harrington rod HELP!

[LAUREN MICHELLE]

hi there,
i'm 42 yrs old, mom of 2 awesome, active boys. i had a spinal fusion in 1982, rod broke that year, fused again in 1983. Have been basically fine for many years...the past couple of yrs, lots of leg & knee pain...has gotten to be chronic! my fusion is from T6-L4, leaving one vertebre unfused. there's stenosis, arthritis, degenerative disc & joint disease in the lower lumbar area. Have been going to P.T. & chiropractor. have seen a couple local docs and am now seeing Dr.Boachie next week. I was wondering if there's anyone with similar situation to mine.
thanks so much!!
lauren

[augemac]

lauren,

I am sorry that you are in so much pain. I am not quite in the same situation but I feel for you because I am fused to L4 and having lots of lower back pain. I have arthritis and a bulging disc. But I saw that you mentioned that you have harrington rods still in and seeing a chiropractor. Yesterday I posted asking if anyone is fused and seeing a chiropractor. How is that going for you? I having more problems in my neck area. Any thoughts would be great?

[LindaRacine]

Hi Lauren...

You'll find a lot of others like yourself, including many who have had revision surgery with Dr. Boachie, here:

http://health.groups.yahoo.com/group/Flatback_Revised/

Good luck.

Regards,
Linda

[NancyB]

The thing that has helped relieve my back and joint pain and stiffness is drinking Monavie. That's hard for some people to believe because it seems too simple. All I know is that it has worked wonders for me. I would never tell someone it will work for them because I don't know that for sure. But what I do say is if you haven't tried it, then you haven't tried "everything". Email me privately if you want more information. nanbg@aol.com

[LAUREN MICHELLE]

thank you-chiropractor-info on Dr.Boachie-advice

thanks to you all for your kind words and advice!
As for seeing a chiropractor while having a fusion, I have been going to a chiropractor that does Network adjustments, which include very gentle touches. I've been going for a few years, and I do feel it has helped with neck pain, and general well-being. Perhaps I'd also have more back pain than I realize if I haven't been seeing one! I still, however, have this chronic leg pain that doesn't seem to budge!!
Thank you for the link to information on patients & Dr.Boachie, I really appreciate it!
my prayers and thoughts are with you all!!
warmly, lauren

[JulieBW]

knee pain

Lauren,
I am curious about your knee pain - it doesn't get mentioned here much. I have what seems to be a sensory loss, feels mostly like the muscles around my kneecap are squeezing my knee. Miralgia paresthetica has been diagnosed to account for additional sensory symptoms in my thigh, but that doesn't include the knee. I also have some aching in my calf muscles, and nerve irriation in a couple of spots in my foot. My foot also feels tight, and somewhat numb. These symptoms are worst when I stand, yet a little relieved when I put weight on that leg to stretch the tightness. When I stand, I constantly move to shift weight on and off this leg, which is a problem because I sing in a couple choral groups and you are supposed to stand still. These symptoms also somewhat limit my walking. I don't suppose your knee is anything like that? All the specialists I've seen just think I'm wierd.

[LAUREN MICHELLE]

Hi Julie,
I'm sorry for all that you're going through. The pain in my knee is more of a burning, and happens when my leg hurts for a long time & I don't lay down. My leg, in general, is very tender to the touch. I'm not sure if it's the same as what you're experiencing. What recommendations have you been given? Does anything help?
lauren

[JulieBW]

I was on neurotin for several months, but it didn't really help. Sitting or lying down helps somewhat, but I think that inactivity overall is the worst choice for us - everything just stiffens up. So I just keep doing all I can in life: walking, snowshoeing, swimming, back strengthening exercises, yoga, et. etc. One night it did keep me awake throbbing, but generally I am able to sleep well - that is a big plus, for which I am grateful. And overall, my symptoms are far less than yours and so many other stories I read here.

[rainbow2010]

My fusion grew on its own from L5 to S1. I had to have part of it removed when it was pressing on my nerves and I couldn't walk. My daughter also had scoliosis surgery and had to have knee surgery last year. Her knee doctor said that she will have to watch her right side for excessive wear due to her leaning that way a little still. He said if you curve to one side more than the other, that side (knee, hip, foot) will take a lot of extra stress.

[clwvt]

Reply to Lauren - you sound like me!

Hi, everyone. This is my very first post on this site, and I must say that when I read Lauren's post, I felt like I was reading about myself. Maybe that's an exaggeration, but -- here's my story:

I'm now 39 and I was fused from T5 to L2 in 1980 with Harrington Rods. Over the past few years, but especially the last couple of years, I've suffered with lower back & hip pain. X-rays show that my lower spine is continuing to move, and I can tell that myself just by looking in the mirror. My doctor here in Vermont didn't even want to discuss surgery when I saw him in 2007; instead he asked me to get a steroid injection in my S.I. joint because much of my pain seems to be referred to this area.

The first injection did help, and the second injection 6 months later was somewhat helpful (not like the first). I'm planning to have my 3rd injection next week. In the meantime, once the injection wears off my pain just seems to get worse. I spent last weekend attached to the sofa with my heating pad, and I've been given pain killers but they just make me dopey.

Being 39, I just can't imagine that injections & pain killers are the answer for me. I think surely I'll be headed to surgery before too long, but the thought of fusing my lumbar spine and losing flexibility is horrifying.

Any similar stories out there? Lauren, have you found any relief? Thanks for allowing me to share.

Caroline

[LAUREN MICHELLE]

Hi Caroline,You're not alone!* For the past couple of years I've been treating my pain with physical therapy, pain medicine, anti-inflamm., massage, accupunture, and lately, a nightly heating pad.* You're right, not the way it should be for us!* I've seen a few doctors so far, only one of which that specialized in revision, Dr.Boachie in NY.* He's known as a superb surgeon in his field, but doesn't participate with insurance.* He suggested a complete revision for me, incuding an extension to the sacrum.* I am going to St.Louis to see Dr.Bridwell, another well-known revisional surgeon, in March. As you know, continuing on like this, in constant pain, is not an option!!!The injections may help to keep you comfortable, but it sounds like another opinion from a doctor that specializes in scoliosis revision would be more suitable.* When I had seen orthopedics in the past, and good ones at that, they were not so eager to make any corrections!* I have found revision dr. names on this site and on the yahoo groups site under flatback_revised.Check it out, I think you'll find a lot of help there!!keep me posted and hang in there!lauren

[LynnMarie74]

Being 39, I just can't imagine that injections & pain killers are the answer for me. I think surely I'll be headed to surgery before too long, but the thought of fusing my lumbar spine and losing flexibility is horrifying.

Any similar stories out there? Lauren, have you found any relief? Thanks for allowing me to share.

Caroline

Hi Caroline. I am 34...soon to be 35 (I really dont know why I like to remind myself of this..ha ha ha) & I have been recently fused from T4 to L4...obviously leaving T5 to do all of the work for me. Im aware that in my future, I will need to have that guy fused as well..but in the mean while, I will enjoy life the best I can, with my newly fused & straighten back. The part im repling to is your very last sentence. You, for a very good reason, are fearful of a lower lumbar fusion. That is perfectly normal. I was very fearful too...being young, like you..I was afraid i would be giving up my life as I know it, as a wife & mother of a 4 yr old and a 12 yr old...both boys. I was very scared that I wouldnt be able to have a normal life after surgery...but Ive come to realize that that just isnt true. Do I have to do things a little differently?? Sure...BUT I can still do them. And the further along I am in my post op recovery, the easier they will get as well. When all is said & done, I will be able to do everything I once did. It isnt the end of the world...knowing that is was what was best for me & for my future. Im sorry to hear that you are in so much pain....back pain is the worst & hardest to treat. Do what is best for you, knowing that while lower lumbar fusion is a scary thing...it isnt the end of your normal life. Good luck & have a nice weekend!