almost constant signals shooting out from mostly my c spine. but you, if they could just work on those main areas of you bigger problem, it may not take too long at all. i would do this OVER any chiro when it comes to my esp c spine, any day.
but you still seriously NEED to find out what a contrasted MRI shows hon,you really do. alot of docs as i have found out the hard way, even the specialists? if they do not happen to know about, or fully understand what any given particular finding actually is or means for the patient, trust me hon, they CAN simply blow it off as nothing, when another more experienced in that area type doc would indeed see a something there. alot truely does come down to their overall experience with what any given pt has wrong, or 'going on' in any area where they are just supposed to know? they do not always just 'know'. that is what(thank god) second opnions are for.
i would seriously try like heck to first get that contrasted MRI done in which they would also be able to see your sinuses and the parts of the inner ear as well. but just seeing that c spine AND the brains arteries, along with the other softer tissue structures in there, just 'may' finally reveal itself as to what in the heck is triggering all this in you. i too get migrane with aura, but what you described really does not 'sound' like it to me anyways, unless that is YOUR normal. i have found over the many many years i have gotten my horrid migranes, that most of them tend to keep the very same 'types' of make up with each one. don't know if yours run that way or not, but usually if you have had these since like childhood like i have, they 'tend' to kind of start out the same and end the same.
problems with vascular crap that can just occur without real symptoms can 'decide' to pop in our brains and other vascular structures at just about any time thu out our lives. and that, considering your symptoms, really would take a good contrasted type of MRI at the very least just to see what your arteries and the ones in that c spine and the c spine itself look like. people who get migranes are also at much higher risk for vascular problems to develop within the brain too. so i would get this checked, then try and find a good and very experienced type of myo release therepist who does the indirect version and would tend then to also do the crainiosacral therepy as well. the combo of these two thereipies have just been a godsend for me tur, seriously. and it is NON painful and done from the front with the therepist simply lying his/her hands over key areas that then release the back. sounds strange, but somehow it all works, and extremely well for me and my mess..
i actually had three totally seperate opinions on what my cavernoma actually was, and what it ment for me,and none were really the same? could not believe that the seemingly knowledgable NSs i saw could see one dang thing soo very differently. if i had not gone to the U of MN here and just happen to see the head of neurosurgery that day, i would probablybe paralyzed from my chest on down. he was also the only NS out of those three that told me i had an 'active bleeder' inside that cavernoma becasue it had bled at least once already. i learned alot from finally seeing the 'right" NS for MY particular issue. experience ansd the knowledge gained from it truely matters when it comes to actual 'specialists hon, that one i do know now for certain. hopefully you can simply find a good neuro who will WANT to get to the bottom of your symptoms. some just really love that kind of challange and some are lazy too. i have had both unfortuently. but you DO need to get things moving here to even try and get things diagnosed so any real treatment or other therepys can be implemented. good luck hon, marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
The Following User Says Thank You to feelbad For This Useful Post: tUrRrRa (07-09-2012)
squirtatious4u - Thank you for your reply. I am glad you found such good relief! How long was it before you started to tell it was working? A lot of my treatment is actually physical therapy, so it's both at each visit.
feelbad - I appreciate all of the information and sharing your experience. I didn't realize about those two different types of myofascial release, so I'll need to look into that. The reason why I moved forward with the chiropractor is because they identified a problem even just in x-rays. They are working on that problem, but I agree that an MRI will let me know if anything more is going on. I just really want to correct things that come up so far, but of course look into other things too. Since my neurologist moved away, I did get a new neurologist name from a coworker that they highly recommend. I really hope things work out okay with insurance and I can keep the tests reasonable in cost. I'm young and really don't want to end up in financial trouble at such an early age. I usually try to talk to the doctors about this and figure out a way I can schedule visits to keep the costs reasonable. For example, I am doing physical therapy 2x per week and not 3x. They said 2x would still be pretty good. When I see a neurologist, I guess I need to ask if they can MRI from my c-spine and up, for all areas. It will be a little while though... my coworker told me it usually takes time to get an appointment there anyway. What about when an MRI shows nothing at all and looks normal?
I feel VERY good and normal when I'm walking around. If I could walk around all day, I would feel great. It's the sitting (mostly at work) that really gets to me. Today I used my lunch to go walking and will try to do this more often. I try to get up often and ordered a back support (hasn't arrived yet). Are there any other things I can be doing to help my posture and the feelings that come from being inactive?
The pressure and dizzy feelings are normal migraine signs for me. Thing is, sometimes I get one and other times I never do. I had been on Wellbutrin SR in the past and had recently started again, and it was causing me significant ear discomfort. My tinnitus was much louder than usual and the clogged feeling made me very disoriented. Since I absolutely did not feel great like this, I decided I'll go off the Wellbutrin again. My ears are already starting to improve and so is my balance. I'm really disappointed that it's doing that.
PS - Thought I'd mention a little more about the findings on my x-rays, even though I completely understand that they are not detailed like an MRI. It is a start though. I have worked at my current job for 4 years and work on a computer. I would sit with my computer angled to the left and would sit slightly turned to the left... the WHOLE time. Without telling this to anyone before those x-rays, they revealed that the top of my c-spine (next to the base of the head) was shifted over to the left a little.
I no longer sit like this and also no longer sleep with my head twisted to the side (used to be a stomach sleeper and would do this). Like I mentioned, I feel pretty good when walking around. On my most recent vacation, I felt almost like my usual self. Having that break from the desk was such a difference. My chair doesn't feel bad and seems okay, but I wonder if I need to look into my desk area more? I was observed by someone who looked at my area and posture and they said I do pretty well. I've heard that not using the back of your seat and sitting more to the front can be beneficial... any thoughts? I just don't want to be causing more issues from my everyday life.
