YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Dennis Dennisissure and Eloise Faris live in York, South Carolina USA. He was 60 when he was diagnosed in 2005. His initial PSA was12.4 & 17.0 ng/ml, his Gleason Score was 7 and it seems likely he was staged T1c. His choice of treatment was Nerve Sparing Prostatectomy. Here is his story.

In the two years since my prostate surgery in 2006, I have spoken with and e-mailed several with the hopes of finding answers to many of my questions. It has been a very frustrating journey for me because you see, I went into my NERVE SPARING RADICAL PROSTATECTOMY with a very positive attitude only to discover that many mistakes and blunders had taken place and I can't do anything about them. It has been suggested that one should know who is doing the surgery, either skilled hands with many procedures under their belts or procedures done by "Yesterday I finished reading the book and today I begin OJT (on-the-job training) with a live specimen!" This was my case and I now realize I made some mistakes myself by not asking questions that should have been more relevant and of the utmost importance.

I am 2 years out of surgery, 3 times with complications that followed due to catheter blockages, catheter leakages and scar tissue healing shut. Then to add more salt to the wound, the last time in June of 2007 the bladder neck closed shut due to scar tissue healing again and did not allow me to urinate for nearly 2 days and I required emergency TUIBNC - transurethral incision of bladder neck contracture surgery to re-open the very minute opening that was smaller than the smallest wire they had available.

During the surgery, they couldn't get the scope in through the opening of the penis and therefore, had to make two incisions to enlarge the opening and then when they did get through and to the bladder neck, they had to carve it out and basically do a roto-rooter procedure leaving me with a completely unfunctionablebladder neck or sphincter. During the initial surgery in 2006, the procedure was supposed to be a NERVE SPARING PROCEDURE but the left side nerve bundles had already been LEGATED and caused a loss of blood 1400cc ; requiring two blood transfusions and at that point they found the right side seminal vesicle bundles but were only able to identify 20% of those and did not want to risk further blood loss as was already happening. (All of this from medical notes and procedures taken from the text as written)

To make a long story short, I am 100% urinary incontinent, I go through 12-13 pads a day plus underwear and 1-3 diapers per night. I used to go through 3 folded bath towels at night due to increased incontinence due to the radiation. As long as I lay on the couch all day and get up to go every 1 hour to hour and a half I can control the wetness issue; which means not much for a social life. I have had 0 erections since the 2006 surgery, have been told that my urinary incontinence is due to the production of too much Testosterone and that I should consider castration................... Other medical issues have come about due to stress, frustration, depression and knowing that I am now half the man I used to be all because of student experimentation and/or practicing. I try to get medication increases and or changes and also seek additional medical assistance but keep getting told that I will have to be scheduled for an appointment with that particular doctor 3 to 4 months down the road.

After the TUIBNC procedure, I sought medical help elsewhere; only to find that my cancer had returned and that I would require RADIATION TREATMENTS lasting 30-36 days to which I endured 35 days that ended New Years Eve day 2007. I am now 205+ days past radiation treatments and just now getting back to getting over the tired and nauseous feelings.

I have night time sweats that leaves my pillow and sheets totally saturated and wet, blood sugar readings are constantly over 200 as I am a type two diabetic and I am unable to convince anyone that there is a problem. I am still awaiting the upgrade in medications for all of these issues from the last visit in March. I am 63 years of age as of July 15th, 2008 and still hoping for a miracle if there is one to be had, but at this point I'm rather skeptical to anything and somewhat reluctant to trust anyone as well.

I wore a catheter from July 13th to the 22nd because I had to be barded for a bladder neck contracture that allowed scar tissue to grow and close off the urethra thus disallowing voiding of urine. I started experiencing excruciating abdominal pains and found that the catheter itself had pluged. When I irrigated, I would remove all sorts of blood strings and blood clots and foreign debris which I assume is/was dead tissue from the barding. At no time after the barding did they irrigate. I was told that they weren't concerned about the blood or bleeding as this was normal and not to worry myself about it.

I personally have witnessed the drug administration procedures at the VA and it is scary to say the least. When you are supposed to be given medication for whatever and when ever; a nurse comes in with the medication in a paper cup with a cup of water for you to take at that time. The same is true when you are going to get a shot for insulin or pain or an antibiotic. They just come in and do their thing.

I have been in several hospitals across the USA in intensive care and otherwise (these are civil hospitals) and one thing I saw that was very clear. Responsibility and Accountability. They wheel a cart, almost like a mechanics tool chest around with them that requires them to use their ID badge to gain access to the drawers for medications etc and it logs their name, time, medication and the patients name and room number showing responsibility and accountability..

Why isn't or doesn't the VA (Veteran Affairs) use this/these procedures in their hospitals and clinics? The VA has no accountability or responsibility on the care and administration of drugs and medical needs of the VA Patients.

It is quite clear and evident that the VA isn't attempting or trying to keep their staff surgeons up-to-date on new procedures or send them off for additional training. I have been dealing with many of these issues now since May of 2006 and I sympathize with those of you who are experiencing some of the same conditions and experiences but in a different manner from mine.

I have personally written to the Department of Justice, Department of Veterans Affairs, Senators, Congressmen, House of Representatives and so on but to no avail at this point in time. I filed an 1151 claim and a Tort claim. I was denied any claim from the 1151 claim in May and filed an immediate appeal pointing out many infractions and negligence not to mention errors in judgment along with surgeons who claim their presence was there but in fact either they had looked away or they had steeped out of the OR; otherwise, how could so many errors be made had their presence been made?

What is going to happen when all of our soldiers start coming back from Iraq? Are they going to get and experience the same type of treatment or will it be worse? Someone once said that the system is in the shape it is due to lack of funds i.e. Money! Maybe so, but I think it goes beyond the constraints of money issues--------------

First, we need more and additional qualified/experienced surgeons to do the job right.

Second, we need to have students present in the OR to observe and learn and not use us as guinea pigs for their OJT lessons.

Third, we need staff people i.e. surgeons, nurses, PAs, and others willing to step up take Responsibility and ascertain Accountability for their actions and work.

Fourth, we need a better prescription drug program so that we don't have to wait 10 days for the Prescriptions to come to our doors after ordering them.

Fifth, we need better outreach or CBOC (Community Based Outpatient Clinics) that can give us stabilization on medical issues that appear unexpectedly so we don't have to suffer.

Sixth, We need to have these same clinics not turn us away because; THEY DON'T ACCEPT WALK INs without appointments. Ridiculous!

Finally, we want to be treated like human beings and veterans, not pigs or animals because we're a bother and nuisance to the people looking after us.

All I would like to say at this point is this, KNOW WHO YOUR CHIEF SURGEON IS GOING TO BE AND WHO ELSE IS GOING TO BE ASSISTING, don't be afraid to ask the question you are afraid to ask------THE ONLY STUPID QUESTION/S are those that NEVER get asked!

Later:

I just learned yesterday, August 4th that the surgeon who wants to perform the artificial sphincter on me in Nov 2008 has only done 15 of these procedures. Yes, ONLY 15---------scary huh! I also learned that after he performed the cystoscopy on August 4th, he recognized that I am without both the proximal and distal sphincters and stated that this is standard procedure to remove both of these. According to civil doctors/surgeons the proximal is sometimes removed but the distal is preserved. As of today, August 13th, I am having to self-catheterize myself every 3 hours in order to void the bladder as the bladder neck does not want to open on it's own to void. It build up and then signals through abdominal pain that it is time to do something.

Your comments on any or all appreciated!

 

UPDATED

November 2008

 

 

On Wednesday, November 12th, 2008 I was scheduled with an appointment to see the surgeon who initially performed my prostate cancer surgery back in May of 2006. The reason behind this was set in motion by Debbie Dempsey/assistant to the administrator at Dorn VMAC in Columbia, SC. To see if there was anything that the Augusta VA could do to give me some relief from the bladder spasms, Cystitis Infection, Bladder Infection and Oral Infection. This to be opted in addition and prior to my fee basis visit to Dr. George Webster at Duke University and Medical Center in Durham, NC.

The VA did come to my residence and pick me up and took me to Augusta, GA from York, SC and back again. However, after arriving at the facility and checking into Urology and after a short waiting period of 40-45 minutes, I was called back to talk to a doctor who claimed he was part time because he spends his time otherwise at the Georgia School of Medicine next door. Dr. A.M. Smith simply went over my medical records and informed me that due to the return of cancer, radiation and laser surgery there probably wasn't going to be much anyone could do for me with regards to the incontinence, erectile dysfunction continued infections because of the presence of the indwelling catheter, including Dr. Webster.

I asked what the purpose of my visit today wows, and he replied that it was to enlighten me and make me aware of the conditions and post surgical issues due to the surgical procedures. I said, "I could have stayed home and talked to you on the phone and saved 3 hours travel time both ways for this." He said, "yes, but this way we have had dialogue in person." Really, isn't a phone conversation Dialogue?"

I asked him if he was going to examine me and look to see if there was anything that they could do and also change the catheter because I was starting to have the excruciating pains/bladder spasms and infection around the catheter entrance to the penis as well as a fowl odor again. He said, "No, that will have to be done by the Dr. In Columbia who is treating you for all of this - Dr. Brugh - I inquired about not getting any relief or help NOW for the pain and so on and was told that I should seek additional medicines and anti-biotics. The whole purpose of this trip and evaluation was to hopefully obtain temporary relief from the pain, infections, spasams and discomfort of wearing a catheter 24/7 for 80+ days. All I got was a few minutes of Dialogue and explanations of what I already knew.

Still not addressed are the following:

High Blood Sugar Readings and adjustment of meds to improve or correct with eyesight getting worse with blurry vision and burning eyes
Sudden enlargement of the Right testicle 2.5 times since May of 2008 (told that it isn't anything to worry about; 2.5 times growth?)
Documentation showing Tarlov Cyst and Lesion in spinal column that has been identified but not addressed
A small blood filled pussy growth on upper back
Lower back pain in the Kidney region with no assurance of medical assistanc or address
Sudden loss of cavitized teeth and teeth breaking off for unknown reasons
Bowel movements that only take place every 5 to 7 days becasue the anti-biotics from the UTI infections cause this to take place
Foul odor and pus secretions around the catheter entrance to the penis due to the catheters presence
Spasms that are excruciating and cause leakage of urine, blood traces and clots around the catheter to penis region
Nauseous symptoms with the sight of food, leading to vomiting and dizziness
Frequent pressure or acid reflux conditions in the chest
Difficulty swallowing upon awakening in the mornings
Heavy yeast buildup on lips, teeth and inside mouth (currently addressed by Doctor Wells at Dorn VMAC)
Still waiting for calls from Drs and CBOC in excess of 5 and 6 months

What kind of Veteran Medical Assistance and Attention do you call this? Is this why I served my Country? Is this the THANKS I get for serving my Country? Is this the way TAX PAYER Dollars should be Spent? WHY do WE the Veterans have to pay with enduring Pain, STRESS, Depression and Emotional issues because the VA is UNDERSTAFFED and FINANCIALLY Strapped? It wasn't our fault, we didn't cause these issues and we certainly can't rendure corrections due to Ignorance, Negligence and in-appropriate decision making of the PEOPLE we elected to REPRESENT us but all We receive is RHETORIC and PROMISES that NO ONE intends to keep. Then it's Helter Skelter as to which party, The Democrats or The Republicans to provide resolutions and direction as well as repairing a system that is so flawed and outdated with reference to todays ECONOMY and the value of the good ole AMERICAN DOLLAR that is destined to be a commodity towards toilet tissue.

I am told that no lawyer is going to be willing to assist me because there's no proof of wrongful doing of the doctors or medical staff. What in the world do you call this as I just explained and documented? Is this more Government Rhetoric and another means of sweeping the dirt under the carpet as we've seen for the past 12-15 years? I know I can't be the only one or the only veteran who is shouting and asking for HELP. If there is someone somewhere who can treat the issues with respect and consideration of what has been done, why and where are we going to go from here; it would certainly be worthy of waiting for CHANGE and A NEW DIRECTION. Right now we're going BACKWARDS, NOT Forwards.

It appears that lately, all I get is pawned off and pushed around and handed off to someone else; because no one wants to accept responsibility or take accountability for the facts and documentation showing complete negligence, ignorance, failure to make solid judgmental decisions and the inability to use good common sense. I complain about the pain, the discomfort and issues about not getting blood sugar evaluations made, eyesight going to hell because of it, inability to have regular bowel movements because of all the anti-biotics and prescription drugs, spermatozoa that has appeared and grown in size to the tune of 2.5 times since May of 2008. I'm told this too is normal from the prostate cancer surgery.

I am also told that the blood clotting, blood strings and dead tissue debris that is blocking the Cather opening inside the bladder is also normal for this procedure. I have to self-irrigate regularly to obtain relief from the spasms and infections. I am currently seeing day 83 plus 14 days of the presence of the indwelling catheter. NOT FUN AT ALL!

My appointment with Dr. Webster on December 10th, 2008 at 9:00 AM can't come any too soon. The problem is that the catheter has to come out then in order for him to evaluate, diagnose and recommend if any; procedures towards correcting and reconstructing the damaged areas of my plumbing to get me or give me back a quality of life taken away from me over the past 3 years. Once the catheter is removed, a PLAN of ATTACK needs to be in motion to PREVENT the Bladder opening from closing up again. I was informed by the Augusta, GA doctor that the stints or coils normally used to keep the bladder neck opening OPEN, might not be an option due to all the radiation and laser procedures.

A letter was sent to Senator Lindsay Graham explaining the difficult series of event that took place during the surgical procedure of May 26th, 2008 that were unexpected. I can deal with some of those; but what I am having trouble dealing with is the fact that, on June 15th, 2007; a TUIBNC procedure was performed at the Augusta, GA VMAC and several surgical steps were taken and NOT documented nor was I asked to sign any kind of release or informed of any potential necessity towards the surgical cutting of the penis just inside the opening in order to get a camera/resectoscope or cystoscopy passed. NO ONE HAD ANY TROUBLE PREVIOUS TIMES FOR THIS, SO WHY NOW AND WHY SUCH AN UNDOCUMENTED AND SECRET ISSUE?

Why am I pushed around in a circle from one place to another including the ER visits at a civil hospital i.e. Piedmont Medical Center because if they didn't do the surgery or procedure initially, they can't do anything now except treat as a band-aid issue?

So here's the big issue!
WHEN am I going to get MEDICAL ATTENTION when I am enduring pain and discomfort?
WHEN am I going to get STRAIGHT ANSWERS to all of these questions?
WHEN is SOMEONE or ANYONE going to listen to what I am trying to say?
WHY are we forced to SUFFER, endure PAIN, STRESS, DEPRESSION and get no where and NO RESULTS?

I have been tolerating most of these conditions and issues now since May of 2006 and the most serious of issues since November 6f 2007 and May of 2008. Here we are nearly THANKSGIVING, 11 months after the FACT and nothing is done yet.

I apologize for possibly being repetitious and redundant; but how would YOU feel if YOU were in my shoes?

I sincerely hope that I will be alive and experiencing a better quality of life towards CHANGES to the issues and hopefully A NEW DIRECTION TOWARDS OBTAINING MEDICAL ASSISTANCE and HEALTH before I die. It would be nice to know that I have contributed in some way towards making it easier for those experiencing many of these same issues after I'm long gone; and that the Fruits of these Efforts were NOT IN VAIN.

These past nearly 3 years have certainly "BEEN A VERY PAINFUL, STRESSFUL AND UNHEALTHY LIFE CHANGING EXPERIENCE". One I don't choose nor hope to see ever again.

 

UPDATED

December 2008

 

By the time many of you get this email, I will be on my way for the 3 and a half hour drive to Duke University for a scheduled VA Fee Basis Letter of Authorization towards seeing if the Specialist there, Dr. George Webster can fix, repair or reconstruct my damaged plumbing from 3 different surgical procedures during Prostate Cancer Surgery.

Total incontinence for 2.5 years is enough and I am looking forward towards a Positive diagnosis, prognosis and evaluation Complete by the best of the best. I can use any and all prayers during my tenure with Dr. Webster and his staff.

Upon return, I will advise all the results of my visit. I hope he isn't going to tell me he can't do anything; I'm trying to stay focused and with a positive attitude. It's time to move on and try to re-capture the time taken away from me due to these issues.

Thanks for all your prayers and thoughts.

Later: I think I have recovered from the 3 hour trip one way ordeal to DUKE University and 3 hours back again.

It was worth the wait although I was not anticipating further wait time for a resolution to the problems. Their words, "due to previous dilations and bladder neck constrictions with radiation treatments and laser surgery adding to the already complication of the problem first hand, there is NOTHING he can do right now as the catheter has only been out 20 days. There is significant evidence of scarring and the scarring to attempt to heal. Whether it (the scar tissue) is going to heal on its own and allow the opening to remain as it currently is OPEN but it is narrowed due to the scar tissue around same trying to heal."

SO, Dr. Webster wants to wait and give things as natural a chance as can be to HEAL over the next 90 days if in fact that is going to be possible. It may heal closed before the 90 days or it may not. A wait and see game.

In the meantime, I am to do the following:

Continue Self Catheterization as Follows:
Every day for one week 12-10 to 12-17 2008

If no problems persist then:

Every 2 days for two weeks 12-18 to Jan 01, 2009

If no problems persist then:

Every 3 days for three weeks 01-06 to 01-30-2009

If no problems persist then:

Every 4 days for four weeks 01-31 to 02-29-2009

If self catheterization becomes snug at anytime, go back to daily and call dr webster over the phone immediately.

They are already aware of the fact that a missed day could result in a closure and require dilating ER/OR procedures and that is when I have to also let them know of this.

The main issue right now is that they want to try and keep the bladder neck open and free of any obstruction. He does not want to put in stints or coils as they can cause problems down the road. I understand this, he will if it requires such. His main goal at this time is to get me dry and try to give me back the time i have lost during total urinary incontinence.

He and Dr. Rapaport were very concerned and interested in finding me resolution to my problem. I asked for a written copy of my visit and the prognosis notes from Dr. Webster and they are going to charge me $10 or $15 depending on the number. That's OKAY, because I need the documentation for my records.

I am going to cancel all of my appointments with the mental health department as they called the other day and cancelled me again. I do not feel that it is in my best interest to continue with medical appoints and cancellations just to talk to someone because they isn't got no one to talk to. I will try to put my depression and stress in another direction that will allow me to forget and move on with out any father duress.
Contrary to what others have said or claimed, I find that I have regained some trust in Dr. Webster and Dr. Rapaport towards finding and resolving my urinary incontinence issues, even if it means waiting another 90 days. why not, I've already waited 552.5 days so what's another 90 days? Right? Personally, a patient or veteran shouldn't have to go through any of this....................... I trust this new doctor and would rather he and his associate perform the required procedures to get me dry again.

Not to mention NOT being adequately informed of ALL possible issues. Three procedures and each one caused additional problems and complications NOT TO MY DOING OR TO THE FAULT OF MY OWN.

 

UPDATED

April 2009

 

 

This is to let everyone know of my upcoming surgical procedure to correct a urinary incontinence issue that has been ongoing for nearly 3 years. I will be in Durham, NC at Duke University for Pre-Op on Thursday April 30th (tomorrow) with surgery scheduled for the next morning.

My understanding is that this procedure may take a couple of hours at most. I will have to stay one day and then will be able to travel back home to York, SC but will not be allowed to drive for a couple of weeks.

My girl friend's son-in-law is going with me to make sure I get back home okay. Being a little apprehensive and somewhat nervous now that D-Day is finally here, I don't really know what to expect or anything except to hope and pray for the best at this stage. I will try to let all know the results after I return this coming weekend.

Thoughts and Prayers greatly appreciated

Thanks Dennis .

 

 

UPDATED

May 2009

 

Well, I am now 14 days post-op from the AUS procedure at Duke University with Dr. George Webster. I am currently in what they call a transition and healing stage that takes approximately 6 weeks for the incisions to heal and the implant device to settle in place.

On June 15th, 2009; I go back to Duke and at that time they will activate the device and have assured me that before I leave, I will be dry. I can't wait and I can't tell you how waiting for 3 years for this to happen is almost unbelievable. Many things had to happen prior to the surgical procedure and I will list them below.

1 I had a catheter removed on Nov. 20th, 2008 that had been in place for nearly 120 days. This caused much infection and bladder spasms to which the urethra needed time to heal.

2 I had an appointment with Dr Webster at Duke on Dec 10, 2008 at which time he diagnosed me and documented what needed to be done and how, but would require me coming back for a second visit in Mar 2009 to ascertain that the bladder neck was healing as well as it could.

3 The second visit with Dr Webster in Mar left a positive view and the hopes of finally fixing the 3 year long issue/s; however, a last minute decision by the surgical team towards opening the bladder neck to a wider opening and smoothing out the area without the need of inserting any stints.

4 Before the surgical procedure could be attempted and completed, one very important issue had to also be arrested and brought under control. That issue is as follows:

 

a. My blood sugar reading had been over 200 since going through Radiation Treatments from Oct thru Dec of 2007. Much of this due to stress, depreciation, worry and being sick and wet 24/7. Prior to the prostate cancer surgeries, my blood sugar levels were in control with an average of 125.

 

b. During this period from Nov of 2007 when my Radiologist sent a script to my primary care doctor at the VA clinic to evaluate my blood sugars and try to get them back under control; we were ignored until I finally got an appointment with the clinic in March of 2008 at which time I had blood work done and then never heard any more from them until around June of 2008 and then all they said was for me to continue my meds for the same.

c. I asked that my meds be increased or adjusted to get the reading back to a more normal or controllable level and they just left them at what they were. I had personally adjusted them myself by doubling the dosage amounts and after telling them that I did, they ragged me out and told me to get back on the original prescribed amounts and not to deviate from the scripts to which I followed their directions.

d. I decided that something different needed to be done if I was going to get this AUS procedure on May 1, 2009; so I went to see a civil internal medicine doctor locally who was also a diabetic physician and she adjusted my meds immediately by increasing the dosage and putting me on a new med called ACTOSE. After three weeks of this new doctors diagnosis and medicine adjustment, I am now back to a safe and controllable level of maintaining my blood sugar levels. The only way for the surgical date to be followed and kept was ONLY if the blood sugar levels were brought under 200 for at least a 10 day period prior to April 30th, 2009, the day before surgery.

5 Previous blood sugar level average from 2007 to March of 2009 were as follows:
A 7 day average over 200
B 14 day average over 200
C 30 day average over 200

6 Today pre-op and post-op surgery the levels are now under control
A 7 day average 05-2009 133
B 14 day average 05-2009 124
C 30 day average 05-2009 150

It is simply amazing to see such a drastic difference in the MEDICAL CARE given to a patient from the VA to a Civil Physician. What is even more depressing and stressful, is the fact that these issues could have been resolved at the VA level HAD THERE BEEN A COMPETENT PHYSICIAN WHO COULD MAKE THE CORRECT DECISIONS, CARE FOR THE PATIENT RATHER THAN LOOKING FOR THEIR PAYCHECK ON FRIDAY.

I know my story isn't the only one of its kind out there and I certainly hope others will do as I have done and document their cases and medical history and post it online for the world to see just what kind of treatment our VA system actually gives and how they attempt to cover up everything.

I am 4 weeks away from hopefully being relieved of 3 years of agony, suffering, depression, stress and being totally exhausted from all of this and I need to put it behind me and move forward. I will try to provide the final outcome of my visit to Duke university in Durham, NC on June 19th, 2009 for what I hope is the final leg and episode of my 3 year long battle with Prostate Cancer and surgical mistakes, negligence and ignorance..

 

UPDATED

June 2009

 

This is the latest and hopefully final UPDATE with my condition and the scenario that has lasted for 3 years. [hopefully Dennis won't abandon us and will keep us in touch with his onward and upward progress, demonstrating that there is indeed life after prostate cancer, even if it is a bit of a battle at times]

On May 1st, 2009, Dr. George Webster and Dr. Daniel Rapoport performed the delicate surgical procedure of an AUS (Artificial Urinary Sphincter) to correct previous surgeries that resulted in Total Urinary Incontinence. Before the procedure could proceed, there was some superficial sloughed mucosa at about 6 to 7 o'clock and this would not allow the scope to pass proximal to it. A sensor wire was then introduced alongside the scope, through the bladder neck, and into the bladder.Goodwin sounds then used to dilate to a 22-French catheter. The scope was then reintroduced. Two incisions at 4 and 8 o'clock were required in order to allow the bladder neck to spring open as it should. Additional sloughed mucosal tissue at the 6 and 7 o'clock position was taken care of using the Collins knife. The AUS device and procedure was then carried out and performed without incidence and was deemed a total success. I was instructed after coming out of recovery to get plenty of rest and wait 45 days and come back to have the device Activated.

45 days have since passed and I returned to Duke University to have the AUS activated and I am very pleased, elated and over joyed to say that I am now DRY for the first time in 3 years. No more 40 pad and diapers a day. I still wear a pad for safeguards in case of slight dribbling or leaks due to sudden moves or coughing. The sad and dramatic part of this scenario is that it could have been resolved shortly after the initial surgery in May of 2006. It wasn't and I was told that there was nothing that could be done it was something that I had to learn to live with. I even had one doctor a Urologist tell me that all wasn't lost that I was incontinent because I was producing too much Testosterone and that I could have the issue resolved by having a Castration procedure. Yes, Castration. That wasn't even a considered option with me.

In short and conclusion, 6 months after seeing Dr. Webster and his staff; I have been given the Medical Treatment and assistance that should have and could have been done 3 years ago. I have experienced what I call INCAR, Incompetence, Negligence, and the lack of Credibility, Accountability and Responsibility.

I certainly hope that no one else has to go through what I experienced and endured over the past three years. To all of you who sent emails, prayers and wishes my heartfelt thanks and appreciation is forthwith expressed.

Dennis

 

Later: The only remaining issue left from all of this is my ED issue. I haven't had an erection since early May of 2006 prior to the initial surgery. Allegedly, they only saved 20% of the nerve bundles; so I'm not sure there is anything left to help and they refused me Viagra (the VA). Fortunately, I have a girl friend of over 2 years now who is very understanding. We have yet to be intimate and it appears that this may never come to being or change. But that's okay too I guess. Couldn't really try anything when Willy was continually bathed in urine. :o(

I did try a manual stimulation this morning and was able to acheive an orgasm but it burned like HELL, I thought I was on fire. Any suggestions? Thanks in advance.

 

UPDATED

August 2009

 

 

The AUS device is working exactly as Doctor Webster described, however; an issue of leakage has been felt and I was advised on how to correct this. That being whenever I sit at my PC or Ham station in an office chair for any length of time, leakage occurs in the pads and is caused by sitting on a hard surface and the need for either a pillow, cushion or both to absorb the weight and pressure being applied to the area where the AUS device causes the cuff to flex somewhat causing the leakage. Therefore, the pillow/cushion remedy and the need to carry the same with me whenever I go to a restaurant etc.

I recently receive a certified letter from the Department of Veterans Affairs Office of Regional Counsel, Decatur, GA denying my clam for damages arising from the negligently performed surgery. Since I received this, Senator Chris Dodd was diagnosed with prostate cancer and will be having surgery immediately during the House Vacation Period during August. I wonder if he will experience any complications or if he will be up and about in 2 weeks like he claims. He has Government Medical Insurance and doesn't have to worry about a thing, like the rest of us.

My in-person hearing with a hearing judge from Washington DC was conducted on July 14th, 2009 and I was impressed with the judges comments and acclamations of being on our (the Veterans side).. Allegedly they are aware of the flaws and problems and how the system is in dire need of fixing. I still have to wait the approximate 30 day period for their team, staff and counsel to evaluate the hearing session and determine if or whether there was anything done wrong. I suppose this is common rhetoric for those of us who do not have legal counsel at our side to represent us. At least this is what I have been told and is the standard process with the standard letter when you do not take legal counsel with you. Hmmmmm!

At this stage of the so-called VA game and the process of hurry up and wait to see if you're going to die or if you're going to catch prostate cancer or if what you have can be cured through therapy or prescription drugs, I do not have any idea as to what more I can do other than suffer, worry and wait. After all, I have more time than I do Money................! When you die, all they are out is a $250.00 death benefit check to your designated survivor. What do they think this is going to cover? Maybe the pillow they put your head on in the casket!

One thing for certain, I'm still alive, still able to tell my story and not willing to give up or fade away like they'd like or want me to do. We need more people and vets to tell their story and put it on the the internet and web so our country can visualize what all we've had to tolerate as veterans serving our country and ending up being the guinea pigs of the medical profession under the VAMC's Ir-Responsible, non-Accountable, un-Creditable; Negligent and Ignorant practicing procedures, not to mention their willingness to point the finger to someone else rather than themselves. One thing for certain, I'm not going to go away easily...............

 

UPDATED

December 2009

 

Here's the latest issues concerning my battle with prostate cancer and the urinary incontinences problems .

The VA sent me a letter dated November 16, 2009 from the surgeon who initially did the surgery stating in part: "Your bladder dysfunction is secondary to a birth defect in your spinal cord which causes several years of bladder symptoms and urinary incontinence that pre-dates your prostate cancer treatment." Yet, none of my doctors prior to the VA statements show any of this of my prior medical history. Only the VA who is now trying to cover their butts for the mistakes and blunders made during the initial procedures and 3 surgeries. The letter goes on to say: "You were informed of these findings and your significant increased risk of complications and you desired to proceed with surgery"

Of course I "proceeded with surgery", as I was told that the complications issues was standard protocol to let patients know of the risks for infection and so on. I was not informed that I had a birth defect or that there were impending issues that could complicate the surgical procedures.

The letter also says " You have not come to your appointments follow-up for your cancer in 6 months despite multiple phone calls warning you that your blood tests confirm that your cancer has returned" but the last time I was seen by a physician at Charlie Norwood VAMP was in July of 2007 and when it was found that the surgery had failed I went on to radiation treatment. An they are just now finding that the blood work and tests done then show that the Cancer has returned ? Really! Let's see, July of 2007 until November of 2009; isn't that over 2 years time? And by the way, I never received a single phone call nor did I receive a letter or email

They seem to accept now that I might be eligible for a $90.00 a month restitution payment because the erectile dysfunction from this same surgery was done and caused at a VAMC facility.

The other problem is the control of diabetes blood sugars that cause increased urine flow. I have been taken off the oral meds for diabetes and placed on Insulin by a civil diabetic doctor but the VA isn't wanting to pay for the insulin. At $200.00 a pop for a 60 day supply, I am not able to afford this kind of prescription service. Need Less to say, I am not eligible for Medicare or Medicaid even though I have been tagged as a Urinary Cripple and Handicapped by the disabling disease of Prostate Cancer. I sent a transcript of the civil doctors notes from my appointment dated November 18th, 2009 to the VAMC in Columbia, SC so they could see the prescriptions written towards my diabetes and the requirement for LEVI MIR Insulin. The person in charge of overseeing this has been on leave since before that date and just got back into her office on December 1st, 2009. I received a card from the VAMC CBOC asking me to call for an appointment to get my blood tests done asap so I did and they said the earliest they could get me in was December 31st at 11:30 am as the doctor was going to be on leave and vacation and was too busy with prior scheduling to get me in any sooner.

This is the USA's Medical Care and Attention at it's finest and yet they want to implement a new Health Care Program that is in uncharted waters and has never been tried. Our existing programs are broken and need repaired, fixed and restructured yet they want to implement a new one.

Dennis' e-mail address is: dennisissure@comporium.net