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Seeking help for my father

Annesmith114AAnnesmith114 Posts: 8
edited 08/10/2013 - 9:28 AM in Back Surgery and Neck Surgery
Hi- I am new here. My name is Anne and I have been reading posts from members here & getting SUCH help. A needed insight as this is new to us. I appreciate everyone who takes the time to post here because it helps new people like me who are desperately seeking help/answers/advice. THANKS!
We are in Philadelphia, PA.

My dad is 69 years old and his diagnosis is:
Os Odontoideum/Cervical spondylosis with myelopathy

His problems started in about 2010. He was VERY active up until then & now, August, 2013- not active at all. He basically has no life at all & sits in his home in pain all day watching TV. When is up and moving, he looks like he will tip over and it's very scary knowing a fall could paralyze him. He really needs help quick. In the past 8 or so months, he has gone from bad to MUCH worse.

Starting out at Holy Redeemer Hospital due to his balance problems, we were then sent to Temple University. Temple didn't really give much of a diagnosis- they just said, "he has a broken neck" and wanted us to sign surgery consent forms right there. My dad, who has what they call "white coat allergy" lol, was not happy with the experience there. Our family doctor said no to consent at that time and to seek a second opinion at Penn.

Penn Neurology was great. They explained his condition- degenerative due to age but the C1 being separated/broken and that posed an unusual problem for him as his degeneration was C2, C3, C4 but the issue of the Odontoideum had to be repaired. The degeneration continued up into C1 as well from my understanding. Surgery can only be done with guiding equipment in the OR. So the neurologist at Penn EDIT referred him to another Penn doctor who specializes in this type of repair using this type of equipment.

But I went to Johns Hopkins as research led me there due to their CT scanners built into the operating rooms. He needs two more tests here in Philadelphia- CT cervical and XR with flexion. Then we can get to Baltimore to be evaluated by Johns Hopkins. Our family doctor suggested Johns Hopkins was best option for us as they do have the technology and expertise with this type of thing. Of course, he said Penn was great too but Hopkins does this type of thing a lot more.

I'm not in the medical field so I apologize if I'm unclear on some wording here.

My hope is that someone here can give me an insight as to what a complex surgery like this will do to a 69 year old man. He will be 70 in October. Otherwise his health is good. But I am reading horror stories from people who have had the surgery. My dad has 30 years from addiction recovery and will not take narcotic pain medication. He's what I call, "a tough old Irish guy" and just deals with his pain, avoids doctors, gets dental work done with no Novocaine... He never complains and doesn't want surgery.
However, he is going deeper into depression and accepting the fact that surgery may be the only option to help him.

I've been reading about Prolotherapy- not sure if that's an option for him.

All I seek is to help him get better quality of life. I know I can't make him any younger and he will have some issues. But is surgery the answer? Or will it make him worse? From what I have been reading, people become dependent on pain meds after this type of surgery.

Any help or advice is greatly appreciated. I'm lost here. I wound up here because I love my dad so much- he's the kindest man... it's hard to see him this way & I just need help.

Thanks a million.


Post edited to remove specific doctor's name. Please read the Forum rules


  • LizLiz Posts: 7,832
    I am sure that you will find your time on Spine-Health very rewarding. This site is a powerful and integrated system that is dynamic and continues to grow.
    Here are just some of the highlights:

    - Detailed medical libraries of Articles and Videos that address almost every Spinal Conditions and Treatment

    - The Wellness section contains articles, tips and videos to help patients after surgery and also to help people avoid surgery.

    - Under the Resource tab, there is a section Doctor Advice Health Center which can be invaluable.

    - As a bonus, Spine-Health provides these patient forums. Here is where you can meet thousands of other people who understand and can relate to your situation. You will soon become part of the Spiney family who provide comfort and the advantages of a Support System. You are now part of this family that is approximately 20,600 International members and growing daily.

    - It is very important to understand the Forum Rules to make sure all of your posts do not violate any of the rules.

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    Here are some you should take a look at:
    Read before you post
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    All of this will help make your threads better and improve the times and quality of responses you will receive.

    If you have any questions or need assistance, you can use the Private Message facility to contact any one of the Moderators on my team:






    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Thank you so much! Forum rules were helpful as I did make an error in my first post. Am looking over all the links in the site & wow, what a wealth of information here!

    We are at a crossroads here- either pursue the surgery or not. Three opinions recommend the surgery. But what is life like for a 70 year old man who does not take pain narcotics after such a surgery?
    Of course, the surgery is totally his decision but when weighing out the options of either path, this site is very useful.

    I really appreciate the people here who take the time to post their stories, etc. This is very helpful to a newcomer.
    Thank you!

  • Pain medication , used properly is not a bad thing. I read that your father has prior addiction issues, but there are ways to help prevent relapse, even at his age, should surgery become necessary and it sounds like it is. Someone else can be responsible for making sure that he is following the allowed dosages of any medications that might become necessary, and there are options available for long term pain control if it becomes necessary.
    Don't let what you read here scare you, many of us have had surgeries that didn't turn out well, due to extremely complex issues, multiple issues, and of course, just bad outcomes. There are far more people who have had spine surgery, and done really well and just don't post on forums like these because they are busy living their lives.
  • If your dad just simply refuses any opioid pain killers, his doctor may choose to use Tramadol. It is a synthetic pain killer that is typically used especially for people who have had an addition issue. It's not a real strong medication, but it may help take the edge off for him.

    I admire you for looking out for your dad! Just remember that fusion surgery is tough for anyone at first, so a supportive family is key to having a good recovery.

    You do read a lot on this forum of the bad outcomes from fusion surgery. Part of this is because those who have successful procedures move on and don't rely on support groups for assistance. Many of us continue to have pain and lean on one another to get through. It does make it look like it's all bad but it's really not. Best thing you can do is what you're doing now and that is researching what happens and how to help him get better. Sometimes surgeons tell what they know about recovery whereas those of us who post have lived through it and can say from experience what to expect. We all have different experiences and all have different tolerances for pain. The consideration you should suggest with your dad is would he rather continue to suffer doing nothing, or take the opportunity to correct the problem and most likely, get back in the game.

    Good luck!
    Several Epidurals, L4-S1 360 ALIF, Numerous Facet Joint Injections, RFA x2
  • Thanks for insight. One big thing happened because I joined the site I think!

    I am reading him a lot of what I found here & he is glad that I found this site. He does email but is not an internet guy.
    I didn't want to read him everything & scare him more than he already is but yesterday, he agreed to take narcotic pain meds if needed!! What a HUGE step for him!
    With 30 years of sobriety, he is extremely educated in the topic. Until 2010, he spoke all over the east coast & has helped so many people. I think he feels strong enough to be able to deal with narcotic pain meds because he knows he may NEED them. And has a great support system in that aspect.
    Speaking of his sobriety... we are uncertain as to the OS Odontoideum. When he was drinking, he was in so many car wrecks. Usually he just hit walls & by the grace of God injured no one else. He also fell off a ladder in 1986.
    His recent neurologist suggests this can be a congenital condition as well. Just no clue and could something like that appear 30 years later?
    So he agrees to pain meds, wants to push forward with Penn and Johns Hopkins and is happy that I am here seeking help from real people like him.

    Yes, I am trying to use consideration and respect his opinion regarding surgery. I know this is his choice to make only & I respect whatever he decides. But he is getting worse at such a rapid rate so I do gently let him know no, surgery isn't a guarantee. But doing nothing is certainly a guarantee that he will not get better.

    Thanks a million- I am getting a lot of valuable info here! And again, I appreciate everyone who takes the time to post here.

  • patrain17ppatrain17 Ottawa area, CanadaPosts: 103
    Hi Annesmith114!
    I'm glad to see your father is considering options! Almost 3 years ago, I was diagnosed with a rare condition called basilar invagination related to os odontoideum. If you look up the condition, you'll see that it's a very one where the first symptom maybe death. Anyways, just saying this to tell you that I didn't have many options but surgery. A surgery of that importance is certainly scary and there is a lot to consider. It's really nice to see you help your father the way you are. He will certainly need it. Not saying this to scare you, just being realistic.

    OK! About the surgery. I had a two stage surgery where they removed the bone (os odontoideum) that was pushing against my brainstem and spine and I was then fused from occiput to c3. My surgeon went through my nasal passage ways to do the decompression instead of cutting the throat (anterior). That helped the recovery process a lot although my nose was blocked for a while after the surgery and made breathing harder. I had to wear a hard collar for 14 weeks from the first surgery and was off of work for 4 months. I guess you dad doesn't have to worry about that. Recovery wasn't easy but at age 39, I had the necessary resources to get through it. I didn't use much pain meds after the surgery apart from the days following the second stage and one Tremadol a day for the first month following that surgery. I stopped using Tremadol overnight with no problem.

    After I had recovered and the collar removed I did 6 months of physiotherapy. I can now say that I live a normal life. I'm a teacher and as normally as I can. Of course I'm not as active as I used to be but it's OK. You learn to relive your life. Pain is there from day to day, but nothing I can not live with. Most of all, most of my symptoms and problems have subsided and my condition isn't regressing anymore. You see, this is a good story! It's been almost 2 years since my surgery and things are holding. I will never be able to thank my surgeons enough for what they did and how they treated me.

    If you have anymore questions, don't be afraid to ask. Good on you for helping your father that way and keep encouraging him with positive thinking and kind words. Take care!

  • Thanks SO much, Pat! What an uplifting thing to read & I'm SO happy you have had success in your journey. Very happy and positive to read that- wow! You are just about my age so I couldn't imagine going through what you have- very inspiring that you are right here to talk about it & happy! Wonderful!

    What area are you located? In the US? We are seeking out opinions at this point everywhere in the mid-Atlantic east coast US area.

    Yes, that's the thing for my dad- we know he'll never be "right" again or running around like he was 30 years ago. Maybe he will have good and bad days, maybe he will have to relearn some things. That's all the minor stuff for him. As of now, his balance problems are so bad that one fall could do him in.

    My sister-in-law (she went to medical school for 5 years and then decided to go into the computer industry- lol- so we ask her opinion on a lot), she mentioned the type of surgery you had- through the nasal passage. My dad's current doc said not an option. Of course, we are still seeking out opinions. He is hoping for alternatives & I have scheduled some appointments for that avenue as well. Busy summer!

    I am definitely looking forward to showing him your story and appreciate you sharing it. He's only 69 (70 in October) but his job was sales & his office was at home. He LOVED his work & I saw him going until 80! His company was devastated when he abruptly retired because he was the best in the business. I was SHOCKED when he retired- he didn't tell anyone until 3 months after he did it.
    If his story can be successful like yours, he could definitely go back to work on a contract basis. He's far too social and active- retirement is okay NOW because of his condition but a healthier Mickey (his name) would go crazy being retired.

    Pat, thanks again so much for sharing your story. I look forward to reading it to him. All I can do is find information for him, respect his decisions and love him as much a daughter can! I will do whatever it takes to get this social, kind, generous man back to somewhat of a normal life. I'm so blessed to have him as a dad & wouldn't mind another good 30 years out of him- lol.

  • patrain17ppatrain17 Ottawa area, CanadaPosts: 103
    edited 08/12/2013 - 10:47 AM
    Hi Anne! I live in the Ottawa region in Canada. I had surgery at the Ottawa Civic Hospital and my surgeon (the one who did the decompression) was Dr . xyz He's a pioneer of the endonasal approach and the most wonderful and human doctor I've ever seen. He's really a wonderful human being that really cares for his patients. Before coming back to Canada, where he studied, I know he worked in California and in Pittsburg. Look him up on the Internet and you'll see that he has a great reputation. I'm glad I can be of any help and hope my story can inspire your father. He really seems like a wonderful man himself from what you're saying. Take care!


    Post edited to remove specific doctor's name. Please read the Forum rules
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