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Please respond with your story of Epidural Lipomatosis

bonniebbbonnieb Posts: 26
edited 06/11/2012 - 7:49 AM in Spinal Stenosis
Having Spinal Stenosis,Degenerative Disk Disease,Spondylosis,Bulging disks, Epidural Lipomatosis,and a host of other pain problems...my heaviest concern is the SEL (Spinal Epidural Lipomatosis)and previous Cervical Discectomy 2 level w/fusion, now creating more DDD, I want to 'try' to find out the results of anyone having surgery for the SEL (Spinal Epidural Lipomatosis)as it is very,very rare especially in women...which I am one! I cannot get any consistancy of diagnosis,and/or what to do regarding having this problem..just Physical Therapy, which does not get rid of the problem, or more steroid injections,what if I read from the Duke Website,Harvard,Mayo,and all the other very renowned professional hospital/university sites,the it 'might'be possible that 'steroids' are a possible cause, and obesity being another one. But,since no clinical studies are available or limited at the least,it seems that all spine specialist either shy away from it or just plainly don't want to confront the problem at all. Since I am a 72 yr. old woman, youngish and in other good health,I think I give a false impression of being 'okay'..though I am not,I am in pain 24/7,not just from the SEL but from numerous other diagnosed spinal problems...so what is the answer...more hydrocodone..I try to limit 3X a day, 500mg. though I can take up to 3000mg. I am trying to limit that med. Thanks for any info.
BonnieB
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Comments

  • Hi bonnieb,

    I am interested in how you have gotten on with SEL, I've just been dx with this along with several other spinal conditions, DDD, OA, TC, SS, SEL, to name a few some I've not been able to get a diagnosis yet.

    My SEL came on after a particularly bad side effect to panafcotelone and a heap of other conditions mostly digestive and autoimmune problems like CD, GERD and so on.

    So please let me know how you have gotten on

    I'm a 52 yr old grannie from west Australia , in a w'chair all the time now days my legs will no longer support me.

    Look forward to hearing from you
    Adrienne
  • Bonnie,

    As of my last MRI, I developed Epidural Lipomastosis somehow - I am idiopathic. No Cushings, not overweight, no long term steroids, no diabetes, etc.

    The big thing is you have to keep your eye on any development of Cauda Equina! I also have epidural fat causing stenosis at the L3/4 level (it's a separate piece from the L5/S1 SEL).

    I was told if I become symptomatic (which I am), a Laminectomy would be most likely offered. By symptomatic for me, back pain, butt pain, and my three middle toes (both feet), and the center of the tops and bottoms of my feet go numb. Have some bowel and bladder issues, but no Cauda discussed yet.

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Hi Adrienne, I spent some very happy years in Sydney, Aus. Before all of my spinal problems! My husband was with a Geophysical company doing offshore drilling for oil. My daughters were in elementary school, they are now (all 3) in their 50's, so you can figure how long it has been since we left there! I loved it! But regarding my SEL,I have had no further problems from it (to my knowledge) though I still have lumbar pain and also upper back (thoracic) pain. I've gone to 7 doctors, othopedic and neurosurgeons, many injections, just recently (3)injections in my Facet Joints, upper back.We went to Europe on a cruise (our first)my husband is 81 and I am 73..(yes! my photo taken when I was very young..I should change it..but I like the youthful look. haha..it definitely has changed!! I was told to go back to the orthopedic surgeon who did my cervical discectomy w/fusion, for a laminectomy on my lower back (where the SEL is) and
    he could remove the SEL..but I've read too many horror stories about the surgery regarding the SEL, with the surgery itself being successful, but the mortality rate is high. So, I keep searching and I guess as long as it doesn't render me 'incontinent' that seems to be the criteria they base just how serious it is. I am still trying to lose weight as all the doctors say that is the way to go, but not sure losing weight is successful, though that is what they all say! Easier said than done! Take care, and enjoy those grand-babies, that is what we do! I have a darling great-grandson that spends a day with us every week. He is precious! So fun! We have 10 grandchildren too! I would love to take a trip to Australia, we have several friends there after all these years!
    BonnieB
    BonnieB
  • Hello,
    My name is Jerry and I was diagnosed with Epidural Lipomatosis a few years ago after many years of multiple diagnosis and workups.

    I am writing this to seek any information on your symptoms. While I have been told I have EL along my spinal cord, I don't know what normal symptoms are.

    I have had left arm pain consistently for years. Over the last two years it has gotten progressively worse. At times it seems to flare up. I even have episodes where I get pain, not as severe, in other parts of my body. My left arm is progressively getting weaker and I am getting more scared that in the years to come I won't be able to use my left arm.

    I am currently undergoing trigger point injection treatments to see if this has any impact.

    Thank you for any insights.
  • Howdy and Welcome to Spine Health!! What levels are they saying you have it? I have it at L5/S1, and it is creeping up on L4. For me, most of it is possible bowel and bladder issues (intermittent), pain and numbness on the tops and bottoms of my feet, and when standing or sitting my 3 middle toes on both feet go numb.

    Of late, if I try to lay flat, shooting pain from my back (lower lumbar) to the outer part of my thighs...

    I've had SEL that I know of for less than a year. I know it wasn't on my MRI's a year and a half ago...

    Again, Welcome aboard!!!

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Sorry for the delay in answering, life hasn't been easy of late. Between fighting with doctors and rendered incapable of opening my eyes yet unable to sleep, I've had bout of extreme pain and total loss of my legs with nonstop nerve pain from my neck down.
    I've been to a pain management clinic now and Dx with congenital spinal stenosis so with that and all the other problems no wonder my body's so bad of late. But still onward we go tho not to surgery I don't think that's an option.
    Did you come visit the better part of Australia whilst you were here? West Australia does seem a bit behind th scenes but that suits me nicely, I've never been one for bright lights. I did a three month world trip a few years ago, twice so delightful. We went to NZ, USA, CAN, UK and France. we've a daughter getting married in the UK next year and tho the actual trip will be horrid, I can't wait! But must!

    I do enjoy the kids every time I can which isn't often enough for me, they brighten my day and I wish we were closer"...
    Cheers
    Adrienne
  • Hi Jerry,
    I also have numerous problems and it's difficult to know what is causing what!
    But am working my through another lot of doctors in hope of a complete Dx. Then I think I'll go hide in my hole and have no more tests and no way will they get me into surgery unless my life depends on it.. I think it best to get the most out what I've got ...
    They don't know enough yet.
    Cheers
    Adrienne
  • Adrienne and Brenda,
    Thanks for your responses. I recently had an MRI and the report came back "normal". I met with my neurologist today and he recommended I specifically ask if the radiologist saw fat.

    A 2005 mylogram indicated "slightly prominence of the thoracic epidural fat, thoracic epidural lipomatosis". So I need to confirm that this latest MRI shows fat - as my symptoms have progressively gotten worse (left arm)

    I have been diagnosed with CSF leaks in multiple spots, multiple times since 2001, but none since 2005. Since 2005 I have only had progressively increasing pain and weakness in my left arm daily, and spinal pain occassionally.

    I don't know the next steps but at 38 and having dealt with this for 6 years of daily pain, I am about at my end. While I take daily pain meds, I refuse to increase the dose and now just live in pain. The stigma of being on meds is so horrible, the looks I get from the pharmacists and other doctors that don't know my story is embarrassing.

  • It's oh so hard to handle, the prof I saw stated I'd congenital stenosis of my spine which my parents handed down tho never suffered to badly from. The as an allergy to cortisone meds I've also have a buildup of fat around my sacral area, but with so much wrong with my back and no complete Dx. I'm 52 had problems, embarrassing problems my entire life, tho the last 10 have been wasted away resting up trying to hid from pain but it always finds me.

    I was recently given permission to increase my drugs so I did the pain was so intense but it made no difference so have gone back to the dose I was on but the pain is sending me crazy I think....

    I increased till I'd doubled the dose but still not stopping the pain, by this time the label druggie was placed on my head I'm sure but I'm back down to just below the dose I was originally on.
    What I want more than anything is to begin living again..

    Wish the best for you
    Cheers Adrienne
  • i have epidural-lipomatosis and i have been told that mine are in the outer chamber of my spine and yet i get numbness in my feet and hands and i get a lot of pain in my back around my lower back and yet so ive been told as mine are where they are they are not causeing my problems and yet they have not found anything eles either i really could do with some help or just talk to some one who is going through the same thing as my self and who has never been offered any treatment thank you
  • Hi Richard, having ESL (Epidural Spinal Stenosis) is frustrating
    Because most Orthopedic Surgeons or Neurosurgeons don't
    Seem to want to address it, I went to a Professor Orthopedic
    Surgeon at a well known TX facility who referred me back to one
    Of the Orthopedic Surgeons who operated on my cervical spine
    A few years ago, and the Professor/surgeon said "go back to
    -------(Dr) and let him do a laminectomy and 'suck out' the fat because
    Our hospital doesn't do that type surgery!! (epidural Lipomatosis)
    I'm sure they do Laminectomy's... so his answer was totaling
    Unprofessional! He also said "Dr------ is more aggressive in his
    Approach to surgery.....! Yes! He is more aggressive as you can
    Tell if you pull up the Texas Appraisal District & find out he owns
    A million + home!! The last I had was 3 steroid injections
    For my thoracic spine pain, though the ESL is in my lumbar
    spine. 3 dr.s advised to lose weight which I have done, so I plan
    to go back to one of the Neurosurgeons to have a new MRI
    or Myelogram to see if the ESL is still there, I don't want any more
    Steroid shots as it is suspected that steroids add to the problem. It's
    Been a couple of years since diagnosed. I still take 1000 to 3000 mg
    of Hydrocodone, Celebrex (for osteoarthritis & spinal stenosis) it helps
    Unless I do any cleaning, or heavy work ( like taking care
    Of 2 great grandchildren! I have to take 3000 mg Hydrocodone
    If I any of the above! Since incontinence is the criteria (it seems) and
    If do 'they say to go to ER' for emergency surgery! I don't have that
    So just still trying to lose more weight. I hope this has been helpful, as
    You are too young, I think, to be going through these irritating
    and painful problems!! Good luck to you!!



    BonnieB
  • Hi everyone...all of you who have had comments on the SEL, after 3 yrs. of doctors, both Neuro and Ortho, the last thing I
    tried was Facet Injections, 3 of them in the thoracic area, as my husband (age 82) and I, went on a meditteranean cruise for his
    80th birthday. The injections may have helped though I really don't know as the pain in my legs and feet were so bad it
    may have taken my mind off the upper back!! though it was a beautiful trip, I shouldn't complain! Other than getting major
    sick the last day of the cruise...food I think!! Now..I decided to have another 'go' at a new MRI to just see what is going on
    with the SEL, the DDD, the pain, new pains in shoulder which could be from a previous torn rotator cuff?? I went to my Ortho
    surgeon who operated on my cervical spine for 2 level discectomy + fusion, which is doing fine, though some degeneration in
    upper disks above the metal cage, though he just advised more injections. I had Chronic Bronchitis, so did not go through w/
    the injections and still don't intend to because all of the research that I have done points to steroid usage as one of the possible causes of SEL..though my Ortho surgeon does not agree, so now I am still seeking answers such as: has the SEL worsened or stayed the same as it was 3 yrs. ago? I don't have the answer yet. When first visiting this doctor last month, he
    suggested possibly doing the laminectomy to lessen the pressure of the SEL but he didn't advise the surgery after the MRI..stupid me..I forget to ask all the relevant questions while in the Dr.s office, so now trying to find out what 'next'...as I do
    not want the injections in my spine any more. I will write more when I find out. He did give me more narcotic in the hydrocodone and less tylenol, which I am not sure helped. I am also taking Lyrica now for nerve pain and 'all over pain' such as Fibromyalgia pain, but this Orthopedic Surgeon told me he doesn't believe in 'Fibromyalgia'..same as the Professor of Orthopedic Surgery at UTSW also said...hmmmm...I just don't know anymore..just keep on keeping on, I guess!!
    Thanks for any and all comments.
    BonnieB
    BonnieB
  • cstccst Posts: 14
    edited 07/10/2012 - 5:10 PM
    Chronic Pain- "lumbar fusion implant" possible rejection - also Allergic to epidural injections- deposit fatty substance in spinal channel from epidurals
    Epidurals caused this to worsen, doctors state to stop long time use of epidurals and steriods!!!!

    Good Day.
    Im Looking for suggestions or answers... Im in so so much constant pain!
    I am 49 (female). Have severe Lumbar spinal stenosis. Had all kinds of testing done: Xrays, MRI, Nuclear Bone Scans, pain management, physical therapy and acupuncture. I’m at my wits end with pain, with so much pain, I only sleep 3 hours a day at best!
    I had been to hospitals many times, referrals to numerous physicians, specialists for the past few years. One referral to another . For the past few years I had gone for pain management, epidural injections every two months which I thought would help but soon found out, it did the opposite. Not only the cost every two months, $4,000.00 for pain management injections, I got sick from meds and gained more and more weight over two years time with the steroid injections.
    I had gone to Europe on vacation and was told by my family and friends to opt for another opinion. WOW It opened my eyes. After testing was done, saw a chief neurosurgeon in Austria. He took one look and told me to STOP all the medications that made me ill. My spinal channel was clogged and narrowed. No circulations to my legs and severe spinal stenosis and much more. He explained to me that the Epidural injections deposited fatty substance in my spinal channel and it would have eventually paralyzed me if I would have continued. He told me to see a neurosurgeon here in the US that would do surgery to unclog my spine and widen my spinal channel which would allow blood flow to my legs. He told me to stop all meds and LOOSE WEIGHT. That day, I joined weight watchers, swallowed the pain for months. Lost 45 pounds! As the doctor told me, the day you wake up and no longer can walk, call me! I did August 2011 and had Lumbar Spinal Fusion R L3 and RL4 fused with a titanium implant. Come to find out, I also had been running around with broken vertebrae’s.
    Well the recovery is slow, had to be back to work in 6 weeks and having to walk up the stairs otherwise I was not allowed to come back to work I was told!
    It is almost a year later, still with severe pain, my posture is better but the pain has worsened and never did leave me. A constant dull pain which never leaves whether I lay down, sit or walk. I cannot walk much, always with a cane and after a few feet, will have to sit down again. When shopping have to use a Motorized cart mobile. My life at 49 is not what I thought it would be.
    The worst of all is that I went back to the surgeon due to the pains, I shiver and am cold a lot, at times cannot even walk, asked to see the doctor for my symptoms, an explanation . I get sent to other doctors and get ignored by my current that did the surgery. He had me tested for possible infection, blood work, nuclear bone scan done at the hospital, MRI’s and Xrays and this is two months later and I cannot even get an appointment to go over the test results! I must have just thrown over $10,000 out the door, with no medical explanation to my constant pain…. Severe muscle and joint pain, always exhausted, tired , fatigued after my lumbar fusion, sleep only 3 hours. I feel my legs with pain at night, like restless leg syndrome, the legs could walk by themselves, that how much pain I have! Everything hurts all the time!!!!
    Is my body rejecting my spinal implant?
    My skin is sensitve to pressure and I can never get comfortable. My fatigue , muscle aches and joint pain are constant and severe. I am unable to take this anymore. I was given by a physiotherapist a mediciane called “ nurotin” and it finally helps me sleep for a few hours for the nerve and leg pains. However when I get up and move again, the pains are constant with moving. Can my body be having an inflammatory response to the implants?? My body is being attacked by something I cannot explain.
    I made an appointment to see my primary care physician for the earliest appt available in AUGUST and hopefully I get answers to my blood work which shows that: C- reactive protein quant is high 8.5 ????? When you google it, possible infection in the body that caused the C-Reative protein to rise. I hope I get some answers soon before I decide to admit myself into the hospital again if the pain doesn’t lessen. What to do? If I go to the hospital they release me to see my doctor who doesnt have an available appointment to see me?
    Thank you, CST
  • So sorry for your pain. Your description is so familiar to me, I could have written it. the very best I have ever felt was when I tried to get a schedule with the hydrocodone. I take one 500-5 hydrocodone and an additional 600 mg. of ibuprofen at 6am, 2pm and 10 pm. It makes it bearable at least. If I wait until the pain is severe, the meds do not help as much. I could take more hydrocodone, but try to keep it the lowest effective dose. the pain Dr. I have was surprised when my MRI showed the SEL and said I am the first case he has seen. Not too comforting. I have a lot of other health issues and can't have anesthesia, so no surgery for me unless an emergency, and no gaurantee that I will recover. I am 67 years old and retired. I could not even get a pair of socks on, never mind work. Perhaps it's time for you to retire on disability and try not to expect too much of yourself phyically. I am not a crybaby, have always tolerated pain well, but this situation has broken me down. I also have torn miniscus in both knees. Yikes, just what i needed. I'm getting knee braces soon and hoping that helps. My kids (grown) are great and help me keep a sense of humor. I try to recognize joy wherever I find it...a sunrise, a hug...whatever, I'll take it. I wish some joy for you and to find a Dr. you can talk to that understands and you can trust to guide you. Please don't give up. All the best, jas
  • bonniebbbonnieb Posts: 26
    edited 02/17/2014 - 5:33 AM
    Hello to everyone still on here for spinal problems. I switched pain management doctors this month, and for upper back or (thoracic) major pain I'm having facet injections in a couple of days,if the injections don't work, then he will do a rhizotomy, which is burning the nerves in that area. I'm told by many that the rhizotomy helps, though the nerves do grow back after a period of time. I have , also, a cervical desectomywith fusion, 2 level, so the disk above the steel cage has deteriorated causing neck pain, though not as bad, but it has caused weakness in my right
    arm or a spur in my shoulder may have caused it.still having lumbar pain as well. So, j will report back after the facet injections. I hope someone will reply as to their experieces with same issues.Thank you so much! ( in advance?
    BonnieB


  • I'm sorry that I can't share any experience with you, but I will look forward to hearing how you get on with the thoracic facet injections. I have been offered injections to help with my thoracic spine pain and so am interested to read how much help they give, if at all.

    I also had a 2 level ACDF (neck fusion) done over a year ago and a lumbar fusion nearly 4 years ago.

    Good luck with your injections and I hope they will help you.

  • I was just told that one of the diagnosis after an MRI was possible lipomatosis, not in my spine throughout my lower sacrum area. Upon looking it up it seems that it is mostly diagnosed in older African American men in later life and obese. I am an Irish German woman who is not obese although at 67 I feel like 90 some days after a bout of back/rectal problems. Just wondering if anyone else heard of this.
  • Hi all. For what it is worth, I thought I would share my experience (and successful outcome) with epidural lipomatosis. I had lumbar surgery to relieve stenosis at L3-4 & L4-5, but after rehab I was still suffering from idiosyncratic pain in my left buttock, hip flexors and the area around my sacrum. (I am neither obese nor have I engaged in steroid use.) A "stand-up MRI" (wherein they take an MRI of your spine while sitting up under load from gravity) revealed that I had severe "buckling of the nerve roots" at L2-3. So, I went back in for surgery. The doc said that as soon as he opened up at L2-3, epidural fat came "herniating out" ... which obviously had been putting my spinal nerves under tremendous pressure. The doc sucked all the fat out, removed some bony build-up around nerve roots, then closed me up. THAT NIGHT in the hospital ALL my symptoms were gone and, to this day, they have never returned (and it's been 18 months since surgery). I am back on the tennis court playing full-on. So, I guess my advice would be to 1) be aggressive when you're in "the health system," 2) self-educate, especially with online tools (but don't get depressed from all the negative testimonies), 3) do all the conservative management they first suggest, and 4) don't be afraid of surgery if you're confident in the doc you've chosen (and be sure to get those 2nd and 3rd opinions!).
  • chubbyspinecchubbyspine Posts: 2
    edited 09/08/2015 - 9:00 PM
    After seeing your recent post I had hope for a similar spinal decompression during my surgery yesterday 2/5/15. Indeed it was similar (fat came herniating out as soon as the surgeon entered the epidural space during the laminectomy procedure) . The sense of relief was immediately recognized when the nurse asked me to walk. This feels like a new beginning, time will tell.

    The L3-L4 laminectomy procedure seems to have addressed the myriad of symptoms resulting from spinal epidural lipomatosis. For anyone interested in following my progress in the coming months,

    Welcome to Spine-Health
    Please click on link for helpful information!
    ~ spine-health moderator, savage
  • arh1110aarh1110 Posts: 1
    edited 09/08/2015 - 8:57 PM
    My name is Ashley and I am 26 years old. I was diagnosed with degenerative disc disease at 19 and when I was pregnant (23) with my son my L2 herniated. I had back surgery 15 months later and I had an MRI come back this month saying I have epidural lipomatosis. The lack of information that is readily available is kind of unnerving. I am in a lot of pain in my back, my left leg is numb on the outer layer. If you touch my leg it's like you are touching me through a blanket but it feels like there's a fire in my thigh. My legs go numb/fall asleep a lot and so do my feet. I can't wear regular shoes, flip flops are the only thing that do not hurt my feet but they aren't great for back support. I have lost 50 lbs through diet changes and now I just feel so stuck because of my physical limitations. I try to push myself then I can barely do anything for a couple of days. One morning I had to crawl to my chair and I couldn't walk for about two hours. Any information that I could get is greatly appreciated. I am incredibly nervous about my visit with the orthopedic surgeon and I'm trying to educate myself a little more so I can have questions readily available for the doctor.

    ****************************************
    about Degenerative Disc Disease
    Please click on link for helpful information
    Welcome to Spine-Health
    Liz -Spine-health Moderator
  • Hi Ashley, I just now saw your post from last year. I hope things are better for you. Was/is lipomatosis the source of your problems at L2?
  • chubbyspinecchubbyspine Posts: 2
    edited 09/11/2016 - 11:55 PM
    I am posting an update ... A bit long overdue and a lot has happened.

    For the three months following the decompressive laminectomy in 2/2015 (really he just cleared out the fat), my "usual" pain signature was absent as were about 60% of the neurological symptoms.  I was, however, recovering from the surgery pain.  During the next 7 months my "usual" pain and associated neuropathy slowly came back week over week until I was bedridden 90-100% of the day.  I truly was fighting for my life and felt the end was imminent.  I just could not handle living with the constant, debilitating pain.  If it wasn't for my daughter, I would not be here.

    In January of this year, 2016, I was blessed to find Dr. [edit] CA.  He recently came over from training at the Cleveland Institute, for 5 years, where they specialize in treating rare conditions like SEL.  He immediately began a series of epidural injections..... Not steroids!! The active ingredient in these injections is hyaluronidase (a natural enzyme the body uses to dissolve tissue).  We reviewed other case studies where patients experienced improvements from these injections .... Albeit they had arachnoiditis.  The idea is for the injections to dissolve fatty tissue buildup in between the nerves in the spine, as is the issue in arachnoiditis.   In the case of SEL, why not dissolve the fat in the epidural space!!??  To my knowledge, I am the first SEL patience to receive these injections for the sole purpose of dissolving the epidural fat.  

    Ok - how did it work you may ask?  I experienced an immediate "parting of the clouds", you may say. As soon as I got off the bed after the first shot, I noticed something had changed for the better.  HOPE returned to my life where it had been absent for months.  I now have received three series of hyaluronidase (whitease is the brand) injections and continue to see progressive improvements.  I am now able to walk or stand 5 to 10 minutes and even bend over a little bit!  The primary improvement is the reduced chronic, debilitating pain that I was in.  My life is finally more livable. 

    I do expect this fat to creep back, however.  It always seems to.  The neuropathy and pain came back about a month after the first series then two months after the second series.  I am now at the three month mark after the third series and only a small fraction of the neuropathy is back at this time.  We are hoping this continues to improve since I have not had steroids in a very long time.

    These injections are a life saver for me but may not be for others,.... I am interested in getting in a case study but need other SEL patients to participate.  I am working with Dr.[edit] and he is trying to get interest internally in this case study.

    I never realized what people meant when they said HOPE is the only thing that matters, but I do now.

    Ian

    Comment edited by Liz, Spine-health Moderator Removed names of specific medical professionals and facility

  • LizLiz Posts: 7,904
    edited 09/12/2016 - 12:00 AM

    This is an old discussion created by a member who hasn't been on the forum for a very long time so I am closing it.
    I suggest you create a new discussion



    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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