Failed Back Syndrome & Exhausted

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michael10711

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Hello All,
I am new with the whole message board thing but I think I need to vent right now. I'll try and not write a book.

Quick Facts:
Post Laminectomy Pain Syndrome
Lurabar Degenerative Disk Disease
Laminectomy June 1, 2010
Epidural August 31, 2010
Average Pain level between 7-9

The Short Story:
I've had back pain for years now. In April 2010 the pain was uncontrollable. I left work and went for an MRI. Doctor #1 told me I had spinal stenosis and needed surgery ASAP. I needed time to think out it, docotor gave me 1 week to make a decision. On the way out of the doctors office he stated "If you let this go you could lose control of your bladder and bowel movements if that should happen before we are able to do the surgery don't bother calling me, you'll have to go to the ER and have surgery by whom ever is on staff at that time. Also once you lose that control, you'll never regain it." After that statment I returned a week later agreeing to surgery. June 1st surgery was completed. They discharged me from the hospital at 1 am that night. I spent the next month or so in agonizing pain, My fiance regonized the surgery wound was not healing correctly and later found out it was infected. Doctor #1 did not seem concerned. I was put in antibotics for 2 weeks. I had no therapy of any kind up to this point. With little care I decided to switch to Doctor #2 who at first seemed out raged that Doctor #1 even did the surgery. He proceeded to give me an epidural injection on August 31, 2010. This was probably the most painful thing I have ever been through (dont mean to scare anyone). I also went through a series on trigger point shots. After 4 months with doctor #2 he sat me down and stated " I do not know what is wrong with you and have tried everything to help you, there is nothing more I can do for you" After that shock I decided to start fresh. I found a new family doc with really good rates. So far so good. I have an appointment on 2-3-11 with my new Pain Managment doctor and I'm still trying to get an appointment with a spine specialist at the rothmen Institute. My pain in through the roof, I have no income and find I am becoming very depressed.Will this ever end?:dizzy:
 
I can see why you are depressed. From your brief description it sounRAB like you have received some very poor guidance thus far. You probably now realize that it is not a good idea to rush into a spine surgery without thoroughly researching both the surgeon and the procedure beforehand. It was irresponsible for surgeon #1 to rush you into surgery. Perhaps this surgeon was well-credentialed, but all the specialists I have consulted with would not treat a patient that way. He almost sounRAB desperate for business.

Well, you cannot undo a surgery, so now you are left to deal with the outcome. I hope you will be able to get an appointment at the Rothman Institute. Even when consulting with the best spine specialist, it is a good idea to get another opinion if surgery is being recommended. There is sometimes more than one way to treat a problem, and you want to be sure that you have an accurate diagnosis before proceeding with any surgery.

Do you have any assurance that the original infection has cleared up completely? At what level was the laminectomy performed?

I hope you will be able to find some relief from your pain with your new group of physicians. Please proceed cautiously, and don't rush into any new procedure or surgery without careful consideration and thorough research.

Good luck.
 
Hello Michael,

I am so sorry about how you were rushed into surgery and how you've been treated and what you're left to deal with now. I also had spinal stenosis (and now have it again, though) along with spinal OA, DDD, and disc herniations. I actually went a few yrs until my pain was no longer bearable before I had surgery. At the time mine started, I was seeing a Rheumatologist. He just told me that since I had tried so many meRAB and ESI's, PT, etc. probably the only thing left was surgery. He kept telling me he was going to give me referrals to some good spine docs in NY, but never did, so I researched on my own.

I actually ended up going to the Rothman Institute and had my laminectomies done by one of their adult spine specialists. It was my Physical therapist and some of his patients that recommended my surgeon. So for me, it was great that I was able to speak with some of his post-surgical patients who went to the same PT as me. I'm also in NJ, but don't live near Philly. IN fact, it took about 2 hours for me to get to Jefferson Hospital. Now, before I saw this surgeon, I had to go through the same as you. I had to send them my medical recorRAB, MRI reports, etc. and wait for someone to go over my case, then decide if they would take me. I think I waited a few weeks before they did get back to me and told me the doctor would see me for a consultation. Sorry, but I can't remeraber exactly how long the whole process took until I finally had my appt as it was in '06 and my memory is pretty bad with dates. One difference, though, between you and me, was that I had never had any surgery before. You've already had spine surgery and are now looking for a different doc to help you afterwarRAB. That can be a bit tricky.

My surgery went well and it helped me so much. However, no surgery can get rid of the arthritis and DDD, etc..so I still deal with that. Plus I keep getting stenosis and disc herniations constantly, so I'm going downhill again. It had nothing to do with my surgery, though. One thing I do have from surgery is scar tissue, which does give me some problems, but that's a risk one takes with any surgery. The docs do their best to try to lessen scar formation & I did LOTS of PT afterward, but it still built up.

Anyway, you having to wait to see if they'll see you is common procedure. I cant' say if they will or not, but I'm hoping they don't just dismiss you because someone else did your surgery. That seems to happen to many people. Overall, I was happy with my outcome and my surgeon did explain everything to me such that nothing was guaranteed, surgery wouldn't help the arthritis, that I could get stenosis in same place and/or other places again. He was also good at explaining and showing me where my problems were on my MRI's, and at explaining about the procedure. He also had a personal nurse that I could call anytime with any questions.
 
Yes, I have learned alot through the past 9 months. Unfortunatly i've learned it all the hard way. I was very inexperienced in dealing with any type of doctors and absolutly feel as though I was taken advantage of. On a more positive note I now know not to let those things happen ever again.

I also hope I will be able to see the doctor at Rothman, side note; has anyone ever dealt with the rothman institute? How long does it normally take to get in to see a doctor?..I've been trying for almost a month now and they are still telling me they will call me when the doctor decides if he will see me. Is this normal?

As far as the infection goes, I had an MRI almost 2 months after surgery with and without contrast. No sign of infection was found.
My laminectomy was at the L4-5 level.

I appriciate your response and any advice!
 
Thanks for the info. I have not dealt with Rothman, but I did get many "second" opinions from a variety of places and can tell you that what you are experiencing is fairly typical. Most spine clinics associated with a major university will ask for your imaging ahead of time. They will tell you that they want to make sure that the patient has a condition/issue that the doctor can help, so that it does not waste the doctor's time or the patient's time. A month to make this decision seems a bit long to me, because it will then take even longer to actually get in to see the doctor once "they" decide you qualify! If I were you, I would call again tomorrow and ask how long can you expect to wait to find out if you will be able to see someone there. I think that is reasonable.

You are in an area that is rich with well-qualified spine specialists. If you don't hear back from Rothman, I'm sure you can find someone else who is equally well-qualified. There are some very good specialists out there who do not work for one of the well-known spine clinics....it just takes a bit of time and research to find them.

I elected to go with someone in private practice after going to several well-known clinics because I didn't like the feel of the clinics. I felt too much like I was in a "spine factory" and knew I wouldn't get the personal attention I feel I need and/or prefer. But the clinics are convenient in that it can be one-stop shopping. They also have the appropriate physical therapists, pain management doctors, everything a patient might need after surgery.

Well, I know you will mention the infection to the new surgeon as any doctor would want to know that as it may affect the way your case is handled if you need surgery in the future.

What type of pain are you having and where is it located? Do you have more leg pain or back pain?
 
Hi Michael. Wow, you have had some really bad experiences with those surgeons. The first rushed you into surgery by frightening you and making untrue statements (loss of bladder and/or bowel control) CAN be corrected, tho it is better to act before that happens as sometimes control isn't complete. He sounRAB to me that he is one of those cut quick and worry about it later kind of surgeons. The second surgeon doesn't sound to be very competent either.

I cannot comment on the Rothman Clinic, but if they can't get you in soon, I agree with Teri that you should see someone else. You might try to find an orthopedic spine specialist. In the meanwhile, try to keep a "pain diary" for whomever you see, chronicling your pain. What kind of pain it is, where it is located, what makes it worse or better on a daily basis. This kind of info can be very helpful to a good spine specialist.

I also agree with tetonteri that I personally prefer an individual in private practice for the most part. But that, of course, is only an opinion. Has no one given you any medication for your symptoms.....pain medication, etc? It's unconscionable that a doctor would allow someone to live in that kind of pain, and it really upsets me.

Michael, I do hope that you are seen by someone with whom you can build good relationship; that you find a doctor who is compassionate as well as a good surgeon....someone that will listen to you and not just make it seem like "all business". Please do stay in touch and keep us updated.

Carol
 
I will call Rothman on Monday, and hopefully I get more then "someone will get back to you".

Also I am on medication. I've been prescribed percocet for the past year! I can't stand this medication anymore but it is the only thing that can help my pain. right now im on about 30mg a day, I also just started lyrica. I havn't felt any difference since begining the lyrica.

My pain is chronic..all day and night.. i have a very bad bone pain where my surgry was done (7months ago) and very bad leg pain. The wierd part is the pain does not go down the back of my leg but through my hip down the front of my leg to my knee. Mostly on the left leg, sometimes on the right. It is a sharp shooting pain down my leg. If I happen to be up walking around when this hits me my leg gives out and I collapse unless I can find somthing to grab on to. The bone pain is that horrible deep ache that never goes away.
 
Hmmm, I can't say what's up with your location of pain, but I get pain in what feels like my hips, across my entire pelvic region, groin, and even down the front of my left thigh to my knee. I recently found out it's due to stenosis and a large disc herniation at L1/L2. I had 2 bilateral ESI's done recently at this level and it instantly stopped all that nerve pain in all those areas. My only problem is that they only last about 2 weeks for me, then the nerve pains come back. I also get what feels like deep aches on and off in my spine and sacral area. I am assuming it's from the arthritis, but am not done having that investigated.


It's always possible that you pain could be from another disc level, though if you got that new pain and worse after your surgery, it would make me wonder what they did during the surgery.
 
Don't give up on the Lyrica. It takes awhile for it to kick in, and sometimes the dosage will have to be increased before you feel any relief. IT didn't work for my nerve pain. When the dosage was increased, I got some relief, but then I immediately developed a terrible problem with swelling at the higher dosage, so I just decided to eliminate it altogether.

I had pain running down the front of my thigh as well. My issues at that point were at L3 and L4. Also the femoral nerve runs through the front of the thigh. Sometimes when you have a surgery where you are positioned on your stomach, the nerve can be damaged if you are not properly padded while on the table. Usually this is temporary but the results can last longer than one year.

Have you had a flexion/extension X-ray? Whenever pain moves from side to side, I think of an instability in a particular segment of the spine. This can be caused by a spondylolisthesis where one vertebra slides over the top of the adjacent one, or it can be an issue where a facet joint wears down to a nub and allows the spine to move more than it should at that particular level. Chances are, you don't have these issues, but I just thought I'd mention another possibility!
 
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