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Hi, guys... I'm in severe need of help/opinions/feedback

Started by NYRiotGirl on 07/25/2010 10:18pm

I'm 38 years old and suffer severe back pain and have for years. About 5 yrs ago I was told by a neurologist that I had moderate spinal stenosis and told about 5 yrs prior to that I had chronic nerve damage to my C7 and L5. I went to PT for about 8 months or so until I got injured on the job. I was carrying a 150 lb snowplow part when I slipped on a patch of black ice and broke my left ankle and tore up my left knee. I've since had four surgeries on my left leg and now have been diagnosed as having Complex Region Pain Syndrome and still have trouble walking two and a half years later. I REALLY have a hard time getting around and getting any substanial exercise. I've also seen a dr in the same ortho's office for back pain that has just gotten worse over the years. About 2 months ago he told me I have degenerative disc disease with severe spinal stenosis in my neck. Significant enough that he feels I need surgery for it. And "6 months after that surgery" he feels the arthritis in my back is so bad that I need L5-S1 fusion. He's talking about the XLIF procedure. PLEASE let me know if you have any feedback regarding these surgeries or know of any neurosurgeons in the Westchester Co/Dutchess Co, NY area that I may be able to see for 2nd and even 3rd opinions. I go to pain management monthly but it really doesn't seem to help a whole lot. I'm currently on Robaxin 500mg 3x a day and Opana ER 10mg 2x a day along with Lexapro 20mg. ANY info is greatly appreciated!! Thank you!

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Hi NYRiotGirl- Wow! a lot going on . I don't have your circumstance but have had 3 knee and 3 lumbar surgeries in the past decade. Presently looking at SCS but not quite sure. I know that is used for Complex Regional Pain Syndrome as well . There are several neurosurgeons who are active on this board with listings in the "find a specialist" section of this site that might be worth a look. I also wonder if you would benefit from going over to Mayo Clinic ( Minn. /Fla/Az) where they have different specialists under one roof . The drug regimen does not sound all that great given some of what I have been on with fewer issues. Keep us posted on your progress. James

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Hi there NYRiotGirl,

I'm in New Zealand, which is worlds away from the US PharmicoMedical scene, so I can promise to offer you a completely different slant on things... You are so young, and your condition sounds so fraught that I just can't help but respond to your call for ideas / info / help. I'm not a doctor or in any way officially medically qualified, but I now have quite a bit of hard-earned experience with illness and cure, and I think I am beginning to understand a number of well-guarded secrets.

You don't mention any causes for your condition(s), except for the snowplow related injury. Have any of your doctors or specialists offered you any suggestions as to cause? Probably not, because they probably don't have a clue. Anyway, do you have a family history of these kinds of ailments? Or has there been some major illness, poisoning or vaccination reaction or some other major health event in your early life, do you know? The things you describe usually don't "just happen" without some precipitating cause. If you have any comments on this, I'm sure everyone would love to hear them.

Anyway, as I was saying, I think I'm learning a few things about human health. The very first thing is that all human health is down to one incredible, amazing, mysterious, wonderful, miraculous, extremely sensitive, highly sophisticated, complex and subtle mechanism - the human immune system. At present, no one really knows how it works, but fortunately, some people have a much greater understanding of it than others (and that 'others' includes most professional, formally trained doctors). Doctors are not taught about this, because it isn't simple, easy or black and white. How can you effectively teach something that you yourself do not understand, something that is nebulous and individual and so sensitive and subtle that it can react to something that science cannot even detect or measure? Yet this is exactly the state of the scientific understanding of our immune systems.

All the non-injury ailments you describe are in some way immune system related. Your spinal stenosis and your degenerative disc disease are the result of immune system "malfunctions". Normally, the immune system not only fights infection and disease, it also plays an important role in the process of bodily repair and maintenance, and can do so beautifully and without error for decades if you are lucky. However, somewhere along the line, you've been unlucky, and either something has caused your immune system to get (or be) out of tune with your body, or it's always been that way. So, instead of the breakdown and repair of bone and tissue being well balanced, part of the re-building process is happening too fast, so the bones in your spine are building up extra mass and constricting your spinal cord, while your discs are being eaten away.

The bad news is the surgery and the drugs aren't going to cure you. At worst, they will make your problems worse and/or greater (as seems to be happening to you already). At best, all they will do is delay the "inevitable". I say this in quotes because I believe it very probably ISN'T inevitable, but what you need is not surgery, or painkillers and other drugs. These just remove the evidence, suppress the pain and mask the symptoms while the process continues damaging your beautiful body. Surgeons' tools and all those drugs will only add to that damage.

What you need is an immune system adjustment.

Now this is where I have some experience. About 18 years ago, I lived in Washington State, out in the woods, not too far from Spokane. That summer was very dry, and the local stream dried up. I decided to use this opportunity to redirect the course of the stream by spending a couple of days' hard labour, shovelling the rocks and stones from one side to the other (so the stream didn't keep eroding the bank the house was built on).

After I'd done that, all the tendons in my right arm swelled up so badly that I could barely move my wrist. When I did, it hurt, and my tendons and their sheaths made awful squeaking noises. I figured movement would only make it worse so I rested it, but it didn't exactly improve. After a few days, I went to see a local friend who was an English-trained nurse. She told me I would probably have this condition indefinitely (forever!), and very kindly went out and bought me a top of the line wrist brace. Fortunately, I already knew that this was not the answer, and after considerable effort searching the telephone directory and calling people, I found a practitioner in neighbouring Idaho, where I went for one (very inexpensive) visit. He gave me the correct remedy and sent me off.

Within about two days, my wrist was almost completely better, and after a week, it was back to normal.

Okay, I know this isn't much of a story, but I tell it because it happened in America, so I know you have skilled people there. The next story is much better.

Last year, I developed ITP. This is an auto-immune disorder (Ideopathic Thrombocytopenic Purpura) in which the immune system attacks and destroys one's own (good) blood platelets. Long story, but at diagnosis, my platelet level was too low to detect (below 10, normal level 150-450 - not sure of units) and I was in danger of dying of stroke or other internal bleeding. I was immediately admitted to hospital and given transfusions of platelets and large doses of steroids. The next morning, after the transfusions, my platelet count was 26, but by the next day, was back to "near zero". My robust immune system ate all those platelets too. (The Medical "Theory" the doctors were using was that because Steroids are known to suppress the Immune System, suppressing it hard enough would allow my platelet levels to recover, and then, by some fluke, my immune system *might* "correct itself." An extremely hit and miss approach, which is so typical of the Western Medical System.) Knowing my immune system a little by now, I could have told you that wasn't going to happen, and by the end of the week, there was no change. My platelet levels were still too low to register, but at least the blood blisters and petechia had gone, so there must have been a few stragglers left. Anyway, because my condition was stable, the hospital gave me a pile of steroids to take, and sent me home to complete rest (because there was nothing else they could do.)

If you search the Internet for ITP (e.g.http://familydoctor.org/online/famdocen/home/common/blood/113.html#ArticleParsysMiddleColumn0008), you'll find many references indicating how difficult it is to treat, and how many people suffer chronic ITP, and even about some of the extremely drastic measures taken to try to improve the lives of sufferers, such as splenectomy! A Terrible "solution". Like pulling your eyes out because the sun is too bright. I wasn't very keen on such an awful prospect, so I immediately went back to my particular choice of local Alternative Medicine practitioner for the appropriate Immune System readjustment. After 36 hours, my platelet count was over 20, and continued to rise, and is now steady at about 260. Of course, I went off the prednisone (steroid) as soon as I could (it also has withdrawal problems so can't be done too quickly), and now take no other drugs or treatments to maintain my normal platelet level. (I'm completely cured.)

Of course, the doctors refuse to accept that my alternative medicine had anything to do with my cure and because both treatments were involved, it's virtually impossible to prove either way. Except that one treatment involved a very carefully selected remedy known to assist the immune system to correct itself, and the other used a treatment that often doesn't work, and which suppresses the very thing that good health depends on, simply because it had become confused. I'll let you figure out which treatment was most likely the cure...

I don't know what the correct treatment is for your condition, but if you're keen to get off the PharmicoMedical treadmill you seem to be caught on, I would highly recommend that you go to see an experienced, senior Homeopath. But don't just accept the first one you find. You have a serious condition that may require very careful analysis and a great deal of treatment experience to resolve. As with almost everything, some Homeopaths are far better than others, so I suggest you call up all the ones you can find in your area, explain your condition to them, and ask them to refer you to the best homeopath they know. Chances are, being the kind of people Homeopaths often are, they will oblige, and if several refer you to the same person, that would be the first one to see. Of course, I can't guarantee that they can cure you - you may have a genetic condition - but if anyone can cure it, they can, and even if they can't, I'm sure they can at least help.

Good Luck!

By the way, the first treatment for ITP, for those seeking a cure to that difficult illness, is low potency Phosphorous. It worked for me immediately, but if it doesn't there is another remedy. See a good Homeopath!

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RiotGirl,

One of the biggest things that stuck out in your story was the fact that your surgeon was considering an XLIF procedure for your L5-S1 problem. Unfortunately this procedure is not indicated for the L5-S1 level mainly because access is a problem from a lateral approach. You could have an ALIF, TLIF, or PLIF....basically these are all procedures to remove disc material at your L5-S1 level and replace with a PEEK cage, Allograft Bone, or something of the like to fill the disc space and hopefully fuse the interbody space to L5 and S1. You can research the procedures more but XLIF is definitely a no-go for an L5-S1 surgery. The neck problem could probably be treated with an ACDF but depending on where your stenosis is occuring the surgeon could need to do something from your posterior cervical spine. Get a few opinions and Good luck to you.

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You can try homeopathic doctors for this. I have ankylosing spondolyssis all joints were badly inflamated because of the fusion in the joints and spine was bulged. Iam normal now with no pain at all. took lot many pain killers atleast 5 dose a day with no cure. By homeopathic i got releived. Iam from india my name is charlin. The pain was so unbearable that i could not walk for 9 months.

Once i got well every day i go to internet and convey my message to those who suffering from pain.

You can consult the doctor via email.
I would give you my email. if you are interested kindly contact

kevinjoseph51@gmail.com
91+9043577630

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Thank you guys so much for the info!! Wow!! I've got a lot a research to do!!

@James.... What exactly is SCS? Please keep me posted on what you decide and how it goes.

@ PK... Thank you for all that info! I'd absolutely LOVE to try the homeopathic route!! I'm so tired of meds and injections that barely work. At this point I'll try just about anything. As for any suggestions by physicians as to what may be the cause... I have heard nothing. I DO however know that I have had more medical problems throughout my adult life than I can possibly keep track of. I've had countless surgeries for everything from my broken ankle to gall bladder removal to a full hysterectomy due to ovarian cancer. Seems that every time I go to the doctor, I leave with another damn diagnosis. My father and my brother both have degenerative disc disease and bad joints as well. My father has rheumatoid arthritis amongst other ailments. The pain and the hassle of dealing with everything is really getting to me emotionally. I'm at the point now that I really would rather not live anymore. Living my life as I am, I feel I don't live much of a life anyway. I will most definitely look into seeing a homeopath. I'll keep you posted on how everything goes.

@Wally A lot of my pain in in my thorasic area... stiffness, pain, infammation but he hasn't addressed THAT pain at all.. With the spinal stenosis he stated that he's make an incision thru the ront of my neck, take out one of the vertebrae, do a bone graft using a piece of my hip bone and then put a plate in my neck for stability. As for his talk about XLIF... He said they'd make the incision in my side, remove one of the vertebrae, make an incision in my back and cut the bone spurs off my spine, then build a cage to fuse L5-S1.... Yeah I don't get it!! The XLIF brochure itself states "The XLIF procedure is specifically not recommended for patients with symptomatic level at L5-S1"... so I don't know what he's thinking. All I know is I am REALLY scared.

@Charlin Thank you very much!!! I was even thinking of trying acupuncture... I'm at the point where I seriously am willing to try just about anything to feel better. I too have bulging discs in my spine.. Always in pain and can never get comfortable... There have been times when I've literally gone days without sleep because I just hurt so much.

THANK YOU ALL, ONCE AGAIN FOR YOUR RESPONSES!!!! I REALLY APPRECIATE ALL OF YOUR INPUT AND WILL GIVE IT ALL SERIOUS THOUGHT. =) As I stated before.... I have LOTS of research to do!!

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Hi again NYRG,

Just a little update: I asked my Homeopath about your case. She was positive, and said that your age was on your side. If you were 80, she wouldn't expect to be able to do much, but because you are young, she feels confident that Homeopathy can help you. It depends on how much damage / degeneration has occurred already, as to whether that help would be cure or only relief, but I'm sure any improvement would be cause for celebration. I look forward to your next update!

Cheers,
PK

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Hi PK!!!! Thank you SO much for talking to your homeopath about my case. That definite gives me some hope. As you said ANY relief WOULD DEFINITELY be cause for celebration!!! It was very sweet of you to think to ask her about my case. I really appreciate it!! Thank you so much once again! I will definitely keep you updated!

-Dawn (aka NYRiotGirl)

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RiotGirl,

The thoracic region is a weird area to have a significant amount of pain and considering you had an injury, it's possible you might have a compression fracture in that region...which are fairly common in the thoracic spine, especially in a traumatic fall or something. As for your neck the procedure he explained is called an Anterior Cervical Discectomy and Fusion and he would make an incision in the front of your neck and remove the bad disc and replace with a piece of allograft bone or a PEEK cage and then put a plate over top of the level to ensure it does not come out. This is a fairly quick procedure if the surgeon is well trained. As for the lumbar area, I would seek another opinion...ask around who is a good spine surgeon in the area...who is fellowship trained in spinal surgery and see someone else. Even if their wait is a little longer, that's not such a bad thing because they are probably busy for a reason!! The XLIF as you said should really not be done at that level...you'd be better off with an ALIF or a TLIF depending on your diagnosis and what the doctor is comfortable with. They would also instrument with screws and rods in the back as well as decompress around the area. Again, i wish you well and hopefully you can find something that will work.

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Wally... That's a very good point about the compression fracture. When they did my MRI for some reason they only did the cervical and lumbar. I'm definitely going to look for a neurosurgeon who'd possibly be willing to look as the thoracic region as well. I DO know that when I applied for Social Security Disability their drs did xrays of my entire spine. To stand up straight I'm in tears because of the thoracic pain. After my xrays at the disability dr, the nurse called me in and pulled me aside to tell me that the xray technician was so worried about my pain and my xrays that he felt strongly that I shouldn't wait for disability to make a decision. Needless to say, I was approved on my first application. I was told over 90% of applicants are denied on their first try. I looked up MY dr earlier on the VITALS page that has all drs info and he didn't rate very well. His "scores" were actually VERY low... Time for a new doc without a doubt!!

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Hello Dawn,

Glad to be any help or encouragement. Looks like you're going to have to deal with completely conflicting points of view here, so I just wanted to add one further point, that may be helpful.

Using Homeopathy doesn't generally conflict with anything else. It's not like you have to choose one OR the other. When I had my ITP, I went to hospital immediately (because it was an acute situation, and after hours). And when the hospital treatment didn't cure me but only kept me alive, I went and got the Homeopathic remedy as well, and used both together. The Homeopathic remedy still worked, in spite of the steroids. Of course, discuss it with the Homeopath to be sure, as some things (like coffee, strong mints and other things) do tend to block or reduce the effectiveness of Homeopathic remedies.

One more thing. Your description of your own and your family's medical history suggests you have a strong family tendency to this kind of illness. However, that doesn't mean it's necessarily genetic (even though it's passed on...) I know it sounds like a complete contradiction, but apparently it's not. Though it's an area of debate, I personally believe it has been true in my own case, therefore I support this further Homeopathic theory, which is that diseases in previous generations (say your great grandparents') can cause what are in homeopathy called "Miasms" - "genetically" (possibly in-between, or along with the genes) transmitted dispositions to certain diseases. My family (mother's side) had a strong respiratory miasm and I used to suffer from constant colds and frequent hayfever. However, I haven't had hayfever for many years now, since being treated with the appropriate remedy. I think I also have a Tuberculinum miasm (from tuberculosis, possibly in my grandmother's generation), but that hasn't been cured yet... (Homoeopathically, I have what is called the Tuberculinum Constitution, which is characterised by having too many interests and spreading oneself too thinly and thus having great trouble getting things finished. In other words, I'm still a bit 'scatty' - absent minded, hyperactive, scattered, easily distracted... Believe it or not, Homeopathy can also help mental and emotional conditions as well!! Went to see H. again today about that. She's still contemplating which remedy to give me. (It's an art and a science.) Will keep you posted!)

Cheers,
PK

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Hi Riotgirl.

At 38 years of age, I would not consider any of the surgical treatments you are talking about.

At age 44 I was told that I needed a 3 level fusion in my neck and a 4 level fusion of my low back. I am 57 now and still have not had any surgeries.

I went for 7 years without any significant problems at all until this year. I understand your concern for your situation and empathize with you. But, I strongly urge you to seek out any alternatives to ease your pain. There are many methods out there for you to choose from.

Do what seems best for you and listen to the advise of people that are speaking from the heart and can understand your conditon.

Good luck.

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Hey NYriotGirl, Well i guess your name says it all HaHa. I guess i could copy my MRI report put your name on it and it would be the same. So So sad living in so much pain i can really sympathize with you I've been suffering for sixteen years. Anyway as far as surgery i have elected not to go that route for now,but if i have another day like today im going,my spasms in the last 2 days have been so severe that they actually drop me to the ground and it feels like somebody hit me in the back of my head with a sledge hammer. Don't know if that has happened to you but i hate it, because you never know when it will happen again. I'm at the end of my rope so for now i would suggest to you is keep doing what your doctor tells you to do. I know stretching and all that gets old but for me it seems to work i live alone so i don,t have to many choices,so if you have someone who can help you with massages put them to work...Ok bye for now and Good luck.. Joe

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Hi Dawn,

Just a quick Hello. How are you? Still hanging in there?

Would love to hear how you're getting on.

Best regards,
PK

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I hope this isn't the only opinion you've gotten so far, I'm on my second opinion and waiting for results until i feel comfortable enough to make a sound decision, in my case they told me it would be 50/50 and a high risk of paralyses. Food for thought

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Thanks, guys! Sorry I haven't been on... Got my reports today.. Ugh... the dr told me there were no herniated discs yet the report shows 4 of them along with 6 bulging discs. Now I can go for a 2nd opinion. My aunt is a nurse and gave me the name of 'one of the best neurosurgeons" she knows. Worked with him for yrs. He's booked out a month and a half.... My insurance co only covers a small amount so God only knows what it would cost ME.... called the dr's office and told the receptionist I can't swing it.... A little while later my phone rang... it was her! She talked to the dr and explained my situation to him and he said "Don't worry about the money. Come in tomorrow." Now THAT dr is my Godsend!!! I wasn't able to go to him yet because I JUST got my records. It'll prob be Mon. I'll let you know how it goes. How are ya'll doing?

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