Well It looks like I am going to make a big decison on my health and Hope that I can have a little better of a future, or at least a future at all

Well I hope you all enjoyed your holidays, I made the best of what I could. Since my last post I have had yet another infection, that is two since being in the hospital end of august, and between that time I was on suppressive antibiotics, which obviously did not work. I went to see my urologist and a couple things happened at that appt., First off I need to have an ultrasound, which will be the first week of January, to see if I have kidney or bladder stones, because if I do that could explain the many infections. The reason this is a possibility is that when the bladder does not function, things build up that would normally be flushed out, but with a neurogenic bladder this does not happen. If I dont he recommended the same thing as the infectious disease doc. Getting the surapubic Catheter right below my belly button, which means another surgery and having a tube with a valve on it coming out of my belly to get used to. I will have to change the type of clothing I wear and again learn to live another different life. Since I have already had two infections since being in the hospital last from going septic, I am really starting to consider it.

I think I have been living in denial for quite some time now, and thinking I am not as bad as I really am. The doctors keep telling me how bad it is, but I was refusing to believe it. In my mind I do not see my self that way, but my body tells me they are probably right. I had told the doctor if that time comes then I will consider it, and her response was " you are already there" I guess I just did not want to believe it.

Here is a definition of the catheter:

suprapubic catheter

Etymology: L, supra + pubis + Gk, catheter, a thing lowered into

a urinary bladder catheter inserted through the skin about 1 inch above the symphysis pubis. It is inserted under a general or local anesthetic. It is used for closed drainage and may be left in place for a time, sutured to the abdominal skin. Benefits include a lower incidence of urinary tract infection, and ease of ambulation. Disadvantages are that they must initially be inserted through the abdominal wall by a physician and the insertion site must be cleaned daily using sterile technique if the patient is in the hospital.It must also be changed by medical personnel at least every 4 to 8 weeks.

At the rate I am going and the damage that I think is happening to my body, I worry if I will see my grand kids grow up, get married, have children.  I just want to be here to see those things and I can no longer deny it. Late the other night, Christmas eve, my husband and I lied awake most of the night talking. The same as I have hid my feelings from him, he has apparently hid those same fears from me. Maybe we have both been in denial about the deterioration of my body, and how it is constantly going downhill. We both admitted that we were afraid of my not being here any longer if I continue on this way. I am so afraid of this but I know in my heart it might be my only chance to get out of this infectious situation, at least for the most part. From my research people with this type of catheter report a couple infections a year, and if you have the one that is silver coated those odds can even go down. Right now I cannot go more then two weeks without infection and its really wearing my body down, to wear I have no energy to do much of anything, most times lately I am just checked out of life and it kills me of what it does to my family. I am thinking at this point that I may have to give in and have this done. My husband and I both agree that at least we think it cant get worse then it already is, so its worth a try.

If on my test in January shows no stones, I have decided to go ahead with this surgery. Its just another blow to me, and it just seems they don't stop. Its one blow after another. Maybe just maybe, this might help some, and let me get some life back into my body. I need this to work for my own sanity. I also realize it might not be effective and I then would have to just go back to where I am now, which is not a good thought because I don't know how long my body will last at this rate. The pain I live with alone would make most people give up, and believe me you would never want to have my pain, but the infections are even worse, and believe me you cannot get much worse than the pain I live with, and its hard to even imagine that it could be worse, but at least I can take meds for that. This infection thing is right now out of my control and it could kill me. That is the honest truth. So Yes I will still have the horrible pain that limits my life but at least I have a chance to live longer if I can get the infections under control, and this surgery is my only hope of doing that.

Those of you even considering having surgery for a tarlov cyst, and think that is your problem. Please Please Please reconsider that decision so you don't have to live like me. If you think your pain is bad, look at all options before going towards surgery. Although I have seen a few success stories from a couple other doctors (not mine) there are not many, and maybe just maybe those doctors that had success were being honest with their patient and had been given honest test results. That was not the case with me, but remember this. I thought I was being told the truth and I was not, so don't just see one doctor, see many, and have it confirmed. YOU DO NOT WANT TO LIVE MY LIFE.