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    Old 08-16-2009, 03:24 AM   #1
    Phlox
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    Question Just DX'd with Stenosis - a few ?'s is all

    Hello! I will TRY to be as brief as possible, (Im sure youve read THAT before, LOL!! I know I have, HAHA!) As you know though, its hard to just break things down short-form when youre trying to be thorough, hehe! Its been a long story getting to where I am now, so I WILL try to include only the things relevant to whats going on now, and leave out prior problems if I dont think they could be connected. Im hoping those of you who have had, or have dealt with Stenosis in some way will at least read my questions (skip down to the questions if you dont want the wall of words--which believe me I understand, lol!!), either way its helpful since I'd appreciate ANY input from those of you with experience here! Okay for those who are nice enough to help with the questions just hop on down, hehe! And for those brave enough to face the "wall of words" please continue reading, LOL, and thank you!!

    Long story short I just found out that I have "stenosis of the neck" (that is how the nurse worded it that relayed the message to me) and after reading around the web and thru many threads here, I still have a few questions. I should mention that I dont even get a callback let alone an appointment until next week so I dont know much beyond what the nurse told me, unfortunately, and of course my only other reference for background is my own symptoms:

    Ive been suffering neck pain for years after a surgery on my thoracic area in which they removed part of my first rib, scalene muscles, and "opened up the thoracic area" to prevent future blood clots. The resulting scar tissue and loss of the scalenes has been a source of pain ever since; so recently when I started getting more pain in the neck area, as well as intense (but random on/off episodes) pain down my arms into my wrists and forearms, I assumed it was that situation getting worse, which the doctors warned me could happen. Apparently, its something unrelated, as the X-Rays have shown this Stenosis. The nurse didnt say much more, just that "it could get worse over time, you dont want to mess around with Stenosis." She made it sound very serious, scary even, to be honest. The strange thing about all this, one day I can be fine as if nothing is wrong at all, and the next day it can be SO bad I cant stand it. Other days its like my other neck pain, with it getting worse at night. So with that background, and not knowing much else, I wondered:

    1) I am a little concerned about a shoulder pain that I have been getting, and I cannot tell if it is related to the stenosis or something more scary (the heart, GASP! hehe, sorry Im silly when Im nervous). It doesnt seem to be related to the other pain, and I have been having high blood pressure readings lately, and, unfortunately, I have failed at quitting smoking several times this year, so theres that... Does anyone know if "that kind of shoulder pain" can also be very similar to that pain you get from the Stenosis? Is there any way to tell the difference?

    2) Even after reading thru other threads about when to get surgery, Im still a little confused. Some people said something about paralysis being possible if this is let go too long, or if there is an accident and someone with Stenosis is injured...that really, really scared me!!! Obviously I have to find out more on how bad mine is, but just based on my on again/off again pain, and its going down my arms into my elbows and wrists to the point where I cant even hold a mouse---but then the next day its fine---is there anyway to tell from that if I should have surgery?? Im really scared about the surgery itself because the last time I had surgery on my neck it impacted my life in a major and negative way, which was NOT supposed to happen...and the surgeon turned out to be a real swindler. Is it something where you shouldnt worry about it until EVERY day is horrible?

    3) I am confused about locations of the pain. Despite the pain sometimes going down both arms, it definitely seems to be more frequent AND more painful on the right side. Is this common, or is there a reason for that..or is that standard for Stenosis? My previous surgery and the bad scar tissue is on the left side of my neck, so it suprises me that my right side is sometimes in more pain, or sometimes the ONLY side in pain..is that normal or is that different for everyone?

    4) What are the options for pain control if I dont have surgery? I have tried Neurontin and Lyrica (amongst MANY other meds) for my other neck pain, but I did not like the side effects of any of the "nerve" meds---they all seemed to have a side effect of leaving me feeling hazy-brained, or cloudy thoughts ( hard to describe) even after months of taking it..it just wouldnt go away. Is there anyone still suffering from this, who has not, or can not, have surgery? If so, what are you doing about pain control?

    Well if you made it thru this wall of words I really have to say youre one tough cookie, LOL!! I would really appreciate any info to help answer my questions if others have dealt with this! Again if youve made it this far, Im already impressed with your stamina, haha, so your input would be extremely valuable. Im grateful for your taking the time, and another thing is PLEASE if you have any experiences of your own with Stenosis, how it affected you, and where are at now with it, I would love to hear them if youre all willing to share! In advance I'd like to say thank you for helping with my questions and sharing your personal experiences, hopefully thats not a premature thanks, hehe! Thank You!!

    Last edited by Phlox; 08-16-2009 at 03:34 AM.

     
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    Old 08-16-2009, 05:25 AM   #2
    Marywoo
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    Re: Just DX'd with Stenosis - a few ?'s is all

    Hi. i have not responded for months on here,but i could not pass up your post. I also have severe stenosis of the spine.and i am in agony every day.the dr. told me i have chronic pain because of all my issues.i am taking lyrica, hydrocodone advinza, which is timed released morphine,xanx,and cymbalta,i take one day at a time,i usually cannot move when it rains,and like you said never know which day will be good,i am so sorry for your suffering, because i understand it is agonizing,i never thought this would happen to me. i hope yours continues to get better,but i have been told that mine will just get worse.i have decided not to do surgeries because of adhesions ,because between you and me i just cant bare any more pain . God bless you, marywoo

     
    Old 08-16-2009, 01:34 PM   #3
    jennybyc
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    Re: Just DX'd with Stenosis - a few ?'s is all

    Hi Phlox...stenosis 101, huh. Here goes what I know about it(and I have it). Stenosis means "closing up" and you can have stenosis in all sorts of places where they are openings that are closing for some reason. A heart valve that is infected and closing up has stenosis. So that's what it means...closing up. In the cervical spine, you have the central canal for the spinal cord and that can have stenosis and be closing up around the spinal cord. You can be born with an abnormally small spinal canal or you can develop one through arthritis or injury. Both arthritis and injury can cause the bone to start growing to repair itself and as a result, overgrow making the inside canal smaller. Any injury or arthritis in someone born with stenosis, will cause problems as they are already small to start with. Sounds like with your thoracic problems, this might be your situation.

    Then there are the holes in the vertebrae where the nerves exit the vertebrae. Each vertebra has a set of nerves that peel off the cord on each side and go out to the body. They too have a hole-called the foramina- they can get "closed up". And then, in the neck only, you have arteries that go up to the head and their holes can get closed up too.

    But for this discussion, we will stick to the nerves and spinal cord. If the holes where the nerves to your body are closing up and pinching the nerves, you'll feel it. Personally, my pain was in the shoulder area and then would skip down to just above my elbow and then be mid forearm. Those were the "aching" areas for me but then I'd get pain radiating all the way to my fingers along with the aches. The vertebrae in the neck covers all the way from your head to your upper chest area and both arms so not knowing which ones are affected, it's just a guess at to what is affected there.

    And then there is stenosis of the spinal canal. That can press on the spinal cord itself and that doesn't hurt. What happens is you start to get symptoms of loss of function below the level of the compression. So let's say you have an area of bone compression at C6-C7. That would cause symptoms below that level but not above it. Let's say you were in an accident and your spinal cord was cut between C6 and C7...you'd end up with paralyzed legs, wrists and hands but could move your shoulders and elbows. So the docs look for any loss of function in legs, wrists and hands if you have cord compression in those areas. My worst area of cord compression was exactly there and I had very stiff legs that caused me to take baby steps when I walked. I kept dropping things with my hands and had difficulty doing things like painting, stirring foods on the stove. My hands and wrist were weak and clumsy with some slight numbness of the skin throughout. My toes felt numb and the skin on my legs felt different from the rest of my body. That is what loss of function is....a very slow progression towards paralysis. Not pain, but loss of function.

    That slow paralysis is one of the main reasons docs operate. They fear that if you have a fall or an accident that causes whiplash that it might cut off the blood supply to your spinal cord and leave you paralyzed. Think of it this way....if you take a bottle full of soda with the top off and bend the bottle to 45* what will happen? The soda will come rushing out the top as there is not enough room for it. If you put the same bottle of soda inside a bigger bottle so it has room to move around and bend the outer bottle to 45*, the soda bottle will simply move away from the bend. It might get bent a little but probably not enough to cause all the soda to come rushing upwards and out. That is what happens in a canal with stenosis...you lose the protective outer canal where there is spinal fluid to cushion the cord from disaster.The chances aren't that great(3%) that your cord would become that damaged so some docs don't want operate until you're badly affected. I had one neurosurgeon who thought I wasn't bad enough and another who thought I was. My deciding person was the neurologist I saw regularly as she knew me best. She voted to operate. It really is a decision you have to make with people you trust.

    So here is what you need to find out. What exactly is compressed by stenosis? Nerves or spinal cord or both? Having pain worse on one side than the other is a reflection of the compression being worse on that side so you next need to find out which side is worse and is it the side where you major pain is? Remember, you have nerves that exit to both sides in each vertebra. It can be bad on the left in one vertebra and worse on the right in the next one up or down. Is the nerve compression mild, moderate or severe? If the cord is compressed, how badly? They can measure it. A normal spinal cord is 11-12 millimeter wide in the neck. Is it below that? By how much and at what level? I had multiple areas of cord compression at different levels and to different degrees with the smallest being 6 millimeters between C6 and 7.

    As for pain meds to treat it, I am not a good person to speak to that issue because I had the pain but it was years before. I found out I had a major problem when I could barely walk. So I'll let someone else deal with that question.

    On the shoulder pain and whether it could be your heart or lung from smoking, you'll have an idea when you know if you have nerve compression on the left side. If you don't then you need to go looking for source elsewhere. I had so much shoulder pain I ended up having surgery on both shoulders(it was needed) but it only took away half the pain...the other half was from my neck.

    So I take it you have had a cervical MRI and are waiting to go see your doc for results. Ask the questions I posed above and even ask to see the MRI and have them show you and explain it. It's really a very visual experience. I'll never forget my neurologist putting the MRI up on the screen, pointing to one picture in particular and saying.....spinal cords should not look like pancakes!

    I hope this helps. Any questions, ask away.

    gentle hugs.................Jenny

     
    Old 08-17-2009, 05:49 AM   #4
    Phlox
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    Question Re: Just DX'd with Stenosis - a few ?'s is all

    Thank you so much for the replies! I was glad to see some potential information when I checked back, and it turned out even more helpful that I could have hoped for! Ive been doing more reading but it really hasnt helped me learn nearly as much as I just have from those with the experience.

    Thank you for your kind words Mary, and for sharing your specific meds. I have been on all of those at different points (except for the morphine) for my other neck issues, so at least it does not appear to be a whole new round of meds that may be upcoming if this turns out to be a persistent, worsening problem. Thank you for sharing that! Speaking of persistent pain issues, I hope that something changes for the better for you in this regard Mary! Im not sure how in all honesty since Im still learning about this, but maybe someday soon there will be a non-surgical option for things like this, or at least something more effective for relief..at least one can hope and/or pray. Also, I can REALLY empathize with the aversion to surgery because of adhesions---that is (or was, at any rate) the main source of my pain following my neck surgery, the way the adhesions formed right where the neck and shoulder/thoracic area come together. However, if it gets any worse than you describe now Mary, I would at least consider it a possibility. After reading Jennys post, Im starting to get a clearer picture of the loss of function as a predictor....I pray yours does not get any worse!!

    Jenny your post was great for specifics I can question my doctor on, those spec's were something else, and I thank you for taking your time in laying out the explantion. Like Mary you shared your experiences as well and I thank you so much for doing so. Its a little bit funny, I had to read through your post several times to really try to understand it because the pop bottle analogy wasnt clicking, haha!! In fact I went to take a shower, thought about it while I sang some shower tunes (I sound great in my own head, LOL!), then came back to reread it a few more times, LOL! I kept trying to equate my cervical spine with the pop bottle, and the whole time I shouldve just skipped ahead abit to the part about the spinal fluid and the loss of protection...it was like the bulb went off, I went "OH!" followed by a quick "Oh, DUH!" to myself, hehehe!

    All kidding aside though, between that loss of protection, the possibility of degradation, Marys situation and other experiences like hers I have read as well, it a little daunting...okay...frightning, hehe. In fact my biggest hope right now lies in something you mentioned that I had actually thought of this weekend while reading some other info about Stenosis---my diagnosis is based on X-Rays and my symptoms, so I have a small hope that perhaps since they are not as detailed it might be a mild case or something slightly different but less invasive. Of course it could just as easily go the other way, and when I read about the clumsy and weak comments in your post Jenny it also scared me since I didnt fully put the clumsy part together until now. I guess I have been dealing with the neck thing for so many years I was really putting it out of my mind even more than I realized, lol!

    I am assuming the doctor is going to follow up with an MRI or something similar to get a more accurate image, and I will have to go from there, but those questions I have already copied into a text file to save for when I have more information and access to the doctor, so thank you again Jenny for detailing and sharing those!! Thats something you should use as well Mary (if you havent already) if your situation worsens, to get a better idea apart from your doctor on whether the patient agrees with the doctor (something I didnt consider when I was younger, I just went along with what they suggested)! It sounds like by basically partnering with your doctor Jenny that it worked out rather well?

    Two questions I have to ask you Jenny off the top of my head: first, you mentioned that you had pain for years prior so waited until you couldnt walk so you couldnt speak to meds. Do you mean by that, you just did not know what was going on so you kept suffering to it, or was it like me where you thought it was something else, so you kept on the same pain management (or lack thereof) schedule thinking it was just that same pain getting worse and worse? Second thing I wondered from your post Jenny--you said, and I have read-- that Stenosis can be caused by accidents, genetics, arthritis, etc. Pardon my biological and medical ignorance (Im the guy who had to keep picturing the pop bottles until he skipped to the "fluid" part, remember? LOL!), but looking at an image of the thoracic area...surgery there, and on my rib & scalenes should not have an effect on the spinal canal itself, should it? Im just trying to understand how my surgery could cause--even indirectly--the closing/bone growth due to injury in the spinal column?

    Thank you again for the replies, they were VERY much appreciated! They were informative even if a little bit intimidating, but that is what I am here for, the info from those who have been through it so I thank you for sharing so much with me!! Oh boy, wait until I get to my Docs eventually, the questioooooons, lol!!

    Last edited by Phlox; 08-17-2009 at 05:54 AM.

     
    Old 08-17-2009, 11:25 AM   #5
    jennybyc
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    Re: Just DX'd with Stenosis - a few ?'s is all

    And here I thought the pop bottle thing would be EASIER to understand. guess I assume all guys have this inner engineer in them and go to those type explanations. But it's really hard to explain just how stenosis does it's damage.

    On the 2 questions...when I first hurt my neck it was 25 years ago and they really frowned on giving anyone with chronic spine pain ANY pain meds as they thought they'd become addicted. So I learned to tough out the pain. But I got arthritis so badly in my kness that I finally did get pain meds for them and of course...same body! So treat the knees and the back felt better. Finally knees were replaced 10 years ago and I got lots of pain meds for that. And by the time I recovered from that, the lessening of pain and the start of the numbness has started and my pain in my neck started to get better. I really had no idea I had that bad of a neck until I was shoveling snow in January of 2006 and I suddenly went numb from the neck down. I was stunned(an understatement) when the MRI showed 3 herniated disks and tons of nerve and cord compression. STUNNED! As was my doctor. It was my knee doc who actually first suspected it as I blamed my knees for the strange walk. He asked if I had problems with my neck...I said no. He was right. So I had pain and did do PT after a whiplash car accident and was on and off pain meds for years but for other stuff. I knew I had a very bad lumbar spine but not the cervical. And no one ever told me to watch for loss of function and numbness as a symptom of neck problem.

    On question number 2...chances are the thoracic surgery had nothing to do with your neck problem. This is something that comes with age. And if you had an abnormally narrow canal to start with...how would you have known? I didn't think I had an abnormally narrow canal until I found out my sister has one and so does my brother so I assume it's genetic. They also have similar problems to me but diagnosed much earlier as they didn't have the injuries I did and got to their docs as soon as I knew I had major spine problems and told them. We are getting used to these genetic things in my family as there seems to be so much of it. One gets sick and we all get it checked out and it's amazing how similar our health problems are even though or lives and careers are so different.

    So get an MRI and see where it takes you. As you said, it might just show you are fine to treat it with anti-inflammatories and PT. Or you might need surgery. Let us know one way or the other as the people here on this board have some great suggestions on surgeons and surgeries.

    glad you finally figured out my soda bottle metaphor....Jenny

     
    Old 08-26-2010, 12:58 PM   #6
    andyaa
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    Re: Just DX'd with Stenosis - a few ?'s is all

    Hi Phlox,

    I just had a question for you about another thread you posted 3 years ago but which is now closed. It was concerning weird symptoms relating to the gallbladder. I couldnt believe how similar the symptoms you listed where identical to mine. I also have this pain in my right upper quadrant which sometimes is really painful and sometimes its just bothersome as if there is some kind of pressure under my right ribs. I have the exact exact leg pain which you described in your post where the pain runs through my whole leg but mostly on the back of both my knees and my quadriceps. I wouldnt exactly say painful but bothersome. The pain is exactly like you stated " feels as if my bones are aching similar to when your about to get the flu". I cant distinguish if its a nerve pain or a muscle pain but it really is constant for about a year and bother some. I had blood test and ultrasound in the abdomen region but doctors found nothing. Well on the x-ray my doc also said that he sees constipation in part of my large intestine. Now the symptom that really caught my attention was when you said you get really fatigued and you feel as if you need to lie down. I get this feeling everyday since about a year ago when I first started having this pain. It seems its the only way to reduce the pain in my legs and when they hurt so bad I really need to take a nap. It is comforting to know that someone else out there is experiencing the same symptoms when the doctors keep telling you that they see nothing and that you are perfectly healthy. Im assuming that three years later after your post you have identified the problem and if you do know what caused all of these symptoms can you please let me know. I appreciate your help and im sorry for posting this on another one of your threads but I didnt know any other way to contact you. Thanks,
    Andy.

     
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