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Thread: Recent Spike in Pain

  1. #1
    Senior Member mike's Avatar
    Join Date
    Jul 2001
    Florence, Kentucky

    Recent Spike in Pain

    Along with many on this site I have come to expect my CP level to continue to increase over time, however within just the last four weeks my burning pain has jump dramatically. I had an MRI about a year ago and it disclosed a minute syrinx that the doctor thought was of no consequence so I just had another MRI to rule out any change in that condition causing my problem.

    My question is: have any of you folks on this site had a sudden spike in their pain level for no apparent medical reason? If so did the pain level come down again or were you faced with greatly increasing your medication?

  2. #2
    Senior Member
    Join Date
    Jun 2006
    East Coast
    Friend of mine had syrinx that "had not visually changed" on the scans...but turned out, after 4 months of misery, to be the cause anyway.

  3. #3
    Hi mike,sorry to ehar things are getting worse with your burning,believe me,i can soo sympathize.i am wondering tho,is there any possibility that you could have RSD instead of central?i really haven't had a constant upping of my burning in the central affected area,just mostly the crappy stinging/with a hint of burning as opposed to my RSD which DOES definitely increase in the overall burning intensity as time goes particualr CP has pretty much stabilized as far as what it does.sooo i am wondering if this is just the way MY central is or the norm for most folks.its only because i actually have both the central in my arm and up over the shoulderblades and the hidious pain of the RSD in my right knee,that i am really able to defferintiate between the intensity of symptoms.while some of the symptoms are exactly the same in both conditions,there are very different ones when dealing with RSD vs central.alot of people are actually mis dxed with one or the other only because they are that close in symptoms.but with RSD,you can have large spread,there is usually a big difference in the temp of the affected area/extremity.mine is heat but some will have extreme coldness.the temp over my affected knee is usually between 101 and 102 degrees while my other knee is always always cooler.there can also be color changes in the skin surface along with the possibility of just plain wierd looking 'markings'?like skin mottling or deep purple or red blotches? and there is also almost always some level of actual swelling going on.does any of this sound like it would possibley 'fit" with your ongoing symptoms?

    now,with that syrinx?i do not actually have a syrinx but did/do(still have ten percent left behind that they were not able to reach with surgical resection)have what is called a for years and years,every pateint that had these in their cords were told that they cause no pain.well after tons of patients started coming in and complaining of some really bizarre types of pain and sensations,the NSs who were seeing these patients over time,started to finally believe that they can cause pain,DUH! i mean geez,they ARE inside of the flppin cord where all those nerves and tracts are running thru.this could be the same thing that they are doing with syrinx's.i have heard of many people on various sites talking about how much pain these syrinx's are actually causing,so who do you believe,the actual patient who is feeling it or a clueless doc who is going by only what he has been "taught"?

    the thingis,with the cavernoma,my pain was really more of an extreme intense non stop pressure/prying sensation that was underneath my right shoulder blade,it was there always,24/7 and the only thing that actually helped was if i just ground my shoulderblade into a freakin wall,i mean really ground it into the wall,hard.this created like a back pressure and made that shouldblade feel so much was a boring or gnawing type of painsation.really hard to describe but if you have ever felt it you would know exactly what i am talking about.really really strange in nature.

    i honestly would do a ton of research on syrinx's and see what the majority of patients are actually feeling and when you find that good actual info,print it off and bring it into your next doc appt for him to read.

    there is such a huge difference in the overall knowledge between various NSs and other specialists out all depends on how many patients any doc has seen in the past with the very same conditions,and any new info that comes down the pike for them to update themselves on,you know what i mean?i had two NSs who swore my pain under the shoulder blade was in no way related to my cav,but when i finally went for my third opinion up at the university of MN,where they actually see the worst of the worst types of cases and the ones that other docs have given up on,that the head of neurosurgery who i got lucky enough to see,totally agreed with me on the cav/pain connection and in fact it was one of the first things he told me,then continued to actually draw me pictures of just why this was actually possible.go figure.but he was relying on actual experience with many patients who he had seen over time(30 years of experience)with these inside their cords,and not something he had been 'told" or taught.just find out as much info on these as you possibly can and then load yourself with that ammunition and have anice heart to heart with that doc about your may or may not be related depending on just how it is presenting in comparrison to where its actually located in your cord and where the pain is.

    but the one HUGE thing i have learned over the years in dealing with all my medical problems and my sons is that knowledge IS truely power.being able to counter what you are being told by a doc with the cold hard facts really lets them know that you know your condition,in some cases,better than they do.i hope things work out Mike,Marcia

  4. #4
    Join Date
    Nov 2006
    Nashville, TN
    The size of my syrinx has not changed in two years but the pain seems to get progressively worse. Sometimes it gets really bad but will get bareby again. Take not of your stress level; that can make the pain worse. I try to stay busy and keep my mind off of it. When the pain is too bad, I'll take the meds. Try getting extra omega 3's. I have found that really does help with the pain.

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