My wife is very sick...desparately need some input please!

So let me start by giving a little background into what is going on. My wife has had severe pain in her back/neck and crippling headaches for quite some time. We have taken her to countless doctors, emergency rooms, and quick care facilities over the years, each time she's rapidly worsened from the next. On her last visit to the ER she had started to loose feeling in her arms and hands. Each time however, the docs simply treated her as a hypocondriac, pushed anxiety/depression meds on her, and kicked her out the door. She had been stuck using her insurance up until a couple months back, where I was finally able to get her under mine and get her to a doc we both know and trust.

Now, she had specifically stated repetedly up till now that the issues stem from her back/neck, but not one single doc would even examine her. Now that she's with the good doc, the first thing ordered was an mri and turns out...she has a cyst in her spine that is blocking her spinal fluid and slowly paralyzing her. Mind you, this is years after seeking advice from god knows how many doctors up till now.

Evidently her condition is so rare, there is little to no research done on it. Her only options at this point are to...

A: Take a chance with a surgury that is not guarenteed to even completely remove the block, if it does it will still come back in about 6 months so she would have to continue getting surguries for the rest of her life. The kicker is the surgury is so sensitive it only has a survivability rate of about 75%...so 1 out of 4 die simply from the surgury alone.

B: She can decline treatment, and she will eventually become completely paralized, and at one point it will take her life.

She attended a cyropractor she was refered to yesterday, and after doing a reflex test he determined she is already losing her right leg as well and will no longer treat her for fear of making the condition worse.

Her regular doc has also started pushing her for disability, and sent a letter stating she cannot work for a minimum of a year.

Mind you, she isn't even 30 years old yet.

Now, the thing that I am absolutly enraged about is not a single doctor addressed her complaint up till now, and had they caught it early she wouldn't be nearly as bad off. It is taking everything in me to not take a trip down and give a size 10 peice of my mind to the last Dr. @$$hole that pushed anxiety meds on her and kicked her out the door.

If I loose my wife to negligence of our B.S. medical system I honestly don't know what I'm going to do. She is the love of my life, and in all fairness our lives together should be only just starting, not ending...

So I need some help guys, and I have no where else to turn. If I thought we could sue the hell outta the idiots that brushed her off for so many years we would, but it would take suing damn near the whole system because its been so many docs that turned her away up till now.

Any advice?


Mods, I didn't know where else to put this...if there's a better location feel free to move it.

reply to post by mutatismutandis


I wish I had an answer for you. I will keep my eyes and ears open, and I will pray for you.

reply to post by lambs to lions


Thank you so much! Deep down, I know there really isn't a whole lot I can do but I guess I just don't want to admit it to myself...

reply to post by mutatismutandis


Don't know what to say, only that my thoughts are with you and your wife.

Be strong.

reply to post by mutatismutandis


I had a buddy of mine in the Army who suffered much the same thing and the same treatment by the Docs.

After he had gotten out of the Army, about two years later he woke one day to find he was paralyzed from the waist down.

Thankfully at that point, the VA did a MRI and found the source and removed the cyst. He did a painful recovery, but he did recover and now is a volunteer firefighter.

As painful as it is, I would recommend that she take the chance.

In my opinion, Life after all is about quality, not quantity.

reply to post by mutatismutandis


Usually, there is a three year period in which you can file a civil suit against a doctor. That being said, you can try or you can focus on getting your wife better. Get ANOTHER opinion, yes, ANOTHER from a specialist, now that you know what is causing the symptoms. There may be something you still don't know. Then, get her help. To watch someone die of a long slow illness is one of the worst things to bear, for both of you. The odds will increase with a doctor familiar with the procedure and who has performed it, hopefully several or more times. While you have nothing to do in the interim, I would write a letter to every doctor who dismissed her with mental health issues, along with the copy of the diagnosis of her disease. Add a few expletatives while referring to their incompetence, it helps.

I deeply sympathize with you....

My mother-in-law had the same exact thing, and I mean identical. Same symptoms, same diagnosis. She had the cyst removed and it never came back. It was a difficult surgery, and she had to have her vertebrae fused, which took quite some time to heal, but that is what prevented the cyst from forming again in the same location. She has been pain free and able to get around since, but the back surgery was tough on her.

Always get second, and sometimes, third opinions from doctors AFTER you have a test or diagnosis revealing the problem. Surgery is not always the correct option if there are others available. There are also some less-invasive procedures, such as lasers that can burn the cyst from the inside out.

I hope this works out for you. I can only imagine what you're going through and hope that it gets easier from here.

~Namaste

You may be able to find more information on this site. If you are not in the US,
they might refer you to some help closer to home.

Syringomyelia Fact Sheet

www.ninds.nih.gov...

The anxiety/depression meds were more than likely "known" not to be needed, but legally it allows the doctors to cover themselves since they offered a solution and the person was "treated" based on the doctors' best (but not really) medical judgment and diagnosis, albeit wrong diagnosis. A wrong diagnosis, which in this case, they wouldn't be liable for according to their point of view.

So...if the surgery is done there is a 75% chance she will get better. If it isn't done, there is a 100% change she will never get better.

And there isn't a 100% chance it will return. Unless it isn't actually removed. Cysts are fluid filled "tumors" for lack of a better word. Sometimes because of where the location is, the cysts are only drained, and can not be removed. This may be why she might continue to have repeat surgery...if she does.

Either way...she needs to have it done as soon as possible. Nerve compression is easiest reversed the sooner it is done. Nerves which are compressed for a longer time can take up to 2 years to recover...if they ever do.

It would help to know the specific type of cyst, and the level of her cervical spine where it is located, but either way, she needs to have either the surgical resection or the drainage of it before it gets any larger and/or compresses the nerves any longer.

For right now off the top of my brain, I'd suggest you'd go to vitamin shoppe and buy a bottle of oreganol. It's a little pricey; get a cup of apple juice or orange juice and use about 6 drops in it. Have her drink it every four hours. You can also directly apply it to the site of pain, but I still suggest drinking it. I'll see what else I can find out from my literature.

Oh, where exactly is it located? In which area of in the spine precisely.

reply to post by mutatismutandis


First let me say I am so very sorry to hear about your wife's ill health. I also was misdiagnosed for many years due to medical incompetence and insurance madness, although my illness is not as rare.

The first thing you should do is contact the CDC office in your area. It sounds silly because they primarily deal with contagions but they will be able to point you in the right direction as far as locating specialists and finding the right people to talk to. I would strongly advise that you seek a second, third, even fourth opinion before she consents to such a risky surgery.

My best friend is an OR nurse at a major hospital in our area and she assists in many spinal surgeries. I will ask her if she has heard of this condition and try to find some helpful info for you. Did they say what caused this? Is it congenital? Genetic? Environmental? Is there some other underlying issue that is causing it? I will do some research for you.

Remain strong. That is the best thing you can do for her right now. Hopefully you will have some answers before the end of the day.

Where are you? If you are in the U.S. you should definitely go to a specialist. Get another opinion! Your favorite doctor may not have all the answers, I know my husband's didn't. Go to the best hospital (out here in L.A. I'd go to UCLA) and walk into the ER and tell them the pain has gotten worse, and her background, and see what they say.

Don't settle for anything but the best, you've got insurance. A life is worth more than the money it will surely cost.

reply to post by PatriotAct


She has a spinal cyst obstructing her nerve roots and you want her to drink oregenol? You're not by change one of the ER docs who didn't bother to C-T her to begin with are you?

dood, castor oil packs and pray the cyst goes away after a couple months, combine that with a good diet to prevent cysts and pray some more it doesn't come back. or just go ahead with the operation and prevent recurrence with diet.

could the cyst be from parasites....
someone should check out the free e book by what's her name...the title is the cure for all cancers, she is well recieved in the research groups. she writes like an amatuer but her logic makes sense and would be easy to take...5 days and the parasites are history. the cysts shrink away.
by the way, in the old days they may have known more about de-parasiting than us today, huh!!

the book is at the top of the list in a search....? The Cure For All Cancers"....all she wants people to do is take some wormwood and cloves (bought at kroger whole and then ground at home".......for 5 days....edit....and some black walnut hull tincture at any nutrition store



YOU KNOW what else, ?, the first thing to do in case of inflamation is to take baking soda to affect ph in our system

Do a Google search for "PEG ,spinal" It's a start. You might be able to find someone/someplace
that can help you. Leave no stone unturned, I say.

Then again there's This

By law, attorneys are supposed to provide a certain amount of free consultation. I suggest calling several and getting their opinion on what, if anything, you may be able to do. Stay strong and I hope all works out for you.

reply to post by webpirate


Well as they say, you ask a stupid question and you get a stupid answer. If you're looking for advice from doctors go somewhere that caters to that, best not to bite the hand that feeds you.

reply to post by webpirate


I had a problem with my sciatic nerve and unlike my friend who cured theirs through surgery I completely fixed it with my proposed method. Just to clarify oreganol comes as an oil in a bottle it's good stuff.