And the rollercoaster takes yet another dip

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mrsm123
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   Posted 3/4/2011 11:55 PM (GMT -6)   
Oh boy..........here we go again. shocked They got a new spinal cord injury physiatrist/PM doctor at my PM's office, which is great for me! Finally someone who really understand Cauda Equina Injuries and the left over damage and pain.
I see his partner the first time , he isn't liking the spasticity levels that I have. In fact, he decided that he wants me to have a series of MRI's to check again for MS, or myelopathy because he is convinced that there is SOME reason for the amount of spasticity aside from the CES injuries. Anyway, last month, I see this new SCI/PM doctor and he orders cervical, thoracic and lumbar MRI's. I have suspected for some time that I didn't fuse after the revision. That same old popping, clicking and grinding is /has been still there since a few weeks after the revision.
Anyway, I went yesterday for the lumbar, thoracic and then they did the contrast half of the cervical, rather than have to give me another dose again today for the cervical MRI.....the demeanor changed with the technician from my arrival to my departure. In fact, she spent a lot of time asking me about symptoms, time and space between flares, etc., of course ,this was after the series of films. She even helped me up much more gently than most do....anyway, as we are talking, I mention that I don't expect that the revision fused and she slips and says, the failure to fuse is the least of your problems... idea I asked her to make me a cd of the films and she stalls and says that they will make it today when I come back for the cervical second half without contrast.  idea Okay.......this all leaves me a lot curious about what's on those films that she isn't in any hurry for me to see. shakehead
Anyway, I go back for the cervical part today, and the MRI tech today is different, but also rather gentle in his handling of me, helping me down onto the table and using his hands to support me while I lower myself. Now, don't get me wrong most MRI techs will assist if they have to, but have to being the key word and they tend to not be very gentle, at least around here.
Anyway, we do the cervical, and he is ever so gentle again helping me up, too helpful......anyway, I come home and promptly load the cd into my computer....
Now, I wish that I hadn't......there is at least one cervical herniation, looks like c5-6, a thoracic one maybe T 5-T6 if I am counting the levels correctly ( thoracic area always confuses me), and the lumbar ........OMG......it looks like a 18 month old stacked the blocks and someone took a picture just a split second before it fell over.....and that's not exaggerating. In fact, that's only the beginning- from L2-S1 is one mess after another. I know about adjacent segment problems but this is ridiculous. eyes If I can figure out how to download the pictures from the cd onto my computer, I will post them. The pars are broken at L3/L4, L4/L5, L5/S1 . shocked More than half of the canal is darkened and the other portion light......I mean it looks like the canal is closed off on one side of it .
 L3 is falling off L4 by more than 50%. In fact, L4 is either crumbled or disintegrated, probably the latter. The L3-4 disc is hanging off the front of the vertebre and the L5 disc is extruded and hanging like a gob of something into the canal. shocked   There are darkened starburst shaped spots on the vertebre at L3,L4,L5 and a smaller spot on L2.....and there is more, so much more... smhair
The screws appear to be just under the skin and a tiny fraction of a mm or two below the muscle. There is contrast all around the screws which have gaps between the vertebre and the screws. In fact, it looks like if I bend over too far, they will come through the skin. rolleyes The cage is broken into at least two pieces....and of course, there is no fusion... idea ...
It really does look like if I move the wrong way or bend too far, that my spine is going to fall down. This is the most frightened I've ever been in my life. yeah I was talking to my husband before the 2nd half of the MRI about what the first tech said about the lack of fusion being the least of my problems and he asked what I thought she meant, so I said that there was most probably more nerve root impingement and the screws were probably loose......never expecting even for a second that there might be something more.......I know that I am leaving some of the other stuff that is wrong here out, because there is just so much that's obviously not right, that I can't remember all of it.. confused cry
I see the doctor on Monday and I am pretty positive he is going to want me to be seen for a surgical consult immediately. I'm really scared guys.....what do I do?
I don't want to do surgery again........I am not sure that I can go back to 5 years ago.......but I don't think that I am going to get another option. nono smhair
Sandi

White Beard
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Date Joined Feb 2009
Total Posts : 3695
   Posted 3/5/2011 1:06 AM (GMT -6)   
WOW Sandi!!
 
I will definitely keep you in my prayers on this one!!!!.  Can they hold your spine together with rods?  My gosh it sounds like a mess to me! Honestly I cringed while reading your post. Anything I can do to help just let me know. You said you were scared and asked what you should do? Well I can understand you being scared, I am scared for you! See what they recommend to you, it sounds like your spine now is in a very fragile condition, so above all Please!!! Please!! becareful! I sure will be interested to hear what the surgeon says or what they will offer to do to stablize your spine. So please keep us informed of your progress! You are an important member of our family here, and we deeply care about you!  I really am concerned about you Sandi, this does not sound good at all, I do want to Thank-You for sharing this difficult news!
 
Your in my thoughts and prayers.
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

mrsm123
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Date Joined Dec 2007
Total Posts : 1235
   Posted 3/5/2011 1:38 AM (GMT -6)   
Thanks WB,
When I first saw the pictures, to be honest, I got nauseated and almost threw up. I have never seen anything like it. If I weren't there and someone showed me these pictures, I wouldn't believe that it was possible for a spine to look like mine does and the person still be standing.
It really does look like it's all going to just topple over.....and the fractures.......sheesh.
It even appears that there is a hip fracture, which I think happened some months ago.....some members might remember my posting about my hips and the problems that I was having.....I think that might have been the cause.....
I really am scared, I don't want to go back to all that trauma from surgery, and the long, drawn out recovery......assuming that at this point, things would be better than they are right now. I have fought for the last 5 years to stay on my feet and this looks like I might not be.....
I'm just stunned......
Sandi

momtofourangels
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Date Joined Apr 2010
Total Posts : 2261
   Posted 3/5/2011 1:59 AM (GMT -6)   
Oh Sandi I'm so sorry that you're in such bad shape. *hugs* I can understand why you're scared. I will be praying for you. Please let us know what the dr. says on Monday. As White Beard said Please Please be careful. I cringed too when I read your post. I will be thinking about you all weekend. Please take care of yourself and try and get as much rest as you can. We're all here for you if you need anything. Wow. I'm at a loss for words. I'm scared for you too. Come here and cry on our shoulder, vent or whatever you need to do.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees

flower123
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Date Joined Apr 2009
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   Posted 3/5/2011 6:00 AM (GMT -6)   
Wow. I also cringed when reading your post. How do you deal with having so much pain? I'm glad that you have an appointment on Monday. Please keep us updated.

CRPSpatient
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Date Joined Mar 2011
Total Posts : 1276
   Posted 3/5/2011 6:06 AM (GMT -6)   
Hi Sandi. I am only new here tonight, but wanted to send *hugs* and best wishes in your direction. Take care of yourself as best you can, and I hope that things will work out for you.

Laura

Retired Mom
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Date Joined Feb 2010
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   Posted 3/5/2011 7:51 AM (GMT -6)   
I am so sorry. This is nightmare scenairo and I feel so much for you. I wish there were a way to help!

I can't even imagine what they can do at this point. If the back is breaking down at such a rate, additional surgery does not seem suficient. Of course, I'm only speaking from an uneducated perspective. I only have one failed fusion and I have refused to let them go back in at this point. I do understand the anxiety of another surgery, but not on the level of what you would have to undergo. Could they do an outside brace that would help support you for now? I know the one I used after my surgery was wonderful. I'm tempted to use it now sometimes, but I've been warned that my muscles would weaken if I did.

I wish there were a magic pill to give you to make you all well. I would gladly give you mine.

I wish you well my friend.
Failed fusion L5-S1, Pituatary damage, HGH Def, Fibro, Bladder surgery failure, Nissen Failure, GERD, OCPD, GAD, MDD, CTS (Bilateral Surgery completed), CFS, TMJ, Migraines, Vit D, A, Magnesium deficiency, Pre-glaucomic (sp?), HBP, Idiopatic Reactive Hypoglycemia, Edema, too many Drug/Food allergies, sensitivites, and current meds to list.

flower123
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Date Joined Apr 2009
Total Posts : 856
   Posted 3/5/2011 8:07 AM (GMT -6)   
RetiredMom,

I wrote a whole post about possibly using a brace and then lost the post! That's just what I was thinking...that maybe that would help. I hope that there is something besides surgery that they can do.

mrsm123
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Date Joined Dec 2007
Total Posts : 1235
   Posted 3/5/2011 9:39 AM (GMT -6)   
Thanks 9Yrs,
I didn't sleep much last night, worrying but Monday will be here soon enough I guess and I will have to see what he has to say. I can't figure out what I am going to do. I know beyond any shadow of a doubt that he is going to tell me that I must have surgery. I don't think that there will be another option offered to avoid it. I don't see how they can.
The slipped vertebre is a huge problem when it is beyond 25%, because it can literally fall off the other vertebre and especially given that the vertebra under the slipped disc seems to have disintegrated.
This is not something that was ever discussed and I am a bit angry at the surgeon for not forewarning me that this was a possibility and that he didn't feel it was necessary to bother to check on the status of the fusion. How can you not check, especially given that you know the patient didn't fuse the first time???????? It makes no sense to me.
It's going to be a long , very careful weekend for me.....and Monday is going to prove very, very interesting. I won't be too surprised if he insists on my using my wheelchair from here on out until I see a surgeon. If I were him, I would.
Sandi

mrsm123
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Date Joined Dec 2007
Total Posts : 1235
   Posted 3/5/2011 9:42 AM (GMT -6)   
Hi Flower,
I guess, after a while, your body kind of acclimates to a certain amount of pain and I have a pretty high pain tolerance. It does explain why I haven't been too stable on a pain med and have had to switch around to find better pain relief.......
I just don't know what to do at this point........
Sandi

mrsm123
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Date Joined Dec 2007
Total Posts : 1235
   Posted 3/5/2011 9:44 AM (GMT -6)   
Thank you Laura. I'm sorry that you had to find yourself here. CRPS is an awful thing to deal with. I had it in my right arm and shoulder for 7 years.......I hope that you are finding decent pain relief with your doctors. It really does help to have a pain doctor who is really familiar with all of the nuances of CRPS.......
Sandi

mrsm123
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Date Joined Dec 2007
Total Posts : 1235
   Posted 3/5/2011 9:48 AM (GMT -6)   
Hi Retiredmom,
I suppose they could try a brace, but that won't stop the deterioration, at least not at the rate that it appears to be happening.
I think they would have to do an anterior and posterior fusion again, but probably from L2-S1 or S2 to try to hold things together. Other than that, I don't know what other options there would be.....if the starburst things are fractures, they would have to use that cement I would think to try to keep the vertebre from fracturing further.....
My first surgery was almost 7 hours and my second was about the same......I can't imagine the total surgical time for this mess.
Thanks for the well wishes. I also wish that there were some magic formula for all of us. I would find the money to buy it.......
Sandi

spinal soldier
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Date Joined Dec 2009
Total Posts : 687
   Posted 3/5/2011 12:37 PM (GMT -6)   
Wow Sandi, that is too much to think about without steam coming out of your ears. know that i am praying for you also, and this last week i witnessed a case of intercessory prayer bringing about a miracle. i can't tell you anything in the way of advice or suggestion because you are very familiar with spinal anatomy abnormalities but please; if the surgeon that did your fusion(s) did not follow up on the bone graft taking then maybe you should look elsewhere. i know some spine surgeons are afraid to do "revisions" due to scare tissue ect. or they do not want the liability. in my area of Norfolk/Virginia Beach (which is very large) only two or three surgeons can handle the severity of your case, so try to find the best for what it's worth or at least let several spine surgeons look at your films and get their reaction. manage your pain as best you can and be careful (like you have not heard that before) and i will pray for your full recovery. God bless you.
L4,L5,S1 bilateral Laminectomies, Foraminotomies 2002
L4-S1 PLIF with instumentation 2008,

current Rx: MScontin 100mg q8hrs. , dilaudid 8mg q6hrs. prn, oxymorphone IR 10mg q6 ,vistaril 50mg prn nausea, Lyrica 150mg 2x,Adderall 20mgs 1x A.M. 10mg PM prn, Soma 350 mg 3X, Elavil 25 HS, diazepam 10mg bid prn, Supplements: CO-Q10 100mg, Vitamin D 1000IU, Fish-Oil1000mg EFA, B-Complex50 3x/day, ALA

mrsm123
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Date Joined Dec 2007
Total Posts : 1235
   Posted 3/5/2011 12:45 PM (GMT -6)   
Thanks Spinal Soldier,
It is too much to think about today, you are absolutely right about that and I am not happy that the neurosurgeon who did my revision didn't feel it was necessary to evaluate/send me for films, MRI's or CT scans to make sure that I fused, especially since I didn't the first time.
I won't be returning there, needless to say......I know all about surgeons not wanting to do revisions because they don't want the liability, I had to search all over before I found this neurosurgeon and I am so not happy with the mess he contributed to....
It will be interesting to see the expressions on their faces once they see what I saw...
I just can not believe this is happening.......again.
Sandi

straydog
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Date Joined Feb 2003
Total Posts : 16304
   Posted 3/5/2011 4:32 PM (GMT -6)   
Hey Sandi, I am sorry to have read what I did, but will hold out for something more hope full after you see the dr on Monday. Try to remain as calm as you can as getting yourself in a knot will only heighten the pain. I most likely missed it, but the dr you will be seeing Monday, is he a surgeon and has he participated in any of your previous surgeries? Sad but true, it does sound like you may be headed back to surgery to to get your spine stabilized. If all is messed up as what you can read off of the films you really may have no other option. I would be more afraid to let things ride and continue to deteriorate and perhaps miss out on a good chance of correcting a good deal of the problem. Sometimes letting things go too long, there is nothing they can offer at a latter date, or the chances for a good outcome not be as good had it been done sooner. My other thoughts are the hardware and just how stable that is and what happens if it slips, the thoughts of becoming paralized scares me more than anything. Because of the situation with the hardware I would not put a brace on unless my surgeon cleared it only after seeing the recent MRI's. You know my prior PM dr had me in a back brace and when my current PM dr saw me in it, she nearly had a fit. She told me to take that thing off and throw it away. She said all it would be good for is causing my muscles to become even more weaker. She is a retired neurosurgeon. So, I did as she instructed me and since then I have heard it from others that the braces are not good for us.

Try to pull yourself together gal so you can remember it all come Monday. My thoughts & prayers are with you.
Moderator Chronic Pain Forum

antbuggey
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Date Joined May 2010
Total Posts : 594
   Posted 3/5/2011 8:36 PM (GMT -6)   
Dear Sandi,
So very sorry hun....that is very scary! I am sorry that I do not know what to say except that you are in my thoughts and prayers! Be careful and take care of you!!

Very gentle hugs,
Beckey
Rheumatoid Arthritis, Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus

Medications - MS-Contin, Plaquenil, Cymbalta, Famotidine and currently Prednisone

momtofourangels
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Date Joined Apr 2010
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   Posted 3/5/2011 9:04 PM (GMT -6)   
Hi Sandi. It's me again. Maybe you should use your wheelchair until you see what the dr. has to say just to be on the safe side. Just my thought on trying to help you. I feel so bad for you having to go thru this. I hope you're not in too much pain. Bless your heart. I'm still praying for you and will continue. Take care of yourself.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees

mrsm123
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Date Joined Dec 2007
Total Posts : 1235
   Posted 3/5/2011 9:57 PM (GMT -6)   
Hi Stray,
No, this guy is a brand new spinal cord injury physiatrist/Pain Management doctor.He is from NYC and he and his partner agreed to take over the pain management program here a couple of days a week.  He does work in the same office as my original surgeon though.
As far as the brace goes, I am actually afraid of putting one on because of the way the lumbar area looks, as well as the placement or lack thereof of the screws. Two of the screws are really close to the spinal nerves, it looks like they are in contact with them so I want to be really careful not to cause any further contact with the nerves if I don't have to.
Either way I could develop worse problems than I have now, whether or not I choose to let it go or to have surgery.  And a multi level fusion doesn't have good odds to begin with, even less so when there has been  previous failures.  The thing that worries me is the condition of the vertebre, I don't see how they can do a successful multi-level fusion when the vertebre are falling apart. And they have already gone through L4-5 twice to attempt fusion so going in there a third time seems almost impossible to me, especially from both sides.
You are right however, worrying isn't going to change things and Monday will be here soon enough I guess. Whatever happens on Monday is going to happen and then I will have some decisions to make....
No matter what they say, I am going to have to prepare myself for several consults......especially if I have to have surgery again, this time I want to make sure that things are going to turn out better than they have so far.
Sandi

mrsm123
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Date Joined Dec 2007
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   Posted 3/5/2011 9:59 PM (GMT -6)   
Thanks Becky.........this weekend sure is dragging along........maybe that's a good thing.
Sandi

mrsm123
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Date Joined Dec 2007
Total Posts : 1235
   Posted 3/5/2011 10:05 PM (GMT -6)   
Hi Pebbles,
I was lucky in that they took forever to get the approvals for the MRI's , so it just worked out that they were on Thursday and Friday and my appointment is on Monday.........at 11:30. It's the first time that I haven't been the first appointment in the morning in months, so going a bit later gives the MRI facility time to get the report finished and faxed over there.........
I'm glad that your mom get some relief after her having to have a second surgery. I'm afraid that too much time has gone by to fix any of the nerve damage. Even without the structural problems, the compression on the nerves has been 5 years so I don't think there is going to be much in the way of improvement there.
I have learned far too much about MRI's of the spine since 2006 and how to read what is there.......sometimes, a little knowledge can be dangerous. I wish that I didn't recognize what I see.......it would make getting through this weekend that much easier.
Sandi

mrsm123
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Date Joined Dec 2007
Total Posts : 1235
   Posted 3/5/2011 10:08 PM (GMT -6)   
Hi 9yrsicp,
I thought about using the wheelchair too but the only places I have been so far since Thursday have been to my best friends' mom's funeral and to her brothers today..They both passed away within a day of one another and I couldn't not be there for her. She's been my best friend for many, many years.........
I would hate to let her down and it helped me to focus on helping someone else, instead of myself.....I don't expect him to tell me that driving or walking around is a good idea though on Monday.I do think he will tell me to use the chair.
Sandi

Retired Mom
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Date Joined Feb 2010
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   Posted 3/6/2011 10:51 AM (GMT -6)   
You are still so on my mind that I couldn't help posting again. I feel so for you.

I wasn't suggesting the brace without proper approval....just a possibility if they recommend it. Weak muscles are very, very bad, but a collapsed back is much, much worse. I was just thinking of stabalization, but I didn't consider the screw placement and the additional damage it could cause.

On a separate note....have you ever had your pituatary gland checked? I found with my HGH deficiency that my bones (and teeth at the gum line) were deterriorating at an alarming rate. With the shots I now take and the addition of tremendous amounts of vitamin D, magnesium, calcium and whatever else in is the non-stop suplements, that the bone "seems" to be hardening back up. It didn't help me fuse, but it may help keep me from having what you have now. It's strange in that my fusion bone insert must have "burst" in some way because the bone grew to the side instead of from L5 to S1, where it should have. This means the MRI's are showing a bulging disc at L5-S1, where none exists...it's just bulging, growing bone.

It still seems like something is missing here badly.....like why didn't they have any idea of the bone deterrioration when they did the fusion? Has it escalitated at such a rate that the bones are simply breaking? Can injectable cement help?

I may be making what seems like "stupid" suggestions, but they are all I know to suggest. I so hope you appointment goes well and you have the answers you need to make informed decisions from this point forward. There just has to be something you can do to have this fixed.
Failed fusion L5-S1, Pituatary damage, HGH Def, Fibro, Bladder surgery failure, Nissen Failure, GERD, OCPD, GAD, MDD, CTS (Bilateral Surgery completed), CFS, TMJ, Migraines, Vit D, A, Magnesium deficiency, Pre-glaucomic (sp?), HBP, Idiopatic Reactive Hypoglycemia, Edema, too many Drug/Food allergies, sensitivites, and current meds to list.

Blessedx8
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Date Joined Aug 2008
Total Posts : 3193
   Posted 3/6/2011 8:11 PM (GMT -6)   
Hey Miss Sandi...

So good to see you posting here... I only have a second or I'd have so much to say.... but wanted you to know you are in my prayers, my friend.

More soon -- Love, Tina
Main Health Issues: Dysautonomia/POTS; CFS/Fibro; Chronic Pain (back issues, migraines, carpal tunnel, among other things); Chronic Hypertension; Hypothyroidism and Hypoadrenalism; Mixed Sleep Apnea (on BiPap); Depression/Anxiety; Vitamin D Deficiency.

tmjpain
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Date Joined Oct 2008
Total Posts : 2024
   Posted 3/6/2011 9:02 PM (GMT -6)   

I am praying for you Sandi.

May God be at side while you go thru this difficult appt. tomorrow.

We are all here for you. We love you and we care about you.

Suzane


Chutz
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Date Joined Jan 2005
Total Posts : 9090
   Posted 3/6/2011 9:37 PM (GMT -6)   
Hi again~~

I too am so sorry you're having to deal with this again. Some things in life just aren't fair, are they? But we still have to push on...K?

One thing I think I'd do if that much of my back was involved is to get opinions form the best doctors I can find. The basic 'second opinion". In the Chronic Pain 101 thread at the top of the page is a link to university/teaching hospitals around the country and the world. I would get myself to the closest one and have them give you an opinion and/or treatment. With so much going on back there I have to agree with straydog...I'd worry about something pushing into the spinal column or nerve roots and causing more damage. It sounds like you need to be stabilized asap.

Instead of you having to find that link and list, here is the list of teaching hospitals/universities where you can find cutting edge technology and research and the link also. I hope something in here is helpful to you.

Love and hugs!
Chutz

en.wikipedia.org/wiki/List_of_university_hospitals


* Albany Medical Center Hospital, Albany
* Mount Sinai Hospital, New York City
* Nassau University Medical Center, Nassau County
* New York-Presbyterian Hospital, New York City
* New York University Medical Center, New York City
* North Shore University Hospital, Manhasset
* State University of New York Downstate Medical Center, Brooklyn, New York City
* Stony Brook University Medical Center, at SUNY Stony Brook
* University of Rochester Medical Center, Rochester
Moderator on the Fibromyalgia and Chronic Pain forums
~*~*~*~*~*~*~
Daily Donnybrook: Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a couple of other adjunct agitations.

"Gravitation is not responsible for people falling in love." Albert Einstein
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