Medical Confessions, part two

“The most important thing in illness is never to lose heart.” ~Nikolai Lenin

While seeing Dr. P. in Philadelphia, he referred me to his good friend and colleague in Virginia whom he thought I should begin seeing for the MRSA in my sinus cavity.  After driving to Philadelphia several times, my husband and I felt he was probably right. We met with Dr. H. after he received my medical records from Dr. P. — he knew he was dealing with MRSA and was going to have a tough fight on his hands.

While I believe everything happens for a reason, at about the same time, I scheduled an appointment to see an endocrinologist, but ended up going to the wrong location. When I contacted the main office (since there was no one at the office where I was that particular day), the receptionist indicated I was supposed to be at the other location. To reschedule would take months; however, she could get me an appointment with Dr. U. (who was new to the practice) the following week.

The next week my husband drove me to what was supposed to be a 45-minute appointment that lasted two hours — Dr. U. continued my appointment through his lunch hour and was genuinely concerned with my health.  I shared photographs of myself from just two years prior and he combed through my medical records as if he was studying for an exam.

Dr. U. immediately changed my thyroid medication, which corrected my heart fluttering problem almost immediately. I had been in the ICU for three days a few weeks prior due to an A-fib and fluttering problem, despite the fact I was seeing another endocrinologist. He felt I was on the wrong thyroid medication and an incorrect dosage. Following extensive blood work, Dr. U. diagnosed me with Cushing’s Syndrome and began a regimen to detox my body from the overuse of steroids. I had to stop my current doctors from using steroids as part of my pain management treatment for my spinal cord injury, Cervical Dystonia and various other neurological problems, as well as for the treatment of MRSA. I was receiving steroid injections in my neck, lower back, and was given prednisone to help manage the inflammation in my sinuses and spinal cord. I guess you could say my body, or I was addicted to steroids in one way or another.

Along with Cushing’s, Dr. U. also informed me I was diabetic. I don’t think I will forget the moment I heard those words. I knew I was overweight and had a family history (my paternal grandmother suffered from diabetes), but I wasn’t prepared to hear those words. And, I had seen at least 12 doctors and been in the hospital and NO ONE had noticed — something is seriously flawed with our medical system for no one to have noticed. However, I began taking medication for type two diabetes. Personally, I felt as if I had never been more of a failure. For months it seemed as if I was completing every type of medical test available; however, each test came back with some rather unique results and I learned more about the damage done from medication, steroids, being an untreated diabetic for several years, an abundance of yeast, and a host of other problems.

I was also seeing Dr. H. who was beginning a unique treatment for MRSA.  I had taken numerous antibiotics that the swab results indicated were MRSA- resistant. Unfortunately, none worked. I also completed a course of a $6,000 antibiotic not leaving the house for three weeks. While taking the medication I literally felt as if my body was shutting down.  If my liver wasn’t hurting, my gallbladder was aching and part of the time I didn’t know if my digestion system was working. If my side wasn’t hurting, my back ached to the point where I couldn’t stand straight. Those three weeks were also spent on two other medications just so I could keep the antibiotic in my body in hopes of getting rid of the MRSA. Sadly once again, that antibiotic didn’t get rid of MRSA, but I knew it had done damage I would have to deal with later. In fact, just two months ago I had to have my gallbladder removed and I know it’s from the damage done from this medication.

Dr. H., my husband and I had a heart-to-heart conversation about next steps.  We knew exactly where the MRSA was — in my left frontal sinus cavity. Dr. H. thought I needed to have a stronger antibiotic ointment injected directly into the frontal sinus cavity every other week. And, so I did, every other Monday for five months. While it was an uncomfortable procedure, I thought this along with another oral antibiotic taken daily as well as twice daily nasal rinses was going to finally cure me of MRSA.

After five months, Dr. H. felt I wasn’t showing the progress needed. Following another swab and a long talk, Dr. H. decided to discuss next steps. We decided on two options:  inject a controversial medication much like the one he had used, but it came with risky side effects, including hearing loss or a constant ringing in the ears. Or, he could perform Frontal Obliteration Surgery, where he would make a cut from ear to ear until the frontal bone is exposed and enter the frontal sinus cavities so he could remove the outer layer of the frontal bone. The cavities’ mucous membranes and diseased tissues are then removed with a drill and the cavities are filled with fat (taken from the patient — I was hoping it would be from my thighs). The passages to the nose are permanently plugged, and the frontal sinuses no longer function. The risk is permanent nerve damage to the forehead among many others, including loss of eye sight, brain damage, etc.

As you can imagine, before leaving the hospital, my husband and I decided on option one. I had a baseline hearing test completed and began the new treatment. If this one didn’t work, I would have the surgery. The MRSA was too close to my brain and was now spreading into my bloodstream.

Following six months of this treatment every other Monday morning, a daily antibiotic and continued nasal rinses, a lot of prayer, improved health with the support of both Drs. H. and U., I am happy and very proud to report at my last appointment Dr. H. believes I am MRSA free! In fact, he doesn’t see me, or I don’t see him, for another two months. I am no longer on medication for MRSA, but continue my daily nasal rinses. While I may not be 100 percent out of the MRSA-woods…he has treated 30 other patients like me and 29 patients have not had a recurrence of MRSA — I hope to make it a perfect 30 (once he has treated 50 patients with this protocol Dr. H. will go public with the results). I have also lost 80 pounds and am on my way to becoming non-diabetic and being cured of Cushing’s.

While I still have work to do, I know I am not alone and I thank God for sending these two wonderful doctors into my life. While Dr. Liar took away parts of my life — Drs. H. and U. have given me my life back in more ways than they will know. I am sharing my story in hopes of making someone else’s life better. And, in some small way if my story prevents someone else from going through what I did then it was worth the journey.  I am healthier, wiser, I have grown closer to God, have a better appreciation for my body, learned more about myself, others and more importantly, I appreciate each and every day I am given.

©My Unplanned Life and www.shakinguplife.wordpress.com. 2012.

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About mswd

I am an individual living with a spinal cord injury. How the injury occurred, how I found out how severe my injury was and how my planned life suddenly became 'unplanned' is included in this blog. Also included is how the injury has tested my family and me. I believe you will discover it has been both a mentally and physically challenging ordeal and I learned a few lessons along the way. While I am still defining my life’s purpose since the injury, I have uncovered those who are injured, live with pain or have other obstacles to navigate are never able to escape. However, come with me as I explore ways to improve my life, learn to live with multiple neurological conditions, educate others and look for the silver lining. I believe with a little willpower, my caring family and God's guidance I will learn to forgive, hopefully forget how I was treated and dismissed by a doctor and uncover life's new purpose. I pray for painfree days and answers to questions that keep swirling through my mind. I also pray for a cure for neurological conditions and for the doctors to treat their patients with respect. Welcome to my journey. I would love to hear about yours!
This entry was posted in Being Thankful, Dr. Liar, Endocrinologist, MRSA, Self Discovery, Spinal Cord Injury and tagged , , , , , , , , , , . Bookmark the permalink.

13 Responses to Medical Confessions, part two

  1. Jean says:

    I am struck by your courage and inner strength. Did you send Dr. Liar a link to your insightful website? And by calling him Dr. Liar, how does it warn others NOT to use this doctor with no name? I was raised that my hometown doctor was a good doctor because my mom said so. This doctor gave me a medication that should not have EVER been taken internally much less the ingredients mixed together in the same bottle when I was taken to a specialist. I am sure it is part of the reason I have medical problems to this day. Just because someone passed the board exams to be a doctor, it does not imply that they did well…some doctors may have barely scraped by passing the exam or maybe they are on their 10th try to pass so they can treat society. I dont want to be treated by a Dr. Liar who probably just scraped by and left hell on earth for you in the aftermath of his failing to provide what would even fall under adequate care.

    • mswd says:

      Jean ~ thank you for your message. One of my greatest regrets is that I am unable to shout to the world Dr. Liar’s real name. That is one reason we took him to court for Medical Malpractice. It wasn’t for the money since in the long run, if he had been found guilty, we would have been given very little compensation — especially considering the Hell he put my family and me through. Unfortunately, since he was found NOT GUILTY by a jury of his peers…I can’t use his real name or the hospital’s name in this blog. What I can tell you, is he lied to us about being board certified and so did the hospital. On the web site he was listed as board certified in neurosurgery and told Harry and me he was, in fact board certified and had been for many years. This lie and fact came out in court, but I guess the jury didn’t think it was of importance. They disregarded this lie along with the hundreds of others. My family nicknamed him Dr. Liar long before I wrote the blog since he began lying to us long before he even entered the operating room.

      I have tried to educate the public via the blog about patients doing their homework on any doctor who treats them. On my ‘Useful Information’ page, one of the most helpful web sites regarding physicians is http://www.vitals.com — this web site is one of the best in allowing patients to comment on doctors confidentally. There are other web sites as well, but this one is user friendly and from my own personal use, isn’t edited. In addition, any one who contacts me personally…I will tell them the real name of Dr. Liar. I can’t publish his name, but I can speak it. The funny thing is one of the number one searches on the blog is Who is Dr. Liar? Although it saddens me I can’t answer it.

      Regarding whether he knows about the blog…I doubt it. He thinks a lot of himself…in fact, when I was his patient he said he was praying for me and gave me a hug after every office visit. Once he knew he had been caught and knew I had gone to Johns Hopkins to find out what was wrong with me he called my cell phone and asked what was going on? A few months later in Discovery…he stated he “barely remembered having me as a patient.” That was a tough pill to swallow.

      It has taken me years to get over what he did to me. With one slam of a mallot he changed the course of my life. In fact, as you know…it’s still changing. However, one day, he will get what’s coming to him. Until then, I actually feel sorry for him. He said he was a Christian, but, that could have been a lie as well. I hope for his sake he has found forgiveness. However, I did a post about a photo I saw of him (and he looked fairly beaten up…not like someone who was enjoying the good life).

      Thanks for reading the post and sharing your thoughts. Again, I wish I could use his name in the blog…some laws are very unfair. 😦 Love ya dear friend.

  2. What a path you have been on. And you are an inspiration. Continued BETTER health to you!

    • mswd says:

      Colleen ~ thank you for all your kind words and for always knowing what to write. I am hanging in there. Every day is a GOOD day, just some days are BETTER. Hoping all is well with your family ~ loving your posts! Thanks for reading!

  3. David says:

    I do Victoza shots and a medicine called Glipizide for my diabetes. I’m seeing a gastro group tomorrow because I have had a stomach ache (like poison on it but tolerable for work, etc.) for a long time. I have two thoughts: 1) I can’t seem to get my sugar under control and the medicines make me feel bad. Food makes me feel better. (Conflict there). Or, … 2) Some long running infection that reoccurs is not really going away and the diabetes keeps me from healing completely. The MRSA sounds really scary but I asked my PA about it last visit but she didn’t agree it was worth a check but they are sending me off to the gastro people. I have constant headaches, hot flashes, chest pain (they’ve done an EKG), coughing now for about a month (tickle cough) and an infection re-occurred that has happened about 5 times and just a little before the time frame of being diagnosed with diabetes. I’m a smart guy and sometimes I don’t like thinking I have an answer to things but I know I don’t feel well and haven’t for a long time. I ignored my health for years when Kim was sick.

    • mswd says:

      David ~ if you have a few minutes, could we have a conversation? I think I might be able to offer some suggestions. I have been through it all. Just got off the phone with my gastro doctor 30 minutes ago (he’s also a great doctor, but we are new in our relationship so I haven’t written much about him…yet). I will private message you my phone number, so we can have a private chat. I would love to share what I have learned in hopes it will help.

  4. Kelly says:

    Can I please have the name of the dr that cured your sinus mrsa. My daughter has been battling this for six months and are about to try the IV. Please help.

    Thanks

    • mswd says:

      Thank you for your message Kelly! I am sorry about your daughter since it’s such a challenging infection. I am happy to say I am 100% cured and haven’t had even the slightest sinus infection since undergoing this treatment. 🙂 The first doctor who diagnosed me with MRSA was Dr. James Palmer at the University of PA (215) 662-2777. When we relocated to VA he referred me to Dr. Joseph Han at Eastern Virginia Medical School (757) 388-6200 in Norfolk, VA. He is the one who cured me. The two doctors know each other well. Sending both names since I don’t know where you live. Dr. Han got rid of MRSA by injecting Bactroban into my frontal sinus cavities…I think it’s okay for me to publicly release the information now. It took more than a year (either every week or every other week)…driving an hour+ each way and, I have to admit, it’s not a comfortable procedure (pressure, headache, etc.). However, I would do it all again if needed. I don’t write about ALL I went through prior to the Bactroban since my posts are already too long. What I will add is that no antibiotics helped and they did a number on my body and has taken a long time to recover! In fact, I am still battling the side effects from the strong antibiotics! Please let me know what else I can do! I wrote about my MRSA ordeal to help others who are suffering! Please keep me posted. Sending healing thoughts!

      • Kelly says:

        Thanks for response. My daughter has tried Bactroban ointment put into Ocean Spray and inhaled. It didn’t work for her. 😦

      • mswd says:

        Thanks Kelly. The doctor put the Bactroban into a device and went up into the sinus cavities in my forehead. He coated the MRSA with the ointment, which ended up killing the infection. It’s a long process and requires the doctor to do it. I tried the Bactroban just in the lower sinuses as well, but it didn’t help. Are you located near the two doctors I recommended?

  5. Dianne says:

    I too have been diagnosed with MRSA in my sinus cavity. I’m currently under medication for the infection. You mentioned a sinus rinse. Would you please let me know what is in your rinse? I’m so anxious to rid myself of this problem.
    Thank you!

    • mswd says:

      Hi Dianne ~ thank you for your comment. You won’t believe what it is…warm saline water mixed with Johnson’s Baby Shampoo. I used a Neilmed squeeze bottle filled with saline water and irrigated several times a day. I warmed it slightly in the microwave and added 3-4 drops of the shampoo. The surfactants help to breakdown the infection. My ENT gave me a prescription for the saline water making sure it was pure without chemicals, chlorine, etc. Since writing this post for the blog, I have heard that Johnson’s wasn’t thrilled with their product being used to cure sinus infections; however, the ‘recipe’ was already out and being shared by many well-known ENTs. Please let me if you have any additional questions and keep me posted on how you do. It is a tough infection to get rid of…but you can do it! Keep the faith!

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