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New here & in desperate need of help!!!!

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Old 01-20-2007, 10:03 AM   #1
Join Date: Jan 2007
Location: Atlanta, Ga
Posts: 2
momof2blessings HB User
New here & in desperate need of help!!!!

Hi, This is my first time to the messageboard and new to the community as well. I am a woman in my mid 30's who has 2 children. I am in basically good health & very physically active. About 10 years ago I started having lower back pain after the birth of both of my children. The pain did not start right away but a few years after their birth I can remember the pain being there, no major trama or injury that I can remember.
The pain has become progressively worse in the last few years. I was always told in the past that sometimes after receiving an epideral that it can can cause some discomfort afterward, I assumed that the pain that I was feeling was the price that I paid for electing to receive the epideral during delivery of my children & I tried to live with it. Two years ago the pain increased so much that I decided to seek help other than my family doctor. I went to a local group referred by my family doctor. They gave me an MRI and since nothing showed up like a disc problem & after in depth description of my pain and symptoms they think that I have an SI Joint problem (maybe it has pulled apart). I went through physical therapy to try to rebuild the mucles in my back. Then the physician did a "live xray" and put injections in my back to try to relieve some of the pain. Nothing helped, not the exercises, not the injections, not the pain meds (I was in pain once again when I woke up). None of it did any good, I was still suffering. The physicain told me that I would just have to deal with it or the only other option down the road was to have screws placed in my back to try to fix it. That would work only if it was the SI joint & they really couldn't tell from the MRI, it was something that if it worked & fixed the problem and that would mean that the si joint was what the problem was all along; if not I would have to live with the pain & continue with the physical therapy and try to manage the pain. I was so frustrated, disguisted & terrified at the idea of implanting screws in my back that I just stopped going to the doctor all together. I thought to myself that I would try to deal with it in my own way. I have a very high tollernce for pain and I thought that I could just push it aside and live the rest of my busy life; if I didn't give into it that I could ignore it and try to forget about it as much as possible. I suffered in silence for a really long time. I was still hurting but my priority was to be a wife, mother and I have a business to run along with other family issues and obligations. I didn't have time to be sick & in pain. One of the reasons that I stopped going to the doctor was I was so terrified of the surgery, knowing that it had a great possability of not helping my problem but could even create more issues than what I already had going on. I couldn't wrap my brain around how I could function in my life and deal with more pain than what I was already in, I didn't think that I could take any additional pain. I thought that I am stronger than this, so I tried to suck it up with what I had and not to complain about it. I didn't want to take the pain meds because I didn't want to be "out of it" with my kids, they needed a mom not some zombie in mommy's body. I didn't want to sleep all day, I am a full-time mom and I work a full-time job.
After a couple more years of it increasing more & more I have reached my limit. The pain is always there and it never leaves but somehow it does manage to get worse. I am still astonished at how it does get worse but there it seems to find a new extreme. I live a very active life but find myself trying to avoid anything that I know will just put the pain through the roof. I used to could suck it up and push it aside and go on but now I can't even do that anymore. I am so upset that it is affecting my lifestyle, I can't do the things with my kids that I am determined to do. I am not talking about rock-climbing or pole vaulting. I am dying while sitting on the bleachers at my kids basketball games. I dread going and it killing me inside that I can't enjoy going with my family! Its affecting my state of mind, I hate this part of my life and resent my body for making me feel this way.
I am seeking help, I have decided not to return to the doctor that I had before because I don't think that he really listened to my concerns and our relationship was not the right fit. I think that I am open to treatment now, and including surgery if need be. But I want to feel comfortable with my doctor hearing my concerns and for us to be on the same page with options. I am seeking advice on helping me through this journey. I know that other people must have gone through similar situations. I would like suggestions on how to find the right doctor, questions to ask, test to have done, & how to be properly diagnosised. I have some done lots of reading and research & I do think that my problem is probably the sacroiliac joint. But there is a multitude of different things that it could be associated with that diagnosis. There must be a better way to diagnose than guessing. If there is anyone who could help steer me through this process, I would be most appreciative & any advice would be welcomed.
Here are some of my symptoms..... my pain is in my lower back, right at the base of my spine deep into the tissue and right in the middle of my spine (not the left or right of it). It is a very sharp, dull-aching constant extreme pain. It increases when I walk for any distance, stand on a hard surface (concrete or marble floors), or that I sit on a hard surface. After any of these actions, the point of my pain becames "inflamed" and the pain is INTOLERABLE, then I have a sharp razor-like sensation that tingles and feels like fire runs across my hip and down my thigh. (that pain sometimes in on the left hip and other times on the right hip). When it gets irritated or inflamed, it feels like the "tissue point" of the start of my pain is swelling through the skin in my back. My husband says that sometimes he can see it swelling (of course I am face down sobbing on the bed). I am dying in pain & I don't know what to do, I am only more frustrated that the doctors that I have seen in the past don't know what to do either. The only time that I get any relief is when my husband does a "deep tissue" massage on the area. It doesn't go away its like the pressure from the massage just relieves some of the pain. My husband is gettting artrisis in his hands from rubbing my back. I beg him to put as much pressure as he can on the pain, he says that he is afraid he is going to fracture something & I think to myself that it couldn't be any worse than what I already feel.
I am at my wits end, this is ruining my quality of life & I don't know what to do anymore. I appologize for the long post but not sure where to go for help or how to start.

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Old 01-20-2007, 10:49 AM   #2
Senior Veteran
Join Date: Dec 2006
Location: western us
Posts: 7,266
ms_west HB User
Re: New here & in desperate need of help!!!!

Hugs. The fact that you have dealt with the problem for so long tells me that you are a very STRONG person. You need to get in to be seen by a spinal surgeon/neurologist and have them examine you.

Good luck and I hope you find relief soon.

Old 01-20-2007, 11:50 AM   #3
Join Date: Dec 2005
Location: na
Posts: 383
onyxgates HB User
Re: New here & in desperate need of help!!!!

Your pain sounds a lot like mine...have you tried facet joint injections? They might help. You also may need an antidepressant not because anything is wrong with you, I am purely going from my own experience. I get depressed when I am unable to do things with my son. I know the burn you talk about from sitting too long or the sting when you stand for any longer than a few minutes in one place. I feel for you in that you have gone for so long without any medical assistance. I hope that you are able to get help. It would do you good to get a repeat MRI because over the years, you have accomadated the pain and may have caused different issues. I hope that you find answers. Start with a good doctor and get a second opinion.

I am heading towards a fusion. I have arthritis in my facet joints and two annular tears l4/l5 and l5/S1. I had the facet joint injections and although it didn't help me because of my disc tears, I hope that it might help you.

Good luck and keep us posted.

Last edited by onyxgates; 01-20-2007 at 11:51 AM.

Old 01-20-2007, 02:22 PM   #4
Join Date: Jan 2007
Location: Oregon
Posts: 6
Jody2U HB User
Re: New here & in desperate need of help!!!!

I have had chronic lower back pain since I was 14. But when my first Son was born 17yrs ago my whole back went out and I was in severe pain. Well I have been in chronic pain since. I noticed it would get worse a week before or after my period. Then this last April my lower back got worse and every period it would either go out completely (in bed) or it would be excruciating and limiting my movement. I couldn't exercise since this made it worse. My sciatica would then hurt tremendously. In 2004 I was diagnosed with Autoimmune thyroiditis and my periods were extremely heavy do to my thyroid. I knew I wanted a partial hysterectomy just for the very least to not have such heavy periods. But I knew my lower back pain was also due to this. It took me a few Dr's to listen to what I wanted and would help me. I actually told one female dr. "so I could choose to have an abortion but not to choose to remove what is causing me so much pain?" She still didn't listen. The next Dr told me that is absoloutley my choice and in Oct of 2006 I had it done. My upper back is the same with pain but my lower back is at least 95% better. I have missed 3 periods now and two of them were lower back pain free. I felt a slight tightness this month but nothing compared to before. I dont know if we have the same problem but when you mentioned having this trouble after having your kids it kinda seemed somewhat familiar. I would have your hormones checked and try to see if your pain follows the pattern of your cycle. If it seems worse at a paticular time of the month then it's worth looking into. I'm so glad I did it and it was very little discomfort from the surgery (laproscopic). Another tip I have for you and to save your husbands hands is this trick I have done for yrs. I lye on the floor and you can either use a tennis ball depending on how deep (tissue) you want to go. But I use a 3 to 5 lb dumbell and I find that Knot (you know what I mean) and i place the dumbell there and lay on it. Sometimes at first it is very uncomfortable and can take 20 minutes to feel the knot release and you kinda melt over it. My Chiro laughs at me but says if it works then great. The next day your skin and muscles will feel a little sore but I just know it works when it does. I also have one of those massaging things you put on a chair or lay in bed with pillows. I have had my last one for a yr and it's wearing out, they are wonderful. But if it's just your lower back the tennis ball (or dumbell if you like deep tissue massage) would work better for that. Give it a chance and make yourself lay there until you feel it working the knot out and make sure you relax completely like your trying to melt your body over it. It feels like it wont help at first but if you relax and let it work it is great. I make sure I have a pillow under my head too, it helps. Then ice it and drink alot of water. But dont give up most Drs aren't gonna link hormones with this problem if it is that and xrays won't find it either. Find a gyno that is open to what you think is happening and check hormones and thyroid. You know your body the best! Hormones can do crazy things!

Old 01-20-2007, 03:27 PM   #5
Join Date: Apr 2006
Location: United States
Posts: 372
kera4 HB User
Re: New here & in desperate need of help!!!!

Hi! Like you, I am a mom (4 kids), and I went through many years with pain in my lower back and left buttocks area, without being properly diagnosed. One orthopedic surgeon sent me to PT, which helped some, but not enough. It was only in the last two years that I really got my problem diagnosed, by a Physiatrist who specializes in the spine. I would reccommend seeing a Neurosurgeon/Spine Specialist or a Physiatrist/Spine Specialist (sometimes they work in the same medical group).

The way he figured out my problem, was by a series of injections to see if they helped or not. My MRI showed a bulging disc and facet joint inflammation, but shots near the disc didn't help. The shots near the facets did, and I had theses joints "nerve burned-RFA." This took part of my pain away, but I still had sacroiliac pain. We are still working on this with injections.

I totally sympathize with you about sitting at kid's sporting events-those bleachers/benches are the worst! One season, I would go to my son's basketball games and sit 20 minutes, stand 20 minutes, then lay down on the bench for 20 minutes. Then repeat the whole thing! At my son's band concerts this December I was able to sit the first half of the performance, then during intermission I layed in the van, then came and sat the second half. I guess, like you, I will do whatever it takes to be there for my kids. They are my top priority, but I feel bad when my back interferes. There are times my husband has to do the long walking events like to the zoo or a museum. I will say it has made my kids much more sympathetic and helpful than the average kids. They carry baskets of groceries/laundry, and pick things off the floor for me. (I also use a grabber-very helpful!) A couple of my kids are very interested in the medical field.

Hang in there! I would encourage you to find a doctor who will investigate your situation. Backs are so tricky and complicated that it takes a while to figure out where the pain is coming from. My doctor told me that sacroiliac pain and sciatica/disc pain can mimic each other. Take care, my thoughts and prayers are with you! Kera4

Old 01-20-2007, 04:23 PM   #6
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Join Date: Nov 2003
Location: Missouri
Posts: 2,128
carol632 HB User
Re: New here & in desperate need of help!!!!

Oh, my gosh. I would say that it is well past time for you to be seeing a good spine specialist. Don't see one that is associated with the same surgeon you saw before, but someone totally unafilliated. You might ask around with your neighbors, people at check out lines, etc to see if you can find someone who comes highly recommended. Or you could ask your family doctor for a couple of referrals to see either a neurosurgeon or an orthopedic spine specialist (my first choice) who has a spine extra year of training in spine surgery and treatment.
Perhaps this time, the MRI will show a problem. If it doesn't, there are other tests that might such as myelogram, ct scan, or MRI with contrast. I am utterly appalled that a dr. would suggest a surgery without any proof of the problem! He should have been turned in to the AMA's local board. He is a menace to his patients.

From your description, it is difficult to come up with possible suggestions as to cause. It could be just about anything, including SI joints, facet joints, leaking discs, nerve impingement, and on and on. There are some wonderful websites out there, including dermatome maps, which might help you in trying to figure out what might be going on. Whatever it is, you need to be seeing someone as soon as you can; then, get a second opinion. Sometimes, as proactive patients, it is necessary to see several doctors before finding one who you can be in tune with. It isn't enough to be treated physically, you need someone who will see you as a person who deserves respect.

I wish you lots of luck and hope that it isn't too long before you are telling us of a very successful visit with a new doctor.

And, tho it's late, welcome to the board!!

2 lami's, 3 fusions
bone spur removal
cerv. fusion, 1 level
morphine pump

Old 01-20-2007, 04:27 PM   #7
Join Date: Sep 2005
Location: Connecticut
Posts: 377
mabent HB Usermabent HB Usermabent HB Usermabent HB User
Re: New here & in desperate need of help!!!!

Your story is so sad! I'm assuming that the group of doctors you saw were orthopedic surgeons. I agree with everyone else that you must seek at least two other opinions, and preferrably from surgeons who practice with a teaching hospital. I would think that Atlanta would have wonderful clinics, etc. I've known several people who have been very much impressed with the Cleveland Clinic in Ohio. Also, Little Rock, AK, has a wonderful clinic. Hopefully , it's possible for you to get a second opinion from a neurosurgeon in one of those clinics. Things change through the years...when was your last MRI taken? The main thing is to feel confident in your doctor's diagnosis and to know how many successful operations he has had in your particular problem. One neurosurgeon I went to advised me to have an operation immediately and was indignant when I said I wanted to try PT first. The next neurosurgeon told me that should avoid an operation at all costs, unless the pain became unbearable. I am glad I listened to the second doctor because my pain did subside with epidural steroid injections (for now, I realize).
In my opinion, it would be worth your time and effort to really research this and get at least two more opinions from different doctor groups before you decide what to do. Good luck!

Old 01-20-2007, 04:45 PM   #8
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Join Date: Jun 2005
Location: Buffalo, New York USA
Posts: 135
nanatothesixth HB User
Re: New here & in desperate need of help!!!!

Welcome to the boards! Here you will finds of support from us all. Lots of info, too.

I agree with everyone about seeking out a Spine Specialist. There is a website that will help you find a Spine Specialist in your area, there are a few websites, and I can't remember which one it is. I have used Spine Universe and Spine Online in the past.

You stated that the deep tissue massages have helped you---have you gone to a massage therapist in your area? This will help to save your Husband's hands, but hurt the pocketbook a little.

Sometimes heat or ice will help the issue as well. I have a microwave heat bag that i just adore, and it can be used over and over for years. Cheap investment for awesome help(Ineed to make these and sell them).

Do seek the advice from a Dr. asap. You have suffered long enough.

Keep us posted, and good luck to you!

Old 01-20-2007, 09:31 PM   #9
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Join Date: May 2006
Location: Berryville, Virginia
Posts: 2,380
Justoneofus HB User
Re: New here & in desperate need of help!!!!

Welcome to the boards! As you can see, you are not at all alone and those on here understand your story all too well, as most of us have lived it ourselves including me.

I have always respected the elderly, feeling for them that they have to let go of things because their bodies just won't do what their brains would like anymore. Well, we aren't much different are we, only we are younger on all counts.

Carol32 offers some great widsom as well as the others. You need to see a spine specialist at this point in the game.

Since we don't know your insurance program.. let's assume you have a PPO and can see what type of specialist you care to, so long as they are "in" your group. I would actually call your insurance company and let them know you wish to see a spine specialist in your local or surrounding area, either neuro or ortho, one that has a spine fellowship. They have their creditentials listed and can direct you. Or you can ask around as Carol mentioned, or do your own sleuthing.

There are many tests to check for possible pain generators to help pin down the cause of your pain. You sound like it's sciatica and that it's either a spine/disc issue, SI joint, or piriformis muscle issue. I would think more toward the spine/disc issue though.

I understand your concern about medication. We all want pain relief, but wish to be coherent as well. (I am a paralegal.. and I have to have a sharp mind, so I have made tradeoffs of pain over medication to perform my job at times.) There are medications out there that do help alleviate pain, but do also offer some level of control and being able to function pretty regularly. It might take a bit to find the right ones.

My quick story. First disc herniation at age 18 at l5/s1. Was told not to have children. Not properly treated at all. Have two wonderful kids, now grown. Suffered many years with the back pain, it seemed to heal into my 30's. Was lifting heavy furniture at age 40, and blew out l4/l5, but the MRI's did not show this. Severe back pain and sciatica for 3+ years. First doc did not do much and assume l5/s1 was my problem and let her control my treatment for 2+yrs. After I finally got wise and started to look for the right doctor to treatment me. Found him.. and he's my 4th. He did more testing, a discogram and found the l4/l5 was virtually gone, but the MRI's only showed this disc slightly starting to degenerate. It was just a shell and about to collapse. By this time, it was 3+ years of 24/7 pain. I am now fused there as of April 2006 with rods, screws, cages where my disc was removed. I am solidly fused now.

The best advice I can offer, is to stay strong mentally and emotionally as you can, never give up on yourself. Okay to have the pity party, as we all deserve to have them, but don't let this consume you. Stay in control of your care, with respect to the doctors of course. But, if you sit back and just let them take the wheel, some don't drive very well if you know what i mean. You have to drive your care. The best way to do this is through educating yourself as much as possible so you understand options available to you and also that might or can be done to help you. Only till i learned this, did I get the proper treatment. You must speak up and ask questions and also demand good treatment. If you aren't gettting it, then you need to change doctors. Treating your back is a team effort between you and your doctor.. so finding the right one is important.

Sorry you are hurting, but glad you found us! Hang in there and please continue to post and let us know how you are doing, even your good days are a nice thing to share. Tammy
"believe in the beauty of your dreams"- E. Roosevelt

L5/S1 bulging @ 18, now 46; still there (but no pain)
Fusion at L4/L5 Apr -2006
Solidly Fused Nov-2006
A Success, but still improving!

Old 01-20-2007, 11:32 PM   #10
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mamakitkat HB User
Re: New here & in desperate need of help!!!!

[FONT="Comic Sans MS"][COLOR="Magenta"]HI,
Welcome!! You will find lotso f help here as you can tell by the replies you have gotten already. I'm sorry I dont' have much to say that is different from the others comments, just want to tell youthat I"m so sorry your in such shape and I will be praying so hard for you.I t is so hard when you have kids and a hubby, it's nice if htey are helpful. But it takes it toll on the family so much, as i'm sure you already know.

I hope you find a good spine dr., it hasn't been mentioned on here for a while so I will bringit up, make sure your spine dr. has a spine fellowship, they are better trained in treating the spine if they have a fellowship. Also once you find a spine dr. and get diagnosed properly you dont' want to forget to get a second opinion that is very important. I know once you get a good diagnosis you will so excited and relieved you may forget about the second opinion but please get it.

Good Luck & God Bless

"Thru every dark corner is a door to a new light"
(Dana Reeve)
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