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Old 09-04-2008, 09:19 AM   #1
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Now what the heck do I do?

Well this morning has been wild and very interesting. Some may think I am a gluten for punishment but I had to seek another opinon on my back and although this new doctor agrees I have failed back surgery, he has given me HOPE. The new doctor ordered a EMG, which has been scheduled for Oct. 7th. He has also ordered a bunch of blood work to rule out that I have nothing else going on causing neuopathy. Depending on the results of this EMG, it will determine whether I need a 3 level fusion or not. He would recommend removing all the existing hardware, doing major removal of bone opening the canals wide open for the nerve, and doing the levels below and above my existing level. I had a fusion 20 years ago and they feel that it need re-stabilization.

Then I saw my surgeon, he recommended a 3 level fusion but going thru the front this time and then flipping me over and operating on the back. So the surgery from the front would be done one day and then 3 days later they would operate on the back.

To be honest, I don’t know how I feel – at least I have been given HOPE and not just a lifetime of medication. I almost feel that I have to consider surgery. This would be back surgery #5.

Thanks for listening -- never a dull minute. As my Dad says, I always do stuff the easy way.

Last edited by ms_west; 09-04-2008 at 09:20 AM.

 
Old 09-04-2008, 10:49 AM   #2
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Re: Now what the heck do I do?

Sorry for what you are going thru. Hope you find some clarity in making your decision on drs. I am only at surgery #1 but still having some issues. Hope this isnt the road ahead of me at 35 yrs old. Time will tell. Bless you for all you are going thru.
Shannon

 
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Old 09-04-2008, 10:57 AM   #3
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Re: Now what the heck do I do?

Hi Diet..
Wow..you sure can get hope from this type of opinion...I guess you have to seriously consider this surgery..even though it sounds very major...
I know that you have already checked out the new surgeon...
I wish you success in whatever way you choose to go with this new information...the HOPE alone is enough to make the day sunnier...I do understand...

Leslie

 
Old 09-04-2008, 11:09 AM   #4
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Re: Now what the heck do I do?

Pepper,

Wow, that really is a different answer for you. I think you have to give it serious consideration. It would be a big surgery with a lot of risk, but they are making advances with medical procedures every day. I hope I'm allowed to say this, but if it was me I'd pray about it. You will be in my thoughts and prayers as you go through this very difficult decision making process.

Tigg.

 
Old 09-04-2008, 11:59 AM   #5
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Re: Now what the heck do I do?

Diet, dear,
I understand your frastration. I just want to ask you one question: how come that such decision can be made only on EMG test?
Everyone knows that EMG tests are not accurate and all depends who is doing them... I had 3 EMG tests done during 5 month done by 3 different Neurologists and all 3 of them had different results?
I would understand if discogram would be performed, MRI and CT - that is what they done to me before they sent me for 3 levels fusion. But just based on EMG test????

I hope you will go to see another independent DR in a different area... always a good thing to do before you make any decisions. This concerns me to be honest with you - to make such determinations based on EMG test...

Best of luck to you!

 
Old 09-04-2008, 01:25 PM   #6
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Re: Now what the heck do I do?

Hi, Pepper.

Long time, no posts from me. I've been lurking.

Hey, I've been thinking about all of you spineys, but especially YOU because we've had surgeries on or near the same dates at least twice and we've shared some good chats. Funny, but I feel just a little bonded to you.

Anyway, that's some big ideas to consider. Oh, I hope you know I feel just a pinch of what you might be feeling right now... hope, fear, reluctance, wanting to hide your head in some sand - on a beach maybe? , fatigue with this whole darn, unending process of trying to get your life and health back... Deep breaths. I keep believing that we are only given what we can handle in this life. You are one strong woman!

So, my cyber-wise-one, you KNOW the next steps : get another opinion, perhaps another, talk with your family, and feel in your heart and gut if this is the right thing for you.

I can share my update as abbreviated as I can: original T6-7 fusion 2/07: failed, revision & foraminotomy 1/08: success! Body did NOT like the hardware. Removed 7/08. Now, I have some residual (probably forever) deep thoracic bone pain from surgery #1. NO RADICULAR PAIN!!! Body's glad to have hardware out. Still have terrible muscle spasms. I'm working on those. But, I just have to be optimistic that we can figure something out. I am BLESSED with an amazingly caring surgeon who is committed to my success.

I tell you this only so that maybe you see some hope. I know I haven't been through nearly what you've been through. But, my original surgery as a 33 year old athlete did not go as planned, clearly. I've had to learn plenty in the world of patience, forgiveness, restraint, self-care, and more. You could probably write the book! Anyway, I'm just saying that I'm nearing the end of my bumpy road - hopefully. I'm not going to have the same abilities I hoped for, but I've made my peace.

Maybe this new surgical opportunity/recommendation could give you the freedom you deserve and are looking for?

My very, very best to you,
Margaret

 
Old 09-04-2008, 01:51 PM   #7
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Re: Now what the heck do I do?

Diet, you must be completely blown out of the water with this new plan being presented to you. I have joy in my heart from the hope that this could be helpful to you, but along with that is some trepidation. Like Moldava, I am also wondering how they can base such a big surgery on the outcome of a test like an EMG. I realize that they are looking for permanent nerve damage of course, but I also know that I had 3 EMG's and NONE of them showed any kind of nerve damage even tho I had no reflexes in my right leg at all. I did have permanent damage and my right leg is weaker than my left one is.

I'm sure you will see at least one more specialist in hopes that he will agree with this one. My gut feeling is that this guy might be right; if your problems are basically mechanical I have always wondered why your doctors were telling you there was nothing to be done.

No one can tell you what you should do as this decision is 100% yours, with input from your husand and family. I am having surgery on Wednesday because I can't see anything else I can try and I refuse to live in pain if there is hope that it can be diminished or wiped out. This will be number 7 on my spine but I have never had more than 2 levels done and 3 is really big. I know you will give this all the thought that is needed.

My prayers are with you.

Carol
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2 lami's, 3 fusions
bone spur removal
cerv. fusion, 1 level
morphine pump

 
Old 09-04-2008, 02:00 PM   #8
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Re: Now what the heck do I do?

Pepper, I agree with Moldova. I would urge you to do some research about alternatives to fusion as well. My mom just read an article that argued that there were so many new ways to deal with spinal issues, that fusion surgery was becoming "history" so to speak. . . The article argued that no one should get a fusion if they didn't have dangerous instability (ie the spinal cord could be damaged). So, I hope you will look into all the alternatives and seek multiple independent opinions before going down the fusion road. I wanted to add that, obviously, surgeons do surgery, and they believe in it. Some PMs think surgeons created some of the pain they treat.

I imagine that going up on the meds and getting a real PM doctor, as well a getting a little taste of *life* again has led to many questions about your future and what kind of life you're going to lead -I know you said you really hadn't been thinking about much besides than trying to get through the day before and that now you were thinking about a lot of stuff you hadn't been thinking about previously - I can imagine that you're struggling with the idea of really being a CP patient long term [the meds and the PM doctor must have made it *real* in a different way for you, and now you're struggling to figure out what you can and can't do, what's permanent and what's not, and what your life is going to look like. Forgive my psychologizing here, and just tell me to back off if it doesn't feel right, but is some of the impulse towards getting a fusion and "fixing the underlying problem" (I don't feel like a fusion really does this since each fusion makes your spine less ?natural or less like the original) something of a rebellion or resistance to the process of "becoming" a CP patient? I'm asking in part b/c I think you want to be careful about making any big decisions while you're trying on this new identity (that none of us want) of a CP patient. I'm not trying to discourage you from exploring and researching ways to fix the problem so that you won't need to take meds - if you can find a cure, or some way of fixing the spinal problem, I think everyone here would be very happy for you. On the other hand, I would be cautious about rushing into anything right now. If you're trying to avoid becoming a permanent CP patient and feel some urgency about this, you might make a decision that you wouldn't make at another time. I hope this makes some sense. I could be completely off about all this.

The surgery you're considering is a *big deal,* - I'm sure you don't need anyone else to tell you this. You probably don't need other people to tell you that many people found that a fusion made their pain worse rather than better either. Obviously, some people have benefitted from fusions and it might help you immensely. You are the only who can decide if it's the right course (hopefully with some research and several *independent* opinions from to notch doctors. The good thing (if I understand the situation correctly) is that it isn't urgent - i.e. you don't have to have surgery b/c you might not live if you don't, and you're not in excruciating pain now (maybe there is a reason why you need to do this quickly, but I don't remember one) I just want to urge you not to let some of the inevitable psychological issues that are coming up now to cause you to move faster than you otherwise might. I don't know if a part of you is thinking that if you can just get a surgery quickly, you won't become a CP patient, but that if you wait very long, you will have CP for life. To be perfectly honest, I don't know enough about pain or how the chronic pain cycle gets started to know if it would make a difference in your chronic pain if you had surgery sooner rather than later. I hope we'll be hearing more about what you learn and decide - you might even ask your PM doc for a name of a top-notch surgeon for a 2nd/3rd opinion. I think she's first-rate and a referral is more likely to be a top-notch surgeon as well. It helps a lot if they don't know each other and aren't worried about stepping on their colleagues toes..depends on the culture of course - nuerosurgeons tend to be exceptionally competitive..OTH, I found that they absolutely refused to contradict another surgeon's interpretation in a large met. area. I don't know what the culture is like in your area. If I were going to do a fusion like this, I would be searching for a opinions and looking for a doctor who was highly respected and on the cutting edge (like your PM). Just my $5;-)

Last edited by Confused089; 09-08-2008 at 10:55 PM.

 
Old 09-04-2008, 05:26 PM   #9
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Re: Now what the heck do I do?

I need to clarify that my new doctor and old surgeon are not basing this on this one EMG. They are basing it on all my records, my current condition, and a mylegram done last May. Based on those decisions they want to make sure that I do not have anything else going on that could be causing the nerve pain.

My surgeon said today, he would have never let me go this long had he of seen my mylegram that was done last May. His partner ordered the test and my surgeon never saw the results. He feels based on my anatomy, I am not built like the average person, I have two extra vertebraes and where the spine is connected to the hips joint is abnormal. My old surgeon also stated that he had debated at my last surgery about doing a 3 level but went with the least invasive. So all of this coupled has changed my surgeon's opinon. The new guy is giving me a brand new opinon completely and he feels that I should have had a 3 level fusion done at my last surgery.

The EMG is being done to make sure there is nothing else going on in addition to the mechanical issues. They are also running a slew of bloodwork checking for other things: thyroid, B12 deficiencies, diabeties, etc. Hope this explains things better.

Margaret, I have so wondered what happened to you. I am glad that things are doing better for you sciatica wise and pray that all the rest will come in time.

Carol, yes I am blown away and so thankful that I went ahead with more evaluations. I left my surgeon 2 months post op because of the way he was talking to me -- very negative about my recovery and never went back to him. My hubby encouraged me to go talk to him and I am glad that I did now.

Tigger, yes we are allowed to pray for one another just not discuss our views indepth from my understanding so if you don't mind I would welcome the prayers.

Shannon, I pray that you don't have to go thru this but I encourage you to treat your back like it is crystal. Don't lift or bend. Take care of it. Listen to your body if it hurts, STOP and try again tomorrow. Take care of yourself consider this an investment in your future. I don't know your story completely but one thing I have learned is everyone heals on their own time table. Some may take 2 years to heal while others heal in 12 weeks or less. I will pray for you if you don't mind. I am here for you if you need anything at all.

Sage, yes I think I have to consider this. Thankfully I have time to sort it all out. The pain I have been living in I do not wish on anyone. It has been so hard to keep my head high and not fall apart. I can't imagine living in this condition forever. I know in my heart I that I might move ahead with the surgery but I have to be real and realize I will always have some pain even if the surgery goes well. Think about it I have had alot of surgeries and each time they go in scar tissue is created which equates to pain. I also feel I have to do some soul searching and prepare myself for what if it does not work out.

Thank you for your support and listening to me. I have alot to sort out and figure out. All I know is tonight I will go to bed with HOPE for the first time in months.

Last edited by ms_west; 09-04-2008 at 05:31 PM.

 
Old 09-04-2008, 06:27 PM   #10
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Re: Now what the heck do I do?

HOPE IS HUGE!!!

I've had my days and weeks and months of living without it and it stinks. Hang on to that feeling, Pepper.

 
Old 09-04-2008, 06:45 PM   #11
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Re: Now what the heck do I do?

Diet: I just want you to know that my dad had 2 major back surgeries (9 hours each) 7 days apart. The first one was from the front, and they basically cut him in half. He had something like 40 surgical staples from that one. They had to put in rods, hooks, cages, the whole 9 yards. He's fused from T6 through T12. He was actually going to have the second posterior surgery 2 days later, but he had a bad reaction to the pain medication and they had to wait 7 days. He didn't have any problems at all from having the back to back surgeries. It is too bad that the surgeon doesn't think he can get it all from one angle. Probably two opinions on this issue are warranted.


My family really questioned the wisdom of having two separate surgeries, but the end result was really positive for my dad and his pain was eventually dramatically reduced due to the surgery. It sounds like a really really hard decision to make for you. I hope that you are able to make a good decision with your family, and it is one that you all feel comfortable with. It would be really great for you if you could find a treatment (even a surgical one) that would allow you to live in less pain. If it were me, I would give it very serious consideration. Best!

 
Old 09-04-2008, 08:12 PM   #12
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Re: Now what the heck do I do?

Whoooaaaa - thought sounds scary - do you know what the success rates are for this type of surgery - I have elected to have a lifetime of medication because everytime I have something done it seems I have to have another surgery due to some complication - I am so worried about you - please be very careful - I am sure you are careful but I am a worrywart
huggs Aver

 
Old 09-05-2008, 12:26 AM   #13
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Re: Now what the heck do I do?

Pepper,

Even before I saw you last post, I thought about the "hope" factor and felt a bit badly that my post came across as sounding anti-fusion, cautionary and not exactly hopeful! I honestly don't know enough about your condition, what you've been through, where your pain is coming from, whom you have consulted with, etc. to have any idea if you have alternatives to a fusion or if a fusion might be really helpful for you. So my post was mostly based on the little I've read (not much since my fusion) and my own experience. I've been so impressed by your PM doctor and I was surprised to see you were thinking about a serious surgery.

I did not want to write a post that might take away any of your hope (even a teensy tinesey bit!). I agree w/ Chatterbox - hope is so important. It sounds like you have done plenty of research and you have a lot of experience with surgery and spine issues. I'm sure you will make the best decision for yourself. At any rate, I didn't intend to throw cold water on the hope you expressed! It didn't occur to me that you might be looking more for support and some shared excitement about possibility of finding a solution rather than using a band-aid. Good luck. Hope you will keep posting about this.

Last edited by Confused089; 09-05-2008 at 05:30 PM.

 
Old 09-05-2008, 03:42 AM   #14
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Re: Now what the heck do I do?

What your saying pepper is two doctors are recommending surgery again?
Wow, After all the pain & now this.
At least you have more pain control & do not have to rush into anything.
This was unexpected. I have to say if this happened to me I would be having so many conversions with myself my husband would proabably commit me,lol.
I am excited that you have an option & feel very emotional that you have hope. Looks like things are really turning around for you lately, amazing what prayers can do. god bless, Sammy

 
Old 09-05-2008, 05:39 AM   #15
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Re: Now what the heck do I do?

Pepper,

Wow, hon that is a lot to digest after all that you have been through! Forgive me here but what levesl are they planing to work on and revise?

I do know that my Aunt, who has severe scoliosis, it runs in my family, had two surgeries almost back to back and they actually kep her sedated for the time in between the surgeries. It was because they wanted her to heal better and stay still.

She is so much better now and goes for a 3-5 mile walk every day.

I can't even imagine what your head must be thinking, but I know what is was like for me when they finally offered the surgery. I honestly felt it was/is the last hpe so I ended up doing it. Not sure how I feel about it yet!

Well pepper, this is alot on your mind...what does your hubby think/feel about all this???
\
Please excuse my typing as I am trying to get used to foing it with the hard collar on.

Chrissy
PS.
Your always in my thoughts and in my prayers!

 
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