DESPERATE: considering lower back surgery

[newhouse17]

My name is Kathy and am 39 years old and a mother of five children. I injured my back in 2002 working as a CNA in a local nursing home. I hade a L4/L5 disc herniation with tears, DDD, and spinal stenos is. I went through several bouts of pt, different meds, and injections which seemed to help with the pain. I could no longer be a CNA and had to modify my life to avoid surgery. I became a very active person running 3 to 4 miles a day, lost 70 lbs. and was in the best shape of my life until 2 years ago. I went from feeling great with only 1 to 2 episodes a year of my back giving out, to 10 in the past 2 years.

My last episode was June 23, which I have never recovered from. Tests revealed significant nerve damage in legs, DDD, spinal stenosis, with two herniated discs at L4/L5/S1. Went through usual treatment for back pain. I am in pain every day and can not be on my feet longer than two hours without severe pain in back and legs. I've seen surgeeons that said that a combination of disc replacement with charitie artificial disc and disc fusion with correct the problems of the two bad discs. I have never had surgery before and I am very scared but cannot sit on the couch and let life pass me by. Does anyone have any suggestions or good experiences with a surgeon in the Syracuse, NY area? VERY UNHAPPY!!! PLEASE HELP!!

[Gil Denis]

Hi and welcome.

I am new to this site and doing a lot of reading.
Do as much research as possibly
Their are a lot of people that will chime in on your subject.
talk to mmglobal aka: Mark he is the man.

Good Luck

Happy Holidays

Gil

[dshobbies]

Hi NH17,

Welcome to the forum. I'm sorry your circumstances find you in constant pain but we've been there, done that... at least some of us. Others are still suffering and like you, don't know which direction to turn.

Usually, the standard advise is get yourself educated and find a good doctor with perhaps a second or third opinion. Though this is sound advise, with nerve damage, your situation might be a little more urgent. You have to decrease the pressure on your spinal cord before this damage becomes permanant. Also, the longer the pressure is allowed to remain, the longer the healing process as nerves VERY slowly regenerate, if at all.

I'm probably scaring you and that's not my intent, but you may not have the luxury of a wait and see. If you've already tried non-invasive therapies, you also may not be able to avoid surgery. An ADR and fusion is not a bad way to go if S1/L5 is the fusion site with an ADR at L4/5. Is there a reason you cannot get 2 ADRs?

Is this a worker's comp case? Are they willing to pay for your ADR? If insurance is covering this, they may not though I understand some are beginning to come around. What are the ages of your children? Do you have help with them? Will someone be able to help you after the surgery?

So, you need to educate yourself quickly. You should consult with Mark. Not only is he quite knowledgable but he may know a doctor in your area. You have a lot on your plate and probably feel like a chicken with no head. You'll feel better after talking to Mark, please trust me on that. He's very calming. Having walked in your shoes, I know you're frantic. Calm yourself, breathe and may 2010 be a pain free for you. Surgery is a scary proposition for everyone but it is what it is.

I wish you all the luck, Dale

[mmglobal]

Kathy,

I'm sorry that you find yourself in such a state. You case sounds much like mine. I thought I had permanent nerve damage and did not expect ANY relief from my leg pain. My 2-level L4-S1 Charite' was supposed to help only my back pain, but I got 95% relief from the horrible leg pain that I thought was permanent.

You are looking for the best surgery and best surgeon. Close to home should be of little concern. Unfortnuately, insurance and reimbursements issues may drive the process in an inappropriate manner.

Welcome to the forum... talk to you soon....

Mark

[Maria]

Hi Kathy,
Welcome to the forum. I'm sorry to hear what brings you here however glad you are here to get some support and resource information. Desperate and considering lower spine surgery sounds quite familiar to me!!

I was an RN when I first injured my back in '82. Roughly it was L3-L5S1 and I had my first discectomy in '89, my 2nd in '92 (by this time I had gone on to become an NP because I could no longer do staff nursing.

What brought me to my very first surgery is really what you mentioned re number of times back going out and inability to be on my feet very long daily and of course ~ pain.

In the last 8 years I've been recommended to have 3 level global fusion, 2 level ADR, then lastly ADR at L4 and fusion at L5S1.

I am nearly 55 and while I had decided to wait for technology to improve, my spine is continuing it's decline degeneratively and with osteoporosis post menopause.

I think that you are at least in a good position re not having previous surgeries and technology have progressed as it has and still I would recommend getting several opinions in a timely fashion and utilizing the best surgeon you are able for the surgery whichever it should turn out to be. I agree w/Dale re talking w/Mark as he can be of great assistance w/all this.

My best wishes to you re this journey and again, welcome. I hope you will continue to update us with information along your journey and meanwhile I'm just wondering if you're doing anything for pain relief medication wise?

[newhouse17]

Mark,

You are correct; this is a worker’s comp. case. On Christmas Eve, I received a report from the insurance company’s doctor; he did not feel that disc replacement with fusion would give me the best positive result. He believes that an L4-5 and L5-S1 discectomy, forminotomy and fusion with instrumentation is the treatment that would give me the most benefit. He is not the only doctor that has discouraged the idea of the ADR. I was also told that they cannot put two ADR on top of each other. The whole idea of the ADR scares me. I have seen three spinal surgeons and only one have recommended the ADR. The other two believe that the ADR’S have may risks and can be life threatening in some cases. I am going in to have the discography soon. Will keep you updated.

Thanks,

Kathy

[dshobbies]

Kathy,

This is my history. I had a discectomy at S1/L5 in 1995, followed by another in 2002 at L4/5, followed by a 3 level ADR, one on top of another in 2005. Mark has a 2 level, one of top of another as does his wife, (it runs in the family ) Many others have multiple levels, both lumbar and cervical.

Here is what your doctors are not telling you. Statistically speaking, a first discectomy is about 85% successful, a second – about 50% with subsequent surgeries only about 5%. The reason for these dismal statistics is that a discectomy compromises the structure and integrity of the disc, putting pressure on adjacent segments and promoting the advancement of degenerative disc disease. A discectomy is far less invasive than either fusion or ADR surgery.

Fusion limits movement at that level, also putting pressure on adjacent segments and also promotes DDD. ADRs are motion preserving. Fusion hardware can, though not in all cases, loosen, causing further surgery. Multi-level fusion is often contra-indicated but has been the only remedy for so long, it is the ‘accepted cure’, especially in older doctors. I don’t know about your specific doctors but those who don’t perform ADR surgery are far less likely to recommend it. A woman from Germany, who had a lumbar, multi-level ADR, discovered that doctors over the age of 50 counseled against ADR with those under 50 recommending it. By the way, she has her complete life back, including horseback riding!

I realize that the whole idea is scary and ADR surgery comes with no guarantees. To the best of my knowledge, there are no statistics available on ADRs, except perhaps those skewed by the manufacturers themselves and therefore unreliable. (This is where I chastise Mark for not starting a database ). This is why your own knowledge becomes vitally necessary before deciding on your next course of action. If you decide on fusion, it should be with full knowledge of all the risks. This applies to all surgeries, including ADR. I had one doctor who told me I’d be up to my old self after 6 weeks. So untrue.

A discography will reveal which levels are involved. Based on the results, you can then schedule your surgery. In some cases, an ADR can be revised into a fusion. A fusion is permanent.

Kathy, you have a lot on your plate and deciding what to do is a daunting task and one that will affect the rest of your life. No one should tell you what to do but before you decide for yourself, you need to become fully informed as to both the benefits and risks. ASK QUESTIONS!

Dale (I just sent you a pm)

[Cheryl]

I just read your story and wanted to say hello, we have similarities in that I am 39 (for a few more weeks anyway) and have three kids and suffered with terrible DDD at L4-S1.

Almost one year ago I had a multi level ADR surgery on L4-S1 that I would call a success.

Sorry about your pain, it sucks to try to be a mom and feel like that.

Feel free to PM me any questions if you decide to go that route.

Cheryl