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    Old 01-12-2015, 05:57 PM   #1
    Davies80
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    New Diagnosis - long story short

    To make a long story short. I have been suffering with back pain on my left side ONLY in the thoracic and cervical area. Pain caused chronic headaches, wierd prickly sensations on left side of my face, some ocassional arm numbness, and eventually depression. Cervical and thoracic MRI showed DDD and Spondylosis and some slight disc bulging at C5-C6 and T-10-T-11 but they never found a specific nerve that was pinched on the scans to prove why I had the pain. I was told that I had the spine of a 50 year old and I was 30 at the time.

    I began to get trigger point injections in a doctors office close the hospital (was told in case a lung was punctured) and also had one steroid injection under sedation. They went through the front of my neck near the collar bone and through my back to get to the large nerve that runs over the shoulder blade. I was told they used a dye so they could see where the steroid was placed, the steroid itself and numbing medication . Would this be considered an epidural injection?!

    Fast forward to 6 months ago.... pain stayed constant as mentioned above but began experiencing increasingly painful lower back pain, siadic and leg pain on my left side only. Then 3 months ago the pain in the lumbar area has spread to both sides, hips and legs.

    My doctor ordered a Lumbar MRI and the results came back and said Nerve Root Clumping. I was immediately referred to Jean-Marc Voyadiez - Neurosurgeon out of Georgetown. In the meantime I sent my MRI's to the Laser Spine Institute.... I figured why not.

    I started to Google nerve root clumping and arachnoiditis is everywhere.

    I heard back from the Laser Spine Institute and they said they confirm the nerve root clumping and stated I have arachnoiditis. They said there are no surgical options they could perform and Andy surgery is high risk. Recommended I see the neurosurgeon on March 4th where I was originally referred and said I should probably expect that all the doctors can do is make me as comfortable as possible.

    My concern now is that the pain is increasing. For 3 months I have been experiencing vision disturbances to include blotchy vision or aura you would experience pre-migraine and today the vision seemed to worsen.

    I don't even know what I am asking the group but ANY thoughts on my post would be greatly appreciated....

     
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    Old 01-12-2015, 07:17 PM   #2
    gmak
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    Re: New Diagnosis - long story short

    Hi Davies, I have lumbosacral adhesive Arachnoiditis and I'm so sorry to hear that you have it too. Arachnoiditis is considered a rare disease or disorder but more and more... It seems like more people have it. People who have it have a history of an invasive spinal procedure such as a myelogram, back surgery, spinal fluid leak,epidural anesthesia like with childbirth, spinal taps, epidural steroid injections, or from infectious or chemical meningitis. Trigger point injections generally have numbing medicine and steroid in it but ive never had it done except in drs office. Some pain mgmt Drs do them under fluoroscopy. What spinal procedures have you had particularly lumbar since it was found on your lumbar MRI? Arachnoiditis first showed up in 1988 on my MRI but I wasn't told I had it until 2012 so now I get copies of alll my medical tests and procedures for my own personal records. If I were you I would want to know what kind of injection I had. Clumping of the lumbar spinal nerves/nerve roots/ cauda equina are the same thing, the lower half of spinal cord from L1 to S2 and when a foreign substance gets introduced inside the thecal sac, where spinal cord and spinal fluid are a inflammatory reaction can occur in some people and causes the lower spinal cord nerves to swell, pushing out the spinal fluid,hindering blood circulation, in that area and web like strands start to form pulling the nerves apart and clumping them together in small groupings and eventually adhering the nerves to the dura which is the covering of thecal sac. I was told by 3 NS's there is no treatment or surgery & to avoid all invasive spine procedures and sent me to pain mgmt dr to help control the pain. I have read one Arachnoiditis specialist in Alabama recommends if the arach process is in the early stages he can offer a treatment to try to lessen the damage. I hope that the NS can help you and get some pain relief for you soon. please let us know what he says! Welcome Davies'

    Last edited by gmak; 01-12-2015 at 07:35 PM.

     
    Old 01-13-2015, 02:55 AM   #3
    Davies80
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    Re: New Diagnosis - long story short

    Gmak thank you for your reply! I have had 0 spinal surgeries and only was diagnosed with arachnoiditis on January 6th! I have only had a week to comprehend the diagnosis. This is why I am so perplexed that I have the disease. I see all of the other posts and folks have been through multiple tramatic surgeries and have not.

    I just turned 35 and found out I was pregnant in June. I have no children and later miscarried at 8 weeks. I have been reeling with the loss off the baby and have now started to wonder if the condition may have had something to do with it.

    So many of you have suffered much longer than I have but for me to know for 5+ years thay something was really wrong, believe that one day they would find what it was, only to know that there Is really no way anyone can help me is just overwhelming.

    I have managed to keep my pain med to 4 10/325 hydrocodone a day and sometimes 5, but it's not cutting it anymore. I wake up in the middle of the night with burning and aching in my lower back and hips and shooting pain down my legs.

    I'm sure at some point after seeing the neurosurgeon I will get a bebetter grasp on what I'm up against. Just trying to see how others go on and learn to cope with the disease and live the best life possible.

    More than the pain knowing I will never have children is the worst.

    Thank you again for posting and sharing your story. You will be in my daily prayers gmak.

     
    Old 01-13-2015, 07:00 AM   #4
    teteri66
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    Re: New Diagnosis - long story short

    Welcome to the board. I would like to caution you to not jump to any conclusions until you have a diagnosis from a more reliable source. There is something about your story that does not add up to me.

    Sometimes symptoms are not all directly related even though they may appear that way.

    Have you been under the care of a spine specialist (a fellowship-trained orthopedic spine surgeon or a neurosurgeon whose practice is limited to the neck and back)?

    Are you seeing a neurologist?

    I don't mean to be too personal, but I am not sure why this would necessarily preclude you from having a baby in the future.

    Again, regarding the arachnoiditis, I would not give up hope. It is often misdiagnosed and very few doctors really "know" about it. Do not feel that no one can help you. Probably what you were told is that there is no cure at this time. There are no drugs that break up the clumps nor a surgery for that purpose. This is true, but there are ways to manage the condition just as there are with other incurable illnesses such as diabetes.

    It is always a shock when one gets news such as this. Take some time to mourn the life you had before and then get organized to figure out your plan of attack...which includes being sure you have an accurate diagnosis and figuring out what is causing the other symptoms like the headaches, aura, etc.

    I would just like to add that I had one lumbar surgery that was medically successful but did not resolve my pain. I then went through several years of going to a variety of specialists in an attempt to resolve my issues. During that time I was told by a very well-regarded spine surgeon that I had nerve clumping. As I continued to get opinions on that, there was major disagreement. I ended up going with a spine surgeon who shook his head in disgust while looking at my MRI, when I asked him about arachnoiditis. He later performed a three level lumbar fusion which found an issue that had not shown up on any of the imaging I had had, and was a surprise. Happily it resolved my issues....so I tend to try to tell people with undiagnosed issues to not give up. It can be a long road and can be very discouraging...but it can be worthwhile to not resign oneself. You may have arachnoiditis now, but it is not what was causing your original symptoms. The situation has just become more complex, and you still have the original problems to resolve.

    Last edited by teteri66; 01-13-2015 at 07:02 AM.

     
    Old 01-13-2015, 07:09 AM   #5
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    Re: New Diagnosis - long story short

    I should add that trigger point injections should not cause arachnoiditis. It would be very unusual to develop nerve clumping from a single epidural injection.

     
    Old 01-13-2015, 05:49 PM   #6
    gmak
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    Re: New Diagnosis - long story short

    Hi Davies, I agree with teteri that trigger point injections are given into a joint or about an inch below the skin and can't invade the spinal canal if given properly and from all I have read, studied and been told by drs is in order to have adhesive arachnoiditis there is first a history of an invasive spine procedure and some foreign substance got directly into the spinal fluid like radiological dye, injectable medicine, blood, or a microorganism. I did give birth after I had arach and have never heard that it can affect fertility or carrying a baby, did the dr tell you this? I am so sorry to hear of your loss recent loss and I hope that the neurosurgeon knows arach, because many don't, and will be able to give you an accurate diagnosis and all the factual information regarding its effects and a working treatment plan that relieves the pain. I am hoping and praying that there is a misdiagnosis and that they find something else is wrong and the cause of your pain is found and can be either surgically repaired or managed with medicine and PT and that you can have as many children as you want! I believe in getting second and even 3rd opinions after what happened to me with the secrecy of my arach diagnosis and after I was diagnosed and finally told I went to see 3 neurosurgeons that specialized in traumatic spine injuries and disorders and even then was told 3 different treatment options! A spinal cord stimulator, an intrathecal morphine pump and to stay with my current paint dr and regime. I will never know which caused arach in my case because I had 4 lumbar surgeries, myelogram, epidural injections and anesthesia. Please let us know what the NS says and we are here for you, anytime.

     
    Old 01-13-2015, 06:04 PM   #7
    gmak
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    Re: New Diagnosis - long story short

    [QUOTE=gmak;5339121]Hi Davies, I agree with teteri about trigger point injections. They are given into a joint or about an inch below the skin and can't invade the spinal canal if given properly and the steroid injection you had under sedation and with fluoroscopy sounds like it may have been an epidural steroid injection although I had a pm dr want to do a trigger point on my SI joints once under sedation like an epidural steroid injection. But, it was given in your shoulder/ cervical area right?From what I have read, studied and been told by drs and other arach patients is in order to have adhesive arachnoiditis there must first be a history of an invasive spine procedure where some foreign substance went directly into the spinal fluid like radiological dye, injectable medicine, blood, or a microorganism and started the process or some cases of epidural steroid injections have been said to be the cause of starting arach but the injection was inadvertently pushed into the spinal canal so the medicine was put intradural, into spinal fluid, instead of into the epidural space like was intended but the arach would be found,if caused,at the vertebral level where it was injected. I did conceive and give birth after I had arach and I've never heard anything regarding arachnoiditis affecting fertility or carrying a baby. What kind of dr told you this? I am so sorry to hear of your recent loss and I hope that the neurosurgeon knows arach, many don't, and will be able to give you an accurate diagnosis and all the factual information regarding effects and a working treatment plan that relieves the pain. I am hoping and praying that there is a misdiagnosis and that they find something else is wrong and the cause of your pain is found and can be either surgically repaired or managed with medicine and PT and that you can have as many children as you want! I believe in getting second and even 3rd opinions after what happened to me with the secrecy of my arach diagnosis and after I was diagnosed and finally told I went to see 3 neurosurgeons that specialized in traumatic spine injuries and disorders and even then was told 3 different treatment options! A spinal cord stimulator, an intrathecal morphine pump and to stay with my current pain dr and regime. I will never know which caused arach in my case because I had 4 lumbar surgeries, spinal fluid leaks, an old type pantopaque dye myelogram, epidural steroid injections and epidural anesthesia.
    I understand what you mean about how upsetting it is at first and at second and third actually to get arachnoiditis diagnosis and I am so glad that you found us here because I first came to healthboards immediately after being diagnosed and I am eternally grateful to all of the good members and especially teteri who provided me with reasoning and such care and good resources and information and to Moldova who has arach bc their caring almost singlehandedly carried me along plus the grace of God of course until I was settled enough and strong enough again to get back to just the business of living so please let us know what the NS says or just because you want to talk to someone who " gets" it and we are here for you, anytime.[/QUOTE]

    Last edited by gmak; 01-13-2015 at 07:13 PM.

     
    Old 01-13-2015, 06:44 PM   #8
    Davies80
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    Re: New Diagnosis - long story short

    Gmak I too am confused about my initial diagnosis. I did read in a few places which I will find again and reference that although spinal surgeries, injections of dye etx are the usually the ca use DDD and Spondylosis can also cause it.... so knowing I was diagnosed with both years ago I figured thay could be the only possible reason.

    I also researched to see if this was a hereditary disease. Therebl weren't many examples to support this theory but I found it strange that my mom had severe back pain years ago out of nowhere. After 2 months of being turned away by doctors she finally went to the ER. we pushed the docs for an MRI and they found a huge blood clot pushing on the same horsetail of nerves. They had to take her to surgery right away and told her she was days from permanent proalysis. I'm sure no coorelation to anything with me but just an interesting observation.

    As far as having children. I just turned 35 so am more high risk for miscarriage. Was pregnant at 19 and miscarried early on. Then again at age 34. Miscarried early on.... no one said children weren't possible I just know that the pain I am now is really bad and even if I could carry a baby full term how could I possibly handle the increased pain of pregnancy and are there any risks to further damaging thay horsetail of nerves area because of the extra weight and pressure on the nerves?!

    I also do not want to have a child if at some point in the next 3-5 years I get to the point with pain where I can't work or care for a child the way I would want or need to. My husband is AMAZING but I can't imagine the stress.

    So for those reasons I just don't think it will be in the cards for me. I say all this with the all of your comments in mind. It is absolutely possible that my neurosurgeon may say it something different and provide a procedure that will decrease pain. But these are the initial scary thoughts I have without having seen him yet....

    I have an appt. With my primary doctor tomorrow to discuss my pain levels and am going to suggest I also get a cervical MRI. I had one years ago that showed some bulging discs and I would like to have a full spinal scans when I see the neurosurgeon so maybe if he can't help with the nerve root clumping he can do something
    for the pain in the shoulder/neck area.

    Emak would you Google jean-Marc Voyadiez and look at his credentials and based on your experience let me know if he looks like a good neurosurgeon????

    BTW I'm typing on my phone so please excuse any grammatical errors!!!!

     
    Old 01-13-2015, 06:52 PM   #9
    Davies80
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    Re: New Diagnosis - long story short

    Gmak and Teri - even if at some point I find out that I have been misdiagnosed I cannot thank you enough for your posts. It IS AMAZING to have the opportunity to vent my worries and concerns with 2 caring people. U 2 are in my prayers

     
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    Old 01-14-2015, 11:33 AM   #10
    Davies80
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    Re: New Diagnosis - long story short

    gmak and Teri,

    Based on some of your advice I returned to my primary care physician today. First to request a cervical MRI so I can have the full compliment if scans when I see the neurosurgeon - which may help to diagnose shoulder blade and neck pain and second, I wanted to see the actual MRI results/report which you also suggested.

    So the thoracic looked fairly normal and noted that the spinal canal was capacious which I believe means large. This is different than what I was told before. It also says that my conus medullaris appears at T-12 which is still within normal range.

    However the findings for the Lumbar say: clumped appearance of nerve roots which may be visualized with sequela of PREVIOUS arachnoiditis!?!?!?!?!

    So as I read it they are saying that I already had arachnoiditis that has now progressed to actual clumping of the roots?!?!

    Any thoughts?!

     
    Old 01-14-2015, 02:08 PM   #11
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    Re: New Diagnosis - long story short

    Hi davies, when i read it it seems like its saying that at one time you had inflammation of arachnoid membrane type of arachnoiditis, not adhesive arach, and its left visual signs or sequela after it healed up but of course im not a dr. What did the pcp dr say about the report and films?

     
    Old 01-14-2015, 03:25 PM   #12
    Davies80
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    Re: New Diagnosis - long story short

    She said that the way she read it appeared that i already had arachnoiditis and the clumping was caused by this previous arachnoiditis. How would they know if I had previous problems with the arachnoid membranem?! Was never diagnosed with damage to the arachnoid. Amd it said sequela of arachnoiditis not that I had previous problems with arachnoid membrane itself....

    March 4th please get here so I can get an actual neurosurgeon oppinion instead of just my PCP.

    Thanks for your help

     
    Old 01-14-2015, 03:35 PM   #13
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    Re: New Diagnosis - long story short

    I know you want to know the truth so bad. There is arachnoiditis, just inflammation that people can have and not even know it and it can get better & may have something to do with the genetic thing you mentioned maybe a defect or something. Adhesive arach is the no cure,no fix kind that causes the spinal nerves to become damaged and adhered to dura and an MRI without contrast they cant see spinal nerves well enough at all bc i have aa and all they said on MRI without contrast report was my spinal nerves couldnt be visialized at all. And said they were amorphous and i had tethered cord. I think your pcp may be right. Sequela means other pathological signs of an illness or other things they saw that indicated previous arachnoiditis. The differences between the two arachnoiditis is dramatic. This could be great news but i would want an MRI with contrast too!

    Last edited by gmak; 01-14-2015 at 03:47 PM.

     
    Old 01-14-2015, 03:58 PM   #14
    Davies80
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    Re: New Diagnosis - long story short

    That would be great news. I should mentioned which I didn't say before (not intentially) that the report said "slight appearance of nerve root clumping. Maybe they will do an MRI with contrast to verify

     
    Old 01-15-2015, 08:03 AM   #15
    momzworkin
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    Re: New Diagnosis - long story short

    HI Davies,
    I don't have an actual diagnosis of AA yet, but have been told I have scar tissue from a previous back surgery wrapped around my nerve roots, which causes me all kinds of pain. I am in pain management and take several other prescription drugs to help out with pain-Cymblata, Lyrica (for nerve pain) and Ultram ER in conjunction with the Norco I take like you do-4 times a day. I just wanted to let you know that a good pain management doc can help you make your life much more livable.
    I looked up your doctor and his credentials are what one would hope to find in a neuro. He is fellowship trained and a spine specialist. His area of specialty and research are in the cervical spine, so hopefully he can help you with your problems there.

    Take Care!
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