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Thread: Severe pain and discomfort

  1. #1

    Severe pain and discomfort

    Very thankful Atul Kaushal to introduce me to this group.

    I am Harman from India. I got SCI at C6-C7 level in a car crash in Oct. 1996.

    Nearly 3-4 years back I started feeling some pain, burning sensation and discomfort. I met some neurologists, pain experts. They increased by baclon dose to 60 mg per day besides giving me other drugs like tramadol, diazapalm etc.

    The problem kept increasing and now it is at an unbearable level. I also feel a shooting pain going down through my legs as well. This pain and discomfort is felt 24X7 and is at its peak when I wake up. Since there has been no relief from the issue, I have started feeling very low. I can't even wheel myself, can't bend around or do any activity.

    BRIEF

    - I have an indwelling catheter, tried intermittent catheterization but it didn't work. It caused a stricture in the urethra which was surgically removed. The stricture has regrown now and it is very difficult to insert the silicon catheter. Now they do it with dilation etc. and the urologists are strongly suggesting that I should switch over to SPC as there is no other way out.

    I am really afraid that it would further affect my independence and movement as there are chances of leakage/spillage etc.

    - Further I have severe AD
    - Very strong spasms that I even have to te my feet to the wheelchair foot rests because otherwise I might fall off.
    - I had pressure sore on my back and I got rid of them after multiple surgeries. The pressure sores resurfaced and again had a surgery. Thankfully, now there is just one very tiny sore point. I am using the Otto Bock [Roho] air-cushion and hope it would keep the sore away.
    - The bowel evacuation is done digitally and a nightmare for me as I just yell in pain.

    - No exercise at all because of this problem
    - Very depressing thoughts as I am told by many that I will just have to live with this pain.

    I am used to being in the wheelchair life and love working on Road Safety [www.arrivesafe.org] so we can save some lives and life altering injuries.

    Would be grateful if you could guide me on

    - how to handle/reduce this pain
    - should I go in for the SPC or get a procedure done to get rid of the stricture and continue with the indwelling catheter. I feel indwelling gives me more confidence as I wear a leg bag that is not noticed by anyone.

    Eagerly look forward to your reply and am very hopeful that my pain would go.

    Best regards

    Harman

  2. #2
    Harmon - welcome to Care Cure Pain Forum. May I ask a few questions to have a better understanding?
    Are you surgically fused between which two vertebra?
    Have you seen a neurosurgeon or spine orthopedic surgeon recently who ordered an MRI to determine the status of your vertabrae above and below your fusion?
    Has their been any new motor or sensory loss with the onset of this new pain 4 years ago?
    Thanks for answering these questions if you can.
    arndog

  3. #3
    Harman

    Glad to read your post. Sorry for your injury. We understand the pain you are describing here at this forum, but our doctors cannot cure our central pain either. You are being given various anticonvulsants and that seems to be the main thing in the U.S. as well, although many get no or little benefit. Some here describe benefit however, so there is hope.

    As to your catheter, it is true that a suprapubic is very annoying and easily snagged. However, with the right care, I don't know that infections are any more common with the suprapubic than the transurethral indwelling, which also get replaced periodically for sanitary purposes. I don't know how medicine is paid for in India, but the guys here that do suprapubics ( and they are the clear minority) get pretty good at it so it is not much of a challenge to reinsert if it is pulled out. There are Foley type catheters made of bacterial resistant plastic which may give longer use than the traditional rubber variety. There are some docs who like silastic catheters left in the urethra for some time to reduce strictures or adhesions. Others recommend a hydrophilic catheter.

    We don't give medical advice at this forum so don't take our opinions too seriously. Stay tuned and let us know how you are doing.

    Here is a cite to PubMed:

    See this article at
    http://www.ncbi.nlm.nih.gov/pubmed/12235537



    Spinal Cord. 2002 Oct;40(10):536-41.
    Complications of intermittent catheterization: their prevention and treatment.
    Wyndaele JJ.
    SourceDepartment of Urology, University Antwerpen, University Hospital Antwerpen, Belgium.
    Last edited by dejerine; 05-27-2012 at 07:09 PM.

  4. #4
    Quote Originally Posted by harman_sidhu View Post
    Very thankful Atul Kaushal to introduce me to this group.

    I am Harman from India. I got SCI at C6-C7 level in a car crash in Oct. 1996.

    Nearly 3-4 years back I started feeling some pain, burning sensation and discomfort. I met some neurologists, pain experts. They increased by baclon dose to 60 mg per day besides giving me other drugs like tramadol, diazapalm etc.

    The problem kept increasing and now it is at an unbearable level. I also feel a shooting pain going down through my legs as well. This pain and discomfort is felt 24X7 and is at its peak when I wake up. Since there has been no relief from the issue, I have started feeling very low. I can't even wheel myself, can't bend around or do any activity.

    BRIEF

    - I have an indwelling catheter, tried intermittent catheterization but it didn't work. It caused a stricture in the urethra which was surgically removed. The stricture has regrown now and it is very difficult to insert the silicon catheter. Now they do it with dilation etc. and the urologists are strongly suggesting that I should switch over to SPC as there is no other way out.

    I am really afraid that it would further affect my independence and movement as there are chances of leakage/spillage etc.

    - Further I have severe AD
    - Very strong spasms that I even have to te my feet to the wheelchair foot rests because otherwise I might fall off.
    - I had pressure sore on my back and I got rid of them after multiple surgeries. The pressure sores resurfaced and again had a surgery. Thankfully, now there is just one very tiny sore point. I am using the Otto Bock [Roho] air-cushion and hope it would keep the sore away.
    - The bowel evacuation is done digitally and a nightmare for me as I just yell in pain.

    - No exercise at all because of this problem
    - Very depressing thoughts as I am told by many that I will just have to live with this pain.

    I am used to being in the wheelchair life and love working on Road Safety [www.arrivesafe.org] so we can save some lives and life altering injuries.

    Would be grateful if you could guide me on

    - how to handle/reduce this pain
    - should I go in for the SPC or get a procedure done to get rid of the stricture and continue with the indwelling catheter. I feel indwelling gives me more confidence as I wear a leg bag that is not noticed by anyone.

    Eagerly look forward to your reply and am very hopeful that my pain would go.

    Best regards

    Harman
    Harman, I agree with Dejerine. An indwelling catheter increases the risk of both urinary tract infection and also bladder cancer. While you may think that the risks of both are low compared to the inconvenience, I would advise not going for the indwelling catheter. Use a condom catheter to catch the urine if you are leaking.

    Regarding your neuropathic pain, what you need to do is find out whether something is triggering the pain. These include urinary tract infections, bladder or kidney stones, gallbladder stones, or smoking. The fact that your neuropathic pain developed recently suggests that something may be triggering it.

    As Dejerine pointed out, there are a variety of therapies that takes the edge of the pain but the therapies don't work on all people and all types of pain.

    Wise.

  5. #5
    Have you tried any nerve pain medicines? The medicines you mention are for spasms... not nerve pain, and it sounds like you have nerve pain.

    Common nerve pain medicines are things like....

    Neurontin (Gabapentin)
    Amitriptyline, Nortriptyline
    Topomax, Tegretol
    Cymbalta

    They may have different names in your country.

  6. #6
    Harman,

    I am glad Dr. Young made his post. Mine was not all that clear and of course, not expert based. I did not mean you should leave an indwelling in for long periods. Saw an article where indwellings had even required resections in women with their comparatively short urethras. I was referring to the occasional attempt to leave a plastic stent type of catheter in to prevent strictures from reforming. Of course, many serious strictures get resected. Hopefully, your problem is due to one of the causes Dr. Young mentioned and can be treated effectively.

    Around here, they call the condom catheter a "Texas catheter". I am not sure why, nor whether the condom catheter in use is really the same as the old Texas catheter. I doubt they call it that in India. I mention it in the unlikely event you come across the term in the medical literature. Some of the supply catalogs still use the term.
    Last edited by dejerine; 05-28-2012 at 01:05 PM.

  7. #7
    Leaking between intermittent catheterization can be controlled by the use of a condom catheter, but the catheter must be removed and replaced for each cath, which can run into quite a bit of money, and is a lot of wear and tear on the penis skin.

    If someone is leaking between caths when doing intermittent catheterization, it usually indicates the need for urodynamics, as this is the only way to determine what is neurologically happening with the bladder. Most likely he has an unstable, high pressure bladder, which needs to be managed to prevent reflux and damaging pressure back to the kidney, as well as to prevent leakage.

    The use of anticholnergic medications (Ditropan, Detrol, Vesicare, Sanctura, etc. etc.) can usually control this instability and high pressure, and allow you to stay dry between caths. Also cathing often enough (at least 5-6X daily or every 4-6 hours) and never allowing yourself to have more than about 450 ml. in your bladder at any time are also good ways to prevent both leakage and UTIs.

    If anticholnergic meds do not work, or cause too many side effects, then bladder Botox may be an option, and, as a last resort, a bladder augmentation (clam-shell augmentation) can nearly always remedy this problem, but it is a major surgery with a long recovery.

    (KLD)

  8. #8
    Quote Originally Posted by hlh View Post
    Have you tried any nerve pain medicines? The medicines you mention are for spasms... not nerve pain, and it sounds like you have nerve pain.

    Common nerve pain medicines are things like....

    Neurontin (Gabapentin)
    Amitriptyline, Nortriptyline
    Topomax, Tegretol
    Cymbalta

    They may have different names in your country.
    Don't forget Lyrica. We use a lot of this. Tegretol may work for some, but also is the most likely to have serious side effects, so requires close medical monitoring (esp. for bone marrow suppression).

    (KLD)

  9. #9
    Before I would attribute this to neuropathic pain, it is prudent to make sure there is not a structural cause for this pain such as cervical myelopathy from central stenosis or neuroforaminal stenosis above or below the fusion levels. I would make sure there is no syrinx, etc. That is why I want to know if imaging has been done and what it shows before making the assumption that this is neuropathic that does not need surgical evaluation.

    Hopefully, Harmon will let us know the answer to these questions before we jump to the conclusion that this is "only" neuropathic and would only benefit from medication management.

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