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VicoVixen
New Member


Date Joined Jan 2010
Total Posts : 10
   Posted 2/7/2010 7:08 PM (GMT -7)   
Hello!
 
I had posted on here a week or so ago and wanted to formally introduce myself to the group.  I was using the name Bionic Jill but decided to switch it up to something that made me chuckle.  Any laughs are good laughs.
 
I've been to a number of chronic pain/spine health forums and this one struck me as being one of the more upbeat and supportive ones.  Exactly what I'm looking for! 
 
Fortunately my foray into the world of chronic pain is a relatively new one.  Since adolescense I've had bad pain in my thoracic spine but I always attributed it to being top heavy.  Once I hit 25 it began to be bad enough to keep me up at night and to make it so that I couldn't sit through an entire football game (which is not good when you're a season ticket holder!!!). 
 
In May 2008 I made the mistake of taking an Ambien and sleeping on my back.  At the ripe old age of 28 I woke up unable to walk.  I could shuffle but the pain was incredibly intense.  I immediately found a chiropractor that I was able to see that day.  Driving was agonizing, pushing the gas pedal was almost more than I could bear and forget about checking mirrors.  He took me in and began cracking and popping away.  After 2 weeks I was still unable to move.  I went to my friend who is a chiropractor and he took xrays.  Turns out that I had spondylolithesis at L5/S1 and he referred me to a surgeon.  The first chiropractor happened to have been adjusting me in the direction that my spine was already sliding.  No wonder I didn't get any relief!!!
 
I went to 2 surgeons and decided on the 2nd one to do my surgery.  Both of them said the same thing, that they would be willing to let me try physical therapy and more conservative treatments, but that ultimately since I had a pars defect (the actual fracture) that the only real solution would be a fusion.  After much thought and debate I decided to go with the second doctor because he had a longer history of doing the surgery and was willing to do an ALIF with a vascular surgeon handling the approach and close up.  The first doctor only wanted to do a TLIF because he felt uneasy about doing an ALIF with all of my prior abdominal surgeries.  I don't regret my decision at all about anything.  I had my ALIF done on 4/20/09.
 
My recovery has been quite a long process.  I'm still incredibly optimistic for 2 reasons...  it's in my genetics to be optimistic and because I'm not even a year out yet.  I was out of work for 3.5 months and at 3 months I was cleared to begin physical therapy and did that for 3 months.  My pain is now not at the fusion site but it has migrated down to my SI joints, with a vengeance!!!  My surgeon finally decided that he had done what he could regarding my post-surgical pain and I'm now seeing a PM. 
 
My PM has me scheduled for steroid injections into my SI joints on 3/5/2010.  I am willing to give it a try, heck, I'm willing to give anything a try at this point, but I have some concerns too.  It seems that people who have a fusion are almost twice as likely to have a second one.  Steroids also break down the body to a certain point.  It seems that injecting something that could potentially harm the overall health of the joint that is one level below where I was fused may not be the best idea for long term health.  An SI fusion has already been mentioned in passing by some other doctors and I want to make sure that I keep my SI joints as healthy as possible.  So between now and 3/5 I will arm myself with as much information as possible so that I can make the best decision for my situation.
 
I'm tired of hurting and am in the process of determining what my new reality is and coming to terms with that new reality.  Through this whole process I have always hoped for a best case situation and in the past 4 months have realized that I will never be like I was before May of 2008.  As you all know, it's a tough mental adjustment to realize that the pain is a forever thing.  I'm still figuring out to what extent my forever-pain will be.
 
In the meantime, my upper back has been so inflamed and painful from my scoliosis that at times it hurts more than my lower back/ SI joints!  As I'm sitting here it feels like I am being stabbed and punched and I've already taken 2 of my Vicodin.  One thing that I learned about my lower back is that I have to be agressive with this all. 
 
Operation Happy Spine begain last Tuesday with seeing my PM and next in line is more PT, deep tissue massages, steroid injections, and aggressive chiropractic care/massage therapy for my upper back pain.  I plan on talking to my surgeon about it when I see him next (which is in April).
 
Oh goodness I rambled!!!  It felt good to get it out though, especially with people that get it.  Since I look healthy (until I walk because then I limp around) people seem to think that my surgery has failed or that I'm completely okay.  Either way I feel like I am always having to defend my back surgery and pain medication. 
 
I look forward to getting to know all of you so much better and hopefully being able to put a smile on your face when you need it the most.
 
Now for my first question!  Do any of you have any thoughts on my concerns with the injections?  I need to do a lot more research, because they were discarded as an option immediately by my surgeons I haven't absorbed every piece of literature on them yet.  Also, if you've had them, specifically in the SI joints, did you get relief and if so, how long?  They are using some sort of sedation because I can't eat for 6 hours beforehand.  I meant to ask for more details but was so relieved that the pain doctor didn't think that I was a recreational drug user and actually treated me with a lot of respect and care that my mind went into a happy place.
 

Jill, 30 years old
 
I'm coming to terms with my new reality.  I'm hoping to reach the point where there are more good days than bad, where I don't wake up every morning knowing that I'll hurt all day, where I can fold laundry AND grocery shop in the same day, where I don't have to think about the hurt.  Eternal hope keeps me going.
 
Current Back Issues:  Scoliosis, severe SI Joint pain resulting from ALIF at L5/S1 on 4/20/09
Other Issues:  Bipolar disorder, Idiopathic Hypersomnia (similar to narcolepsy)
 
Current Medications:  Vicodin (7.5/325 up to 6 per day), Lamictal, Lexapro, Effexor XR, Trazodone, Provigil, Adderall, Ambien CR
 
Other Treatment:  Chiropractic care, Massage therapy (ouch!), Physical Therapy (completed 3 months for core/lumbar and about to begin for SI strengthening)
 
First steroid injection into both SI joints on 3/5/2010!  So nervous and am debating the wisdom.


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 2/7/2010 7:38 PM (GMT -7)   
Good Evening Vixen! Sounds like you have been through the ringer a time or two. I just wanted to welcome you here, and I'm sure there will be members who can better discuss your problem with you. I three weeks out from my own surgery for a fusion in the lumbar area. Dealing with constant pain for the last 6 to 7 years has finally caught up with me. I hope all goes well for you, and please keep us informed as much as you can.

Michael

VicoVixen
New Member


Date Joined Jan 2010
Total Posts : 10
   Posted 2/7/2010 8:02 PM (GMT -7)   
Oh wow! Three weeks out, how are you doing? What approach did they take? I had the ALIF but have 5 incisions, one on my abdomen and 4 on my back.

My poor mother is constantly wondering where she went wrong, or what she could have done better, with my sister and I. We both are prone to having random and rare issues. I've also had a few other issues, some of which still impact me today. At 18 I had an ovarian tortion and it wasn't diagnosed until I was in the ER having to have emergency surgery to remove a watermelon sized cyst and the dead reproductive organs. I still have pain resulting from that. I also fell victim to an eColi infection in the early 90's, right around the time that Jack in the Box had contaminated meat and my kidneys still have issues from that. To top it off I am also prone to sepsis. I almost had to have an elbow replacement at 23 due to an ant bite that had become septic and had a similar incident with my ear cartiladge. My ex used to call me a Medical Incredibe, lol. At least I feel more comfortable in medical environments than most people. Before my fusion I was joking and laughing with all of the people in the pre-op staging area. I even got the elderly gentleman who was scared next to me to crack a smile.

I figure that by having medical issues in my youth I am due to be given a break in my later years!!!
Jill, 30 years old
 
I'm coming to terms with my new reality.  I'm hoping to reach the point where there are more good days than bad, where I don't wake up every morning knowing that I'll hurt all day, where I can fold laundry AND grocery shop in the same day, where I don't have to think about the hurt.  Eternal hope keeps me going.
 
Current Back Issues:  Scoliosis, severe SI Joint pain resulting from ALIF at L5/S1 on 4/20/09
Other Issues:  Bipolar disorder, Idiopathic Hypersomnia (similar to narcolepsy)
 
Current Medications:  Vicodin (7.5/325 up to 6 per day), Lamictal, Lexapro, Effexor XR, Trazodone, Provigil, Adderall, Ambien CR
 
Other Treatment:  Chiropractic care, Massage therapy (ouch!), Physical Therapy (completed 3 months for core/lumbar and about to begin for SI strengthening)
 
First steroid injection into both SI joints on 3/5/2010!  So nervous and am debating the wisdom.


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 2/7/2010 9:30 PM (GMT -7)   
Hi Jill,

And welcome to the CP family. This is a great bunch of folks who not only understand what you are living through but above that they care. We all know what debilitating pain is like and that gives us the compassion to stick truly understand.

You sure have been through more than most people have in a lifetime. But you will find that there are many folks here who have had similar or the same problem you do in your spine. I also have a collapsed disk at L5/S1. I'm working hard to keep it from going totally nuts since the pain from fibromyalgia is more than enough on a daily bases. When I was talking to the orthopedic surgeon who operated on my hands I brought up the subject of surgery on that part of my back. The thought is not at all appealing to me! He told me that from his experience and what's he's seen around the medical circles that the majority of people who have that type of surgery are back to the same pain within two years. I can see it would be worth trying if the pain made life so miserable that there was no other choice. We all have our tipping point and that decision is one we each have to make for ourselves and our problems at the time.

OK, I think I've joined your rambling...lol I do hope you get some relief. BTW, I've had those steroid injections and it didn't do much of anything for me. They are easy and a fairly quick procedure. The worst pain was the little 'sting' to numb the area. After that nothing much else in the pain area.

Good luck and good night...
Chutz
"Knowledge is knowing that a tomato is a fruit, but Wisdom is knowing not to put it in a fruit salad."

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


privey
Regular Member


Date Joined Oct 2009
Total Posts : 453
   Posted 2/7/2010 9:46 PM (GMT -7)   
Hi Jill,
I had decompression and hardware put into my lumbar in Jan 2008. I too am prone to sepsis and to make a long story short....ended up having to have the hardware removed because my wound never healed. The hardware was removed in May of 2008... and I've had several falls since where I've landed square on my butt and now I'm again in pain most of the time.

I hope you find HW as rewarding as I do. The folks do care and they are a compassionate group and very helpful...Welcome and keep us posted. Take care because I care.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13455
   Posted 2/7/2010 9:47 PM (GMT -7)   
Hi Jill,
 
Welcome back aboard to Healing Well. Wow, you have quite a medical history like you say for someone your age. I hope you are right, you had all the bad apples when you were young and maybe this back business will be the light at the end of tunnel for you. I sure hope so, you deserve a break and a very long one from the medical standpoint.
 
It does sound like you are doing very well from your surgery. Your attitude is to be commended because that is about half the battle. The drs can do their part then the rest is up to the patient. Attitude plays a larger role than most realize. 
 
I have had problems with S1 joint on the left at L5/S1 and I did undergo the injection. I got relief from mine and it calmed things down to a more tolerable level. I can't do steroids so my PM dr used something else and it has totally escaped me what he used.  If I remember correctly I was given what they called light sedation and I had to have a driver that day. You may consider doing one and see if you get any relief. Now we have another lady on here named PaLady that has problems in this area as well and it seems to me she went to physical therapy and learned some good exercises to help with this problem. I am sure she will post on here soon.
 
One of the best things you can is research and educate yourself about your condition. We can no longer rely on drs to sit down and tell us the ins & outs, they don't want to take the time to bother with that. One of the best patients is an informed patient.
 
Keep on being optimistic, never give in to pain or give up. There are more and more new things being done every day in the medical field.
 
I can tell you PM drs are real big on doing procedures in addition to giving medications. You seem to be on a low dose of vicodin and as long as it covers your pain that is great.
 
I would talk to my surgeon about the chiropractic care that is being recommended. I am not anti-chiropractic either, but considering you have had surgery on your spine you may want to discuss this with him a little further.
 
I think you will agree this is a great group of people on this forum and there is a lot of support given and we really do learn from each other's adventures in the crazy world of CP. Anyway, welcome back. 
 
 
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 2/7/2010 10:25 PM (GMT -7)   
Hello again Vixen! I'm not doing all that well, and Thanks for asking, but there are other members here that are in a lot worse shape than me by a long shot. I simply got tired of the pain and the meds, and my Dr will not continue to to give pain meds with out going the surgery route. I'm ready for it now, so we will see how it goes. I have no idea what Alif is, so someone here will have to educate me on it. I do know that they will go in through my stomach, which is fine with me. You have gotten lots of good comments here, and these members have a lot of experience. I think you will fit in just fine here! :) Enjoy!

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 2/7/2010 11:50 PM (GMT -7)   
Hi Jill

Welcome to our Family! The epidural steroid injections can be a mixed bag, for some they work really well and for others they don't anything at all. It can even be that way with the same person depending on where they get it. I have had good luck with the Epidural Steroid injections up high around the base of my skull, but as they go lower the less effective they are and what relief I do get does not last as long! The ones I have had in the Thorasic area and the lumbar area never did anything for me! I just had my second ACDF last September, and according to my surgeon, that when you have a disk fusion you have a very good chance on need another one on either the disk above or below the fusion with in ten years. The fused area puts more stress on the disks above and below the fused area. I was luck I got close to twenty five years before I got mine. I had a C6-7 ACDF in March of 1985 and I had C5-6 ACDF in September 2009. I also have a herniated and torn disk at T12 that nobody will touch, and a herniated disk at L4-5. which I have so far been able to live with, although some times it is tough!

I think you have come to the right place Jill I really don't think you will find a more caring and compassionate group of people any where, than what you will find right here on this forum. So Welcome to our family!


White Beard
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