I have been diagnosed with Spinal Alhesive Arachnoiditis of the cauda equina...by 2 Universities...Now the Insurance company doesn't want me to be treated by them (their state to far) so they put me under their Physician in Savannah, after 2 visit all he did was put me on table and did epidurals..of depo medrol..and was having severe problems with bowel and bladder dysfunction...this physician states he is not aware of this being connected with arachnoiditis..so ( I became close with Emory University Physicians...) I called Emory now the clinic is being closed down due to loss of their top physicians on arachnorditis..But the chief Dr. of Neurology answered me ..states it is connected and to search for another physician..(as in their notes from Emory he states that the Urologist and him(the dr. that was treating me) find that the bowel and bladder problems and are common with this disease. I have been unable to contact this physician to clear this up yet...but we went ahead to our hearing with the insurance company...so they have chosen another physician for me to see..(I won the Judge feels that I should pick now he was real impressed with all the information I had brought in our hearing on this disease and also was impressed with Cleveland answers in this forum for helping many of us) yeah..so I have picked Cleveland Clinic in Florida.. The insurance company doesn't doubt that I have arachnoditis it is on the bowel and bladder...if they are responsible of taking care of being their physician states he is not aware of this...So who should I see at this clinic in Florida that is up on arachnorditis like Emory is and want cause me more grief and confusion...(the urologist at Emory is very upset with this insurance company that they are not including the bowels...he stated they were connected and he would go to court for me..but they want take a urologist answers...strange...It is connected isn't it??? anyway please give this to florida doctors to help me...Thanks and any information that will help me.
As i fight this disease with out any pain meds and trying to live a normal life with this...for my self and my family...also in very much pain...Again thanks for helping in my support group "People helping People" support for Arachnoditis..(Wingletts home page) you have helped alot of people thanks from the bottom of my heart...trying to get alot of these people happy with physicians has really been hard...now it coming home to me..need to help my self now...
As you are probably already aware of, arachnoiditis is the inflammation and subsequent scarring of one or more nerve roots following surgery on a herniated disk or other back surgery. When the nerves invloved are the 2nd, 3rd, and/or 4th sacral nerve roots, the ones below the lumbar nerve roots, problems with bowel and bladder function can occur, since this is the major function of these nerves. Usually involvement has to be rather extensive and involve multiple nerve roots on both sides to get significant symptoms. There are few more frustrating conditions in all of medicine for both patient and doctor to deal with than arachnoiditis. It is notoriously resistant to efforts to treat it, and there are no easy answers or "magic bullets" if you will to cure or even alleviate it to a large extent. Injected corticosteroids can be helpful, as can certain drugs (usually low dose tricyclic antidepressant drugs--- well below doses used for treatment of depression) that alter the balance of pain generating chemicals in the smaller nerve fibers and can diminish some of the pain and especially burning type pain. Treatment of atonic bladder and bowel can involve various self-cathetrization techniques, and mechanical and/or laxative based stimulation to precipitate regular bowel movements. Sorting out whether the problems are due to a lack of sensation of the fullness of the bowels and bladder versus a lack of muscle strength and tone in them, or both, is extremely important as it affects how things are best treated. There are some surgical options (as a last resort) for severe bowel problems, and a consultation with a gastroenterologist, proctologist or colorectal surgeon may be advisable. The Cleveland Clinic Florida does have a special interest in the electrodiagnostic testing of the sacral nerve roots, which are those affected in cases like yours. I would specifically recommend Dr. Virgil Salanga, as he has extennsive experience and interest in such cases (of scaral nerve damage), although he nor anyone else at either the CCF Florida or the CCF Cleveland is a specific expert in arachnoiditis per se. CCF Florida is just as accomodating for out of town patients as the mother Cleveland Clinic is, and should be able to arrange for multiple consultations and appropriate testing in a one or two day period. The test you would almost certainly need to be scheduled for is called a pudendal nerve protocol EMG. Just to forewarb you, it involves, among other things, poking the muscle around the anus with a small pin, as well as some rectal electrical stimulation. Unfortunately these are the only ways to properly test these nerve roots, and are almost never part of a routine electrodiagnostic (EMG) test, for obvious reasons!! The test is quite literally a pain in the ***. However, in a case such as yours as you've described it, there's a very good chance it may yield new, potentially useful information and give you some answers and the associated peace of mind that comes with understanding what's wrong with your body, if nothing else. Patience and a dedicated physician offer your best chances at successfully living with this, and pain meds, as you've forunately avoided, offer the one guaranteed way to make a difficult problem even worse by resetting your pain thermostat endlessly upward, gauranteeing intractable, incurable misery. Good Luck to You!!!
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