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Old 05-05-2006, 07:40 PM   #1
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Question In trouble and don't know what to do next.

I am 33, married, and up until last December very active. I was driving home one evening and both my upper back and lower back began burning. It kept getting worse and worse until it literally felt like something caught on fire in me. I spent a few days on the floor not thinking much of it. Thought it would go away...

I will skip ahead to not bore you with the details.

The MRI showed a large herniated disc between t6-7. Nothing in the lumbar. 2 NS and 2 Ortho Sugeons later, I still have had very little done for me. The cortisone shots helped. But I am still ruined. Currently, I have gotten my pain level somewhat under control, but I am still unable to do anythign in life that I enjoy. I am debating surgery.

I started 75 mg lyrica last week. I am also on a small dose (5 mg) of lexapro which also provides surprising relief, but I have to take it with Nexium as it tears up my guts. Since starting the lyrica, I have not taken a single Vicodin. Ultram makes me crazy. I told the doc to give me back the vicodin or I would be taking the .357 magnum pain cure. Guess he believed me.

So, I am now walking 3 miles a day, and have lost about 15 pounds. Can't do much else though. Can't even sit on the couch... have to lay on the floor. Did I mention I am 33? I am however still improving... but it is sooooooo slow. And improvement is measured by things like... I was able to sleep on my stomach last night and only woke up with a pain level of 2! Whew hoo! Where did my life go?

Next week I am scheduled to have dye shot into the discs. With my 80/20 insurance plan, all I have done is throw money at the doctors, and although they need to make payments on the new Mercedes, it is getting old. So, here is where I need the advice.

Question 1.) I have been told that this thing may heal on its own. After reading the long thread on thoracic injuries, that seems like a false hope to me. Has anyone ever gotten their life back by waiting?

Question 2.) I have been told by 1 doc he can't do anythign for me, and the other 2 told me they would crack my chest open and deflate my lung to fix it. BS! The fourth doc told me that he would go through the back, take part of my rib, and use it to fuse the vertebrae. 3 days in the hospital. I figure with my 80/20 that should be about 10g's. Could pay it, but it will be devestating. Willing to do it if it will give me back my life though. Any suggestions?

Question 3.) Been reading about a guy named Doctor Jho in Pittsburgh. Sent him my MRI and he says I am a candidate for his microsurgery. I would be out in a day and it is only a small cut. No fusion. Asked my other doc about it and his response was that microsurgeons have created a lot of parapalegics doing this. This is in a vascular watershed area and it is largely a frowned upon surgery by other NS's. Jho's called back and I shared this concern with them. They responded that other doc's don't know what they are doing, and Jho walks on water, yada, yada, yada. Have any of you dealt with him on a thoracic surgery? What happened?

I am willing to do just about anything or nothing. I just want to know that I am on the road to recovery, whatever that may be. Thanks for whatever help you can give me.

-john

 
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Old 05-06-2006, 06:10 AM   #2
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Re: In trouble and don't know what to do next.

Hi Luther.... First, read all of the thread THORACIC BACK PAIN which has 77 posts... I guess thoracic problems are not as uncommon as everyone thinks... I too have a herniated disc at T11-T12... My spine dr told me that the herniation does get re-absorbed and your body does heal, BUT, it takes up to 2 years and of course, if you dont re-injure it... So, as long as the pain is somewhat manageable, I suggest that you let it heal and dont expect overnight results.... Also, go see a good Physical Therapist that specializes in spine AND is Mackenzie certified which can help push herniation away from nerve by doing special stretches... Also, will show you what NOT to do (no lifting, good posture, etc)

I would forget about anterior surgery / cracking chest, removing rib, etc... This should be absolutely last resort, and only if something happens where you loose bodily functions, etc... I read about Monty44's experience and he says DONT DO IT as it gained him nothing but more trouble..

I dont know much about Dr Jho, but did see his site.... I would ask him for references and also ask him personally how many people had poor results... I wonder why some doctors tell you they need to go through front, and others tell you they can go through back... Perhaps anterior method is the OLD way of doing this operation? Not sure why they cant access it from back... I cant understand how some doctors say that Dr Jho's method create lots of parapalegics using minimally invasive methods, but that full blown anterior method doesnt?? Doesnt make sense to me... If one Dr says that they will crack open chest, move heart, deflate lung, remove rib, and another says that they will insert a small tool and make incision, I would think that the first option is MUCH more dangerous and could result in more problems due to the complexity of what they are doing...

Also, what did you do to get this? Heavy weight lifting or any falls / accidents / trauma weeks earlier? I think mine was due to heavy weight lifting..

Let me know how you make out.. I am interested in hearing how you make out, and pray that all goes well...

MM

 
Old 05-06-2006, 07:42 AM   #3
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Re: In trouble and don't know what to do next.

Hi John and welcome to the boards. I have DDD and a fusion at C-4 C-5 with my own harvested hip bone. I have facet dysfunctions in my lower back, along with some nerve damage and arthritis thrown in for good measure. The problems with back surgery, from what I have been able to see, is that while the surgerys themselves have gotten more advanced and effective, the prognosis is the same as it ever was, I.E., you may get better. you may get worse, or you may have little to no change. makes it kind of hard to keep our hopes up! I would say that if nature is going to favor anyone, it will be someone like you who is keeping active to the best of your ability and leaving no stone unturned in your quest for information and relief. There are people on these boards that have had pretty much every back surgery avalible, I'm sure you will get all the info you need to make an informed decision. I would like to offer you my friendship and moral support, also you may want to drop by the chronic pain boards, lots of us there are back patients as well. Take care and good luck, Fabby

 
Old 05-06-2006, 09:53 AM   #4
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Re: In trouble and don't know what to do next.

Luther,

I dont have thorasic issues "yet" and hopefully will not. Yes, I too had read and was told it can heal on it's own and could take up to 2 years to do so. I gave it the time and also tried every conservative treatment around to which many cost me thousands of dollars out of my pocket, not covered by insurance. I avoided surgery as most of us do and it is a last resort. And the last resort can mean, you've had enough of the pain.

I had the discogram done and it is the test that discovered my problem. I have DDD with signs of degeneration at L4-L5 but also L5-S1 bulging disc. We all assumed it was the bulging disc causing the pain, but NOT! The dye was injected into the bulging disc 3 times and never caused any pain at all. Then they injected dye into the L4-L5 and I had horrible pain, much like I had been having only so much worse. That is a normal response for this test.

My doc gave me ZERO sedative during this treatment. He was well experienced in discograms and was as quick as he could be. But he prefers not to give any meds during this treatment so there is less mistake in diagnosing where the pain is coming from. I dont want to ever have to have this test done ever again, but would if needed. I have a high threshold of pain, and this just about killed me! I could not wait to get back to my room for them to give me some morophine to ease the pain! I think you need to know what to expect and I hope you don't experience as much pain as it caused me. But know that little bit of pain is worth it if it can rid you of the pain you have been living with all this time!

Ultram.. oh boy! Keep that stuff away from me and percoset too! Both of those make the puke my guts out! I take vicodin too and skelaxin for spasms.

I had a fusion done at L4-L5 just over two weeks ago. Things are going okay I think. I have had some residual leg pain, and am interested if Lyrica could help with that. He gave me prednisone medrol pak to see if that would help. It has, but not nearly enough and now that i am back down to not being on it, the pain is beginning to increase again. I will call him on Monday to get something new, which he said he would provide it the roids didnt work. So i appreciate your information on that. I have read others that have gotten good results from the Lyrica too.

All docs are different. I had one tell me that I had DDD and would have many years of agonizing pain and to "live with it". She was an ortho spine surgeon. I let her treat me for two years. Then after she told me that, I began my search and found the right doctor that I thought could best help me. I am confident I have chosen the right one. Time will tell.

You have 80/20 insurance. I hope you have an out of pocket maximum then coverage kicks in 100%. Go with with our instincts Luther. You know yourself and comfort zone. So choose a really good surgeon, which ever one will bring you some relief.

Let me know how your discogram goes. I will be thinking of you and know you will come through it just fine.

 
Old 05-06-2006, 03:53 PM   #5
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Re: In trouble and don't know what to do next.

Hey guys, thanks for reaching out to me in my decision making process. I should tell you that Luther is my German Shorthaired Pointer (and my best friend), but my name is John.

Wow, I thought I was going to be unconscoius while they did this and they were going to just track where the dye went. You are telling me I am going to get tortured again? And have to pay for it? Went through that with the Cortosone injections. Think I am going to give the Lyrica some more time before I sign up for the concentration camp method of medicine.

As of right now I can... Go to work, walk 3-6 miles a day, do some minor work in the yard, sleep comfortably at night, drive my pickup truck w/o much increased pain, learn the harmonica, and do some minor tinkering. Pain level seems to live now btw 1-2 most of the time, although sometimes it drops to almost imperceptable.

What I cannot do... Sit on a couch, sit in a recliner, mechanic or do carpentry work, lift anything, or drive my Saturn. I love to work on projects and it is driving me crazy now that I am feeling a bit better (because of the drugs masking the problem) and still can't do the things I have lined up to be done.

Just found out earlier this week that my wife is pregnant for the first time. Will I be able to lift my own child?

What did I do to myself? Great question. When I figure it out, I will let you know. Might be helpful to avoid ending up here again, don't you think? My best guess is that it wasn't any one thing. I have been restoring a 1973 Steyr-Daimler-Puch Haflinger for my wife. The body is at upholstery, the chasis in my garage, and the heads as the machine shop. And, the mechanic has been laying on the living room floor now for 6 months. My guess is that all the time on the concrete, pulling, wrenching, and twisting probably added up to do me in. So, it is a mass conspiracy.

Here is what is nagging me more than anything else. When this came on, I felt the same excruciating tearing and burning in both my lumbar and thoracic. The thoracic MRI shows a bulge. The lumbar does not. As I am hurting right now, it is the lumbar, something that is showing there is nothign to be done surgically. What is wrong with me? I wonder how much of this is soft tissue damage. I let one of these butchers get in there with a blade, that isn't going to improve anything.

This is also the first time that I have heard 2 years to recover. Where did you all hear that? I believe I am through the worst of it and I am willing to be patient if that is what it takes. I am seeing improvement... sometimes. Do I just need to be more patient? Or should I just suck it up and let them do the medieval needle torture on me? Please consult your crystal ball and let me know. I am dyeing to know what to do (pun intended).

Thanks.
John

 
Old 05-06-2006, 04:53 PM   #6
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Re: In trouble and don't know what to do next.

Hi John,

You can still give it time and be patient, and still undergo the needle treatment to have a better understanding of what is going on in there going forward. The not knowing can be a pisser. You sound like me. I could do some stuff but not others that I really wanted to do. I let time go by was not getting any better and often worse. You will know when you have had enough and need more of a chance at relieving your discomfort or pain.

I heard the two year schpeel from docs and also reading online. The body can heal itself of many things but must have the optimum environment to do so. Most of us on this forum, time has not been our friend.

Let's chat some more on this. My name is Tammy. Look forward to talking more with you. I wish you wellness.

 
Old 05-06-2006, 05:48 PM   #7
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Re: In trouble and don't know what to do next.

Hi again, John, and hi Tammy! I also had the discogram (3 times ) and found it pretty medieval, lol. They did give me demerol during mine, but it was still unpleasant. Still, every person is different, you may have a better time of it. So you don't have a diagnosis, and are not sure what caused your initial pain? Thats what happened to me too, I was 32 years old, in good shape, married with 2 small sons and my own business when I started having horrible burning pain in my neck and arm. I was treated for a torn trapezoid muscle for months before they finally did an MRI and found the disc was ruptured. My life has changed a lot since then. I lost my business and in fact am unable to work now. I have pain everyday. I was lucky enough to find the doctor I have now, and for the past 11 years I have been trying to hold on to as much health and hope as I can. I have DDD, so more surgeries are a given in my future, but I can put them off by staying as active and in as good a shape as possible. I raised my sons, not able to do a lot of the things I would have liked with them, but they have grown into very nice young men and are probably more helpful and empathetic people than they would have been if they had a healthy mom. For right now my advice to you would be to take it one day at a time, don't worry about the stuff you can't do anything about. Try and keep your spirits up and keep yourself as healthy and active as possible while you search for some answers. If you run into dead ends, don't give up, there is always another way, something else to try. I'm sure you will find as I have that these boards are full of people with similar problems and you can get some great advice and support. I usually post on the chronic pain boards but I will watch for your posts, let us know how you are doing!~Fabby

 
Old 05-06-2006, 06:13 PM   #8
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Re: In trouble and don't know what to do next.

While I don't have a thoracic herniation I do have several lumbar and had several cervical none of which were ever re-absorbed. Lord how I wish they would of!. I've had the lumbar hernations for over 8 years now with nothing done to them at this point as they are small and didn't increase (but didn't reabsorb) and the cervical was probably about 10 years before I had to have an ACDF when the herniations grew so large in a short period of time and were causing severe pain. I have never been told one could recover from a herniation, if anything I've been advised the opposite from many doctors that the chances of the herniation increasing and some level of impingement is likely the longer the herniations are left. I guess it is possible, just never heard of it. I know mine have not really gotten worse in terms of the lumbar so I guess that's some level of hope.

I think folks gave you some good advice and the only thing I'd add is I would seriously avoid the doctor in PA, most doctors like him do think they can walk on water and will always talk down any other doctor who believes their practices are subpar or unsafe. Because it's not a common surgery I wouldn't rush right out and do it.

Unfortunately the majority of individuals who have back problems have had to give up various things in life which is quite sad. Of all general health problems I really feel back problems are the hardest to cope with compared to other health conditions. The idea of operating or not is a personal one and I think it comes down the quality of life and how one is coping at the time. My herniations aren't too bad and don't cause nearly the pain my cervical ones did and therefor I've not done anything for it. I imagine one day I may need surgery but am putting it off as long as possible.

 
Old 05-06-2006, 06:37 PM   #9
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Re: In trouble and don't know what to do next.

Hey John... good to see that you have a sense of humor in all of this..

In your first post, you mention a large herniation, but later mention a bulge... Is it actually a herniation? I know some doctors use this term interchangeably, but a herniation is where the "jelly" oozes out of the donut. A bulge is just a bulge, that perhaps could herniate if not taken care of..

As far as where I got the 2 years... My spine dr told me this... I was told that the herniation gets reabsorbed, as long as you dont keep squishing it out again..... I am going to PT that is Mackenzie trained, and is showing me how to do excercises to push herniation away from nerve.. Cortizone shots seem to help, but they were not painful at all... In fact, they gave me slight sedation where I was still awake, but before I knew it, they were done, and didnt even know it.....

Seems that you are doing ok, so keep doing what you are doing, but dont get too confident... I was feeling good a while back, and started to do yard work as usual, and lifted a carpet and ended up in the ER, so now, I hired a guy and just smell the roses ;-)

Be well..

MM

 
Old 05-06-2006, 08:20 PM   #10
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Re: In trouble and don't know what to do next.

Hey guys, thanks for all the great posts in helping me figure this thing out. Let's see, the docs have used the word bulge, rupture, and herniation all intechangeably. As far as I know, it is NOT leaking from what they have said. I have decided that I am going to call the hospital with the torture table and see if they are going to sedate me at all. Geez, I bet the guys at Gitmo aren't getting half of what I am in for. All I am guilty of is getting up one day and going about my life.

What was the guy's name in Hellraiser with all the pins in his face, anyway? I keep thinking of him as I imagine going in for this test.

Well, I will have to think some more about it. I am not happy to hear that time is not my friend. I was hoping to wait this one out. Anyone heard of anything negative about the Lyrica long term? I know it has only been available for about a year, but I am just wondering if I am going to start my own tumor garden with the stuff. It does work though. I suppose if it kills me my wife will be rich. Always a silver lining. I am just a ray of sunshine!

Well, got to do some target practice this afternoon and test out some handloads. For being beaten up, I am still feeling pretty darn good. No pain meds in 5 days since starting the Lyrica. That doesn't mean I am not hurting, just not enough for Narcs. Have a couple more days to research this before laying out on the slab. Will let you know what I decide to do.

grays and peas,
John

 
Old 05-08-2006, 12:28 PM   #11
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Re: In trouble and don't know what to do next.

Well, talked to the doc today about the discogram. She said she uses a heavy have with the Versed and I probably wouldn't remember any of it. So, looks like Denver here I come. I will let you all know what happens.

John

 
Old 05-08-2006, 04:01 PM   #12
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Re: In trouble and don't know what to do next.

Hey John,

I'm more of a cervical and lumbar gimp, but I read the thread and thought I would chime in. I did the wait and see on both my neck and lumbar and, unfortunately, time was not my friend. I will say this -- I started out with only a bulge in my L5-S1 a year or so ago -- mostly back pain and some shooters in my legs, but not too too bad. I did PT for about 4 months, lost some weight, started doing lots more walking and exercise and was feeling significantly better.

Three weeks before my discharge from PT, the high-speed water ferry I take to work hit some pilings in the water and stopped short. I was seated at the time, but had to go straight to the ER afterwards because of the pain in my legs. The ferry ended up herniating the blasted disc so that it was sitting on my nerves. I had the misfortune of a central herniation, so the pain was on both sides of my body. I have no idea why this happened to me, whether something in the future would have pushed the disc out, but I spent 5 months in extreme pain before having surgery. I did 3 epidurals, PT, acupuncture, had multiple MRIs, X-rays, and an EMG. I was taking Vicoden for the pain and they gave me Ultram, which didn't help and made me feel crazy. Mostly I didn't take the pain meds during the day because it made me stupid and I had to have my wits about me to work. It felt like my legs were in a trap and I wanted to chew them off. I couldn't even sit at work and spent months standing. Then I couldn't stand. Then I couldn't walk without a cane.

Having already had one spine surgery, I was no cheerleader for having a second. In my case, I couldn't live in the pain and my condition was clearly worsening, so it wasn't a tough decision. I am only 37, married, (was) very active and had been trying to become pregnant. Clearly that ain't happening! I had NO idea how debilitating back/leg pain could be. So I had the surgery three weeks ago. Still in pain, but less in some ways. I don't regret it, but recovery is slow and I worry that the fusion won't take. I'm being verrrrrrrrrrrry careful.

On a positive note, I had another disc herniate after my cervical fusion. I managed that one with PT only and it seems to be back in place, at least for the past couple of years. Minor flare ups, but manageable. That was a herniation too, not a bulge. It only bugs me when I get on an airplane or take a long drive. Or when it is about to rain.

Now that you've heard my sob story, here are some things worth considering -- some questions you should ask yourself and your doctors.

1) What if you don't have a surgery? Are you at risk for further nerve damage? Not to scare you, and I don't know about thoracic herniations, but if you do have nerve damage the chances of your nerves healing/regeneration lessens some the longer you wait. One of the surgeons I consulted told me that if I had pain for > 1 year, that sucker wasn't going back in to place on its own.

2) Should you have an EMG? It's a nerve conduction test (yes you are awake but it really doesn't hurt when they stick little pins in you) that helps discover whether you have any problems with your nerves resulting from the herniation. I didn't have a discogram because no one thought it was necessary but if having a diagnostic test will help with the diagnosis and does not have any risks, it might be worthwhile.

3) If you are feeling better after doing more less-invasive stuff and can afford to, insist on another MRI. Have it done at the same place you had the last one at and ask for the two to be compared. I would want to know whether the interventions helped and whether on a scan everything looked better
4) If you do consider the microsurgery with the Pittsburgh doc, ask him for some references of patients who had it done and are willing to speak about it. If he can't provide that, I would wonder. Also, there are sites on line where you can look up a docs history. We are not allowed to post web sites here and my doc was in NYC, but you should be able to find out how many lawsuits have been levied against your doc in recent years. All surgeons get sued at some point, but in NYC I was able to tell whether my doc had any cases of malpractice brought against him in the past five years and whether settlements were average, below average or above average. You could start with the state's medical board to find this out. It should be public information.

I guess I am writing a book here, so I'll end by saying I hope you find relief soon and I feel for you being restricted in what you can do. It just ain't right. Enjoy the Versed. I had it for my epidural injections and it knocked me out completely. Or so it seemed.

BTW, I haven't heard anything about Lyrica long term but my hubby has been on the drug that came right before it and also manufactured by Pfizer, Neurontin, for years for diabetic neuropathy. The only side effect I have noticed is that his memory isn't that great.

Hang in there,
Schragie
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Old 05-08-2006, 04:56 PM   #13
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Re: In trouble and don't know what to do next.

Wow. thanks for such a long reply. I have also been thinking about getting another MRI to compare it. HOwever, I have learned the difference in the type of radiating pain from inflamed tissue, and this bulge. It feels like a screw being tightened in my back. It is definately MUCH more tolerable on the Lyrica, but it is most definately still there.

I really like the last doc (#4) I saw. Think he will be my cutter, but I am getting a fifth opinion. They screw this up I truly am ruined for life. At 33, that is a long sentence to serve.

I was also wondering about what would happen if I left it alone. Talked to the spine imaging clinic today and they said that time rarely does anything. At least they were honest. But, they weren't pushy either. Just the facts. I asked her to look into her crystal ball for me and she told me it was in the shop for repairs. Oh well.

Well, don't know what the future holds, but I know Who holds the future, so I guess I will just try and trust that for now. Hard to give up being master of the universe though. As Red Green likes to pray... I am a man, but I can change, if I have to, I guess.

I will let you know what happens. Think I will definately go through with the test though.

John

 
Old 05-12-2006, 02:38 PM   #14
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A tale of five doctors...

Been now to five surgeons... they all have different ideas about what to do for me. Think I have finally decided on one. He is the one who oredered the discogram.

The test was not nearly as bad as I had expected. Yeah, it hurt, but not anything like the cortisone injections. Its not something I would want to do every day, but it also is not somethign to be afraid of.

Also, what it found was that I have 2 disc problems, not one. The test was worth having. The catscan also showed no improvement of the bulges over the last 6 mo. Surgery is imminent. The good news is that I have been told that surgery, as nasty as it will be, will solve the pain causer in my back. I am going to schedule the date.

If you are in the Denver area, I would HIGHLY recommend the Doc that did this test. His name is Dobrow, and he works out of the Aurora Med center. He talks in plain English, and he tells you what he thinks. It was a refreshign experience. Also, I think the surgeon, Dr. Jamrich, the more I learn about him, the better he sounds. THe op will be done through the back. He is the only one who has offered this approach.

Wish me luck.
John

 
Old 05-12-2006, 04:25 PM   #15
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Re: In trouble and don't know what to do next.

Hey John:

Sorry to hear that surgery is in your cards, but it's really good news that you found some answers and some docs you're comfortable with. I feel like I am starting to do better 3 weeks post-op because I am starting to go stir crazy. That's a good sign!

I found that once I had made the decision to schedule the surgery and got an actual date I started feeling less depressed about my situation just knowing relief was on its way. I also did tons of research beforehand so that I knew exactly what they were doing to me. My first checkup is on Monday and I am SO excited to actually get in the car and go somewhere. Pretty pathetic, I know, but as I said I am stir crazy.

Good luck and keep posting. Glad the discogram wasn't too bad for you.

Schragie
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