Latest Blog Article: Interstitial cystitis is more of an injury to the bladder
Results 1 to 9 of 9
  1. #1
    ICN Member massagedoula's Avatar
    Join Date
    Feb 2005
    Location
    Olympia, WA
    Posts
    1,917

    partial sacralization of lumbar vertebrae

    I just got my CT scan report back and it showed "partial sacralization of L5" which means (after I did a Google search) that my L5 is partially fused to my sacrum. Could I have had this my whole life, or coud it have happened recently and caused IC, or could it have been slowly happening and when it got to a certain point caused compression of the bladder nerves or something?

    Anyone know? Anyone else have this?
    30 year old Mother, Midwife, Birth Doula, Herbalist, and Massage Therapist with sudden onset of IC approx. 2/16/05 (after a PAP smear and routine gynecological exam). I tried a HUGE list of natural and alternative treatments (including Cystoprotek, Desert Harvest Aloe, Aloe gel, Glucosamine/Chondroitin, L-Argenine, Quercitin/Bromelain, Marshmallow Root...etc) for the first 9 months of having IC, without much relief, until I finally researched and started Elmiron.

    My experience:
    ~Previously took Elmiron 100mg three times a day
    (9/29/05-7/06)
    ~Experimented with dosage (1-2 Elmiron a day recapped into a plain gelcap) and did well with occasional mild flares. (7/06-9/09)
    ~Stopped all together at the 1 year mark (9/29/06) for 10 days. Still felt good, with low-level symptoms.
    ~Decided to go back on it (10/16/06) to see if another year on it will bring me into full (zero symptoms) remission. Currently taking 1-2 pills a day, recapped into a plain gelcap.
    ~ 6/08...Tried to go off Elmiron again, had huge flare at the 3 week mark, went back on 100mg once a day for maintenance.
    -I went off Elmiron for 2 months due to pregnancy and had a complete relapse of IC symptoms to pre-diagnosis levels of pain/frequency. I then went back on Elmiron at 10-12 weeks, but was unable to take it further due to severe morning sickness. The 2nd/3rd trimesters were MUCH better IC-wise, and postpartum is the best I have felt in years. I am no longer on Elmiron for now.
    -20 month postpartum remission from 4/17/09 to 12/10/10.
    -Out of remission after a pap smear on 12/10/10. Pap smears are obviously the main IC trigger for me. Currently trying to cope with loss of the remission.

    Also doing:
    ~Sugar-free/gluten free and strict IC diet (With an emphasis on organic, alkaline and whole foods)
    ~Prenatal DHA/Fish oil supplement
    ~Vitamin D supplement
    ~Culturelle probiotic

  2. #2
    ICN Member patricia1's Avatar
    Join Date
    Mar 2005
    Location
    Louisiana
    Posts
    2,132
    I am sorry your CT scan showed this. I have no experience what so ever with this but wanted to offer there was a thread awhile back about back problems and IC. Might be worth going back and re-reading. I dont have back problems unless you count scolosis, but have not had problems with that since my teenage years. My IC started much later for me after my c-section. I am sure someone else will come along with more answers for you.
    God grant me the serinity to withstand the days ahead!!!

    My myspace link...
    www.myspace.com/patricia_luvs_matt


    Patricia

    In Memory of My Father (Lawerence) 1/25/2007

    Procedures:
    Interstim Sept 2001
    1st InterStim Removal May 2005
    2nd Interstim Implanted May 2005
    2nd InterStim Removed March 2007
    Hysterectomy 1999
    Tubes Tied 1997
    C-Section 1996


    Me and my kids


    Taylor (my daughter) Me and my daughter My son Cody and Taylor

  3. #3
    ICN Member ICLori's Avatar
    Join Date
    Jun 2004
    Posts
    4,305
    I read this article once. I do not know how valid this concept is or if it applies to your case or not, but I thought it was an interesting idea. Of course I am not recommending back surgery for anyone, that is something only the patient and doctor together can decide.

    Blessings, Lori

    L5 Subluxation: A Cause of Interstitial Cystitis

    --------------------------------------------------------------------------------
    by Warren Hammer, MS, DC, DABCO

    A painful bladder syndrome called interstitial cystitis is a typical medical diagnosis where, if no obvious pathology can be found, the patient is treated symptomatically and often with antibiotic therapy and even hysterectomy. Failure to respond to treatment is often labeled a "psychosocial disorder" and referred out for psychotherapy.1

    Thanks to the current information revolution we are living in, several months ago a 28 year old male entered my office with shoulder anterior pelvic pain, perineal pain, frequency of urination, mild low back and buttock pain. His urologist had not been able to detect any infection related to his urogenital system and his condition persisted despite all types of medical treatment. He stated that although his back pain was not as significant as his urological symptoms, he felt there might be a relationship. He decided to do a literature search and found an article in the British Journal of Urology2 which described the possible causation of his problem.

    This article2 states "An identifiable lumbar nerve root compression appears to cause urological dysfunction consistent with interstitial cystitis." Ten patients, nine female and one male, were evaluated for chronic pelvic pain, and cystoscopic and histological appearances were consistent with a diagnosis of interstitial cystitis. All 10 patients stated that their urological symptoms were so severe that they never would have sought neurosurgical consultation, although their back and leg symptoms became worse with standing, sitting or exercise. MRI of the lower spine consistently found in all 10 patients a lateral compression of the L5 dorsal nerve root. Surgical decompression of the lateral foramina of L5 resulted in immediate relief of urological pain in nine patients who had been followed up for six months without a recurrence.

    The females in this study complained of clitoral pain and hypersensitivity, pain upon distention of the bladder based on urodynamic evaluation with synchronous cystometrography, EMG and uroflowmetry, dyspareunia in the women and perineal and meatal pain in the man. The patients were cystoscoped under anaesthesia and found to have diagnostic petechial hemorrhages usually seen with interstitial cystitis. The authors of this article point to the autonomic contribution of the L5, S1 and S2 nerves as they leave the vertebral foramina anteriorly to join the hypogastric nerve of the inferior mesenteric plexus. "Together these fibers make up the pelvic plexus which then spreads along the lateral aspect of the rectum to innervate various pelvic organs. The highest density of adrenergic nerves is found in the trigone, bladder neck and proximal urethra, where they serve a sensory function and are involved with vascular innervation."2

    My patient's MRI showed a lateral bulge at the L5 level. Orthopedic and neurological evaluation was essentially negative. There was tenderness on palpation at the L5 level. There was a definite fixation at the L5 level. His complaint of back pain was intermittent and not restrictive of activity. He was a weightlifter who was originally referred by the Leahy clinic based on an article in a recent weightlifter's journal on the benefits of Active Release. On his initial visit, his chief complaint was his shoulder. He stated that if I fixed his shoulder, we could then discuss his spinal and pelvic problem with me. I did fix his shoulder, and weeks later after his shoulder improved he presented me with the reference article and his MRI. Two adjustments of L5 eliminated his pelvic and urological symptoms.

    References

    Alsofrom J. Low back pain in the female: a dx challenge. Medical Tribune (3), 11/27/85.
    Gillespie L, Bray R, Levin N, Delamarter R. Lumbar nerve root compression and interstitial cystitis-response to decompressive surgery. British Journal of Urology, 68:361-364,1991.

  4. #4
    Guest emilyrose197377's Avatar
    Join Date
    May 2005
    Posts
    3,701
    Emily , I am sorry to hear about your back problems . I just got my mri results last week it showed I had facet joint arthritis ,DDD and osteoporisis. I pray you find relief for your Back pain.

    Take Care
    Kim

  5. #5
    Forum Manager ICNDonna's Avatar
    Join Date
    Mar 2000
    Location
    Oregon
    Posts
    36,240
    This article, co-authored by Larrian Gillespie, doesn't surprise me. You can read about her at http://www.ic-network.com/newsroom/296.html

    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/patient-r...on/#icfoodlist

    You'll find my story at: http://www.ic-network.com/conditions...tories/page/6/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool
    .....My Meggie.....

  6. #6
    ICN Member massagedoula's Avatar
    Join Date
    Feb 2005
    Location
    Olympia, WA
    Posts
    1,917
    I of course woud not consider back surgery. This (the sacralization) is something that when I told my chiropractor she said that I was probably born with. However...I do enjoy reading articles like the one that Lori posted, because, even though it does talk about surgery (not going to even think about it) it still mentions the bladder-back connection.

    I read that article about Dr. Gillespie a long time ago. I loved her book a long time ago (when I just had UTIs and not IC) and was sad to see that she might have hurt these people.

    I was just writing this post because I was wondering if this sacralization of L5 was common in other IC patients? I never subscribed to the thought that MY IC was an autoimmune disorder. I just don't feel that my body could betray me like that (purely speculation here, and just about my case, not IC in general). So I always wonder what the cause could be. I recently was reading back issue of Urology and saw an article that said that IC could have been caused my a long term low-grade bladder infection, one that was not big enough to cause symptoms but damaging to the bladder lining nevertheless. I never thought about that before. Who really knows what causes IC...but I wanted to throw this sacralization thing out there and see if anyone else had any experience with it. I am not saying to have back surgery, and I sure am not going to!!!
    Last edited by massagedoula; 07-14-2005 at 05:39 AM. Reason: adding
    30 year old Mother, Midwife, Birth Doula, Herbalist, and Massage Therapist with sudden onset of IC approx. 2/16/05 (after a PAP smear and routine gynecological exam). I tried a HUGE list of natural and alternative treatments (including Cystoprotek, Desert Harvest Aloe, Aloe gel, Glucosamine/Chondroitin, L-Argenine, Quercitin/Bromelain, Marshmallow Root...etc) for the first 9 months of having IC, without much relief, until I finally researched and started Elmiron.

    My experience:
    ~Previously took Elmiron 100mg three times a day
    (9/29/05-7/06)
    ~Experimented with dosage (1-2 Elmiron a day recapped into a plain gelcap) and did well with occasional mild flares. (7/06-9/09)
    ~Stopped all together at the 1 year mark (9/29/06) for 10 days. Still felt good, with low-level symptoms.
    ~Decided to go back on it (10/16/06) to see if another year on it will bring me into full (zero symptoms) remission. Currently taking 1-2 pills a day, recapped into a plain gelcap.
    ~ 6/08...Tried to go off Elmiron again, had huge flare at the 3 week mark, went back on 100mg once a day for maintenance.
    -I went off Elmiron for 2 months due to pregnancy and had a complete relapse of IC symptoms to pre-diagnosis levels of pain/frequency. I then went back on Elmiron at 10-12 weeks, but was unable to take it further due to severe morning sickness. The 2nd/3rd trimesters were MUCH better IC-wise, and postpartum is the best I have felt in years. I am no longer on Elmiron for now.
    -20 month postpartum remission from 4/17/09 to 12/10/10.
    -Out of remission after a pap smear on 12/10/10. Pap smears are obviously the main IC trigger for me. Currently trying to cope with loss of the remission.

    Also doing:
    ~Sugar-free/gluten free and strict IC diet (With an emphasis on organic, alkaline and whole foods)
    ~Prenatal DHA/Fish oil supplement
    ~Vitamin D supplement
    ~Culturelle probiotic

  7. #7
    Registered User
    Join Date
    Jun 2005
    Posts
    18
    Fused or not....that is where most of the nerves to your bladder are located. I think the nerves are definitely involved; which also explains why people who have their bladder's removed still experience IC symptoms.

    I think these nerves can be irritated by sitting a lot, leaning, bending over, etc...but, because most people don't actually feel an ache in their back they are just going to ignore the probable back-bladder connection that a lot of people have (and my advice is to just ignore them right back).

  8. #8
    ICN Member Annie2's Avatar
    Join Date
    Aug 2003
    Location
    Wherever the wind blows us as we love to travel! Originally from the Dayton, Ohio area. We now call Georgetown, TX home.
    Posts
    1,371
    How wonderful it is that we have this forum to share our experiences and views! It is by gathering such observations made by actual patients that researchers gain clues to guide them in their work of searching for the causes of and possible cures for IC.

    As Donna reminds us, we do need to be ever watchful for those who would take advantage of those suffering for their own financial and egotistical gain. We cannot blindly follow, but must analyze carefully all information we can obtain and use that to help us determine the treatments we and our doctors feel are right for us.

    By the same token, we must also realize there may well be a grain (or more) of truth that was the foundation of such unethical treatments. We need to revisit those situations and look carefully for the valid points that do exist. We must keep our minds open, continue our own careful observations, exchange and discuss this information with one another and share our experiences with the researchers working to help us. The greatest progress will be made when all of the avenues of communication are kept open and flowing. That is why this board is so VERY important to all of us. It gives us the forum in which we can discuss all theories, even those which are controversial. Those of us living with IC are truly the best observers of the condition. So let's keep this exchange of our observations going!

    I strongly believe that developing IC may be like losing vision in that there are many things that may lead to the same end result. For some, infections may have led to IC. For others, physical trauma like abdominal surgery may have been the trigger. Still others may have suffered nerve injury which led to IC. Perhaps IC may develop as a result of a series of such circumstances.

    Getting back to the original point of this thread, I have always leaned to the infection argument as being the trigger leading to my own development of IC. However, I do have an observation to share that is along the lines of this nerve damage or irritation theory. For a few months before developing IC symptoms, I noticed an irritating sensation at the very base of my spine (tail bone). It was an achy-numb kind of sensation that spread across just the lower portion of my buttocks and to just the tops of the back portions of my thighs. I could not think of any injury or trauma to the area that could have caused this. The sensation would come and go. As I stated, I first noticed this several months before IC symptoms began. My IC symptoms began suddenly. I did not have a history of any bladder problems. Other than a few documented infections, I never had problems with frequency, urgency or pain. My capacity was larger than average, I never experienced frequency and I did not have any childhood bladder problems. IC, for me, began suddenly. I was fine one day and in agony the next. A few months before I developed IC, I did have a documented and very nasty infection. At the same time, I had suddenly ceased hormone replacement therapy that I had used for over 15 years. I have long suspected the sudden decrease in estrogen left me vulnerable to a serious infection and these two events lead to my developing IC. I still believe this to be true.

    As a result of this nerve involvement discussion, however, I am beginning to wonder if that achy-numb sensation I experienced could have also been a contributing factor. In the past few weeks, this sensation has returned. Hmmm. Does this sound familiar to anyone else?
    Annie

    IC
    Ulcerative Colitis and IBS
    Pelvic Floor Dysfunction

    _________________________________________________________
    Retirement is great! Work is highly overrated!!!
    ---My dear hubby

    ________________________________________________________
    Never go to a doctor whose office plants are dead.
    ---Unknown

  9. #9
    ICN Member
    Join Date
    Mar 2006
    Location
    chicago
    Posts
    134

    Lightbulb subluxation in hip area

    hi all,

    don't know where to post this, but related to above conversation. i'm sorta at the end of the IC path (i hope, i hope). seems 9+ years later (after hydro/cysto dx of IC) that the MD's are hedging on whether i even have IC. As i get more relief from the symptoms (i'm on my 4th stint in PT, and I think this is It!), i'm finding that the most predominant and chronic symptom is pain the right hip.

    i danced (ballet and modern mostly) growing up and into early adulthood. i'm extremely flexible and i can, if in a certain position, pop my right hip in and out of the socket. some professionals have called it subluxation. my Pt says we cannot address until fix PFD by relaxing and lengthening pelvic floor, and then have to strengthen the surrounding leg muscles. well that was my interpretation of the plan! anyhow when i looked into actually fixing the subluxation that was a daunting prospect. only radical tx available (ie prolotherapy). it may not need to be fixed i suppose, depending on the level of pain and inflammation i am left with. i am noticing that if i walk for any sufficient distance (i.e. from three blocks to one mile), left with pain in the area (and it's deep buttock pain, obturator internus, pelvic area etc). i tried icing yesterday, and that helped.

    i sooo wonder if that hip thing had been caught early on if i could have avoided the foray into IC, PFD, chronic pain? So, underlying it all, it seems i may not have a "bladder problem" per se, but a hip socket issue that affected all those pelvic areas. All that time, $$, pain, invasive and embarassing procedures...for this?

    I don't recall any accidents, and xrays and MRI normal (with some minor arthritis lumbar spine and degenerate joint disease in L4-5). I did get a horrible bout of tendonitis in my early 20's after trying on my pointe shoes without warming up. i was on crutches a couple of days, but again, even at that time, xray came up normal. I did also fall once, caught my fall, but that was after IC diagnosis, but may have been before PF and SI dysfunction dx, hmmm.....

    just some food for thought.

    current medication recs by MD/urology consult are that my symptoms are musculoskeletal related, wants to see me off the tricyclic (making me fatigued, off neurontin). keeping a low dosage of valium (it works), and maybe give flomax a shot. work with the PT.

    it's been a strange, scary, and daunting path, and i hope i'm at the end!!!
    Last edited by vivig14; 05-07-2006 at 04:02 AM. Reason: punctuation

Thread Information

Users Browsing this Thread

There are currently 1 users browsing this thread. (0 members and 1 guests)

Similar Threads

  1. partial sacralization of lumbar vertebrae
    By massagedoula in forum Symptoms of IC
    Replies: 0
    Last Post: 07-13-2005, 08:13 AM

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •