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Anyone gone through Thoracic arachnoid cyst surgery?

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  • I have been diagnosed with a thoracic arachnoid cyst.

    I underwent a Thoracic Spinal Laminectomy , with fenestration of the cyst and a catheter (t-tube) placed at the lowest level of fenestration to continue to drain the cyst of the spinal fluid that can re-accumulate. That surgery was from T5-T10. I do have the catheter for life. They apparently get clogged easily from what I've been told. I immediately had WORSE pain from day 1 after surgery. The problem is complicated with multiple types of pain in multiple areas. I do have a bulging disc in my neck C5-C6 that is touching the cord and have not had surgery on that. I get severe neck issues ... restriction while turning my head, as well as pain and headaches.

    Trying to determine what back pain is coming from where has been questionable. The main pain I was having before surgery was a cramping type pain that would shoot from my thoracic spine under the shoulder blade area and would go into a full spasms if I took a fairly deep breath and turn left or right. I also had a dull aching pain (constant) from what feels like the exact same location of my spine where I ended up having the surgery. After surgery, that increased, with an added pain of Burning & Stinging. Which has been described as more of a nerve pain. I did develop a spinal headache for about 36 hours after surgery due to the suction that was placed on a drain extending from my back to drain, just temporarily during my recovery. I went from a 1-2 day expected stay at the hospital to 8 days. My spinal headache went away when they decided to take the suction off of the drain. Spinal headache ... now "that" is indescribable! This also took place while nausea occurred so of course, that added bonus of throwing up for nearly 2 days. That caused a lot of strain to my back and core ... just after surgery and I often wonder if that has any role in my worsened pain now.. I had this surgery 2 1/2 years ago and have been debilitated since ... in terms of barely even able to do housework and laundry and taking care of the very basic necessities for husband & the kids (3 young children). If I overdue anything, I am in severe pain. Nothing ever held me back before, in terms of physical strength or flexibility or movement. I have never been a great cardio/endurance person, but very strong. The strange thing is that I am still very strong even to this day, even without being able to exercise in anyway (yet!)

    5 years later, I am getting worse. I need a scan to see if it has grown. My spasms are becoming unbearable ... every time I take a breath it cramps up.... like a Charlie horse. There is a residual cyst, as they opted not to do a more invasive surgery. i am at the point
    I remain on Norco ... at the same dose as 5 years ago when I first started it. I am in significant pain and this is not controlling it but i'm scared to increase and become dependent. I can miss doses or even days, without any withdrawals ( I am on 325/10's) So, I have to figure out what to do ... completely uninsured at this time. I'm also on Baclofen (non-controlled for spinal injuries.. works as a muscle relaxer. It is not working ... I HAVE to switch and will call my doctor today .. the spasms are out of control. I'm on Lyrica for nerve pain and other general body pain that happens to me all day everyday. I feel like I've been working out and sore .. when there is no apparent reason for it.

    I'm interested in another surgery ... although terrified of getting another spinal headache from a spinal leak. I cannot continue to live with these symptoms .. there nag at me all day. I've been declined from disability and have to appeal. I lost my case with my private plan and am now in the appeal process for social security. It is very frustrating that they don't recognize my cyst as a disability. It is considered a spinal fluid disorder and there is debate on what
    Prior to surgery I had insomnia, now due to meds, EVEN in worse pain, can hardly stay awake.

    Hope to hear about your situation. Thoracic arachnoid cysts are not that common and I'd LOVE to know what your symptoms are.
    Andrea Cook
  • http://www.spine-health.com/forum/pain/chronic-pain/chronic-pain-treatment-step-step
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  • JenakayJJenakay Posts: 1
    edited 06/25/2014 - 3:47 AM
    11cm Arachnoid cyst in the spinal canal posteriorly extending from the T2-3 level inferiorly

    anyone know what the recovery time is if I have this removed
  • Welcome to Spine-Health. I am not sure if the original poster is still here or not.
    The best person to discuss your concerns with regarding the surgery is your surgeon. He can give you a time frame for how long it may take but you have to understand that it is a general time frame, not one that necessarily may be longer or shorter, depending on the extensiveness of the surgery and the condition you are having surgery for.

    http://www.spine-health.com/forum/announcements/spine-health-announcements/welcome-message-resource
    http://www.spine-health.com/forum/forum-faq

    http://www.spine-health.com/treatment/back-surgery/ask-doctor
    http://www.spine-health.com/forum/treatment/back-surgery-and-neck-surgery
    http://www.spine-health.com/blog/sleep-and-insomnia/38-questions-ask-your-surgeon-having-back-surgery
    http://www.spine-health.com/treatment/back-surgery/preparing-meet-a-spine-surgeon-or-spine-specialist
  • Maybe you still come here I was wondering if you had your surgery. I am having
    a lot of pain from a lumbar arachnoid cyst. Like to know what you did, if anything?
    This is what Im trying to search now and laminectomies seem to look like bad news
    for the pain side of it.
    Cynthiae
  • Hello everyone,

    I was reading your stories and I think I can help with any questions you may have. I recently had a cyst removed from my spine that extended from T1-T12 in March 2014(6 Months ago and a bit) . The surgery was a very dangerous one, but I had no other options available. Either I had the surgery to remove the cyst or within 5 years I would be in a wheel chair; so I made the right choice for me. PM as needed
  • I had spinal surgery to remove a arachnoid cyst at t-7 to t-9, in 2007, but before I found out that it was a cyst I suffered back pain for around 10 years, I use to have pain in the centre of my back that would run under my shoulder blade and round the left side of my ribs. And any sudden movement would stop me with chronic pain till it eased off, I was medicated with with strong pain relief but the pain would over ride the medication, I stared to lose function of my lower body parts started with pins and needles to numbness. Then I was paralysed from the waist down, I had a Mri scan that showed that I had a arachnoid cyst and that it had crushed my spinal cord and had emergency spinal operation, i was told I would never walk again, but 3 months after the operation I started to get feeling back to my legs then taken another 3 months of hard work to learn how to walk and build muscle strength, it was an incomplete operation as the cyst had fused to the cord, but the the pain had reduced a lot and went back to work when was fit enough.

    But now 9years later I'm now having the same back pain before I was diagnosed , pain in centre of my operation area and shooting round my ribs, im just waiting to get an appointment with the surgeon who did my operation.
  • SavageSavage United StatesPosts: 5,960
    Welcome to Spine-Health
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  • lachance90lachance90 MissouriPosts: 37
    I have a arachnoid cyst from T 2 to t 11 there is chf fluid I think it's called and it is pushing on my spine I've been suffering for 8 years now and have been teeing to figure out what has been wrong with my back other than scoliosis degenerative disc disease and a bulging disc with a tear in it. Also arthritis in my back I have problems with my legs my hips my upper back and it us hard to breathe so I know what your going through please Message me with updates I'm really curious and am in the dark on what to do and what starts with something like this all I can do right now is just wait for some one to tell me I can see them to see another Dr to tell me what's going to happen I found this out a week ago
  • I posted above years ago and wanted to update for those with thoracic arachnoid cysts since they aren't all that common. After having a laminectomy - laminating and fenestrariom with catheter placed in my spinal canal in 2008 .... With absolutely no change to my back pain and most annoying wrap around spasms that have continued and maybe even a bit worse  ... I have yet to resolve these issues. I have pursued answers like it is a full time job from having multiple epidurals, trigger point injections, massage, physical therapy multiple times and by seeing my neurosurgeon, reumatologist, pain management clinic, etc. honestly - nothing has improved at all. Yes, my scans show a successful surgery with no cord compression and nothing to suggest I should have these continues symptoms. 

    I I think it is very important to remember that although we have these complicated cysts in the lining of our spinal cords ... That you'd think are the cause of our pain ... There can definitely be multiple things going on besides the cyst. None of my doctors have suggested anything and there are some basic things hat can cause the same type of pain. After researching my symptoms for years and tying it to the cyst, I recently became aware of a common problem that nobody ever even suggested could be the issue. The facet joints! These cause similar pain and can certainly cause spasms. The facet joints are found in all spinal levels and have symptoms that include spasm, stiffness, pain. Often it is more painful to bend forward then backward, the facet joints can lock up ... Leaving the feeling of them needing  To be adjusted or popped and that can provide some relief. These are my symptoms. The spasms is by far the most annoying and goes under the shoulder blades and around somewhat to my sides (ribs). It affects my breathing in a very bad way .. If I take a breath it has to be shallow to avoid the inevitable Charlie horse in my back/ribs. i just had X-rays spa uncalled to look at facet joints and pray it is this simple! There are a couple basic procedures that could be life changing, if they are the cause. 
    My  main point is that it was assumed that my cyst was the likely cause and sometimes our doctors forget there could be multiple issues causing pain. Don't forget to consider other possibilities. With my almost annual scans appearing stable and surgery never having made a difference .. Chances are I'm going to find a different cause. I wish everyone the best of luck .. Do your research. Doctors don't get a lot of time with their patients anymore and we have to be our own best advocates. 
    Andrea Cook
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