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Old 10-07-2006, 03:21 AM   #1
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Join Date: Oct 2006
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Tobby HB User
New Here Desperately Seeking Help !

Hello

I'm new to this forum and as the tittle suggests am desperate to find out anything which may help my wifes pain (no I don't mean me).

She has suffered with severe back pain for most of her adult life which has now become so severe that it is almost unbearable.

She has been diagnosed with Spondylitis and degeneration of the lower spine (discs L5 -S1)

Having seen many specialists and pestered the life out of our GP we feel no further forward, she has tried acupuncture, various injections, proding, poking, physio, etc, etc, and is recently been prescribed Morphine.

I realise that everyone on this forum may also be suffering pain but am wondering if this sounds familiar to anyone and would be extremely grateful for any feedback or advice which other members may have, (treatments, opertaions, etc.)

Thanks

 
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Old 10-07-2006, 07:54 AM   #2
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Join Date: Jul 2006
Location: Port Huron, Michigan
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Coast Guard Dad HB User
Re: New Here Desperately Seeking Help !

Well, it is a long journey isnít it? Moreover, all through this, everyone is saying that surgery is the last thing that you should do. In my case, it should have been the first thing I should have done. I suffered for years until it ran me down to not being able to work. Second opinions with the right Doctor can open windows. Did you check out an Ortho or Nero Surgeon that only works on spines? That is whom you need to see. Your GP can only give her drugs that do not fix anything. Sometimes everything short of surgery is just bandaids. Get a fresh MRI on a new machine, drive across the State if you have to. Keep searching, in this day of technology, you have to be almost trashed in an auto accident beyond repair, not to get good results from surgery. It sure helped me after jumping through all the hoops of shots, drugs, and pt first.

 
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Old 10-07-2006, 05:12 PM   #3
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Join Date: Oct 2006
Location: Brooklyn, NY
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Diedre HB User
Re: New Here Desperately Seeking Help !

Hello Tobby:

I think it's wonderful that your wife has such a loving, caring and concerned husband, that was able to find this forum. I do hope it gives you a better understanding of what she is going through, and provides you with the knowledge you need, so that you can suggest other options for her, in order that she find some relief. I also hope that it provides you with some comfort, it sounds as though you could use a little TLC, yourself. I am new to this board, and I will tell you what worked for me. Just read, learn and take the experiences of some on this board that have been through hell and back, to heart. If there is a way for your wife to get involved, it would really help her to understand that she is certainly not alone in her feelings, or the pain she is experiencing. That is sometimes, half the battle. If you continue to stay involved by reading, asking the necessary questions, and listening to the senior members, such as Coast Guard Dad, you cannot go wrong. I wish you, and your wife, most sincere hopes for relief and a better quality of life. Best wishes to you both,
Diedre

 
Old 10-07-2006, 09:04 PM   #4
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Join Date: May 2006
Location: Berryville, Virginia
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Justoneofus HB User
Re: New Here Desperately Seeking Help !

Hi Tobby and welcome to this forum. You are not alone here. There are a few spouses and significant others here that post trying to help their loved ones and understand their pain a bit more.

Has any of the specialists that she has seen offered her surgery of any kind to relieve her pain? Often conservative treatments offer temporary relief and really are not "fixes" to our problems. How was she diagnosed.. by MRI and how long ago?

I know you are in the UK, so your system works a bit different than ours here in the US. Do you have another appointment with a new specialist hopefully? She needs to continue to try and get some relief.

I agree with Diedre that maybe the two of you together can use this website to read and learn about others with similiar issues to share stories and ideas.

Me, im 44 yr old female. Hurt my back at age 18 originally. Badly hurt it 3 years ago and got to the point I could barely walk. I too went through all the conservative treatments before surgery was offered. I was told I had DDD (degenerative disc disease) and a bulging disc at l5/s1. The surgeon I had for 2 years was doing what your wife has done, sent me for injections, medicated me as needed, and sent me for PT (which is your physio). Nothing worked for any lenght of time. The doctor on the last visit to her said I had DDD, would suffer many years of agonizing pain and to live with it. I couldnt believe that a spine surgeon was telling me that. If I could have lived with it, I would not have seen her. I would have been out living my life.

So I went on the search for answers and went through 3 doctors before finding my current surgeon. This surgeon examined me, looked at my mri films and said I had been put through the wringer for a long time. He ordered a discogram test to be sure where my pain was coming from. During this test, a surprise was discovered that was not showing on the mri at all. The l5/s1 disc was not causing me pain, but the one above it was. l4/l5 was badly torn and leaking out and on the verge of collapse. The MRIs never showed this disc being bad off at all.

I had surgery in april of 2006. I had a fusion (removal of the disc) at l4/l5, cages with a bone protein and my own bone were put in the space and rods and screws were put on each side of that area to hold my spine in place. Within a few hours of waking, my horrible pain was gone. I started PT at week 13 I think it was and still go twice a week. I have some ups and downs but I seem to be doing pretty well so far. It's not a guarantee, but it's a hope of lessening the pain and living life a bit better, with less pain. As my surgeon said..he can only do the surgery, the rest is up to me and the powers that be.

I think it's wonderful of you to look for educating yourself about your wife's condition and doing what you can to help her. She is very fortunate to have you. Keep fighting for her and for you too. Her pain is also your pain, but you already know that.

Take care. And keep posting and updates us on the two of you. Tammy

 
Old 10-07-2006, 09:36 PM   #5
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VAMPGRRL12 HB User
Re: New Here Desperately Seeking Help !

Hi there,

Same here. I had to go thru for two years all the conservative treatment before the pain go so bad that my doctor finally offered surgery. I have DDD and herniated discs l5 s1. My doctor said the same that if will get worse but if you can live with it to do so or opt for surgery because it will get worse down the road. I had a 2 level fusion in July and am still recovery but getting much better everyday. I have good & bad days but compared to what I had before it's a big change. I have some other issues that have come up but wouldn't change anything.
Just always make sure that the doctor checks everything thru first before opting for surgery(mri's, ct's, discogram). My doctor first looked at my mri's and saw 2 herniated discs but wasn't positive that it could be causing me so much pain. Only till he had me do the discogram did he fully understand. As well during my fusion when he found my l5 disc almost totally gone & the next well on it's way. I'm really happy how my doctor handled everything because he covered all bases before doing the surgery. Good luck to your wife.

 
Old 10-08-2006, 02:11 PM   #6
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technomom HB User
Re: New Here Desperately Seeking Help !

I agree with Coast Guard dad you need to find a spine specialist, even then he will try conservative treatment. My doctor didn't offer me surgery, until he saw my leg collapsing as I walked. Good thing he did because I had a bone spur that was flattening my nerve, which had turned white.

 
Old 10-08-2006, 02:37 PM   #7
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Join Date: Apr 2006
Location: United States
Posts: 372
kera4 HB User
Re: New Here Desperately Seeking Help !

Hi! I agree with what all the others have said. In addition, if she has spondylitis, which is an inflammatory arthritis which can affect the spine, you should consider seeing a rheumatologist as well. I have spondylitis as well as degenerative disc disease at L5-S1. What I discovered is that I have joint pain from the arthritis in the facet joints along the side of the spine, as well as the disc pain. It took a lot of trial and error in getting injections in different locations to figure this out. It is very common for spondylitis to cause pain/damage in the sacro iliac joint as well. This is the area I first received my injections, but the pain actually was higher up in lumbar area for me. There are also a lot of medications to try to slow down the spondylitis-I am currently on Enbrel. It won't do anything for the bad disc, but it will help the arthritis. Good luck! Kera4

 
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