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Trying once again - Wish me luck

Hi All, 

Most of you know me and about my many complications with my thoracic spine.  Quick recap to what brought me to this point.

Two L5-S1 surgeries, second surgery caused damage to my sciatic nerve.  Which lead to spinal cord stimulator with a paddle in my thoracic spine. Then pain pump surgery to help with the pain. Twice I had the pain pump surgery because the first time they put the catheter in my low back vs thoracic.  Then to find out the couldn't put it above the paddle where it needed to be because the leads on the stimulator were in the way. So now I have a pump not doing much. 

I've done PT, chiropractor, steroid injections, burning the nerves, dry needling, second stimulator, acupuncture, shoe orthadics, custom  back  brace and massage with no relief. The back brace does help at times though.

Been shot down by many doctors stating if pain management is saying  osteoarthritis arthritis then they couldn't do anything.  A long going battle with no pain relief which I am now 38.

Anyways, with what brought me to this post.  I made another appointment with a different orthopedic surgeon for tomorrow morning.  My plan is to not mentioning anything about arthritis and say I haven't been diagnosed with anything. Technically I haven't been diagnosed as my pain management just puts what I have said and what they have done.  My chart just states thoracic and low back pain.

What I want to do is start fresh with this guy.  See if he can order a CT scan to be done and what other tests they may be able to do.  MRI is not an option because my stimulator is not compatible.  I know there are other test options but I can't think of any of them now.  Hopefully this guy will be willing to take me on and start from the beginning.  Someone has to be able to find out what is causing all of this.  I do not believe it is osteoarthritis that is the cause.

Between the partial herniated disk, advanced disk degeneration, bone spurs and arthritis there has to be something they can do.  The only relief that I get from this is laying on a hard floor while everything cracks and feels good.

We'll see what happens tomorrow morning.  With my horrible luck I won't be holding my breath.  Maybe I'll get lucky and this will be the one person who can give me options.

Thanks for your time :(

Jason 

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Comments

  • Jason

    I really hope this is the doctor for you, there's one out there, it took me 5 before I found the doctor that I am with now.

    Take care

    Chip

  • Jason,  you know I will be praying for you.  You have been thru so much and are still so young!  

    I like your approach.  Maybe just not telling this doctor about that diagnosis he won’t end up just agreeing and will go into this with a fresh perspective.  Doing his own testing and coming up with new ideas.  

    I know how it feels to have doctor after doctor tell you there is nothing they can do that hasn’t already been tried.  It wears on you after awhile.

    Hopefully this doctor is the one who can change everything!  That’s my prayer for you.  

    Please let us know how it goes.  

    Cindy

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  • memerainboltmemerainbolt IndianaPosts: 4,554

    Jason

    I've always admired you for not giving up. And I agree with Cindy, maybe this is the way to go. Let the new guy figure out what is going on. I'm wishing you the best of luck tomorrow, you are always in my prayers.

    Keep us posted,
    Sandra

  • jbowerjbower wisconsin Posts: 172
    My appt with the orthopedic surgeon went in a direction I honestly never thought I would hear or see!  I wasn't going to bring my CT scan since it is 2 years old but I decided to anyways.
    The Doctor came in and asked me what is happening now and if it is affecting anything in my life. I explained everything to him. 
    He checked out the area on my back where all the pain is and had me do a few things. Then pulled up the CT Scan. He said it isn't showing a pinpoint reason that is causing this but he is sure he knows what is.
    He said that I have scoliosis in 5 vertebrae were the paddle is from my stimulator. He said to diagnose a patient with scoliosis there has to be at least 3 or more vertebrae that is off angle by 5 degrees or more. The five that he showed me are in that stage. It looked weird because one was off with the disc going up and the next was off with the disc going down and so on.
    2 years and I don't know how many people have seen that imaging and no one even pointed anything out to me before this doctor.  
    I asked if I should have a new CT scan done and he said it wouldn't hurt. That will give him the answer he is looking for and confirm what he knows it is. He also wanted me to do a scoliosis imaging test which was x-rays standing in different positions.  I had it done there and scheduled the CT scan for June 25th.
    What he described is going on is with my vertebrae the scoliosis is bending me forward.  My muscles are trying to compensate by bringing me back.  They are working overtime to try and keep my spine in the correct position.  Which is the reason why I feel fine when I get out of bed and gets worse as the day goes one causing all of my pain.
    He said that's an easy fix. He would fuse that area and I will be good to go. No more having my muscles working overtime and thus alleviating my pain.  He said after the scan come back to see him and we'll discuss options going forward.
    I told him I couldn't believe it, that I have been turned away by so many doctors telling me it's arthritis causing my pain and I will have to learn how to deal with it.  He said every doctor has their own opinion but this is my specialty and there is always a reason why someone is in pain. This was why he got in this field because he loves a challenge.  It is as simple as finding the cause and fixing it. 
    He said obviously there is more than arthritis that is causing my pain.  I wouldn't be persistent with seeing multiple doctors if I agreed with them.
    I just couldn't believe when he was talking about my muscles working overtime because that's the same thing I have bèen saying all along.
    I am so happy to finally find someone who didn't brush me off and is willing to fix me.  October 2015 is when I had the stimulator put in that started all of this. Almost 5 years later I find this doctor.  So much agony, pain and suffering because no one wanted to give me the time of day.  
    I am so thankful.  
  • Jason

    I am so glad you kept trying and found this doctor and I hope he can get you fixed, fusion surgery is no fun, but it's a lot better that what you have been dealing with all this time.

    Chip

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  • memerainboltmemerainbolt IndianaPosts: 4,554

    jbower

    This is great news, thank you for sharing it with us. I have scoliosis and the biggest problem is it is bending to the right and pulling the muscle with it. That's where a lot of my pain comes from, the muscle. I am so glad you found a doctor that said I can fix you. 

    Keep us posted and join Surgery Buddies when you know the date.
    Sandra

  • jbowerjbower wisconsin Posts: 172

    Thank you Chip, Cindy and Sandra I appreciate the kind comments.  

    I am so excited to find him.  What's funny, have any of you watched Property Bothers?  This surgeon looks closely like them.

    I cannot wait till after the CT Scan to have the follow up appt.  I'm curious to find out if he will have to remove my stimulator.  I would assume so since the paddle is right where the fusion would be.

    Now I have to do research on thoracic fusion.  I have read some bad stories on here.  He made it sound like no big deal though.  Out of all my past surgeries the longest I stayed off work was 4 weeks but that was my choice.  I would assume recovery time will be a bit longer than that.

    At least with COVID19 I know that I would be able to work from home while being on recovery.

    If things turn out good I will be happy to share.  It seems hard to find people on here that have had positive procedures that helped their pain.  I hope I can even get this pain pump removed in time.  Sure would save me a ton of money in the long run :-)

  • memerainboltmemerainbolt IndianaPosts: 4,554

    jbower

    I put in a request with Veritas for articles on thoracic surgery. As soon as I get them I'll let you know. I could not find any older discussions from members who have had this surgery. So maybe the articles will help.
    Sandra

  • memerainboltmemerainbolt IndianaPosts: 4,554

    jbower

    Below is a link to thoracic surgery. Please let me know if yu need more information.

    https://www.spine-health.com/conditions/herniated-disc/thoracic-herniated-disc-surgery

    Sandra

  • jbowerjbower wisconsin Posts: 172

    Thank you Sandra! 

    Have you ever experienced your pain pump stop working?  Thursday night my PTC wouldn't work and was giving me an error code.  I didn't think anything of it and was going to call pain management in the morning.

    When I woke up Friday morning I felt so sick.  I have never felt so sick in my life.  It wasn't till the afternoon when I could finally see straight again and called PM.  I went into the office where I met one of the Flowonix reps to see what happened.

    It turned out that the PTC didn't sink with the pump causing it to turn off.  They have to upgrade it on Monday.  I cannot believe how bad the withdrawals were and I never want to go through that again.  I couldn't do anything the entire day and didn't feel better till Saturday.

  • memerainboltmemerainbolt IndianaPosts: 4,554

    jbower

    No, I have never had that happen and I hope it doesn't. I've had to go through withdrawals once and that was enough. I hope they get all straight Monday. And I hope you feel better.

    Sandra

  • jbowerjbower wisconsin Posts: 172

    Hi Sandra, 

    I got my PTC upgraded this morning so I am good to go.  I told the rep each time I used it over the weekend I was afraid it would do the same thing.

    I would never wish what I went through to no one.  That was the worst withdrawals I have ever been through. 

  • Jason,

      Bless your heart!  I can't believe that happened to you!  So sorry it did!  Unfortunately I have experienced withdrawals a few times.  When the pain gets out of control and I start vomiting to the point the Zofran does not work, nothing stays down including meds.  As long as I have been on them, I start feeling pretty bad withdrawals within 12 hours or so. When it happens I go to the doctors office or the ER and get a big shot of zofran and maybe a small amount of pain med if I get a really awesome ER doc. But normally if they can get the vomiting to halt long enough for me to get a couple of Dilaudid in me thats all I need.  I get a small script of Dilaudid each month so that if something like that starts, I can head it off before it gets totally out of control.  I used to get 12 but since the crack down, they can only give me 6 and there is always going to be a month that 6 won't cut it.  This month was one of those but I called her on day 2 and she refilled the Dilaudid 2 days early for me.  I told her how much I appreciated her for that at my appointment this morning.

      The anxiety that comes with withdrawals is hard to explain.  The discomfort you feel is like nothing else.  I always wondered what would be the plan if a pain pump stopped working.  I guess at least you were able to get right in and they took care of it.  If it were me, I would ask for a small script of pain meds(maybe 3 days worth) just for your piece of mind.  That way if it ever happened again and god forbid it was the weekend, you wouldn't have to suffer.  I mean we all realize that the ER can not be counted on to help us anymore. 

    I have a question for you.  When I get withdrawals, I also get that ( I know there is a name for it but it escapes me) where everything hurts.  And I am super sensitive to anything touching me.  I remember once at my doctors office they wanted to take vitals before giving the shot and I absolutely could not stand the pressure the bp cuff was putting on my arm.  I mean super sensitive.  I would have ripped it off if they had not removed it quickly.  The doctor told me that was pretty normal for alot of people.  Miserable!

    Enough negative!  I am so excited for you!  I prayed that this doctor was the one who would take the time and be able to turn things around for you.  I hate that surgery may be the answer but remember that surgeries are always being improved so that's a plus.

    Please keep us up to date.  You deserve an answer. 

    Cindy

  • memerainboltmemerainbolt IndianaPosts: 4,554

    Jason

    I have been meaning to ask you, do you have Narcan? My PM doctor had told me, with a pain pump, to always keep Narcan with me just in case something goes wrong. 

  • Sandra, 

    I was focused on the idea that the pump might stop working but never considered that it might give too much meds.  I would have narcan around just in case.  You always think of the thing no one else does and that could save a life!

    Cindy

  • memerainboltmemerainbolt IndianaPosts: 4,554

    Cindy

    If the pump stops working, you will go into withdrawals because you are not receiving the meds. That has always been my biggest fear. Having the Narcan does give a little comfort, especially where I live.
    I hope you have a good day, take care.
    Sandra

  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 327

    Jason, your original post reminded me of a quote or saying by President Calvin Coolidge: “Nothing in this world can take the place of persistence. Talent will not; nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent. The slogan Press On! has solved and always will solve the problems of the human race.” You are an excellent example of this! Jerome

  • jbowerjbower wisconsin Posts: 172

    Hi All, 

    Sorry it has been some time since my last update.  To answer the question on narcan, no I don't have that.  You have to get that from the doctor right?

    I had a CT scan with myelogram the end of June and it was a disaster.  When I got there they put me in a room and forgot about me. After an hour I went to the front desk and the receptionist was shocked no one came to get me.

    Anyways, it took so long because they didn't have anyone there to put the dye through the catheter. They never even had it done before. Either I could reschedule at a different hospital or they could do it the normal way, injection in the spine.  I waited a month and said go through the spine.

    The doctor was the worst. He made it hurt so much, like he was stabbing a nerve over and over. All he kept saying was, "I know it hurts, sorry."  After so long of pure hell I asked how much longer.  He tells me I'm done and that I have to reschedule.  He couldn't get the dye to go through.  Removed the needle and left the room.  The nurse put a bandaid on and kept saying she was sorry.  I got up and almost fell because my right leg hurt so much.  It took 3 days to get the feeling back.

    My surgeon sent another order to a different hospital and it's all set up. This time the correct people will be there and they'll put the dye through the catheter of the pump. Its on the 15th of this month then the follow up a week after.  

    I hope this is the end of a ruff road.

  • jbower - Been thinking of you the last couple of days.  I hope you were able to get a successful myelogram, yesterday (the 15th).  In your last update, you said that a follow-up would be a week later. 

    I hope you are able to get some valid diagnostic information this cycle of testing.  Look forward to hearing any updates when you want to give an update.

  • jbowerjbower wisconsin Posts: 172

    Hello All,

    I had my scan last week and it all went good.  They knew what they were doing so it went smoothly.

    I had my follow up appointment today.  He pointed out the same thing showing that I have kyphosis.  Between 13° to 15° off through a number of the T vertebrae.  Along with bone spurs that makes it look like the vertebrae are a hook shape.

    We talked about all the things that I have tried to alleviate the pain and how nothing has worked. He recommended a fusion from T-7 to T-12 and he will smooth out the disks.  

    He said he is just about 100% sure this will alleviate the pain. That I will be living a much better life.  He did say I can think about it as it would be the same if he does it now or 10 years from now.  I asked how he would do it which he said he will go through the back but it will be a large opening so he can shave down the disks and to fuse it correctly.

    I would spend 3 days in the hospital.  After 3 weeks I would have a follow up appointment which depending on how I am healing he would either start PT then or wait a few more weeks.  He said the fusion should take about 3 months for it to heal up but I am ok to go back to work after the 3 week follow up possibility even sooner if I wanted to since I have a desk job.  Which I can work from home so that won't be an issue.

    I told him I didn't need time to think about it that I want it to be done.  I want my life back and be able to play with my kids without being in pain shortly after.  So now I wait for scheduling to call and then I do the preop appointment with my family doctor within 30 days of the surgery.  Then I'll have a preop appointment with the surgeon and be good to go.  The nurse said they don't have any backlog with patients so I should be able to have this done around the end of August.

    The only thing I don't like is that he does surgery at one hospital only.  It is about 35 minutes away from my house.  So if I have to stay for 3 days it will be a bit hard for my wife to bring the kids out there. :(  But on the plus side I am so lucky to find this surgeon who was willing to find out what was causing my pain and is going to help fix it.  

    On the other hand it's a fusion.  That's going to be one of my worst surgeries in my mind.  6 discs will be fused and I've heard and read so many having to have multiple surgeries with more discs being fused down the road.  Maybe it will be different since this is my T spine where there is very little movement.  

    Anyways, that's where I am at now.  Once I find out my surgery date I will start a new blog under Surgery Buddies.  I will let you all know when I do if you would like to follow my story.

    I want to thank you all for your comments, advice, personal experiences and giving me the motivation to keep on trying.  It took a very long time to be where I am at today and you all have been a great support this entire time.  

    Talk soon,

    Jason

  • Jason

    I hate it has come down to fusion surgery, but you finally have a diagnosis and solution, you will get through the surgery and recovery and then you can play with the kids, and it will be worth all of it.

    Chip

  • memerainboltmemerainbolt IndianaPosts: 4,554

    Jason

    I think, with your attitude, you will do fine. Keep thinking positive!! I admire the fact that you never have given up. And now, hopefully, you will get this fixed and be able to move on. We would love to follow your surgery and recovery. When you know the month of  your surgery, go to Surgery Buddies and click on that month. There, everyone can follow you and there will probably be more members waiting for surgery too.

    Take care and let us know how you are doing
    Sandra

  • jbowerjbower wisconsin Posts: 172

    Thank you Chip and Sandra.  I am looking forward to this and I am hoping I can get this pain pump removed at some point afterwards.  That will be great to get off that and not have to keep going into the office every 2 and a 1/2 months to get it filled. 

    Everything we discussed made it seem to be my best option.  Yes it is a fusion and I can imagine how much pain I will be in afterwards.  But if that means I can get my life back on track with my family and kids then it will be worth it.

  • Jason - Your surgeon's plan to fuse T7 to T12 sounds like a sensible plan.  Yes, I know that extended fusions limit some motion, but I've finally have a huge improvement of quality of life with my C2 to T10 fusion.  Sounds like you have done your research and have trust in this surgeon.  I wish you well and please keep us updated on Surgery Buddies.

    Your too young to keep struggling in pain.  Any way I/we can be of support, please let us know.

  • Jason,  

      This is such great news!  You have a diagnosis, a doctor you trust and a plan to fix things.  That is fantastic!  Give yourself a pat on the back Jason because you would not have found this doctor without perseverance, a good attitude, etc.  one thing I can say about you is there’s no “quit” in you!  

    I just can’t tell you how happy I am for you.  You so deserve this!

    Please keep us updated as I want to know how it goes from one point to the next.

    Cindy

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