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Thread: Arachnoiditis with CES symptoms (sorry for the long post)

  1. #1

    Arachnoiditis with CES symptoms (sorry for the long post)

    I am new to this forum...so hi guys. I am a 38 year old mother of 3 teenagers, married and live in Australia. I wasn't sure where to post this thread, so here it is.

    To make my story shortish...I injured my back at work in Jan 2004. For 2 years I was shoved around from doctor to specialist to another specialist etc. I have heard it all...go home and go to the gym and it will resolve itself...you need a fusion or disc replacement to get pain relief...epidural cortisone injections will cure you etc etc.

    I had epidural cortisone injections, discograms (with contrast), myelograms (with Isovue contrast) and eventually a double Laminectomy at L4/L5 and L5/S1 in Feb 2006. I had started having bladder problems with extreme urgency...getting horrible UTI's and simply running to the toilet all day and night and that was the reason for the surgery (that is what my Orthopaedic surgeon said).

    So...I had my surgery. I woke up from the anaesthetics and needed to urinate preety bad. I got myself to the toilet, but couldn't initiate urination. They had to put a catheter in (which I told them to take out the day after). I started being able to (with great difficulty) to urinate, but it was trickling out. It would take ages to initiate urination and when it finally came out...I could feel I was doing it. I also had no control of my bowel movements and would be standing in the shower with it running out (sorry for the graphic mental picture here).

    I went home and still had problems with urination. I couldn't feel my right buttocks, my genital area and top of my right thigh. I was suffering terribly from myoclonic jerks in all of my body (they settled down a bit but I still have them to this day). The surgeon said the numbness was normal, so I continued trying to get better. 3 months post surgery I went for a follow-up with the Orthopaedic surgeon. I told her about the terrible vibration/shaking sensation I was getting in my legs and feet...that it would feel like I had wasps stinging me and my back, legs, feet and buttocks felt like they were on fire. She ordered a new MRI and told me everything looked good (yeah right!).

    I had to move to a different town and that meant getting new doctors. I saw a new Neurologist (medico-legal called in by workers comp insurance company) and his exact words were "It is impossible for you to have the CES symptoms with an L4-S1 injury"...he was also so kind to tell me it was all in my head and my bladder/bowel/sexual dysfunction problems were just normal woman problems (he at this point viewed the MRI taken 3 months post surgery). I saw other specialists (some were medico-legal doctor). Eventually I saw my current Pain Management doctor. He is by profession an Anaesthetist and have been a pain management doctor for a long time and deal with a lot of people with pain like mine and see a lot of MRI's every day from people with pain like mine. I told him my story and he asked to see the MRI taken 3 months post surgery (that was the one my surgeon told me looked good and the one the Neurologist had looked at but couldn't find anything wrong with me). He looked at it for about 30 seconds...turned to me and said the dreaded words "You have Arachnoiditis. The nerve damage is evident from about L2/L3 and down. You have typical "empty thecal sac" syndrome and from what I can see...you are pretty much stuffed". Needless to say...I was devastated, because I knew exactly what Arachnoiditis was. I...of course...broke down, because even though he had said the dreaded A word to me...I think I knew all along I had it, but nobody wanted to listen to me and furthermore...refused to put the A word in my files (because in my case it is medically acquired). Somewhere along the line I have acquired this condition. It could be the cortisone that was injected into my spinal column...the contrast used during the discogram...the Isovue contrast used during the Myelogram...from the surgery or a combanition of all of them. My nerves from L2/L3 and down are sticking together like they were glued and are encased with scar tissue and inflamed. On the MRI it is quite clear (even my 13 year old would have been able to see it if he knew what to look for) that my spinal nerves are stuck to the the edge of my spinal column and that is why it is called "empty thecal sac" syndrome. It is extremely painful and will more than likely get worse. My nerves are damaged beyond repair and at this point in my life I am dealing with:

    • weakness in my legs and feet
    • numbness in saddle area
    • constant massive pain in my back, legs, feet, genital area, buttocks
    • I have no reflex in my right ankle and diminished reflex in left ankle
    • migraines
    • TMJ
    • bladder problems
    • bowel problems
    • sexual dysfunction
    • vibrating/shaking of my legs
    • sleep problems
    • sensation of walking on glass
    • myoclonic jerks
    • and heaps more
    My anger comes from the fact that NOBODY told me about the risks of getting Arachnoiditis when having cortisone and contrast injected into my spine. My surgeon didn't tell me either about the risks before my surgery, so I at least could have made an informed decision based on facts. My Pain Management doctor says I will more than likely end up with a Spinal Cord Stimulator...an intrathecal morphine pump and maybe even wheelchair

    Will there ever be a cure for Cauda Equina Syndrome? Will there ever be a way where the spinal nerves can be repaired when you have Arachnoiditis or Adhesive Arachnoiditis? Will the medical profession ever fess up to the fact that they are giving this condition to people? Will there ever be more research into Cauda Equina Syndrome and Arachnoiditis?

    "He's your friend, partner, defender, your dog...a true Rottweiler. You are his life, his love & leader. He will be yours, faithful, protective & true to the last beat of his heart. You owe it to him to be worthy of such devotion"

  2. #2
    Dorte, I am so sorry to hear your story. Arachnoiditis is a very common problem and can arise from many causes. I don't think that it is from the cortizone injection which should reduce inflammation. However, you have many potential causes, including the trauma, the surgery, and possibly the contrast injection. Your injury is the most likely original cause of arachnoiditis. If there had been blood leakage in and around the injury site from the original injury, the hemorrhage itself can cause significant arachnoiditis with subsequent adhesions. The surgery may have disturbed or aggravated the inflammation. Injection of contrast may have contributed as well. This was particularly true when oil based contrast dyes were used (Warnke & Mourgela, 2007), such as pantopaque. Of course, if you had an infection that resulted in meningitis, that could have contributed. Finally, if you have a tendency for auto-inflammatory or auto-immune disorders, you are much more likely to get arachnoiditis. For example, I notice that you listed TMJ as part of the issues that you have to deal with.

    If the tethering is localized, surgery can be carried out but if the adhesion is widespread and involves much of the cauda equina (for example), laminectomy and untethering surgery may not be feasible. However, recent developments with endoscopic subarachnoid therapies are often effective (Warnke, 2007). Please note that adhesive arachnoiditis may be a precursor to the development of syringomyelia.

    Wise.

    References Cited
    • Warnke JP and Mourgela S (2007). [Adhesive lumbar arachnoiditis : Endoscopic subarachnoepidurostomy as a new treatment.]. Nervenarzt. Abteilung fur Neurochirurgie, Paracelsus-Klinik, Werdauerstrasse 68, 08008, Zwickau, Deutschland, dr.jan-peter.warnke@pk-mx.de. BACKGROUND: Adhesive lumbar arachnoiditis is essentially an unknown, unreported, and unrecognised disease. It was better known at a time when oil-based dye was used for myelography. The factors causing this pathogenesis remain unknown. In addition, diagnosis is hard to achieve and frequently attained only by an exclusion process. Only in severe cases, using high-resolution MRI, is evidence for the diagnosis obtainable. METHOD/PATIENTS: Modern neuroendoscopic techniques allow diagnosis at a reasonable risk (comparable with lumbar tap) and enable us substantially to treat the pain. Taken together, this means a radical new method of treatment for adhesive arachnoiditis. The treatment of a 23-patient research group suffering from adhesive lumbar arachnoiditis is monitored and described. RESULTS: Various endoscopic manoeuvres were carried out. Endoscopic reduction of adhesions and internal shunting for CSF flow between subarachnoidal and epidural space improved both the biomechanical abilities of rootlets and restoration of blocked CSF pathways. Its main result is the significant reduction of long-term pain registered by a visual analogue pain scale. No bad side effect other than temporary headache was found. No CSF leak syndrome was observed. DISCUSSION: The success of the method was directly influenced by the interventional procedure on the disturbed CSF circulation and its partial restoration (subarachnoepidurostomy). In cases of severe lumbar adhesive arachnoiditis, it was found very beneficial to implant special gravity-controlled valve systems for subarachnoid-peritoneal shunts. CONCLUSION: Adhesive lumbar arachnoiditis is no longer a devastating diagnosis. Due to a novel endoscopic treatment of the local CSF disturbances that restores physiologic pathways, the chance exists for long-lasting improvement of the clinical condition.
    • Warnke JP and Mourgela S (2007). Endoscopic treatment of lumbar arachnoiditis. Minim Invasive Neurosurg. 50: 1-6. Department of Neurosurgery, Paracelsus Hospital, Zwickau, Germany. dr.jan-peter.warnke@pk-mx.de. OBJECTIVE: The diagnosis of lumbar arachnoiditis remains complex and often inconclusive. Using the technique of lumbar subarachnoidal endoscopy (thecaloscopy), the pathology can be identified and the patient treated with long-term effects on the symptoms. METHOD: Endoscopic operations were performed on 23 patients suffering from varying symptoms with an enlarged lumbar subarachnoidal space. Having confirmed the diagnosis of lumbar arachnoiditis, a number of endoscopic operations ranging from adhesiolysis to subarachno-epidurostomy were carried out. RESULTS: Radicular symptoms in lumbar arachnoiditis were successfully relieved by various endoscopic dissection techniques, such as restoration of the improved CSF flow by subarachno-epidurostomy along the rootlet. This has been identified as one of the causal factors of the clinical symptoms. In cases where lumbar pain persists in spite of a previous thecaloscopy, further treatment with a lumboperitoneal shunt device has proved most successful.
    • Skalpe IO (1976). Adhesive arachnoiditis following lumbar radiculography with water-soluble contrast agents. A clinical report with special reference to metrizamide. Radiology. 121: 647-51. The frequency of adhesive arachnoiditis following lumbar radiculography with methiodal sodium (95 patients), methylglucamine iocarmate (20 examinations in 18 patients), and metrizamide (77 examinations in 73 patients) was found to be 29% in patients who were not operated on between methiodal studies and 48% in those who were operated on. With both methylglucamine iocarmate and metrizamide the frequency was very low. No changes indicating adhesive arachnoiditis were seen with these media in patients who were not operated on between radiographic examinations.
    • Navani A, Dominguez CL, Hald JK and Fishman SM (2006). An injection from the past: fluoroscopic evidence of remote injections of radiopaque substances. Reg Anesth Pain Med. 31: 82-5. Division of Pain Medicine, Department of Anesthesiology, Stanford University School of Medicine, Stanford, CA 94539, USA. navani@yahoo.com. OBJECTIVE: Although uncommon, residual effects from contrast agents used more than 2 decades ago are possible. This case report is to alert clinicians to the implications of residual oil-based ionic contrast agents in the intrathecal space. CASE REPORT: A 70-year-old female with evidence of degenerative disc disease underwent a series of lumbar epidural steroid injections. Fluoroscopy during the procedure revealed diffuse residual intrathecal iophendylate (Pantopaque) dye. We were able to demonstrate unrestricted epidural spread of 1 mL iohexol (Omnipaque 180) alongside the preexisting dye. CONCLUSIONS: The goal of this case report is to highlight the potential of residual myelographic dye to complicate interventional procedures. Such residual dye can increase the level of difficulty in performing interventional pain treatments and perhaps the rate of complications associated with epidural injections, such as dural puncture. The presence of large amounts of residual oil-based intrathecal dye can lead to erroneous interpretations of the dye patterns as intraspinal lipoma or hemorrhage. As a consequence, the patient can be submitted to unnecessary diagnostic and therapeutic interventions. In addition, concerns of worsening oil-based dye-induced arachnoiditis with the use of epidural steroid injections can complicate the treatment of patients with back pain.

  3. #3
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    Dear Dorte, it is recommandble! to visit and cosult Dr.Jan-Peter
    Warnke, Neurosurgeon Paracelsus Hospital Zwickau,Germany
    Only undergoing Endoscopic surgery from Lumb.Arachnoiditis by myself was very helpfull!He is the only who can do it in this moment in the world. Kindly Regards Jack Netherlands

  4. #4
    Find us on Facebook using inclined bed therapy as a search term.

  5. #5
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    Dear Dorte,

    I have had neurosurgery from Prof. Dr .Warnke in september
    2008, half an year ago, on L5- S1 (sacral region) .
    The pain has reduced to the half and the quality of live is much more better
    with also more perspective to the future.
    Now I can drive car, during 5-years it was not possible my lovable wife has
    to do it.

    I have no shunts but its maybe necessary in the future when the pain get
    worse.
    I am beware of your enormous suffering and hope you get rid also of your
    constant pain and do not fear the surgery, its absolutly not necessary at
    all!
    This modern neuroendoscopic technique allow diagnosis at a reasonable risk,
    comparable with lumbar tap and enable the
    neurochirurgeon substantially to treat the pain. It's the only causale (most
    natural) therapy on this moment and the only specialist who has managed many
    oprations .
    The risk is very very low. You can read it in his summary from this link:
    http://www.springerlink.com/content/c045707578663053/

    He and his team are very kindly loving people.
    I hope you will be successful.
    If you have still other questions please be free to mail me directly.

    Be blessed

    Jack




    Summary
    Background Adhesive lumbar arachnoiditis is essentially an unknown,
    unreported, and unrecognised disease. It was better known at a time when
    oil-based dye was used for myelography. The factors causing this
    pathogenesis remain unknown. In addition, diagnosis is hard to achieve and
    frequently attained only by an exclusion process. Only in severe cases,
    using high-resolution MRI, is evidence for the diagnosis obtainable.
    Method/Patients Modern neuroendoscopic techniques allow diagnosis at a
    reasonable risk (comparable with lumbar tap) and enable us substantially to
    treat the pain. Taken together, this means a radical new method of treatment
    for adhesive arachnoiditis. The treatment of a 23-patient research group
    suffering from adhesive lumbar arachnoiditis is monitored and described.
    Results Various endoscopic manoeuvres were carried out. Endoscopic
    reduction of adhesions and internal shunting for CSF flow between
    subarachnoidal and epidural space improved both the biomechanical abilities
    of rootlets and restoration of blocked CSF pathways. Its main result is the
    significant reduction of long-term pain registered by a visual analogue pain
    scale. No bad side effect other than temporary headache was found. No CSF
    leak syndrome was observed.
    Discussion The success of the method was directly influenced by the
    interventional procedure on the disturbed CSF circulation and its partial
    restoration (subarachnoepidurostomy). In cases of severe lumbar adhesive
    arachnoiditis, it was found very beneficial to implant special
    gravity-controlled valve systems for subarachnoid-peritoneal shunts.
    Conclusion Adhesive lumbar arachnoiditis is no longer a devastating
    diagnosis. Due to a novel endoscopic treatment of the local CSF disturbances
    that restores physiologic pathways, the chance exists for long-lasting
    improvement of the clinical condition.
    Keywords Endoscopy - Spinal subarachnoidal space -
    Subarachnoepidurostomy - Thecaloscopy


    --------------------------------------------------------------------------------


    J.-P. Warnke
    Email: dr.jan-peter.warnke@pk-mx.de
    Last edited by Wise Young; 04-06-2011 at 06:03 AM. Reason: Private data removed at the request of Jack P.

  6. #6
    Thank you Jack. That was an excellent summary. I agree that endoscopic methods have now allowed non-invasive diagnoses and surgical decompression/untethering is often helpful, if done by an experienced neurosurgeon. Wise.

  7. #7
    Hi!

    by chance I found this forum and the thread about the special surgery in Zwickau (Dr. Warnke) I visited Dr. Warnke 1 week ago and now I have the diagnosis *arachnoiditis* level 2 (after a needless spinal tab........)!!! By chance I read about the new procedure. Now I have to decide and I'm a little afraid. Jack you wrote that Dr. Warnke has experience with 70 patients but it is so difficult to found some more sentiments from other patients. Do you have much more Informations from other people after the surgery????

    Thank you
    by


    Here in Germany there is no acczeptance for arachnoiditis. I visited 5 neurologists and they all told me I have psychosomatic illness...................

  8. #8
    Quote Originally Posted by larissa View Post
    Hi!

    by chance I found this forum and the thread about the special surgery in Zwickau (Dr. Warnke) I visited Dr. Warnke 1 week ago and now I have the diagnosis *arachnoiditis* level 2 (after a needless spinal tab........)!!! By chance I read about the new procedure. Now I have to decide and I'm a little afraid. Jack you wrote that Dr. Warnke has experience with 70 patients but it is so difficult to found some more sentiments from other patients. Do you have much more Informations from other people after the surgery????

    Thank you
    by


    Here in Germany there is no acczeptance for arachnoiditis. I visited 5 neurologists and they all told me I have psychosomatic illness...................
    Hello. I have had three lumbar surgeries and two cervical surgeries. First was a Lam L5/S1. A year later I had double-fusion L5/S1 and L4/5. Year later double fusion C4/5 C5/7 (completely unneccesary I would learn years later. About a year later hardware removal and refuse lumbar. Few months later surgical removal of part of two facets in cervical.

    A month after the double fusion cervical ended up in ER with massive headache. It's been nine years of continued struggle with massive headaches.

    Back in Jan '09 had a spinal tap with contrast. Water based, don't have the name infront of me, dye: Something 300. Doctor was seeking to see if I had arachnoiditis. The report reads no clumping of nerve roots in lumbar.

    Six weeks later I awake with my legs covered with these tiny, yet horrible, electrical haywire currents. Now, I suffered with terrible stinging, sweeting, and my back is in terrible pain. The electrical pain I had in past down legs is back and so much worse, as if I just injured myself.

    I all ready had bladder dysfunction, though work comp won't accept the claim. Nine years of bladder problems. My feet burn like they are sunburned. The bottom of my heels have become hard with callous and are cracked.

    At some point the tingling spread to my arms and body. Had pins in needles in the past, but not this stinging sensation. I have struggled with the sudden onset of paralysis of legs/feet and arms/hands--worse of it now in legs and feet. It is as if blood flow not reaching there. Does that make any sense? Is that happening?

    Two nights ago I'm struck with that terrible burning in my right knee. The next day my entire necks is struck for a short period with the burning. Now my private area is suffering the burning. I all ready had electrical shocks there, but became so much worse over last few months.

    Folks, and/or doc, my thinking presently is that I didn't have arach before spinal tap (then again, I've been told one doesn't have to have clumping nerve in early stages of arachnoiditis) but now I do because of it. I did a search for the dye and learned that it is known to cause arach.

    I have been suffering pain now for 12 years. I can't believe what has happened to me over the last few months. My lumbar was not that bad for a few years after last lumbar surgery.

    So tell me (poster who I quoted) how long after the spinal tap did the symptoms begin? And to the doc whose name I don't have infront of me, do you have any thoughts?

    Oh, I suffer terrible jerks of legs and arms. Sometimes half my body is lifted up off bed and my head is throw to one side as the body is twisted to another.

    Has anyone heard of this: Your asleep, or in that stage before ya fall into deep sleep and you have a vision in your mind like your arm throwing a punch and your arm actually does. It has with my legs too.

    Hope to hear from someone soon.

    Is it wrong to state where you live in hopes of someone have a recommendation as where to go for help?

    Isovue 300 dye used during the Myelogram
    Last edited by SeekingInfo; 07-31-2009 at 03:44 AM. Reason: Found the name of the dye reading another post above

  9. #9
    I, too, am considering the thecaloscopy procedure. I had an L3-L4 myxopapillary ependymoma resected in 2004. The tumor was quite large but due to the great skill of the surgeon I suffered absolutely no deflicts. Unfortunately, five days post-op I suffered two dural tears which created a pseudomeningocele repaired six months later. Post-repair (which involved another hemi-laminectomy for exposure) I started to suffer great pain when sitting, and only when sitting.

    While I had assumed that this pain was from scar tissue formation, Dr. Warnke's publications make me suspect part of it may actually be from increased CSF pressure causing problems with venous drainage. This makes some sense as my pain began to occur only once the dural tears were closed, and sitting presumably creates the most CSF pressure. On the other hand, the timing is also compatible with arachnoiditis from the resection six months prior.

    Unfortunately, while I can sit more comfortably now, a parade of new and varied symptoms started almost immediately and hasn't stopped since. Often the symptoms will resolve themselves only to have new and different ones take their place. I suspect lasting damage is being done and the "resolution" of symptoms is merely neuroplasticity in action.

    Lately it's been pins and needles whenever I sit, which makes it hard to concentrate at work. My impression is that pregabalin/gabapentin do not address problems with nerve attenuation, only pain. In addition, I suffer some unexplained upper body symptoms.

    While these symptoms have been mild, lately they have begun to manifest themselves in the bladder and penis, which is a cause of great concern. If the risk were low, I'd rather operate now than suffer irreversible damage slowly over a period of time (the "boiling frog" problem). While the mechanism of pain may be increased CSF pressure, I suspect the mechanism of damage may actually be arachnoid tethering, as I suffer predomiately on the left side of my body, and only the left side nerves are dorsally tethered at the site of the CSF leak:


    You'll have to take my word on this; it is obvious by tracing the axial views that all of these nerves terminate on the left side, but it requires too many serial images to post here. I believe the strong division of left and right nerve roots was an artifact of the tumor, which arose from the filum terminale.

    Incidentally, the same trace method reveals that right side nerves are severely tethered ventrally, presumably from tumor compression:


    Unfortunately I do not suffer from the classic symptoms of tethered cord, leading me to question this diagnosis. Either way, an experimental lysis of adhesions, epidurostomy, and detethering might prove helpful, but I don't really understand why the endoscopic technique would prevent new scar tissue from accumulating. Surely the insult is less, but not that much less--the lysis must still be performed by dissection. Some of Dr. Warnke's extreme cases have reported no benefit--or worse, experience transitory benefit only to suffer even worse rescarring. Perhaps Dr. Warnke administers immunosuppressive drugs, or perhaps the procedure is performed under hypothermia? Is Adcon L still in use in Europe? Are there any drugs which may reduce rescarring?
    Last edited by soze; 02-09-2010 at 10:25 PM. Reason: updated images

  10. #10

    Abnormal SSEP due to arachnoiditis or tethering?

    I should also note that my SSEP test results show some degradation, though also some improvement, from 2005 to the present, as noted below. In particular, the left S1 worsening corresponds well to my subjective experience. Could a continuous low grade inflammatory process due to arachnoiditis, or tethering, explain this phenomenon?

    Results:

    L3 Dermatome: Latency and amplitude is normal bilaterally. Compared to the prior study of 10-18-05, there is significant improvement on today's study bilaterally. The left response had been absent and it is now normal.

    L4 Dermatome: Left latency is mildly prolonged. Right latency is normal. Left amplitude is normal. Right amplitude at N1-P1 is 2 sd smaller than normal mean. Findings are similar to those of the 2005 study.

    L5 Dermatome: Latencies bilaterally are 3 sd longer than normal mean bilaterally. Amplitudes are normal bilateraly. Latencies are considerably longer than those seen on the prior study of 2005, suggesting more impairment.

    S1 Dermatome: Left sided response is poorly defined; if present latencies may be at the upper limit of normal. Right latency is normal. Amplitudes are at the lower limits of normal bilaterally. On the left, there appears to be some worsening, but the right results are roughly comparable to those seen in 2005.

    Pudendal SEP: Latency is at the upper limit of normal.

    Conclusions:
    Abnormal Study

    On today's study, there are abnormalities seen at the L5 level bilaterally, which are worse than those seen on the prior study of 10-18-05. The left S1 response may be worse as well.

    In contrast, conduction through L3 has improved compared to the prior study.

    Findings at the left and right L4, and right S1 are normal.

    The pudendal response, which was not done in 2005, is normal on today's exam.

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