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L5/S1 post surgery issues
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An_251033 posted:
I was in a car accident that we later found out resulted in a herniated disc. I saw my my regular Dr, who is actually an Osteopath, about back pain and was prescribed anti-inflamatories. Those didn't work, so then we tried muscle relaxers and pain pills. Those didn't work so we tried stronger pain pills. Those didn't work so then I was referred to a Chiropractor that tried manipulation and acupuncture. Only after 6 weeks did somebody think to do an X-Ray. Continued with Chiro, but went back to my dr as pain continued to get worse. Dr next sent me to Physical Therapy at the same time she ordered and MRI. The MRI results came back 2 weeks into PT, where we discovered herniated disc. PT was making pain worse so Dr referred me to a Neurosurgeon. He recommended surgery over steroid injections. So I had my first microdiscectomy laminectomy foraminotomy surgery a month after being seen by Neuro. At 2 weeks we found out I had slipped a stitch and an infection was the result. I was told to clean it with mix of saline and hydrogen peroxide then put Bacitracin on it. Due to the complications I had to check back every 2 weeks for 2 months. At 4 weeks I started PT. At the last checkup I was in so much pain, worse than before the first surgery, that it was determined that I needed a second microdiscectomy laminectomy foraminotomy surgery. Three days later I underwent my second surgery. My Neuro's explanation for "why" was because he hadn't been very aggressive the first time and that the second time around he would be. This time there were no complications as far as infections. The scar was smaller this time around, too. I began PT at the 4 week mark, again. After 4 more weeks of PT I was in so much pain. Still. Again. I don't know which. I was given a refill on Norco and Flexeril. I had been weened off those medicines the first week after surgery, but as time went on and I continued with PT my pain got worse. I had yet another follow up with my Neuro and he ordered me to stop going to PT because the exercises just aggravated my pain more. The Neuro did a whole bunch of poking and prodding of my legs and said that I had "bursitis" and that I should go to a pain clinic. He further said that there was nothing more he could do for me and released me from his care. I returned to my Dr and was referred to a pain clinic. The clinic did 2 rounds of steroid injections. Neither helped. Now I live my days in constant pain. I used to live 6/10. About 6 months ago I was 8/10. Now I live at a constant 10/10. I have pain shooting down my buttocks, hips, thighs, knees, calves, feet, and down to my toes. Sometimes it is my left side, sometimes it is my right side, and sometimes it is both sides at the same time. When I think the pain is a 10/10 on one side or the other, I do not know how to explain that it is worse than a 10/10 when it is both. I walk with the assistance of a cane. Even with the cane, the distance I can walk is very limited. I cannot cook because standing for more than 15 minutes creates so much pressure pain that I burst out crying. I have applied for, and been denied, Social Security. I spend most of my time in bed laying down flipping from side to my back to my other side. There is no being comfortable. I can "alleviate" the pain from 10/10 to 9/10 for a few moments before it surges back stronger than before. I have no social life and while I am already Bi Polar, my highs and lows come and go much more deeply and with more frequency than before the accident. This void, lonely existence cannot be the most my life will ever amount to. Why is there no answer for the pain? Why is there no help when I ask for it?

The worst part?

I'm only 29.
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bj1208 responded:
Hi and welcome to the support group -

I think at this time I would get some opinions - from both Orthopedic Spine Specialist and Neurosurgeon Spine Specialist as they will be able to see what is going on and give you treatment advise.

You must make sure they are spine specialist as there is a difference between Ortho Surgeon/Neuro Surgeon and Spine Specialist.

From what you are explaining to us is the PT and any Chiropractor treatments are hurting and as a rule of thumb we always advise members that if it hurts STOP. Any type of PT should not hurt like that. It could be you are starting PT at too early of a stage and you are not fully healed.

You can also see a PHYSIATRIST Pain Management Specialist

http://www.spineuniverse.com/treatments/what-physiatrist

They go deeper into pain management by treating the pain from the sourse and not from the pain itself. The PHYSIATRIST Pain Specialist I see if a Pain Doctor who can use numerous treatment programs not found with regular pian clinics.

Please get a couple of opinions and see a PHYSIATRIST Pain Specialist. I believe this is the path you need to go so that you can see what your diagnosis is and what options you have.

Keep us posted what you fin dout~~
~~ Click on my name or picture and read my story ~~

Take care ~~ God Bless ~~

~~ Joy ~~
 
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aprilrose9 responded:
Dear L1-S5 post surgery issues, I can completely identify with your story. I was a bit older at age 32yrs. old when I was injured and know it is a painful, frustrating and scary time to be young and in chronic pain.

Depending on where you live, I would recommend you see a physician at the largest teaching hospital in your area. First see a spine specialist. A neuro doc and an ortho spine specialist will interpret your situation differently. I personally would go the neuro route first and if you hit a roadblock with this appointment, next visit should be to the ortho spine specialist.

There are two different approaches for pain clinics. Some provide nerve blocks and some provide opioids for pain relief. I had three surgeries in three years and it only made me much much worse. I always caution people to think seriously about further surgery and try conservative measures as a first form of treatment. Of course, surgery can be a medical necessity and cannot be avoided in some cases.

Also, when you see further physicians, listen very closely to the words they chose. I am a little,( just a little) suspicious of your story, in that I wonder if there was something other than the incisional closure post op infection. The medical community can be very tight lipped if a problem has occured as the result of surgery. If something did go wrong surgically, you will have just one year or less to file a claim against the surgeon. I am not an attorney, but this was info from a family friend(attorney).

Speaking of time. If you have filed for disability, check with a disability attorney immediately, if you do not have one and make sure you file an appeal within the specific time frame or you will potentially loose out on benefits for that period. I did not file with an attorney, did not appeal and lost out on 25K in benefits. I had received poor advise from my mother (an HR director).

I have forgotten some of your story, so forgive me if I have written some things that do not make sense. Have you been on something for nerve pain. Neurontin(may be spelled incorrectly) a non narcotic for nerve pain can be helpful. Originally it was used as an anti seizure medication. Due to your other medical diagnosis, I am not sure if this would be contraindicated, but I would request a script for this as a starting point. You need something for pain relief while you are waiting to get in to see a physician.

In the meantime, try heat on your back. Some people say ice, but that only makes my back worse. I have had many heating pads over the years, far too many to count and this can be a pallative short term measure.

Good luck. I have had many long periods where I wondered if I would ever feel better. Many of us at this site completely understand and are a source of emotinal support. There are monitors of this site, who check this page very often and they can be a great source of information in all areas of back injuries, complications and treatment options for those posting.

Take care,
April-Rose9
 
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KGB9283 replied to aprilrose9's response:
I ran out of characters before I could add that at the time of all this I was uninsured but did get financial relief from a county sponsored advocacy program. The doctors, medicine, surgery, hospital visits were all donated. I am blessed to not be drowning in medical bills, but my pain is still there.
Add to that, 6 months ago I got married and we moved to Milwaukee for my husbands job. I am now on his insurance, but this is most obviously a pre existing condition that the insurance will not cover. (It's BlueLink through Blue Cross Blue Shield) Any and all medicine, doctor, specialist, etc visits would be my out of pocket responsibility. To say I am dead broke would be an understatement. I have been unable to work for 2 years. My "emergency savings fund" has long dried up.
April-Rose, I would like to file again and would like to make a point of doing the entire process through an attorney. However the lawyers I have contacted continue to point out 2 points as reasons why they will not take my case. The first, is my age. The second, is my lack of being under a physicians care right now. As mentioned above, I don't have the money to be seen once, let alone on a regular basis.
I have Gabapentin, generic Neurontin. That does not work. My mom is a retired RN and she suggested an Aspirin regimen. For some unknown reason, when other medicines don't work, sometimes Aspirin does. It has for me in the past as far as fevers and headaches. However that route did not work either.
I find neither heat nor ice to help. The heat hurts. Almost as if it makes the pain shoot faster down my legs. Ice doesn't do anything but numb me up. But it never gets deep enough to get to the pain.
Good ideas though. I'm just that person where nothing works and I leave doctors perplexed.
The pain clinic did 2 epidural lumbar steroid injections. It was just after the scare of the bad shots coming out of Mass, too. So that made for a doubly scary occasion.
I think one of the things that gets to me mentally the most, is that I DON'T want to complain all the time. I really don't! But the ONLY thing going through my head (and body) all day every day is, "I hurt. My back hurts. I can't think past how bad I hurt." I know that friends and family get sick really quick of hearing it. But I get sick of feeling it!
How do you guys cope with staying patient with people? Because I find I have zero tolerance for anything. Nice, mean, young, old. Doesn't matter. It's hard. Right? I do breathing techniques I learned from my shrink, as part of dealing with PTSD from being abused as a child and teen. That at least helps me calm down when I get amped up and pissy. Some.
 
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KGB9283 replied to aprilrose9's response:
Also, people keep recommending a TENS unit. What are your opinions on this? Part of me is interested and another part of me says if a dr hasn't prescribed it don't bother. The reason part of me is interested though is because the pain clinic docs were talking about a spinal cord stimulator. To me they seem to be along the same lines of treatment. Sort of?
 
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aprilrose9 replied to KGB9283's response:
Hello, Thank you for explaining the complexity of your situation. Excuse me if I question a few things which may have previously been stated in your posts.

Which level did you have your surgery? Was this a single or 2 car MVA? If 2 car, were you able to receive a settlement from both insurance companies?

You seem to be very intelligent, I just wondered about a couple of these issues. You have to excuse me, because I am in pain and forget many things which have already been discussed in a post.

Your Mother is correct, ASA is a very cheap wonder drug, but too much can lead to hearing loss, cause clotting issues and since drugs are metabolized in the liver and excreated through the kidneys you do not want to stress organs with medications which have little efficacy.

You do not say the dosage of the medication. Norco has never worked for me. The dosage of your neurontin(generic) could possibly be increased or you could change medications. A small dose of methadone worked for me and it is an inexpensive medication. Many of us at this site have had positive and negative experiences with steriod injections.

The financial aspect of your situation does complicate things for you. I am unaware of treatment options for you, which could be paid for by another party. Perhaps one of the monitors would have some good suggestions for you.

I along with many others at this site, understand the problems you have described in trying to deal with severe chronic pain. I have been in so much pain, bedridden, unable to turn myself in bed, unable to watch TV, flip through a magazine or speak on the phone. I understand trying to cope with the pain.

If you could give a bit more info about the level of the surgery, perhaps others on the site could come up with some ideas to help you get some relief until your financial situation changes. I once went two years without treatment because of financial difficulties. I was homebound, my husband sold my car because I never felt good enough to go anywhere.

File for disability on your own, if you have not already done so. Appeal within the deadline. As previously mentioned, I was young when I was injured and that does make getting disability difficult, because they do not want to pay for an extended period of time. I was fortunate and found a wonderful attorney who took my case and worked like crazy on my behalf.

Keep in touch. The monitors and others may have some good ideas for you. Sorry, I wish I could be of help to you.

April-rose9
 
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schoonke responded:
An_251033,
After you have tried everything else, considered a neuro-stimulator spinal implant? I have similar back problems but have had an implant since 1996. The implant makes the pain tolerable although I still take 100 Mg of Morphine every 8 hours. I would look into it if I were you, it doesn't work for everyone but a 2 week trial run would give you a good idea if it will work for you. If you need any other information feel free to contact me. By the way, I was only 21 when I had my accident and that was almost 30 years ago. It took 13 years before I got my implant. Hope it doesn't take you that long if you deside to try an implant.
 
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KGB9283 replied to schoonke's response:
The doctors at the pain clinic were talking about a neuro stimulator but they didn't proceed.
 
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KGB9283 replied to aprilrose9's response:
I had surgery at L5 S1. The same spot both times. It was a 3 car accident, and we were the middle car. The car in front of us was stopped to turn left. We were stopped behind it. The car that hit us was a rental car that had been stolen from the person who rented it. Nobody was found guilty because the people in the stolen rental car fled on foot. I know this sounds so far fetched. I tell people it's the sort of thing a movie is based on. Only, it did happen. And I have the pictures, scars, and back pain to prove it. In the end there was nothing from anyone because the one party who was guilty fled and there was no way to identify them.
I will go file disability ASAP. My drawback is, what do I claim my disability is? Back pain is not a reason, is it?
Here are my medications. I obviously do not take all of them at once, but these are my options:
800mg Skelaxin 3x a day - muscle relaxer
10mg Flexeril 3x a day - muscle relaxer
5mg Valium every 8 hours - muscle relaxer
750mg Robaxin 4x a day - muscle relaxer
.2mg Dilaudid 3x a day - pain
5-325 Norco every 6 hours - pain
5-500 Vicodin every 6 hours - pain
100mg Neurontin 3x a day - pain
10mg Toradol as needed - pain
100mg Ultram 3x a day - pain

Like I said before though, none of that works. I get loopy and fuzzy in the head, but the pain is still there.

Oh you just hit on ANOTHER good point! I have previously had episodes where I, too, was unable to watch tv, read, sew (usually a favorite hobby), or even talk to people who call. It makes me happy, in a sad way, that I'm not the only one. Because most of the time it sure feels that way.
 
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aprilrose9 replied to KGB9283's response:
Hello!, You are on a boatload of meds. You should check out pain specialists in your area with good reviews from family, friends and online. Check which medical school they attended, their specialty and Board Certification. Make sure the online reviews relate to patients with serious chronic pain and the willingness to spend time hearing about your pain and getting your meds in order.

You are on a very low dose of Neurontin. Ask if the dose can be increased, since you can take up to 3600mg/day. I belive this is the max dosage.

Another question! Do you have back pain or SI joint pain? I have some suggestions for SI joint pain and there may be others who have ideas to help your back and get you some relief, and some sleep.

You are entitled to disability. You have a documented car accident, the medical documentation of surgery x2 and chronic pain. Since you are young, this may take time. The disability should be retroactive, so apply now, appeal each and every time you are denied and do this within the time frame. Look for a good disability attorney who will answer your phone calls, return calls in a timely manner and spend years, if necessary, to work on your behalf.

How many attorneys have you had appointments with and what case law have they cited with regards to the car accident. I think it is crazy that the rental car company is not responsible for the lack of security which lead to the theft of lethal company property.

Try to remember the pain will get better. I have dealt with chronic pain for a very long time. The loneliness, isolation, sleep deprivation and peple not understand has been a part of my life for a long time. You never know which day will be the day, where you feel better or have an appointment with someone who will make your situation better and you will be heading in a better direction with your health.

Take care,
April-Rose9
 
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bj1208 replied to KGB9283's response:
Hi KGB9283 - welcome to the support group -

First - you need to see a good PHYSIATRIST Pain Management Specialist and have them review your medications.

http://www.spineuniverse.com/treatments/what-physiatrist

I can see that you don't need to have the majority of those on hand as you have way too many muscle relaxers and pain meds. Accidentally taking the wrong meds or too many mixtures can cause an overdose - I've seen this happen with a friend of mine. the meds you are not taking should be discarded.

Question - what are you taking Neurontin for? The majority of the times that this is prescribed is for nerve damage to legs/arms. That is such a low dosage and is not a therapeutic dose. I take this for the nerve damage. in my legs at a much higher dosage.

Seeing the right kind of spine specialist is vital in proper care of your spine. also getting other opinions on what is going on with your back will be helpful. seeing either a Orthopedic Spine Specialist or Neurosurgeon Spine Specialist are the are the only ones that can examine, diagnose and offer treatment plans.

In regards to filing disability, what about your back holds you from working? Chronic back pains? Nerve damage in legs? where you cannot stand/walk/sit etc for very long.

If any of this interferes with your working abilities it may be in your best interest to file but be sure to hire an attorney that handles disability claims only. Normally, 9 out of 10 disability claims are denied the first round so hiring an attorney will help you get everything you need.

Please keep us posted what yoiu find out~~
~~ Click on my name or picture and read my story ~~

Take care ~~ God Bless ~~

~~ Joy ~~
 
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An_250887 replied to bj1208's response:
Hello!, In the initial posting, she discussed peripheral neuropothy, stating she had shooting pains to her toes and pressure upon standing for 15 minutes. As you stated she is not on a therapeutic dose. Should either have the dose increased or slowly be weaned off the Neurontic under a Dr.s care.
 
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KGB9283 replied to bj1208's response:
I think you misunderstood. I'm not ON any of those medicines right now. None of the medicines gave me any relief, so while they have been prescribed to me, and I still have them in my medicine cabinet, I do not take them, so here is no need to ween off of anything.

I went to the grocery store yesterday and noticed pain in my hips. Do anyone else have those? Deep down almost at the socket, but not a joint pain (as far as I can tell...but maybe it is?)

All these technical words...please people, dumb it down for me would ya?

What keeps me from working? Well, the pain is so strong nonstop that I can't focus past that. I don't trust standing on my legs because sometimes the pain is so strong I feel my knees buckle and I'm very thankful for a wall or the cane.

The last time I applied for disability was just after my first surgery 2 years ago. I got denied, appealed. Got a lawyer (or so I thought. Turns out it was just an agency that "specializes" in disability claims.). My appeal got denied, so I had a hearing where a representative of the agency and I sat in front of a judge and 2 "witnesses". One was a vocational expert and one was a medical expert. The medical expert said there was no reason for me to be not working. The vocational expert listed 3 jobs I could potentially do. One, I remember, was assembly work. I cried as soon as I left the room. Line work? I wish I could. I can't stand or sit for 15 minutes! I'm expected to perform for a paycheck 8 hours a day?! Incredulous. Needless to say, I was denied at the hearing level. The agency dropped my case. I was offered the option to appeal the hearing, but after it was explained to me, I didn't appeal that level. I was told at that appeal all that would happen is a room full of judges would listen to the tape and decide if anything had been wrongfully done on the judges part. If they decided that was the case then the only thing that would happen is the tape would be sent back to the judge for him to review and possibly make a new decision. If the decision was denial again, my only option was to reapply. I am at the point of reapplying. Again. But I can't help wonder how many times I will be denied? 3 rounds of denials, that doesn't seem normal.
The medical expert pointed out that I am obese. I am, now. Yes. But at the time of the car accident, I was slightly overweight and worked 2 waitressing jobs. I gained all this weight because I can't exercise. The judge also pointed out that my age is a huge denial factor.

I really just want to video a day in the life of and show it to people like the judge. Let him see how hard it is to walk. Or try and shower! Heating up premade meals during the day and moaning and groaning because of the effort of standing there waiting, while my back feels like its going to break from the pressure and pain. I wear slip on shoes now because bending over and tying laces causes too much pain. And I haven't painted my toenails in 2 YEARS! As a treat, a friend who went to Cosmetology School will do them sometimes. But when a judge sees someone for an hour, while they are sitting (squirming from pain) how the hell can they make a decision that impacts someones life so deeply!? Hardly seems fair.

I know, I KNOW. Life ain't fair.
 
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KGB9283 replied to KGB9283's response:
I think another part of the problem, honestly, is that I smile all the time. I know that sounds stupid, but I do. I worked as a waitress for 10 years. So I learned that no matter what, you smile. People say, "Oh well you look normal. You don't look like your in pain." Well, what am I supposed to do? Cry and carry on all day everyday? I sure feel like that's the only way. But I can't help but smile, even when I'm angry. Or hurting.
 
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bj1208 replied to KGB9283's response:
HI again - sorry for my assumption of the meds. but the way they were listed it sounded as though you would pick and choose - sorry again.

the link I gave you for the PHYSIATRIST Pain Management should help you a great deal as stated they do go deeper into pain management control and use a wide variety of treatment options.

The Neurontin I take (3600mg a day!!!!) really helps with my nerve damage in both my legs. I can really tell when I miss a dose as the leg pains start to get real bad. This is something the PHYSIATRIST Pain Doc can go over with you.

I am also attaching a website of what I refer to as the "BIBLE OF PAINS" -

http://www.howtocopewithpain.org/blog/47/are-you-pain-free-10-things-those-of-us-in-pain-would-like-you-to-know/

print this out and put in areas where people can read it - it's an eye opener.

keep us posted~~
~~ Click on my name or picture and read my story ~~

Take care ~~ God Bless ~~

~~ Joy ~~


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