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Dealing with CES
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adinrob posted:
I first hurt my back in 2005 falling on ice. I've done various methods of therapy for the past few years with little effect. 2 weeks ago I woke up with completely new things going on; I had complete loss of bladder and bowel control, numbness in my butt and groin and severe pain in my left leg. My hubby took me to the ER, where they tried twice to do a MRI but could not complete it due to leg spasms. They admitted me on 8/26 and did a full sedation MRI on the 27th. I was diagnosed with Cauda Equina and was shipped off to Phoenix on the 28th (2.5 hours away) for the surgery to remove my L5-S1 disc. I was alone and highly medicated for most of my stay there, so I don't remember a lot of what the Dr told me about how things would progress after the surgery. The long and short of it is that I still have complete loss of bladder and bowel control, zero sensation on my backside from my waistline to my knees, left side weakness to the point I either use a cane or a wheelchair to get even to the bathroom, and I am still having moderate to severe back and leg pain on my left side (my L4-L5 was also herniated but not removed in the microdiscectomy). I guess my question is this: How permanent is this? Am I going to have to use adult diapers for the rest of my life? I'm only 31, I'm not ready for this! I have kids to chase and I don't have time for my body to give out on me already.
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bj1208 responded:
hi and welcome to the support group -

you should have some doctor that you are seeing closer to home that can answer these questions.

You are still pretty early in your recovery stages and it should start getting better - but then again these questions and your recovery stages should be seen by a doctor closer to your home.

please keep us posted what you find out and how u are doing - take care - Joy
 
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adinrob replied to bj1208's response:
I wish I had a Dr closer to home! There is one Neuro in Yuma, AZ and he refused to do the surgery to remove the discs back in May, so my PCP referred me out to Dr's in Phoenix. I have an appointment with the Neuro that did the surgery next Friday, but I wanted to get some first-hand info on how the healing process works. I don't want to get my hopes up that everything will get back to normal if it's not realistic. I know everyone's case is different, but any advice on the general progression of CES is welcome.
 
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bj1208 replied to adinrob's response:
hi again -

I'm sorry you're having to go thru so much with your surgery - the boards are usually slow on weekends so hopefully you will get some responses in next day or so -

what I can tell you with surgery to the spine (lumbar, thoracic and cervical) the main focus is to stabilize the spine. surgeons can only be hopeful that the surgery will reduce pains but there is no guarantee just as there is no guarantee the stabilization will be a success.

normally, during the first 2-4 weeks are the hardest and with some the most painful as the healing process is underway. the incision, moving parts around, removing discs, adding spacers, etc., (list can go on as far as type of surgery) - all these can cause more pains during the healing process but as the days/couple weeks go by the pains should start to subside. this is why it's hard to say how the recovery process will be and how long it will take. there's also the issues with nerve roots, i.e., if any disc(s) were pressing on the nerve roots (cause pains in legs/hips, mid areas, arms/hands etc.,) sometimes if these are involved they can take from a couple of weeks to over a year to heal.

I don't want to scare you but this is what some doctors will look at and may not give the type of response we are looking for.

In my case, Anterior Lumbar Fusion L5-S1 my surgeon said he could fix the disc problem but could not guarantee it would help reduce the pains. He did what he said he would do - remove my disc and put hardware in (plate, 4 screws and cage).my surgery was a success, however there was too much damage to my lower spine (facet joints etc) and to the nerve roots in my legs)

Hopefully this will help a little more to let you know the healing process.

please keep us posted - take care - Joy
 
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trs1960 replied to bj1208's response:
I think Joy gave you a great answer. Post op from any spine surgery is rough! I don't know how long to expect the nerves to respond to the impingment removal or decompression? I know the physical trauma of the surgery is extremely painful and a difficult process. Be patient, but demand answers from your doctor. You need to know what to expect. Not knowing actually has a negative effect on your recovery.

T
 
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Debsbears responded:
Hi adinrob, I can tell you from my surgery though a different part of the body I had a laminectomy done on my cervical. C3-T1. A 7 vertebrae fusion. They removed everything that was touching my spinal cord. Put me together with 2 rods and 10 screws. (that is the short revision of my surgery).

I was in the hospital for 10 days and could only sit up for 15 mins. at a time if I sat any longer I got spinal headaches so bad I was out of commission for 4 hrs at a time. This went on for 2 months while I was in the Rehab center.

They cut through all the muscles and nerves. That was 3 neck surgeries ago (6/2011). I am still numb in parts of my shoulders and C6- T3 with a lot of pain. I do not know if the feeling will ever come back. It is strange now that I think about there is a lot of pain but if someone touches the numb areas I can't feel it.

The surgeons could not and can not tell us how long before we are feeling like ourselves again. Everybody heals differently.

From what I understand any surgery to the neck or back can take a long time to heal.

Please keep us posted as to how you are doing. I will be off the boards for about 10 days so I am going in to have my hardware remove, I will read up on you though. Good Luck with your upcoming appt. with the surgeon. Deb.
 
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fibrofran17 replied to Debsbears's response:
Please forgive my ignorant question but why get the surgery in the first place if it doesn't help the pain and even adds more side effects than before? I am at the beginning of the process of having surgery but it seems like it's a no win.
 
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dianer01 replied to fibrofran17's response:
Hi Fran,

Everyone goes into surgery with the hope of reducing their pain but there are times this doesn't happen. The real goal of surgery is to stabilize the spine, if pain reduction is also achieved, then the surgery was doubly successful.
 
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adinrob replied to bj1208's response:
Thank you so much for the info! I think not being able to talk to the neuro is the biggest part. I don't need someone to hold my hand, but I do have questions that need to be answered. With him being so far away I have to call (and call) just to even get refills on my pain meds. Not being able to have my husband or anyone with me in pre op or post op when they go over everything has really put a damper on everything, to the point that everything I know about CES I learned on the internet. I'm going to see my PCP tomorrow for my post op with him, hopefully he will have some answers for me.
 
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adinrob replied to trs1960's response:
I agree completely that not knowing what to expect has a negative effect on recovery. All I know I learned from the internet, and most of it is horror stories about paralysis and such. As the days go on the pain is ramping up, to the point that I hurt more now than I did before the surgery. Hopefully these Dr's will get their butts in gear
 
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adinrob replied to Debsbears's response:
7 vertebrae? Holy Moses! I looked at my paperwork again today, they did a laminectomy and microdiscectomy on my L5-S1. I had to look up laminectomy because I had never heard the term before, but it makes sense. I had a "massive herniation" so taking that bit out goes along with it. The disc was pressing on my nerve roots to the point that I completely lost feeling in my legs for a while, but right after surgery I was up and moving around with ZERO pain! Perhaps because of the good stuff they had me on, but I did a lap around the neuro unit 5 hours after surgery with a walker, and the next morning I did it without assistance. Granted my blood pressure and pulse were sky high, but I could do it. Now I'm back to the cane and wheelchair, and I feel like it's getting worse rather than better. The incision doesn't hurt at all, they actually cut through surface scar tissue from an old diving injury, so that's no biggie.

I understand exactly what you mean about pain and numbness at the same time. I was doing dishes tonight (sitting in a bar chair) and I got up to put things away, hurting like hades. My hubby came up behind me and patted my butt and I felt nothing, but was hurting in the same place.

Good luck getting your hardware removed (lol sounds like you're getting your braces off), I hope everything goes smoothly!
 
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adinrob replied to fibrofran17's response:
The surgery for CES is considered an emergency procedure because CES is like breaking a bone in a sense. The disk fractures and goes into your spinal column, and if the fragments are not removed you can basically guarantee you will be paralyzed from that point down. I had talked to surgeons previously about doing a discectomy, but we were looking at doing the cage to replace the disc. The surgery for CES doesn't include that, they just straight take everything out.

I guess the bottom line for any kind of back surgery is that there is a chance that after the surgery you will be pain free. The idea of not hurting all the time is like my white unicorn. Its the moment when you realize that you can actually lean over and pick up one of your kids without the fear of not being able to stand back up. Its the idea of being able to go to Walmart without having to use a scooter and getting strange looks because people can't see what's wrong with you. I will go through surgery as many times as they will let me if being pain free is a possible outcome. For every person on this board, there is a person out there that had the surgery done and it was successful. You don't see them because they don't get on back pain boards. If there is any chance of the surgery having a positive outcome, GO FOR IT!!! The worst case scenario is that you will still be in pain, but the best case is that your life will go back to normal.


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