VATS fusion T3-4 and T6-7 post-op

jchebert1979 · #1 (**permalink**) 09-12-2009, 02:11 PM

Had the VATS fusion at T3-4 and T6-7 with Dr. John Regan yesterday. The post op pain is unreal. I am having an extremely hard time breathing due to the surgical pain and pain from the chest tube. I can't speak or expand my chest in any way. One mg. of dilaudid every two hours was doing nothing, so they just upped it to 2-3mg every 3 hours.

Even though the post op pain is this severe, the searing electrical pain that was in my chest and abdomen 24/7 for two years causing every breath and heartbeat to feel like I was being electrocuted is gone. The pain from C7-T1 and T1-T2 is still there, but my gamble paid off in that the worst pain was coming from T3-4 and T6-7. If it didn't hurt so bad to expand my chest right now, I would be crying from joy. I really don't know how I held on for so long. I was so close to dying from the pain.

So anyway, because of all of the different doctors I have seen and had surgery with, no doctor in my area will even see me anymore. It really is disgusting the way I have been treated. Dr. Regan has told me that in 6 weeks I will be healed enough to have another surgery, so I will come back to Los Angeles then for a follow up to the thoracic surgery, and have surgery on C7-T1 and T1-2. I am now on short term disability insurance which only pays 60% of my salary, however if need be I can borrow against my 401k to finance the next trip.

I really believe that I will get most if not all of my life back. When I do, I plan on writing a book chronicling this tortuous battle that I had to wage with this broken health care system.

dshobbies · #2 (**permalink**) 09-12-2009, 04:56 PM

After all the suffering you've been through, a great big congrats to you

I'm amazed that though your pain is unreal, you still managed to post the success of your surgery. Please don't push yourself during these first difficult days (or even after). Don't forget, you're facing another surgery soon.

Regardless, glad you've made the right decision- and you're smiling through your pain.

Your pain should subsude daily and soon you will be whole. My thoughts are with you,

Dale

Maria · #3 (**permalink**) 09-12-2009, 05:25 PM

Just reading what you wrote hurt tho I can imagine it remembering the pain of my first open lumbar discectomy.. I know the two areas are quite different anatomically re what is affected and can hurt but I remember my PCP telling me I was going to hate him and the surgeon (PCP referred me to him) for about 2 weeks at least because of the pain.

Long story short I did well post op (first surgery at least) and hope you will as well~ am glad to hear that searing pain you felt has been alleviated and sorry to hear about the surgeons/doctors in your area and the treatment.

The latter brings to mind how I was treated post my failed 2nd spine surgery~ I mean it was like I was a leper.. and to top it off I remember me who was an RN/NP at the time being told by some radiologist in the MRI dept at the local hospital I was "doctor hopping" too much and all I wanted was an explanation of the residual horrendous pain I was left with post op 2nd surgery.

I hope you will write a book.. believe me there are many of us out here that you will be representing!

Ok, 'nuff of that.. hope that chest tube pain eases off and you will be more comfortable ASAP. Am so glad you are getting some relief and thank you for posting and letting us know how're you're doing.

jchebert1979 · #4 (**permalink**) 09-12-2009, 11:11 PM

Thanks guys, not only do I plan on writing a book, but if my quality of life can support it, I am going to return to college and go to medical school.

mmglobal · #5 (**permalink**) 09-13-2009, 01:05 AM

Jason, it's 2am in Munich... I've been running non-stop it seems for days and I really needed some good news. I read right past the ultra-intense post-op pain and on to what seems like great news.

I was going to call you, but I think I'll let you rest... when you feel better, I'll give you a shout. Thanks so much for posting... all the best,

Mark

jchebert1979 · #6 (**permalink**) 09-14-2009, 05:09 AM

If you have been following my story you know that I have been very frustrated by people not being able to understand the extreme intensity of the levels of pain I was in. Since the pain started it was so severe that I was not able to feel any emotions. I could not feel happy, sad, excited, etc. Only severe pain. This was very different from a depression. I would say that this was more something like depersonalization due to severe pain. I will definitely need to seek counseling of some sort when I return home as I am feeling a flood of emotion that is returning that has been completely foreign to me for two years. While most of it is good, I am experiencing periods of complete rage in the direction of the medical care professionals who ignored the correct diagnosis while I was dying from the pain and losing my home a the possessions that I had worked so hard for. Remember the first MRI two years ago diagnosed everything yet the proper diagnosis was ignored and I was written off.

Well anyway, I think the issues that I am facing and will face in the near future will pale in comparison to what I've made it through. I hope everyone is here is doing the best that they can.

dshobbies · #7 (**permalink**) 09-14-2009, 06:00 PM

While it is absolutely wonderful that you find yourself able to concentrate on something other than your intense pain, finding yourself suddenly flooded with emotion can be difficult to handle - just ask any woman going through pregnancy and post partum depression. Though obviously chemically induced, the two are still similar in not knowing how to handle or even identify the emotions you're feeling.

Meditation or deep relaxation is very calming and can help put these emotions into perspective, especially the rage, however justified. Find your happy place and go there often!

And please pace your recovery. Little or no pain can be liberating - be careful.

Wishing you all the best, Dale

nomorepain · #8 (**permalink**) 09-14-2009, 07:41 PM

glad to see you are posting so soon after surgery, it's amazing to me that you can keep us posted so quick after going under the knife!
All the best, souds like the worst is behind you, concentrate on getting
stronger so you can endure the next few days of intense surgical pain.
each day post op is better than the day before.....good luck on a speedy
recovery!

Aaron · #9 (**permalink**) 09-15-2009, 04:24 AM

I don't really frequent this site much due to little on thorasic, but for you who don't know there is a denial in much of the medical community that thorasic discs can herniate or cause pain. Due to the dilegence of patients like this and others on spine health it is slowly becoming a realization that they can cause pain and terrible at that. I have fought it for 5 years, its not that the doctors just disagree they range from there is no way a thorasic disc should herniate to the only way surgury is an option is if you are within paralization. But who is qualified thorasic discs only make up 1% of all disc surguries per year, not really enough to qualify many as experts and with the type of surgury you need you need an expert. There is no money for medical professionals in it yet. I have lived the worst years of my life since I was hurt , 3 years to get diagnosis after I was told the pain was in my head. I was athletic and had numerous injuries and yet I could bounce back and belived i could take on anything, this destroyed those beliefs. I have exercised everyday, do yoga, stretch, have had every treatment know to man and nothing has phased this thoraisc pain. I know exactly what this person talks about because this pain has not put me in the grave , but it has left me dead inside. No emotion, no hope for the future. I graduate in less than a year with duel degrees in engineering and process technology and I just think what kind of life can I live like this. I too was scheduled with dr. regan for Vats surgury last yr. but ins. has stopped it for now. But I was given such hope by this Vats surgury and I hate he had to go through it but I hope it works out great for him and I am (guilty) but excited to follow his progress. Please go on spine health and post to thorasic about your exp. with this surgury they need some hope to.

dshobbies · #10 (**permalink**) 09-15-2009, 05:56 AM

Aaron,

I am so sorry you find yourself having to live with this type of pain. Until I discovered the world of ADRs, I too felt a hopelessness and no joy to life. Insurance companies doom us to this life unless you're fortunate enough to have the funds to go ahead with the surgery anyway, which it seems you do not.

I feel for you and have little or no words of comfort except that maybe one day, your surgery will be covered and you'll be able to live your life pain free. Please hang onto that if nothing else.

We all understand. I'm sending you e-hugs even if they don't bring you any comfort.

Dale

Maria · #11 (**permalink**) 09-15-2009, 03:34 PM

I think when one has flooding emotions for whatever reason the process of going thru it is the only thing that can happen. If it is something that is really difficult to deal with emotionally then pyschological intervention/counseling can be quite useful (I went thru this for 6 month post my failed 2nd spine surgery). I had so much rage that even tho my daily emotions presented more as depression, my dreams were filled with violence and it scared me. Part of that may have been the medications used to treat the nerve pain but I'm sure it was me working out my rage against the failed surgery/surgeon/medical system and in great part my decision to have the surgery. Regret was something that I felt for a long long time.

I think the sloppiness in medicine today is reflective of how the system is functioning overall. Not well. Insurance companies should not be in charge of what decisions are made medically. I know it varies from place to place how personnel are trained and interact with patients/clients but I'd swear things are far more robotic now and patients don't get the respect that they should when walking in the door, let alone through out most of the 2-5 minute follow up medical visits (I will give that first surgical consult is usually given a half hour to hour, first medical visits 15 minutes to half hour).

Doctors still need to listen to their patient and regard the person as the most valuable source of information regarding his or her condition.

mmglobal · #12 (**permalink**) 11-12-2009, 10:02 PM

I just got a call from jchebert1979. He's just a few hours postop from a C7-Th1 ACDF. We all understand that it's still too early to tell but the news is really encouraging so far. "It's so much easier to breathe. "The dizziness is greatly reduced. The lat spasms are gone. The pain that ran up the back of my neck and into the base of my skull is greatly reduced." Again... he just had surgery today, so it's too early to tell. But, nothing but good news so far. He still has pathology at other levels so we will not know how good he he's going to get until he gets there, but this is so encouraging.

Mark

jchebert1979 · #13 (**permalink**) 11-13-2009, 09:28 AM

Thanks for posting that Mark. It's 3am, the nurse woke me up, and I can't sleep so I decided to give an update.

I am feeling much better post-op from this surgery than any other surgery thus far. I was up and walking around with relative ease two hours after surgery. The burning in my shoulder blade and left arm are still there. I can get slight relief from this by pulling my shoulder down. This leads me to think that the pain is not coming from c7-t1, but it is still very early and I know that it will take some time. It's weird though because the surgeon was very surprised that I had the pain.

The massive pain that ran up the back of my neck to my head is probably 80-90% reduced. It is so much easier to turn my head and it no longer feels like I am going to pass out every time I do. Not doctor believed that this was coming from C7-T1 although I was certain of it. I also believe that there were some muscles that were spasmed in which the occipital nerve ran through. I think I was suffering occipital neuralgia because of it.

This morning I was getting some fasciculations in my left lat and the pain had returned a little bit, but not badly and it could have been from a sleep position. Last night for the first time in over two years I was not terrified to try to go to sleep. The pain trying to breath when sleeping has been so bad that I would have severe panic when I would get tired. I also did not have nightmares because of the pain last night which is another first.

All in all I feel much better, but I am taking it with a grain of salt and know that I have a long road ahead. I will be getting discharged around 8 or so and it really feels nice to be able to go straight home and not fly across country. Only time will tell but I am encouraged, and hungry. I ate two dinners last night, lol. I guess it is because there was no pain when my chest/stomach expanded.

Maria · #14 (**permalink**) 11-13-2009, 12:53 PM

Am so glad to hear the news to date! It's very encouraging! Hope all continues to progress in this fashion and thanks to Mark and yourself for keeping us posted

dshobbies · #15 (**permalink**) 11-13-2009, 06:56 PM

This is good news. I know it's early but the relief from pain is so promising. I wish you continued relief in the healing days ahead... just don't overdo.

Dale

Slinkeycats · #16 (**permalink**) 04-22-2014, 06:34 AM

Quote:

Originally Posted by jchebert1979

If you have been following my story you know that I have been very frustrated by people not being able to understand the extreme intensity of the levels of pain I was in. Since the pain started it was so severe that I was not able to feel any emotions. I could not feel happy, sad, excited, etc. Only severe pain. This was very different from a depression. I would say that this was more something like depersonalization due to severe pain. I will definitely need to seek counseling of some sort when I return home as I am feeling a flood of emotion that is returning that has been completely foreign to me for two years. While most of it is good, I am experiencing periods of complete rage in the direction of the medical care professionals who ignored the correct diagnosis while I was dying from the pain and losing my home a the possessions that I had worked so hard for. Remember the first MRI two years ago diagnosed everything yet the proper diagnosis was ignored and I was written off.

Well anyway, I think the issues that I am facing and will face in the near future will pale in comparison to what I've made it through. I hope everyone is here is doing the best that they can.

It's so nice to see others on here that are feeling the same way and understand the unimaginable pain 24/7 that thoracic herniation cause. Then add the lack of an ounce if care from doctors and act like you couldn't possibly be in that bad of pain. My one doc has made really stupid comments like "what's the big deal and what's the rush" when I've tried to get in to get a test or a consult for an option of getting out of this pain, or a specialist. The list goes on of built up hope and dashed with cold ignorance. I have been asked if I had something emotional that is making this worse? I asked what could possibly be worse than this 24/7. They said it couldn't possibly hurt that bad. Wanting to run other tests even because they didn't think 3 herniated discs, one with a tear could be causing this kind of pain or they think I'm lying. I would I stand to gain? I've always been an athlete. I used to be a personal trainer at Chicago Health Club. I was on my 6 mile daily run when this intense pain came on and never went away. Took me forever to find out I had the herniations, but I still have fought to get anything done for me. I couldn't have agreed more and sounds like my exact quotes on here by jchebert1979 I even told several docs there's a huge difference from depression and being in so much pain that you fight just to function thru the pain. This is worse than depression, I still want to do all the great athletics and hobbies I did before that day 3 years ago. My mind craves it and dreams of the day it can live without so many pain impulses bombarding it every waking moment and only being able to sleep sitting up leaning lightly against pillow in chair and have to take sleeping pills and pain meds to even stay sleeping for a couple hours. I fight to survive this dying agony that is my body at only 45 very young being an athlete since junior high. Then I fight doctors from playing me like a full and brushing me off. Then I have to defend my pain to those in my life and I just have no energy left for any of it. I only care about getting better and my pets. If I could be 50%, I'd call that a success. Anything more, would be an amazing gift that seems too good to be true at this point. That coming from someone who never thought me of all people would be living through this. I know people in my life don't really get it or understand it, but that's for them to now care enough to step to the plate and research it and gain the knowledge that helps them get it. Because I have to go thru enough with this unlivable pain and with explaining and defending myself to doctors, I have nothing left to give. This is shaking me to the core and changing who I am. I have to remind myself how strong of a woman I am and that I will beat this, but I have my doubts as 3 years have come and gone and its only getting worse. The longer it goes on, the farther away from the life I loved goes away. My insurance is only in Indiana and my only options are in other states. I'm currently checking into those to make sure they except cash patients.
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Slinkeycats · #17 (**permalink**) 04-22-2014, 04:13 PM

I posted a reply to another member's post about understanding their sentiments and misery. I too am dealing with this unbelievable agony and nightmare of a life right now. I am getting nowhere with these docs in Indiana and realize I'm going to have to travel and pay out of pocket to get any help. My insurance is only in Indiana and realizing its pathetic at best. Hopefully one of these docs that do VATS accept cash patients. Thankfully I can manage this. It's not what I had hoped since I pay for insurance, but all I want is my life back. I have always been an athlete and a very strong woman. I have worked out since I was in 7th grade and am now 45. Until this injury, I was always very very young for my age because of working out. I was on my daily 6 mile run when this intense pain came over me and it was all I could do to get home. Thankfully I was about 5 miles into it when this happened. I came home and iced it and put heat on it, did all the exercises I would have had a client do if they came to me with something like this. I used to be a personal trainer at Chicago Health Club. I also went to school for nursing and did most of my clinical s in physical therapy as I had considered switching my major into that field. I am a day trader now so I don't practice my degrees and very thankful right now because there's no way I could be working like this. But having did all the things that should have helped me, I went to a chiropractor, acupuncture, physical therapy, injections, etc, etc, etc. 3 yrs and counting and I'm only getting so much worse and no closer to getting help if I stay local. I have read good and bad on Dr Regan. Are there any other docs that anyone has gone to and had success with? I question having surgery without them doing a discogram or other tests first to figure out exactly which nerves are being pinched and from what location. Has anyone heard of this North American Spine that does this procedure called Thoracic Disc Neural Decompression. I spoke with someone there yesterday and faxed my MRI to them and down loaded my disk to them as well. I have 3 herniated discs and one has a tear in it. The pain is off the charts every single day and night, but I don't have to tell anyone on this site about that. That's refreshing! Because I feel like I spend just as much time trying to defend my pain to people who supposedly care about me because they couldn't possibly understand what I'm going through. I'm going through it and still find it hard to comprehend. How can anyone survive this kind of pain day to day, night to night? It takes a strong person to try to figure out how to channel it and just get through each day without going crazy. This has shaken me to the core and changed who I am. I am not the major outgoing person and caring about everyone around me. My mind can only concentrate on surviving all these pain signals being bombed at it 24/7. There's little room for anything else. I am a clean fanatic and still manage to upkeep my home, but what I used to get done in a day, takes me a week and that's thru tears and with pain meds. I sold my large beautiful home with an inground pool and amazing vacation feel landscaping last summer because trying to upkeep that with this back was brutal. I downsized to a townhouse by the beach to take that outside maintenance off my back, literally. It's tough just standing because the pain is so bad, but I'm not a sit around person and that would end up sending me into depression. I can't sit anyway, because that's so painful if I even lean against a chair and laying on my back, is out of the question. And trying to use my arms in anyway, even them moving when i walk is excruciating. I'm only 110 lbs, yet my upper body feels like its 500 lbs. if anyone can send me a doctors info and experience with them, that'd be much appreciated. I am determined to get my health and my life back one way or another. This is not living. It's merely surviving and this is not a way I can continue to live much longer.

mmglobal · #18 (**permalink**) 04-22-2014, 08:02 PM

Slinky, I'm so sorry you have to deal with this. I too suffer from thoracic spine issues and when it's bad... it's really bad. Also, when it's bad, the episodes are not short... they last for weeks and months. I'm sure I'm not telling you anything.

VATS took thoracic spine surgeons from the days of open thoracotomies (crack your chest open... split the sternum... move organs aside to get to the spine), to a much, much less invasive procedure that does not involve the open thoracotomy.

I am considering surgery in the T7-8 area but VATS is no longer state of the art for the surgery I need. I'm considering XLIF. Dr. Regan is also one of the early adopters of XLIF and has been doing them for years. BTW, when looking at the good and bad stories you read about a doctor, it's not like a tally or score sheet. It's important to consider each case individually and to learn to set aside "outliers" that have unique issues that make their cases less relevant or irrelevant to the decision you have to make.

I've been dealing with my T-Spine since 2009. Even before that, I've discovered that symptoms of mine that I had chalked up to my C-Spine were actually thoracic. I've been through a fairly exhaustive litany of diagnostic procedures that you might want to discuss with me. These have included facet injections, costovertebral joint injections and ablations, intercostal nerve blocks, a thoracic discogram and most recently thoracic epidurals. What has been difficult is that we have gotten some pretty amazing results, but have repeated the successful injections with little or no success for the subsequent procedures.

Call me if you wish... number on the ispine and GPN website contact pages.

Mark

jsewell · #19 (**permalink**) 04-29-2014, 06:58 AM

Slinkeycats,
I am sorry you are in so much pain and i do remember it well when i was in your position. I am one of the bad reviewers of DrRegan , unfortunately. If you would like to speak with me you are welcome to pm me and i will send my phone number.
Mark is your best source of info and he is also in the same boat so i would really suggest working with him.
Judy

Maria · #20 (**permalink**) 04-29-2014, 06:16 PM

I've lived with horrific pain (in the past) that was so limiting and just really turned my world upside down and all around and my head too of course. Over the years (like 30) things seemed to have calmed down re my back pain and while I do have some flare ups that are pretty intense still they're nothing compared to what I used to experience.

I still have lumbar issues (that was the worst for me) have some cervical issues and according to my OSS thoracic issues as well which I've only occasionally experienced and pretty briefly though a few times the pain was so sharp and slicing dagger like it just made me afraid to breathe let alone move. Every time I read about people's thoracic issues I shudder...

More recently in the last 2 years my feet have limited me greatly so I have once again been dealing with a condition that is greatly limiting and depressing as well as a result of pain/limitations/the whole shebang.

All I can say is that I do hope you will get the treatment needed to improve your spine/condition/life. I'm sure talking to Mark and Judy both would be very helpful to you. take care, Maria