Hi CathyP

miss maggie
miss maggie Member Posts: 929
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Dear CathyP, I am pasting a copy of a message I sent you. There was some problems replying to your message. Therefore, I am re-sending my response.

Thank you so much for passing on your knowledge to me. I would never have thought about a fellowhip trained doctor. Please believe me, I am not jumping into any surgery. I live in Westchester County in New York. Eastchester, New York. In my opinion, I see there are better Orthopaedic Surgeons at Montefiore Hospital in Bronx, New York. Or Columbia Pres. in NYC. Right now I am seeing an Orthopaedic Surgeon, Dr. David Hirsh. He was listed a few years back as one of the best Orthopaedic Surgeons. He has been treating me for 2 years with Cortisone injections to my right knee. He knows all about me. I trust him. I am not sure if he would do the surgery. He is a bit older now. His associate is Dr. Neil Cobelli.

I am still doing my homework about a doctor. Now I see I have one other thing to check. Thanks to you. I hope you get this message. I will copy and paste to our site. Love Maggie and the best to you also. Thank you for taking the time for me. PS: Not sure I will be able to see anyone Tuesday. A hurricane watch in my area. You too, stay safe. Since you live in Pa.

Comments

  • cathyp
    cathyp Member Posts: 376 Member
    #2
    Yes, fellowship trained
    Yes, fellowship trained surgeons are probably your best bet. For anyone else out there, in the practice I work for we have fellowship surgeons in upper extremeites such as shoulders, elbows, hands and 2 cervical/spine fellowship trained surgeons. It helps they are doing these surgeries numerous times per week. Also, some of our older docs still see patients but have discontinued doing surgery. That may be the case with your doc.

    Well it's raining her in NE Pennsylvania, wind is picking up. Stay safe in NY Maggie. The same for everyone else now...poor New Jersey Shore residents to name one area.
  • miss maggie
    miss maggie Member Posts: 929
    #3
    cathyp said:

    Yes, fellowship trained
    Yes, fellowship trained surgeons are probably your best bet. For anyone else out there, in the practice I work for we have fellowship surgeons in upper extremeites such as shoulders, elbows, hands and 2 cervical/spine fellowship trained surgeons. It helps they are doing these surgeries numerous times per week. Also, some of our older docs still see patients but have discontinued doing surgery. That may be the case with your doc.

    Well it's raining her in NE Pennsylvania, wind is picking up. Stay safe in NY Maggie. The same for everyone else now...poor New Jersey Shore residents to name one area.

    Thanks again
    You are correct. Dr. David Hirsh is fellowship trained. I checked his BIO. Not sure if he still does surgery. I just love him. I had an appointment with him today. He and I both cancelled because of the storm.

    Cathy, how are you doing? I see you have power, otherwise you wouldn't post. I lost power Monday evening at 6. Power returned to my house Tuesday morning around 10 AM. I couldn't believe how fast it came back on.

    Please stay inside and be safe. Especially the trees outside our homes. My old willow tree still stands, hooray. You live in Pa, I know.

    Love Maggie
  • cathyp
    cathyp Member Posts: 376 Member
    #4
    miss maggie said:

    Thanks again
    You are correct. Dr. David Hirsh is fellowship trained. I checked his BIO. Not sure if he still does surgery. I just love him. I had an appointment with him today. He and I both cancelled because of the storm.

    Cathy, how are you doing? I see you have power, otherwise you wouldn't post. I lost power Monday evening at 6. Power returned to my house Tuesday morning around 10 AM. I couldn't believe how fast it came back on.

    Please stay inside and be safe. Especially the trees outside our homes. My old willow tree still stands, hooray. You live in Pa, I know.

    Love Maggie

    All is well here, never lost
    All is well here, never lost power. We lost all our old trees in storms before this so luckily, no branches or trees down today. We are so lucky, we were spared.
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #5
    cathyp said:

    All is well here, never lost
    All is well here, never lost power. We lost all our old trees in storms before this so luckily, no branches or trees down today. We are so lucky, we were spared.

    Storm

    Cat,

    I am glad things were very mild there during the movement of the storm up the east coast. I was in Charleston during Hurrican Hugo, a Cat IV. The National Guard took control of the whole coastal region. Decades before, my aunt had her beach house swept to sea by Hurricane Hazel, which hit near Myrtle Beach. No remnant of the house was ever found. Our sub riding under hurricans could feel turbulance at a depth of 150 feet, so these things can be rough !

    I read in your response to Maggie that you work for spinal surgeons. I have been told by all of the IM and generalists whom I have asked that my back in inoperable, and in fact it has never had surgery. Chiropractors as well have told me they are of no use in my situation. All of my issues were trauma-induced.

    I had a compression fracture at T-9, and two disks, one at T-8, and one at T-10, are 90% collapsed. I got trauma-induced scoliosis, and a kyphotic deformity at around T-1. My entire right chest cavity caved in, with a flail chest, and both scapulars were broken, along with 13 ribs. My left femur was mutilated, but that is irrelevant to this question. My sternum is offset secondary to the flail chest. NONE of these injuries has ever been treated (none were castable). The entire spine is full of arthritis.

    Everyone has told me that "rods" and such are of no use in my situation. In your experience, is my back something that a surgeon could fix ? This is "unofficial," of course, and I know that you cannot speak for the doctors per se.

    max
  • miss maggie
    miss maggie Member Posts: 929
    #6
    Max Former Hodgkins Stage 3 said:

    Storm

    Cat,

    I am glad things were very mild there during the movement of the storm up the east coast. I was in Charleston during Hurrican Hugo, a Cat IV. The National Guard took control of the whole coastal region. Decades before, my aunt had her beach house swept to sea by Hurricane Hazel, which hit near Myrtle Beach. No remnant of the house was ever found. Our sub riding under hurricans could feel turbulance at a depth of 150 feet, so these things can be rough !

    I read in your response to Maggie that you work for spinal surgeons. I have been told by all of the IM and generalists whom I have asked that my back in inoperable, and in fact it has never had surgery. Chiropractors as well have told me they are of no use in my situation. All of my issues were trauma-induced.

    I had a compression fracture at T-9, and two disks, one at T-8, and one at T-10, are 90% collapsed. I got trauma-induced scoliosis, and a kyphotic deformity at around T-1. My entire right chest cavity caved in, with a flail chest, and both scapulars were broken, along with 13 ribs. My left femur was mutilated, but that is irrelevant to this question. My sternum is offset secondary to the flail chest. NONE of these injuries has ever been treated (none were castable). The entire spine is full of arthritis.

    Everyone has told me that "rods" and such are of no use in my situation. In your experience, is my back something that a surgeon could fix ? This is "unofficial," of course, and I know that you cannot speak for the doctors per se.

    max

    Gee
    Good morning Max,

    At the very least, all the doctors and chiropractors have been very honest with you. There is always some quack out there that will promise you the moon.

    I know how difficult it is living with just arthritis of the hip. What do you do to make your life livable??? I cannot imagine it. I feel some what guilty just reading your post.
    I do remember, or I think I remember you mentioning an auto accident in a prior post.

    I hope today is a good day for you. hugs and love Maggie
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #7
    miss maggie said:

    Gee
    Good morning Max,

    At the very least, all the doctors and chiropractors have been very honest with you. There is always some quack out there that will promise you the moon.

    I know how difficult it is living with just arthritis of the hip. What do you do to make your life livable??? I cannot imagine it. I feel some what guilty just reading your post.
    I do remember, or I think I remember you mentioning an auto accident in a prior post.

    I hope today is a good day for you. hugs and love Maggie

    To Maggie

    Maggie,

    Actually, I take nothing for pain. I also have ossification of the hip (abnorminal bone spines growing in the soft tissue), and had to have my knee cap reattached. Ortho doc did say that if the ossification got too bad, he would cut it out, but that it frequently grows right back, so I have held off on having it cut out. It has been there 25 years, and only flares up about once every two years or so, but when it does, I have had swelling the size of half a grapefruit, and could not wear pants for a day or two.

    Your memory is good: it was a car wreck. I went out of the driver's window, and the car rolled over me. My ortho surgeon at the time had done a tour in Vietnam, and he told me once that "he had seen more fractures, but not in someone who lived."

    When I have acute pain episodes, I have found Mobic to be the most effective thing. It is similiar to Celebrix, but fewer side effects. Plus, Celebrix never did me any good.

    Give Mobic a try if you need arthritic pain relief,

    Thanks for the hug as always,

    max

    .
  • miss maggie
    miss maggie Member Posts: 929
    #8
    Max Former Hodgkins Stage 3 said:

    To Maggie

    Maggie,

    Actually, I take nothing for pain. I also have ossification of the hip (abnorminal bone spines growing in the soft tissue), and had to have my knee cap reattached. Ortho doc did say that if the ossification got too bad, he would cut it out, but that it frequently grows right back, so I have held off on having it cut out. It has been there 25 years, and only flares up about once every two years or so, but when it does, I have had swelling the size of half a grapefruit, and could not wear pants for a day or two.

    Your memory is good: it was a car wreck. I went out of the driver's window, and the car rolled over me. My ortho surgeon at the time had done a tour in Vietnam, and he told me once that "he had seen more fractures, but not in someone who lived."

    When I have acute pain episodes, I have found Mobic to be the most effective thing. It is similiar to Celebrix, but fewer side effects. Plus, Celebrix never did me any good.

    Give Mobic a try if you need arthritic pain relief,

    Thanks for the hug as always,

    max

    .

    In the dark
    Dear Max,

    I am in the dark about "Mobic". What is this and where do I purchase it??? I hesitate to take Celebrix because of the heart issue. I don't have heart problems, and certainly don't need to. Anyway, I am going for hip surgery as soon as I get my ducks in a row.

    Thanks Max, hugs again. Maggie
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #9
    miss maggie said:

    In the dark
    Dear Max,

    I am in the dark about "Mobic". What is this and where do I purchase it??? I hesitate to take Celebrix because of the heart issue. I don't have heart problems, and certainly don't need to. Anyway, I am going for hip surgery as soon as I get my ducks in a row.

    Thanks Max, hugs again. Maggie

    Mobic

    Maggie,

    Mobic is a perscription NSAID, or anti-inflammatory drug. Your doc will be very familiar with it and can advise whether it is a good choice for you. It is different enough from Celebrix to be considered a bit safer. As I said, it worked pretty well for me after trying Celebrix, which I considered worthless.

    Bless your choice and the doctor's response to you,

    max
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #10
    miss maggie said:

    In the dark
    Dear Max,

    I am in the dark about "Mobic". What is this and where do I purchase it??? I hesitate to take Celebrix because of the heart issue. I don't have heart problems, and certainly don't need to. Anyway, I am going for hip surgery as soon as I get my ducks in a row.

    Thanks Max, hugs again. Maggie

    Celebrix...
    Hi Maggie,
    About 8 years ago my PCP put me on Celebrix for my Klippel Feil Syndrome. After only 2 doses I experienced bleeding in my bowels and had to quit taking it immediately. Internal bleeding is rare, but it DID happen to me. I would try something else and avoid any chance of adverse side effects. Just thought I would share what I experienced. Love you...Sue
    (FNHL-2-3A-6/10)
  • cathyp
    cathyp Member Posts: 376 Member
    #11
    Max Former Hodgkins Stage 3 said:

    Storm

    Cat,

    I am glad things were very mild there during the movement of the storm up the east coast. I was in Charleston during Hurrican Hugo, a Cat IV. The National Guard took control of the whole coastal region. Decades before, my aunt had her beach house swept to sea by Hurricane Hazel, which hit near Myrtle Beach. No remnant of the house was ever found. Our sub riding under hurricans could feel turbulance at a depth of 150 feet, so these things can be rough !

    I read in your response to Maggie that you work for spinal surgeons. I have been told by all of the IM and generalists whom I have asked that my back in inoperable, and in fact it has never had surgery. Chiropractors as well have told me they are of no use in my situation. All of my issues were trauma-induced.

    I had a compression fracture at T-9, and two disks, one at T-8, and one at T-10, are 90% collapsed. I got trauma-induced scoliosis, and a kyphotic deformity at around T-1. My entire right chest cavity caved in, with a flail chest, and both scapulars were broken, along with 13 ribs. My left femur was mutilated, but that is irrelevant to this question. My sternum is offset secondary to the flail chest. NONE of these injuries has ever been treated (none were castable). The entire spine is full of arthritis.

    Everyone has told me that "rods" and such are of no use in my situation. In your experience, is my back something that a surgeon could fix ? This is "unofficial," of course, and I know that you cannot speak for the doctors per se.

    max

    Oh boy, the server didn't
    Oh boy, the server didn't like my first response to your post so I'll try again!

    I wish I had the expertise or experience to be able to give you an answer. That is way beyond my scope. Have you gotten any of your opinions from a teaching hospital? I think, in general, they area good option for complicated cases. I could try to get our spine surgeon nurses' and or PA's to look at your post and see what they say. They would know if they have had a similiar type patient.
    Wow, you certainly have a lot on your plate. I wish you good health and pain free days.
    Cat
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #12
    cathyp said:

    Oh boy, the server didn't
    Oh boy, the server didn't like my first response to your post so I'll try again!

    I wish I had the expertise or experience to be able to give you an answer. That is way beyond my scope. Have you gotten any of your opinions from a teaching hospital? I think, in general, they area good option for complicated cases. I could try to get our spine surgeon nurses' and or PA's to look at your post and see what they say. They would know if they have had a similiar type patient.
    Wow, you certainly have a lot on your plate. I wish you good health and pain free days.
    Cat

    Treatment
    Cat,

    I felt after I typed my enquirey to you that it was unfair and I sort of regretted it. If the staff do not want to say anything, I certainly understand. I am used to being an oddity of sorts.

    I went for an x-ray a few months after leaving the hospital following the wreck, and as I waited for the tech to see if my films were ok, I kept seeing staff from the back peek around the corner at me in the waiting room. I finally piped up and asked one "Is there a problem ? What is going on ?" He said, "The tech who x-rayed you was getting eveyone to look at your stuff; no one could believe it, and we wanted to see what you look like. Some of us have a bet going that it was a motorcycle, right ?"

    Some say I may have clinically died at the scene, since there was a "black" period when I was unconscious, and I later regained consciousness at the scene, and was awake all the way to the ER, and during most of my time in the ER. I was also blind that whole night following the wreck. No one has explained that for me yet either. A week later in ICU, I was awake one night and heard myself being Coded over the PA system.


    If anyone at your practice does care to comment, thanks, but if you just want to forget about it, I understand.

    I rate my breathing problem from the chemo as worse than the ortho stuff at this point anyway.

    Nice of you to respond,

    max

    .
  • miss maggie
    miss maggie Member Posts: 929
    #13
    Max Former Hodgkins Stage 3 said:

    Mobic

    Maggie,

    Mobic is a perscription NSAID, or anti-inflammatory drug. Your doc will be very familiar with it and can advise whether it is a good choice for you. It is different enough from Celebrix to be considered a bit safer. As I said, it worked pretty well for me after trying Celebrix, which I considered worthless.

    Bless your choice and the doctor's response to you,

    max

    MOBIC
    Dear Max,

    Thank you so very much. You have no idea how much I appreciate all the information and help I receive on this site.

    I wanted to make an appointment with the orthopedic surgeon for this Thursday, Nov 8. Guess what??
    Another storm in heading for the east coast. This Wednesday and Tuesday. Not a hurricane, but lots and lots or rain. Maybe snow??? I will make an appointment for the following Thursday, Nov 15.

    Cathy, How wonderful and nice of you to go the extra mile for Max. Me too, thank you again.
    Did you hear about the storm coming our way. I know you live in PA. Let's keep our fingers and toes crossed.

    Hugs again Max. Love Maggie
  • miss maggie
    miss maggie Member Posts: 929
    #14
    allmost60 said:

    Celebrix...
    Hi Maggie,
    About 8 years ago my PCP put me on Celebrix for my Klippel Feil Syndrome. After only 2 doses I experienced bleeding in my bowels and had to quit taking it immediately. Internal bleeding is rare, but it DID happen to me. I would try something else and avoid any chance of adverse side effects. Just thought I would share what I experienced. Love you...Sue
    (FNHL-2-3A-6/10)

    Oh MY
    Dear Sue,

    How horrible, bleeding bowels. Something happened to me in Sept 2009, small bowel perforated. That's when I was dx with NHL.

    After I sign off, I have to look up Klippel Feil Syndrome. Thank you for sharing your experience.

    Sue, I never met you. I wish I could and would love to meet you. I feel so close to you. Even though there are miles between us, I feel your love across the miles. I am an emotional person and full of love. I just always tell how I feel.

    Love you too. Hugs across the miles. Maggie

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