Hi everyone, new member

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Matthew.V

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Hi everyone.

I am new to the boarRAB, joined tonight. There is so much great and informative posts to read, it will be a late night.

Just to give a little history of me, I will apologize in advance that this is going to be a looong post.

I started having severe (felt like someone was hitting me in the leg with a baseball bat) calf pain, I could not walk more than about 100 feet without my legs doing their thing. After a few days like this I went to my regular doctor, he said "oh, I bet you have a pinched nerve". Oh, okay. He then scheduled me for an appointment with a neurologist. In-turn, she then sent me out for an MRI, a nerve study, a complete bone scan, blood work, etc. The findings were that I had DDD, a fractured rib (no idea about the rib thing), and a low blood count. After reviewing the flims she was not concerned. She said that there was a herniated disc but it was not a big deal, she thinks I am too young for any serious disc problems. She then disregarded the fractured rib, and not a major issue anymore and chalked the low blood count to having something like Lupus or Lyme Disease. After being tested for both and having come up clean, she assumed that since I am gay that there was a high probability that it was HIV. I again, took the necessary tests and everything was clean and has been since summer of last year. Once I threw the ball back in her court, she was rather irritated and was not cooperative anymore so I moved on.

So I just dealt with the leg pain for several additional months, the leg pain seemed to curb a bit. But then my lower back started hurting much like my legs, very severe and constant. Well, I then went to see a neurosurgeon, he was not of much help either. He had the same attitude, that my age was too young to be having that much pain from DDD. I told him, perhaps you should tell that to my body. Again, I just tolerated the pain and daily emotional toll that it took on me. No one, even my partner and family really listened, after all of this time complaining about pain they seemed to lose interest. They assumed that I was making it up or stretching it.

I went back to the surgeon, and insisted that he listen to me. I explained about the fact I was having issues with incontinence, groin nurabness/pain/tingling, etc., his reaction went like this: If I was not wetting myself everyday, then it was not "a big deal". At this point, I was sick of hearing this phrase!. After all of this, I was starting to really lose any hope of getting help and began questioning my own sanity. Luckily the incontinence issues subsided for the most part but the pain continued. So I searched for a new doctor and began seeing a pain management specialist. In the last several months he has tried epidural injections, PT, oral steroiRAB, Cyrabalta, Tramadol, Lidocaine patches, TENS and a few others with no response. After being stumped, he then referred me to an orthopedic surgeon, which I met with this week.

This doctor reviewed my old MRI films, listened to me about my list of symptoms, concerns, etc. Then, proceeded to give me the diagosis that I should have had in the beginning: I was dianosed with DDD at L4-5, which is herniated pretty good and pressing down on the nerve root. He wants to do a micro-D, laminectomy and a fusion of L4-5. While reviewing the flims, he also found the adjoining vertabrae are "irritated/inflamed" and there is a possibly that I have an infection of the blood. This is something, three other doctors all dismissed because of their own ignorance. I cannot stand the fact that these "professional doctors" have the nerve to just dismiss a patient without listening to them and trusting my own judgement.

For now, I am scheduled to meet with this same surgeon again next week to further evaluate the new MRI and figure out just how fast we need to act on this. If there is an infection, the surgery may be postponed until it is under control, if not then the surgery may be done in the next week or two.

Sorry again for the extremely long post, I wanted to make sure that my history was acurately noted. It feels like such a relief to actually have someone listen to me, it makes you feel like there is something wrong with yourself when no one else believes in you. For a few years, I have been dealing with chronic to severe pain just about all of the time. It is nice to be able to get things moving now, I was so happy to get my new MRI today and find out what is going on. There has been considerable worsening of the disc herniation, but at least now I have proof that I was not crazy and this is not all in my head. Thanks for dealing with my venting.

Matt
 
Hi everyone, thanks for your support.

It has been a very tough time, can't wait to get back to "normal". I just wish that other people in my life could feel what I am going thru, just for a few hours and maybe they would not be so quick to judge. I am becoming rather tired of telling certain folks over & over again about how what I am going thru is not simple back aches but is nerve related and is not relieved by stretching. I have beed told by too many people that I should lay on the floor, and stretch and they are sure that the pain will just disappear. That may be helpful to some, with muscle related pain, but for true nerve damage it is not that beneficial. My pain seems to increase dramatically when trying PT or exercising, I do walk each day. I walk in the late afternoon and again before bed, but with the days getting colder now it is harder to walk. I intend to keep it up the best that I can.

Matt
 
I know how you feel. Doctors don't always listen. You really have to search around for a good doctor. Pretty much everyone does. I'm a straight female and have had so many doctors disregard my complaints. Mostly with my eye problem that I had though. When I suffered from a herniated disc I had found a good doctor that listens to me when I tell her something is wrong so it took maybe about 3 months to get referred to a good Orthopedic Spine specialist. At first they just try to treat the pain with pain meRAB and oral steroiRAB which the oral steroiRAB did me wonders for a certain amount of time.

Then my disc herniated even further. So then I was referred to an Orthopedic spine specialist. It really sounRAB like you are on the right track now and found a doctor who is listening to you.

I had a microdiscectomy and I feel great now. I noticed your post because you talked about the calf pain. When my L5-S1 disc became severely hernaited I had such horrible calf pain. It started with pain and then after another round of oral steroiRAB it turned to nurabness and I lost the use of my calf muscle in my left leg. When I would walk I could not use it at all. Talk about a stupid looking limp.

Anyway after my microdiscectomy immediately that day of surgery they had me get up and walk and I could use it again. I also had horrible foot pain before that. That took about 2 months to go away after the surgery.

I'm glad you found someone who is working with you now and will help you. Just make sure they are a Spine Specialist too and not just an Orthopedic surgeon.

I feel your pain. I could not even walk for some time because the pain was so bad. I know surgery is scary but I am so glad I did it and I have been feeling so good now for about a year and a half.
 
Hi Kari.

Yes, I did have terrible calf pain in the beginning, the doctors would not believe that it was confined to my calf and not in the thigh & buttocks. They said that it is not "typical" for the pain not to start in the buttocks. Not sure why the pain was strictly in the calf area initially, but in the past few months it also happens in the thighs sometimes. The worst part of all of this is when you experience daily pain, the people in your life start disregarding your feelings because they get tired of hearing about it so I don't talk about it anymore. I just go to my appointments and keep to myself. My partner has less than helpful recently, he does have his own share of health issues (high blood pressure). He also has occasional muscle spasms in his back, but it is fully relieved with Flexoril. When he is not feeling well he will take the entire day off and spend it in bed and expect everyone to wait on him, no questions asked. But if I am having a bad day (which is 98% of the time) and want to sleep in a little on the weekenRAB it enRAB up being a big fight. Today, I locked the bedroom door and slept until 3:00pm. I really needed and deserved the rest, my sleeping has been very erratic since the pain started.

I spend a good portion of my day in severe pain. Somehow, I have not missed a day of work, except for a few hours to go to doctor appointments, etc. We are self-employed, running an architectural business and do not have the ability to take time off. Even on the days that I had epidural injections, I still worked before and after the procedures. You would think that with the dedication of the past few years, that I would get a little slack right now. We do not take vacations, we still work on most holidays, etc. I am just so exhausted from the pain and lack of sleep.............don't know how much more of this I can tolerate.

I would consider it to be wonderful if the surgery relieved the leg & back pain to say about a "4", then I could at least get some of my life back.

Matt
 
Hi Matt- I'm very familiar with your story. I too thought it was all in my mind. I actually had a doctor to tell me that during one of my visits. At that point, I was sure of one thing; doctors are still human and can be idiots just like everyone else. Just because they have a certificate and other trinkets that proves they are cerified posted in their offices, they still have bad days and make bad decisions just like everyone else. Someone told me something that has stuck with me for a while now; doctors are just "practicing" medical study. I was like, wow. I have seen that in phone books, on certificates, websites, etc.. They don't have all of the answers. Some are just finding out as they go. Sort of like a mechanic when you get your car fixed. You tell them what's wrong, they go by what you tell them, some of what they know and past experiences; then they attempt to fix it. There's always something that may get missed because they haven't experienced everything. IMO, what seperates "good" doctors from "bad" doctors is how well they communicate the info (I've had doctors to just speak in medical terms) and the professionalism. I would prefer for someone to tell me"I can't help you" instead of having me go back and fourth paying for office visits. The person that did my last surgery was just straight forward with me afterwarRAB and told me that. It threw me off at 1st, but later on, i appreciated him for telling me that. He did recommend me to someone else, but at that point, I was just tired of trying.

Finding a doctor can be tough, but when you find one, you have to challenge them and push them. When I 1st started out looking for one, I was passive. I wouldn't ask questions and accepted whatever I was told. Being in pain and being told the same thing over and over will force you to become aggressive and ask questions. I wouldn't have had my 1st surgery if I would asked more questions. Now on top of my back and leg pain, I'm dealing with the healing process for my hip.

Good luck with your research. Try to stay positive and just know you're not alone. Judging by this wonderful board and the people here, there's a lot of us out there.....
 
Matt,
I know it's really hard because the people around you don't understand. You will find though that this board is so helpful because we have been through the same thing and we do understand. It will help you to vent here and talk to people who can relate. Nerve pain is so much different then muscle pain and unless someone has experienced it they will just never know. Plus your sciatic nerve that is effected by this is the largest nerve in the body. I thought I knew what pain was before I went through this but man there is nothing worse then nerve pain.

Just hang in there and don't feel guilty if you have to lay down and take care of yourself. I know that was the hardest thing for me. One big thing I learned with this whole thing is that I have to take care of myself. That takes strength that's for sure since others around you may not understand.
Even after the surgery I had to have great strength because people would want me to lift things that I knew I should not and I had to yell and scream and say NO I am not doing that.

You'll get through this. I know you will.
 
Hi Matt, and welcome to the board,

I'm truly sorry that you family and partner don't understand your pain, but you've came to the right place for support, informative info and just a plain ole place to vent when you need.

Your story is definately one that is all to familiar here on the board. I'm on this board sometimes four times a day, just reading. It's a place that I know I can come to and always feel better. Somehow, just knowing that your not alone, is comforting.

I had calf pain as well, only mine came after surgery. Dr. put me on Neurontin (gabapentin is the generic name) and that has worked wonders. I no longer suffer from that pain anyway. My original back pain started back when I was 21 and pregnate with twins. Over the years bad luck just seemed to follow with repeated back traumas like, falling off a 4ft ladder and hitting on a toilet tank (and if that wasn't enough), finally landing on a five gallon bucket of paint and knocking it over. I looked like I swam in the bucket and just popped out..lol. My humor on that is now that I laugh, Back then, I cried! lol More back traumas of about 8 car accidents, lifting heaving machinery. I work in a very physical job and all of that has contributed as well. So, all of these things have lead up to me having a laminectomy, 8 months later fusion of L4-5, C5-6, lots of before hand Pt, trigger point injection, heat ice, epidurals, meRAB, ect ect.

I now have a herniation at L5-S1 and a bulge at L3-4 and ddd. I have alot of bad days where all I want to do is just cry and blame myself for the physical work and how I kept plumiting away with it, when I knew that I shouldn't be doing it anymore. Some days I just want to scream and say why me???? and others, I'm acceptant of what my limitations are "for now", and trying to stay positive knowing that. I'm lucky, it could be worse. Atleast, I can walk, talk, reach for things, eat, drive, ect., maybe with pain, but I can do them. While so many others in this world can't do any of them.

You have our support here and you always will. Vent anytime you need to, because "WE" all here understand what your going through. Try to focus on the good things, like finally finding a Dr. that listened. It's definately a long journey.

Anyway, take care and God Bless.
Bernie
 
Greetings Matt,
I also welcome you to this board. You have achieved the most important thing in finding a doc who you can and want to work with. Good for you! But I have to throw a wet blanket in here to suggest that you slow down just long enough to cover a few more basics before scheduling surgery. The discectomy and laminectomy are pretty standard procedures. But a fusion isn't just a fusion which maybe you already realize. Fusion are done with a variety of materials and in a variety of approaches. These details matter so much that I would caution you to research them extensively and to plan to go over all of these options with your surgeon ahead of time. As just an example, my first surgeon simply didn't use anything but autograft. Period! That is a severe limitation whose significance eluded me until I needed my second surgery!
I sure do sympathize about your pain and the struggle you have had and continue to have in being heard in understood. Best of luck to you- Suzy-Q
 
I know exactly how you feel. No one around me understood my pain. I really think unless they have experienced this same thing they just don't realize how bad it can get. My husband has had back pain but not to this extent and he would tell me I just need to get up and exercise to get rid of the pain. When it's nerve pain there is just no way that's going to help it.

He would tell me just lay on the floor and pull your knees up to your chest and you'll feel better. This just irritated me so much.

I actually spent a few days in bed where I could not get up to go to the bathroom on my own the pain was so bad. I almost called 911 and my husband said no don't do that. Then I could not make my own food obviously and I had him make me a couple sandwiches before he went to work and then when he got home I said I wanted something to eat. He actually said to me where are the sandwiches I made for you? I was like are you kidding me I make dinner for him every night but he didn't want to make me dinner. He just thought I should get up and make it myself I think cause he was so used to me doing that.

What I am saying basically is that they just don't realize what you are really going through. Your partner obviously doesn't know how bad it really is. I know now is a depressing time but it will get better and try to stay strong.

I went through so many times where I thought it will never get better and I can't deal with this anymore. It truely will get better. You are on the right track now and they will be able to fix you up and make you feel much better. It's amazing how bad I was with not even being able to walk to the bathroom or make my own food and then just a few months ago I was at a concert dancing. I do have some mild nurabness in my left foot that will always be there but I'll take a little nurabness over pain any day. :)
 
Thanks again for the welcome. It has been a long road, to get to where I am. When I met with the orthopedic surgeon, he is highly regarded in spine work. He is somewhat young for a surgeon, which is what I preferred and seems to be very knowledgable and willing to work with me. We have went over many issues regarding surgery, including the issue of a fusion. After my appointment, we have since been communicating by email and discussing some of the details and concerns that I have. I am confident that I have exhausted all of the options, for conservative treatments. I know that the road is long and there may be a lot of curves ahead, but I am ready. I hope that my partner and family are able to give me a hand, sometimes.

I think that my biggest issue is slowing down, and accepting my limitations and not allowing others to push me past those limitations and cause me more pain and emotional stress, which just makes everything even harder to deal with.

Matt
 
Hey Matt,

I know what you mean when you say that you wish people could feel your pain for just a moment, especially when the nerve pain is relentless no matter how many times you lay on the floor, shift your hips, and do press ups. Although you probably know as well as I do that people with this issue would never wish this kind of pain upon anyone, but it would be nice to know that family, frienRAB, co-workers..... could understand that there are days that you may want to do everything and more...but it is not in the least a possible thing to do, without putting yourself in danger. I have always been a hard worker who stanRAB out in the crowd, and I wish that I could carry the weight of the world on my shoulders like I once use to do. I know now that I can not tackle everything that comes at me all at once any longer, and in fact I never could, but it was nice to think I could. I struggle every day, but I have come to the realization that you don't have to be the worlRAB strongest person, (emotionally or physically), to stand out in a crowd. People are going to think what they want to without really knowing the facts. It is just human nature, and it is up to us to take life to ware we want it to go. I wish you all the best Matt...just know that you do have people who understand where you are coming from, although it seems as if you have lost the grip you once had...the World is still your oyster.

Mindy
 
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