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Thread: Invasive lung surgery recovery and care advice for C6 complete quad

  1. #1

    Invasive lung surgery recovery and care advice for C6 complete quad

    I may require a lung decortication procedure that is invasive and carries many levels of risk. The surgeon is uncertain of the post-operative experience with breathing and weening from the ventilator. Managing Autonomic dysreflexia (AD), skin, bowel and bladder all become complications on top of the recovery process that is difficult for able bodied population. I welcome suggestions and insight from those with experience and/or others that have helped a higher level SCI through major surgery. Thank you...

  2. #2

    Pneumonia, empyema & pleural effusion

    This is what I wrote at:

    http://sci.rutgers.edu/forum/newrepl...eply&p=1813117

    Not much is mentioned here on CareCure about pneumonia or bacterial pneumonia for the ones with compromised respiratory related to their injury.

    I have been living incognito for the last 4 months.

    When I got injured in 1987 I was classified as "burst C6 incomplete C7 insufficient respiratory."

    It started July 2nd when I pulled several rotator cuff muscles leaving me in a pain level 9. I tried everything and I was out of my pain medicine. My annual physical was that Thursday, July 7th. So I waited till then for pain relief. My appointment was 7:00 p.m.

    My doctor asked me, "How do I feel?"

    I replied, "Like a train wreck."

    She prescribed pain medicine and I told her I have been coughing a lot with nothing coming out and I want a chest X-ray done to see if I have pneumonia. She wrote an order for an X-ray and prescribed an antibiotic just in case.

    She did the rest of the physical. Before I left the clinic I did my X-ray. By the time I drove home the pharmacy was closed. I had my step-daughter pick up the prescription the next morning and she came home with three antibiotics! So I call my doctor's office to find out what is going on? The X-ray showed pneumonia in my lower left lobe and to take the new two antibiotics for 10 days and if I don't feel better when done to see my pulmonologist. At the end of 10 day I didn't feel much better. My annual pulmonologist checkup was in 10 days.

    My pulmonologist at Cleveland Clinic main campus pulled up the X-ray taken during my physical and a round sac 6cm in diameter (2.375 inches) was noted between my left lung and pleural wall. He was very concerned about it. He told it was an empyema (Sac filled with pus.) and it is something not to neglect and swift action might occur. He checked me over and told me before I leave get another chest X-ray done.

    By the time I got home he prescribed 875mg of Augmentin for 10 days to dissolve the sac and clear up the now bacterial pneumonia. He indicated to me that he was leaving the country for 2 weeks next Wednesday. I returned back to work on Monday telecommuting and he called me at home for me to go in to the Cleveland Clinic for thoracentesis procedure (Fluid removed from the pleural cavity.). The X-ray came back indicating that the 6cm empyema had grown 1.5 times its size from the first X-ray. This empyema started pneumothorax (Collapsed lung.).

    Thoracentesis procedure removed thick pulp like fluid that was difficult to extract out. By the time I got back home my pulmonologist had called me again and told me that the empyema had to be removed. Empyema is a pocket cavity filled with pus. Left untreated it can turn hard. This is something you don't want to mess around with and you must act quickly so it does not turn septic; poison and spread. Once it starts your organs begin to fail and you go into septic shock and it's fatal.

    This empyema has a skin like an orange and inside loculated (Pus sacs like the inside of a pomegranate.). A surgeon has to grind it out. I was admitted the next day for a thoracotomy (Incision to the chest wall, decortication (Removal of empyema and pleural effusion (Removal of infected pleural fluid.)).

    First they put a chest tube between the left lung and plural cavity then injection 500cc of alteplase (TPA) which is a very expensive drug which is used to dissolve blockage in stroke patients. They wanted to see if TPA would break up the empyema. They tried twice with no luck so surgery was scheduled.

    They did the thoracotomy (Incision) and decortication (procedure). I was in surgery for five and half hours with a total of three chest tubes, upper, middle and lower. During the decoration they removed 1.5 liters of infected pleural fluid (plural effusion).

    I spent 23 days in the Cleveland Clinic, 4 days in ICU. I was discharged August 26th with 2 weeks off to begin the healing from the inside out and rest. The thoracotomy left me with an 8 inch incision on my mid side chest swing upwards around my back and 3 chest tube incisions. Today they clamp the incision close and they use human super glue to close the wound instead of stitches.

    When I came home and everything back in the house I took a hot shower, shaved and slept in my own bed. What a great feeling! Some things so simple in life are still great to enjoy!

    The next day I found out that I had a stage II pressure sore approximately 3.5" x 2.5". See attached photo. I put myself on a high protein diet, covered the wound with Siladene, guaze and 2" paper tape. Heal it in 4 weeks. I still check my but everyday.


    Three weeks after discharge in had wound dehiscence 5cm (Incision broke open.). I am on a would vac to help it heal faster and the wound dehiscence looks very clean and healthy. Signs of cut muscle growing together, skin growing to muscle and closing.

    I returned back to work September 12th with restrictive duties.

    I have been dealing with my insurance company, hospital bill errors, visiting nurses, ordering supplies, getting medical equipment, twice a day pulmonary exercises and trying to finish my book I have been reading, Night Soldiers by Alan Furst (As of this writing I finished Night Soldiers and now reading A Game for Assassins by James Quinn.).

    I came home with a peripherally inserted central catheter, PICC line, for Rocephin 1gm/bag IV antibiotic. About a week after completing the Rocephin I broke out slowly with white head pimples all over my face, neck, arms, chest and back. CareCure member OUCH mentioned this in one of his/her posting. I see my doctor on Monday to find out what is going on?

    Pictures of healed pressure sore, thoracotomy and wound dehiscence when first found, wound dehiscence and wound vac covering wound dehiscence and pressure sore stage II.

    I am trying to get back to my normal sci life as I was living before this episode of bacterial pneumonia developed. If I would have skipped my annual physical this year, I wouldn't be here writing this.


    Ti
    Attached Images Attached Images      
    Last edited by titanium4motion; 07-01-2018 at 12:25 AM.
    "We must overcome difficulties rather than being overcome by difficulties."

  3. #3
    Ti - You have my attention! That’s a brutal experience. I’m headed to Cleveland Clinic in 4 days to see a pulmonologist and review my case. Similar start as you described but the plural fluid was not infected. After two rounds of antibiotics, steroids and 5 weeks, my neurological doctor said that I needed to get the fluid removed when he viewed an X-ray of my cervical region to look at healing of a C3/4 ACDF fusion from the previous summer. Accidental finding. I was advised by the thoracic surgeon that I have trapped lung as a result of the plural peal thickening and incomplete expansion of the lung. My options are decortication or try to live with it. There is concern that I may not do well coming off the ventilator as a C6 complete then all of the post surgical issues that you’ve just described. Do you have advice on how to manage my care should the procedure become necessary?

  4. #4

    The Cleveland Clinic

    Quote Originally Posted by Dreamblvr View Post
    Ti - You have my attention! That?s a brutal experience. I?m headed to Cleveland Clinic in 4 days to see a pulmonologist and review my case. Similar start as you described but the plural fluid was not infected. After two rounds of antibiotics, steroids and 5 weeks, my neurological doctor said that I needed to get the fluid removed when he viewed an X-ray of my cervical region to look at healing of a C3/4 ACDF fusion from the previous summer. Accidental finding. I was advised by the thoracic surgeon that I have trapped lung as a result of the plural peal thickening and incomplete expansion of the lung. My options are decortication or try to live with it. There is concern that I may not do well coming off the ventilator as a C6 complete then all of the post surgical issues that you?ve just described. Do you have advice on how to manage my care should the procedure become necessary?
    When I read your thread I did notice you are on a ventilator? Usually at C6 you can still breathe on your own. Or getting off the ventilator post surgery? They had me on a ventilator whiie I was under and they did indicate they may have to do a trach but I was strong enough to breathe on my own after surgery.

    If you can get Dr. Jennifer Ramsey she knows her stuff. Best doctor I ever met in 31 years. After she evaluated me, she was very thorough with my examination on me. She did about 70 different tests on me in the office, simple tests; touching my fore arm, taking off my shoes and socks and checking my feet and touching them, looking in my mouth, listen to my lungs in various paces, pounding on my back for soundness and many other tests. After I left her office I was literally in tears I was so moved by her. Dr. Ramsey had me do a bunch of tests in the hospital and when they were all done I had my follow up appointment with her. She found the root of my problem too.

    https://my.clevelandclinic.org/staff...ennifer-ramsey

    She telephone me at home one day and told me that her job description has changed and she no longer takes out patients, only in patients. So to get her you may have to be admitted for a day and have your referal request Dr. Ramsey. She passed my chart on to Dr. Louti Aboussouan (Ah-boo-swan).

    https://my.clevelandclinic.org/staff...tfi-aboussouan

    His patients are people with neuromuscular diseases and spinal cord injuries. He is very good too. He listens very well and remembers what he said from the previous visit.

    If you have to go for surgery take a cell phone with a camera and have the nurses take a picture of your butt every morning to prevent any pressure sores. Tell the surgeon to close the incision not with human super glue but with staples. Otherwise the Cleveland Clinic is the best in the world to go to.

    Carecure member TomL had some fluid build up in his pleural cavity and he wrote a thread on it. Find him by name and then click on posts he posted.

    Post surgery I had shortness of breathe. I never knew what was meant by it but it will go away in several months with daily exercise after everything heals. You may also experience diminished lung sounds in the lung that has been operate on. That to will go away with time and exercise.

    Do you do pulmonary exercises twice a day? On my link above scroll down to the string Hill-Rom Airway Clearance machine and Cough Assist. That is the equipment Dr. Jennifer Ramsey authorized for me to get. The vest I do twice a day for 30 minutes.

    Who is your doctor at the Cleveland Clinic?

    Ti

    "We must overcome difficulties rather than being overcome by difficulties."

  5. #5
    Hey Ti,

    I do breathe fine on my own currently. The surgeon I met with expressed concern about my body’s ability to effectively come off of the ventilator after four or five hours in surgery due to the C6 level of lung function.

    As you may have experienced, there is a relatively high level of anxiety going into this process. I met with a pulmonologist in Northwestern Pennsylvania and he did not recommend the decortication procedure because of the high level of risk at my level of injury. My right lung has a diminished capacity of about 25% due to the peal that developed on the lung. The plural fluid refills the void after having it drained. There is a lot that I don’t know. I don’t know what the long-term risk and quality of life may be if I choose to do nothing and monitor the status. We don’t know how well my body will perform during and after the surgery. Fortunately, I am in otherwise reasonably good shape. I am not overweight and have never had an open pressure sore since injury.

    I contacted the Cleveland Clinic for a secondary review. I had been there five years ago for heart testing so they have some baseline data. (The cardiac tests were negative. No heart disease at the time) The referral Technitians connected me with Laith Ghazala, MD a first year Fellow. I took the appointment to help get the process started.

    I’m still very green and learning each day. Unfortunately, Dr. Google can get your mind twisted with concern. I have not done any lung or breathing exercises historically. I have been using an incentive spirometer since having the fluid drained. The doctors that I have met with so far have not suggested any type of exercise or breathing practice. Their advice was to go and do what you been doing. No restrictions. It’s doesn’t feel right. I’m still symptomatic with chest pain and pressure. I have not had a fever during any of the early stages of the condition through today. In the shower where there is high humidity it can be difficult to get enough oxygen. I have not had any underlying disease or condition identified nor have tests been run other than the blood and plural fluid.

    Thank you for your help and insight!
    Mark

  6. #6

    The Cleveland Clinic

    Quote Originally Posted by Dreamblvr View Post
    Hey Ti,

    I do breathe fine on my own currently. The surgeon I met with expressed concern about my body?s ability to effectively come off of the ventilator after four or five hours in surgery due to the C6 level of lung function.

    As you may have experienced, there is a relatively high level of anxiety going into this process. I met with a pulmonologist in Northwestern Pennsylvania and he did not recommend the decortication procedure because of the high level of risk at my level of injury. My right lung has a diminished capacity of about 25% due to the peal that developed on the lung. The plural fluid refills the void after having it drained. There is a lot that I don?t know. I don?t know what the long-term risk and quality of life may be if I choose to do nothing and monitor the status. We don?t know how well my body will perform during and after the surgery. Fortunately, I am in otherwise reasonably good shape. I am not overweight and have never had an open pressure sore since injury.

    I contacted the Cleveland Clinic for a secondary review. I had been there five years ago for heart testing so they have some baseline data. (The cardiac tests were negative. No heart disease at the time) The referral Technitians connected me with Laith Ghazala, MD a first year Fellow. I took the appointment to help get the process started.

    I?m still very green and learning each day. Unfortunately, Dr. Google can get your mind twisted with concern. I have not done any lung or breathing exercises historically. I have been using an incentive spirometer since having the fluid drained. The doctors that I have met with so far have not suggested any type of exercise or breathing practice. Their advice was to go and do what you been doing. No restrictions. It?s doesn?t feel right. I?m still symptomatic with chest pain and pressure. I have not had a fever during any of the early stages of the condition through today. In the shower where there is high humidity it can be difficult to get enough oxygen. I have not had any underlying disease or condition identified nor have tests been run other than the blood and plural fluid.

    Thank you for your help and insight!
    Mark
    My surgeon Dr. Silva Raja expressed the same concerns about coming off the ventilator but if you never smoked and took good care of yourself you should do well. It is a concern but remember you are in one of the world's best hospital and they have the doctors ready if anything happens during surgery. My empyema was so large it started pneumothorax (collapsed lung). I had no fever but felt exhausted. My oxygen levels were +95% though.

    The whole time I was in the Cleveland Clinic I was hooked up to an oxygen sensor on my finger and monitored 24/7.

    My honest opinion if you are driving or flying to Cleveland to go to the Cleveland Clinic I'd see a Cleveland Clinic pulmonologist not an intern or fellow. If they want to sit in the office and listen I would welcome them but I'd would see a pulmonologist. A pulmonologist that knows neuromuscular diseases and spinal cord injuries. Sitting in the waiting room there were people from all over the United States seeing the doctors some may have been from out of the country.

    Did anyone or the surgeon say anything about doing your procedure via video-assisted thoracoscopic surgery (VATS)? They make three little cuts and use their instruments to clean you out? They tried VATS on me but due to size of the empyema they did a decortication procedure.

    Are you coughing up green or brown sputum or nothing? Dry coughing with nothing coming up or out?

    Is this pleural fluid causing pneumothorax (collapsed lung)? Do you know your oxygen level? You can buy oxygen meters at Walmart for about $25.

    The pressure sore should have never happened but if you go for surgery make sure a nurse takes a picture of you butt everyday to make sure you don't get one. I never had skin issues before all of this happened to me.

    Ti
    "We must overcome difficulties rather than being overcome by difficulties."

  7. #7
    Senior Member lynnifer's Avatar
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    I don't have any advice .. but my goodness. Pulling for ya!
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  8. #8
    Do you have advice on how to get into the right doctor at the Cleveland Clinic? I’m driving there from PA. I went through the referral network at CC in the first year fellow doctor was the only option they provided with the first available opening. I opted to accept this appointment hoping that it would open the door to a more advanced pulmonologist.

    I never smoked, not a drinker and remain slightly underweight. Overall health has been good considering I’m 52 and fighting age/wear related structural issues from overuse like the disc fusion, shoulder pain and neuropathy.

    I asked if VATS was an option. The answer was yes but we don’t know what we’ll find until we get in there and that will dictate if open decortication is necessary. My oxygen levels have been 96+. I have an occasional dry cough does not produce anything. Primary symptoms are shortness of breath, pain/discomfort in center right chest and back right side. My right lung is trapped in the lower basal quadrant reducing capacity about 20% to 25% and pleural effusion does not resolve when drained due to the trapped lung void.
    If you think that you can or if you feel you can't, either way your right.

  9. #9

    Contact Dr. Louti Aboussouan?

    I have the ability to message Dr. Louti Aboussouan through the Cleveland Clinic Mychart portal. Do you want me to message him and ask him who would be a good pulmonologist to see?

    If so? PM me a brief medical description of your medical issue and how soon do you need to see someone and I can forward it to him.

    I sent you a PM.

    Ti
    "We must overcome difficulties rather than being overcome by difficulties."

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