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  #1  
Old 06-18-2015, 12:33 AM
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Phatbird Phatbird is offline
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Default I'm New Here!! Looking for some support!

Hi,

I am a 34 year old woman and I have been suffering from chronic low back and pelvic pain for 8 years now. My pelvic pain is waaaaayyyy worse than my back pain and was wondering if anyone here has had success in treating both of these pain conditions with ADR? I have been on disability for 6 years now and I really want to get my life back. I have tried everything from meds to PT to surgery to help resolve my pelvic pain with limited success. I'm seriously sick of having to sit/lay on ice packs and not being able to live my life. Not being able to provide for myself is also extremely frightening!

I'm gonna go out on a limb here and just splurge my symptoms out to all of you. I experience pain in my entire perineum. Yes, everywhere down there between my legs. Going to the bathroom, sitting, standing, sex .... is all very painful ALL of the time! Anyone else out there experience these symptoms and have been helped by ADR surgery?

My entire body is a real mess. I have SI joint dysfunction, mild rotoscoliosis, retrolisthesis of my L4/5 vertebrae, DDD and osteophytes in lumbar spine as well as disk bulges and annular tears. Oh and then there's my neck. I don't experience neck pain, but I have straight neck (which isn't good) and disk degeneration at C5/6 level. I also have disk degeneration at T10/11.

Sooooo, all the docs that I have seen (which is a lot) say that my pelvic pain has nothing to do with my spine. I'm not 100% convinced that this is the case. Any feedback at all would be greatly appreciated.

Thanks so much!!
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C5/6 - mild DDD with shallow posterior bulge
L2/3 - mild DDD with loss of disk height. Shallow broad posterior disc bulge with a central annular tear. Some pressure on thecal sac.
L3/4 - same remarks as L2/3
L4/5 - shallow posterior disc bulge with a superimposed LEFT foraminal disc protrusion that encroaches upon the undersurface of the exiting LEFT L4 nerve root.

Mild rotoscoliosis centred at L3 and 4mm retrolithesis at L3/4.
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  #2  
Old 06-19-2015, 04:32 PM
annapurna annapurna is offline
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The problem with your list of problems is that you have so many that it's difficult to figure out what started what. You could easily point to any one of the major problems you have listed and show how that one problem could lead to all of the others. They could also be symptoms of some deeper problem that's making it easier for these things to show up. Did you have the scoliosis or retrolisthesis from very early, childhood maybe? If not, do you have any obvious contributors that might be the source of the underlying problem? Smoking is the best known one but prolonged bad diet or others can contribute.

The reason why I ask is that you have enough going on that simply having ADR surgery is unlikely to resolve everything. For that matter, fusions and S-I joint disfunction aren't a happy combination either. If it was me, and this advice is worth less than you're paying to hear it, I'd try to get a really comprehensive physical and look at non-surgical options for some of the problems you're facing. Because it works for me, I'd try prolotherapy on the SI joint and neck as well as the lower back. Something like that can help with the SI joint and neck. It might help stabilize the lower back to buy time for a better diagnosis and treatment plan.

Again, if it were me, I wouldn't attempt surgery until you have a better idea of what of your conditions are symptoms of your other conditions. I happen to think that the retrolisthesis and rotoscoliosis will mean that ADR isn't the best bet for you but I hope that I'm being conservative on that call. On the other hand, just replacing the damaged lumbar disks with ADRs or fusions doesn't seem like it's going to do enough to treat your overall situation.

On a last note, anyone who tells you that your pelvic pain and SI joint problems aren't related to your spine problems needs to spend a lot of time re-reading their anatomy texts.
__________________
Laura - L5S1 Charitee
C5/6 and 6/7 Prodisc C
Facet problems L4-S1
Knee, Shoulder, Toe, Finger, Elbow Problems

Jim - no spine problem but lots of other fun medical challenges

"There are many Annapurnas in the lives of men" Maurice Herzog
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  #3  
Old 06-22-2015, 03:08 AM
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Phatbird Phatbird is offline
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Thank u for the reply. I do have a lot going on and I do have that feeling that ADR may not be good for me with all that I have going on. I also thing that my pelvic is a result of all of these things adding up over time, through out my life. I am pretty sure that I thrashed my back from lifting very heavy trays when I worked as a waitress when I was younger. It didn't hurt back then. Ugh....

I have tried almost every alternative treatment there is out there to improve my pain, but I'm still in a bad way. I haven't tried prolotherapy though. Was always afraid to do that one too because it causes inflammation.

I know what u mean about doctors needing to take another look at their anatomy literature. It seems they only know anything about organs and nothing about the muskoskeletal system. It's beyond me how silly this is.

Thank u very much for your honest opinion. I don't think that I will likely be an candidate for ADR because of all of the issues that I have going on. It's just a shame to be so broken at such a young age. I'm very afraid about having to be this way for the rest of my life. I guess that acceptance is something that I will have to swallow for this life time. It's only one life that we get to live and that's what really hurts me in all of this.
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C5/6 - mild DDD with shallow posterior bulge
L2/3 - mild DDD with loss of disk height. Shallow broad posterior disc bulge with a central annular tear. Some pressure on thecal sac.
L3/4 - same remarks as L2/3
L4/5 - shallow posterior disc bulge with a superimposed LEFT foraminal disc protrusion that encroaches upon the undersurface of the exiting LEFT L4 nerve root.

Mild rotoscoliosis centred at L3 and 4mm retrolithesis at L3/4.
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  #4  
Old 06-23-2015, 05:07 PM
annapurna annapurna is offline
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Most important comment: you don't have to put up with this situation your whole life. You do have options to mitigate conditions, reduce pain (not just taking more drugs), and try to become more functional. If I left you with the feeling that you're not going to get off the rollercoaster, I apologize. I just think it's going to take a lot of research and talking with doctors before you find a combination of things to resolve this. I personally, and remember I'm not a medical professional, can't see you resolving all of what you have going on with a single surgery or simple set of surgeries.

I suspect that you're going to have to pick one problem and work on it a bit, then move on to another problem and work on it, and so on. Each time each problem gets addressed in the queue, you'll improve a bit but you're probably not going to easily fix one then move on to the others. If you pick one, either the most painful or the one that's degenerating the quickest, and start earnestly talking and researching ideas, this community will help you with what they've learned. The idea would be to at least stabilize the condition, if not improve it, then pick the next worst of your problems.

Above all, don't give up. It ain't over and new ideas are coming up all the time.
__________________
Laura - L5S1 Charitee
C5/6 and 6/7 Prodisc C
Facet problems L4-S1
Knee, Shoulder, Toe, Finger, Elbow Problems

Jim - no spine problem but lots of other fun medical challenges

"There are many Annapurnas in the lives of men" Maurice Herzog

Last edited by annapurna; 06-24-2015 at 11:41 AM. Reason: moving a comma for clarity
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  #5  
Old 06-23-2015, 05:50 PM
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Cynlite Cynlite is offline
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Well said Annapurna!

Phatbird, you can't give up and you have to try and stay positive in spite of the pain! I know how hard it is to do. BTW, there is a Facebook page "Cervical Disc Replacement Surgery" that is very active. You might find the people there will also help to give you the emotional support needed. None of us can go this alone. When I found these two communities, they really have helped me a lot in so many ways.

I have practiced many different things on myself to see if they made a difference in how I feel. I made drastic changes to my diet focusing on eliminating inflammatory foods. I don't drink caffeine. I only drink wine occasionally now because I've noticed that alcohol makes me feel worse. I juice with lots of ginger and turmeric. I started slicing ginger into my green tea. I stretch and try to move as much as I can. I can't exercise like I used to but, I know that movement is very important. Do what you can do so you don't lose it! I try to take drugs as little as possible because while they can help in the short term, there are always the side effects. I think that meditation and/or prayer are important because they help us to relieve our stress levels. Try to figure out what works for your body and control what you can control.

This year, I started seeing an Endocrinologist. Using some bioidentical hormone creams have helped me to have more energy. Low testosterone = higher pain. It's good to have your hormone levels checked regularly to make sure they haven't gotten screwed up by the narcotics and other drugs. Having your hormones messed up can be pretty awful just by itself.

Have you ever been tested for interstitial cystitis? It can create severe pelvic pain.

Also, I take what the surgeons say with a grain of salt. They do not know everything and some are just wrong. I believe that what they don't know about the spine is a lot more than what they do know about the spine. I've read many miraculous stories on this board. The surgeons really can't speak about the atypical symptoms or referred pain because each person is so unique. They tend to focus on typical symptoms that affect the majority. I believe they do the best they can with what they know. I just keep searching for the very best doctors to add to my team. Little by little things improve. Just keep seeing all the various specialists so you can rule out what you don't have. It helps to figure out what you do have going wrong with your body. Good luck to you!
__________________
2006: epidural shots did nothing; 2 surgeons recommended 2 level fusion, I declined.
2007 - 2010 4 foraminotomy and cord decompression cervical surgeries and 2 endoscopic discectomy T7-T8 surgeries; total 6 with Dr. Jho (Pittsburgh,PA) My C6/C7 autofused around 2009.
2013 - 2015: epidurals 3 times (again did nothing) and 4 Radiofrequency ablation (or RFA) procedures.
2016 more RFAs, hit the 10 year mark of this insanity and pain, 3 level M6-C ADR with Dr. Clavel May 19, 2016
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  #6  
Old 06-28-2015, 07:19 PM
TheGrt8 TheGrt8 is offline
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Hang in there babe! Remember these people aren't doctors. Let Clavel and Bierstedt get back to you. IC, Fibro, food sensitivity, hormone levels, is all a bunch of crap! It's your spine!! Don't get discouraged and read some bs. I was told the same stuff. I had this, that, low testosterone, food allergies, fibro, can't eat or drink certain foods and to see a naturopath, take supplements, and look at me now. I eat and do whatever I want, when I was in pain from head to toe, which you know :-) xx
Just another way of our 3rd world health care system and doctors to make tons of money off of us. Yeah my back, neck, and crotch hurt because I ate a piece of cheese, bread, mushrooms, milk, and didn't drink ginger tea or take care of my body and eat right haha. What a joke! Focus on Clavel and Bierstedt and disregard holistic crap, like stated above. Have you been tested for lime disease, etc. Insanity!
__________________
May '15, 3 level ADR with Clavel
2 ADR M6-C at C5-7 (2 6mm)
-Loss of disc height (DDD), osteophytes, approaching thecal sac with severe nerve compression. On the verge of paralyzation per Dr Clavel, but spine was fine per 40 US Nueros/quacks
1 ADR M6-L at L4-5 (1 10mm)
-Torn disc (fissuring), loss of disc height (mild DDD), approaching thecal sac as well
*Gained 1 1/2- 1 3/4 inches in height due to M6 disc height, and perfect lordosis now
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  #7  
Old 06-28-2015, 10:06 PM
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Harrison Harrison is offline
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Wow, I've not seen unsubstantiated, wild comments like this in a while:

"...IC, Fibro, food sensitivity, hormone levels, is all a bunch of crap! ..."

TheGrt8, none of us are in a position to make such sweeping conclusions. Many patients in this community have had one or more of these conditions. I personally know of several patients that have in fact adopted naturopathic routines and markedly improved their pain levels -- even avoided surgeries.

This is the second time in two days someone alerted me to your comments. Please try to be more careful when you post!
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"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
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  #8  
Old 06-28-2015, 11:05 PM
TheGrt8 TheGrt8 is offline
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I apologize, but I've been taken to the bank regarding all that stuff. It's not the answer. I'll be more conservative with my responses. I'm on here to share my experiences and to try to help.
There are many I know who have been diagnosed bogusly, and it can only be one answer, The Spine. Sciatica, IC, Fibro, neck, arm, leg, ankle, feet burning, crotch pain, doesn't come from eating a pickle, drinking milk, or having a slice of pizza. It certainly doesn't get better from drinking ginger or green tea, or eating a different way, and certainly not due to your hormone levels. This is not Cancer! My father has a strict diet, as he has the worst and rarest form of non hodgkin's lymphoma. That's when diet and supplements come into play.
Btw, these people shouldn't complain or report people. I did nothing wrong, and this isn't high school! I'm fairly smart and have done tons of research. I see lots of posts that could be offensive, it's called opinions.
__________________
May '15, 3 level ADR with Clavel
2 ADR M6-C at C5-7 (2 6mm)
-Loss of disc height (DDD), osteophytes, approaching thecal sac with severe nerve compression. On the verge of paralyzation per Dr Clavel, but spine was fine per 40 US Nueros/quacks
1 ADR M6-L at L4-5 (1 10mm)
-Torn disc (fissuring), loss of disc height (mild DDD), approaching thecal sac as well
*Gained 1 1/2- 1 3/4 inches in height due to M6 disc height, and perfect lordosis now
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  #9  
Old 06-29-2015, 10:21 AM
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jss jss is offline
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Phatbird,

Condolences on all you've got going on. To say that sounds challenging, I know, is an understatement.

From experience I've recently learned that in some people it can be hard for doctors to differentiate between pain caused by lumbar/SI issues, and pain caused by severe osteoarthritis of the hip. In some, both present with the same symptoms. I don't know if can be helpful to you, or if you've already strode that path, but FYI...

Wishing you the best.
__________________
C4/5 - ACDF in 2000
C5/6 - ACDF in 2002
C3/4 & C6/7 - M6 ADR, Nov 2009, Barcelona
Conceded defeat to a manifestly disingenuous BCBS-TX in my quest for reimbursement, Jan 2011
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  #10  
Old 06-29-2015, 04:50 PM
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colorado babe colorado babe is offline
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Phatbird. I am sorry you have so many things going on. I have tried almost every holisitic treatment out there for my myriad of medical issues. There is one thing that helped and that was stem cells. Last year at this time, I was at my worst. I had pain all over my entire body -- even the hairs on my head hurt. When I went to see my surgeon, he informed me that he could use my stem cells to heal my body. I did it, almost one year ago and every fibromyalgia symptom I had before is gone. I also had surgery (ADR and fusion) in October and I truly believe that the stem cells enabled my body to heal faster. Please don't listen to the negative comments, I truly believe if you do your research and not give up, you will persevere. Good luck and I am thinking of you.
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1998- Injured neck and back in USAF
2011 - Started experiencing Severe Symptoms, Migranes, numbness, spasms in legs and feet and sciatica.
Feb 2014 - Received upper Lumbar Injection - Severe Allergy to injection
Mar 2014 - MRI of Cervical and Lumbar, protruding disc in C3-7, Herniated Disc in L5/S1, placed on STD and FMLA )
July 2014 - Stem Cell Procedure performed
Oct 20, 2014 - ADR (MOBI-C) at C5-7 and Anterior Fusion at L5/S1 by Dr. Pettine and Dr. Techy
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