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Introduction , i am a new Member

Hello , i am Marieski , 68 yrs , had Laminectomy and Mini- Discectomy @ L4- L5 July /07 in Toronto . I am an Ontario resident who spends usually 5+ mons Stateside yearly . I am here in US now . Since surgery i have developed Radiculopathy in R leg- foot . Mod- severe Pain in lower lumbar back , buttock , R leg and foot has resulted in a " disabled " life for me with progressive loss of daily activities and sources of enjoyment . Our ( married 48 yrs ) whole life now revolves around this miserable FBSS condition and the pain and restrictions it imposes . I am seeing a PM doc/ team and have been referred to see a Neurosurgeon next week re a SCS . I am reading your Posts re this and wishing for more . My reading suggests there is a poorer outcome with " advanced age " and a time gap since surgery . It has been 5 yrs . Comments re this would be helpful . I have a lot of pain sitting so you can imagine the restrictions on Social life , driving , dining , going to a show , eating out etc , etc . It's a ' Downer ' for my husband as well . He just escapes the pain misery . I am taking MS Contin 45 mg - supposedly every 8 hrs but it doesn't last 6 . I have Perocet 5 mg tabs for Breakthrough but am now needing 2 for any relief . Right now my pain is not well controlled and i hate the fact that ant little thing , or so it seems , will aggravate it . Even cooking is now " off the table " ( need a little levity here ) . I dont know anyone on these meds nor do i know anyone with thie situation i am in . Finding your Website is relief from the sense of isolation i feel . Friends are sympathetic but dont really understand the medical problems . I am a retired Nursing Professor , understand the Pathophysiology but have trouble still , accepting this condition and the restrictions and pain . I am weary of it . That said i am also nervous about the SCS and all the inherent risks one takes with implantation . I think my age is the biggest issue . I would give almost anything to be able to sit again , i do periodically but have to be prepared to suffer the consequences - a sleepless night of unremitting pain . There IS more but i think this is more than enough for now . I do have some other medical issues i will share another day . Thank you for your informative and supportive posts and the opportunity to join your group . I have learned so much already ! Best Regards . Marieski ( once upon a time )
KelsMom
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Comments

  • Please excuse any site etiquette lapses or other errors . I am rather dumb when it comes to internet or computer terminology or Protocols ie - dont quite understand " Text format " or info below it . Marieski
    KelsMom
  • thoracic spine painthoracic spine pain Posts: 566
    edited 11/17/2013 - 6:00 PM
    Hi Marieski love the cooking is off the table comment. I've had intractable spine pain for 8 years. I always take someone with me to substantiate my pain. Strong opiates didn't really control my pain until I was given a muscle relaxant at the same time.

    I take Rivotril 500mcg (clonazepam) supposedly non addictive with my pain medication, oxycontin - 40mgs twice a day but it took 8 years to work up to this. The muscle relaxant helped so much. I also worked for a long time in agonising pain that did take over my life and ended up having to leave work because of the pain.

    As I was working I took and am still taking Endep (Amitryptaline) 50 mgs but started on 25 mgs for sleep. It needs to be taken about 4 hours before you want to sleep. I know they also use it for depression but it works for sleep for me. I didn't think it did anything at first but now I really notice it if I don't take it.

    Even though my sister died of breast cancer I use an estrogen patch 25mgs and it seems to help my bone strength.

    If you have had an operation it seems strange they haven't given you anything for nerve pain. I haven't been operated on as it is too dangerous - mine is an 80% wedge crushed T5 and above thoracic - caused through a motorbike accident. It is only lately that my physio realised is isn't crushed anteriorly but on the right side so my T4 hasn't got anything to hold it in place so it was mechanically out for 8 years. She tapes it into place so my muscles want to, but can't spasm it back out as soon as she fixes it.

    From what I've read on these forums and what happened to me it seems your body tries to heal itself by using the ones above and below the original damage to compensate. So my problem was really my T4 not T5. It seems to happen to people who have had operations as well.

    As a nursing professor you realise also that sitting is the worst position for PSI on you spine. I am also a firm believer in sitting or standing MRI's because of this, other people disagree but I am sure if I had a weight bearing MRI they would have picked up my T4 not being in the right mechanical place. There are a lot of studies - one by FONAR that you can read (they make both machines so shouldn't be biased) and you can see the difference on You Tube - there is one specifically about neck injuries and what shows up in comparison from a prone MRI to a sitting MRI.

    The muscle relaxants made my pain much more manageable. I say if you broke your arm and kept twisting it every day it would not get better - which is what we do to our spines everyday. A brace helped me even if it was just to remember not to twist. I can't believe how many times I twisted my spine during the day. I know this sounds really stupid but I didn't realise it was my central nervous system and that is why mine is so painful.

    I studied hypnosis to try and control my pain and have just started using it again. It's still not working that well for pain but have started doing 20 minutes off You Tube every morning and it is helping. Just be careful to get a highly trained hypnotherapist. I mainly use the ones with a circle with a line through it, but spirals put me under faster. I did one where they didn't count me back out and this is a bit dangerous so you have to see the ones that work for you. Ron talks a lot about guided meditation and there are some tapes there as well. It has really helped me. It distracts me from the pain and is great relaxation for your muscles.

    A pillow between my knees for sleep really works. There are some designed to take the pressure off your neck while you sleep. I also use a magnetic underlay and pillow and this helps me - have no idea why. Lots of people swear by zero gravity chairs - think you can get zero gravity beds as well.

    I have given you a link to the Intractable Pain Manual - wish I had read it years ago, you may not like it because of your profession but it is what happened to me so please keep an open mind. You will probably get much more information from the myriad of people here have cervical problems. The dermatone chart helped me understand as well.

    http://pain-topics.org/pdf/IntractablePainSurvival.pdf

    Hope this helps a bit.
  • LizLiz Posts: 7,904
    Please take the time to read this post and refer to it when you have questions

    I am sure that you will find your time on Spine-Health very rewarding. This site is a powerful and integrated system that is dynamic and growing.
    Here are just some of the highlights:

    - Spine-Health contains detailed medical libraries of articles and videos that address almost every spinal conditions and treatment

    - The Wellness section contains articles, tips and videos to help patients after surgery and also to help people avoid surgery.

    - Under the Resource tab, there is a section Doctor Advice Health Center which can be invaluable.

    - As a bonus, Spine-Health provides these patient forums. Here you can meet thousands of people who understand and can relate to your situation. You will soon become part of the Spiney family who provide comfort and the advantages of a support system. You are now part of this family that is approximately 20,600 international members and growing daily.

    - It is very important to understand the Forum Rules to make sure all of your posts do not violate any of the rules.

    - As a new member, it is helpful to understand the 'makeup' of these forums, how to make posts, tips on adding images and much more. You should read Forum FAQ

    Here are some links you should take a look at:
    Read before you post
    Tips for Newcomers
    Understanding the rules

    All of this will help make your threads better and improve the times and quality of responses you will receive.

    You can also find us on Facebook at www.facebook.com/spinehealth, Pinterest http://pinterest.com/spinehealth/boards/ , and Twitter @SpineHealth.

    If you have any questions or need assistance, you can use the private message facility to contact any one of the moderators on my team:

    dilauro

    tamtam

    Liz

    Sandi

    JellyHall


    Sincerely,
    Ron DiLauro

    ***********************************************************************************************

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Marieski45MMarieski45 Posts: 17
    edited 11/19/2013 - 4:01 AM
    Many thanks to ' Thoracic Spine Pain ' and Liz for your kind , informative words . I do take Meds for Nerve Pain . I take Gabapentin 600 mg daily ( had to come down from higher doses ) and I take Clonazepam 0.5 at bedtime for sleep . I also take MS Contin ( Morphine Sulphate ) 45mg ( 2 daytime doses ) and 30 mg at bedtime . These are supposed to last 8 hrs but dont last 6 hrs . And they take almost 2 hrs for onset . So i have to take Perocet 5-10 mg for the breakthrough . I also take an Anti- Depressant , Cipralex , that i was on pre - surg . I also have Pulmonary Sarcoidosis so need Symbicort Inhaler among other things . This issue is stable . I am also on an Osteoporosis med and a Statin . And Losec for GERD . These conditions are all stable . The Lumbar L4-5 and S1 regions , scarred Post - op with " dense " fibrosis are the source of my pain and disability . I am reading the booklet " Intractable Pain Manual " ; thanks for the suggestion , it is excellent . My husband is going to try to print it for me for easy reference and a tool to educate others . Most family and friends dont really understand and would just like me to " get off the Drugs " . I suspect you all have experienced this reaction . It is frustrating but is only a result of medical 'ignorance ' vs criticism . Still , it is 1 more thing to deal with . Now a question : i am seeing a Neurosurgeon/ Anaes . Re SCS implant . I am nervous re this as it is a serious , invasive treatment option . I would really like to connect with anyone who can offer some feedback re this procedure . Many Thanks . Marieski
    KelsMom
  • Go to all forums and under there you will see a place for Spinal Cord Stimulators. If you start a new thread there you will get answers to your questions and a lot of advice.
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