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

reply to post by mutatismutandis


You and your wife have my prayers. I think other posters had good words for you - look at this from the other perspective: the surgery has a 75% SUCCESS rate and, like one responder said, someone who has performed this surgery before will have an even better success rate than that. All forms of medical treatment get better all the time. I had a very difficult surgery over 20 years ago for a condition that had been untreated for close to 15 years. I was told that they hoped it would last 5-10 years, but my surgeon was a pioneer in that field, he invented new technique and new tools and i put my faith in Creator, in him and in myself. My recovery was incredibly fast and, over 20 years later, what he did is still working.

As another said, a 75% success rate is way better odds for a bright future than a 100% failure rate if nothing is done. Even if she doesn't fully regain what nerve loss she's suffered already, she WILL regain a lot of it and there will be no more lost (that was my personal experience). We are very resilient, resourceful creatures and we find many ways to work around physical challenges. She will, too, as she's obviously a very strong young woman. Have faith in her, in yourself and in the Creator.

I would suggest contacting the spinal research portion of the Mayo Clinic and get referrals from them. Think of the best, most well-respected medical places and contact ALL them for references. The University of Texas Health Science Center at Tyler, TX comes to mind - this place has invented more state of the art procedures than nearly anywhere. So, too, do I think of the University Medical Center in Lubbock, TX - another place of innovation.

Maybe all who read your post can begin to offer the names of the best places in their areas they know of and you could compile a list to begin contacting? Can you edit your OP to ask for that information?

Remain prayerful, positive and pro-active. My mother was killed by doctors (and, sadly but frankly, her own stubbornness to seek and obtain a different source of treatment) 10 years ago, so i do understand your anger to an extent (in the same way that you could understand mine - similar situations; different family members), but anger has never solved anything. In fact, it usually makes it worse.

You'll feel much better, and so will your wife, if you devote yourself to positive attitude and pro-active seeking of answers; by finding THE best doctor and then getting her there.

Here's wishing the two of you a happy 75th wedding anniversary. Now, you go make it happen! I have faith in YOU!

Be blessed!

Originally posted by webpirate
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.

I'm medically ignorant, but I believe the term the doc called it was "srynx". Yes, typically removing it would keep it away, but there is something to do with either its location or how it developed that the doc is saying even if it is removed it will more than likely come back.

So once she starts down the surgry route, she has to stay down that route...and each time she goes under the knife she has a 25% chance of not returning.

I honestly cannot say if its the best decison or not...she has a very rare case to begin with, and her particular case is even more rare so there's nothing for us to even go by.

reply to post by Gridrebel


Oh believe me...I'm actively looking for paperwork on every single trip to the docs

reply to post by SonOfTheLawOfOne


So fusing it stoped it from reforming? I'm going to have to bring that up on the next visit, because up till now they're just saying remove it and hope it takes a while to reform.

Very helpful, thank you!

reply to post by tigertatzen


The doc says its possible it stemed from a previous injury. She did hurt her back pretty substantially when she was a child, and has been in a handful of car accidents since. There's so little research on it that the docs really don't know anything for sure though.

reply to post by mutatismutandis


My son suffered from a very similar condition in the early nineties, after two and a half years of excruciating agony and many xrays, he finally had a MRi scan. he was then diagnosed with a sub arachnoid cyst on his spinal cord (anterior) between C5 and C7, it was apparent he was becoming paralysed from the neck down. he was 14yrs old at the time. My wife and I were told the odds of what could happen when he underwent the surgery, and so was he.
He is now 31yrs old and is an inspiration to all who know him, myself included. He is fit and healthy, although unluckily a month ago he had to have surgery for Cauda Equina syndrome(unrelated) I can totally identify with what you are going through. Sometimes in life you just have to put your trust in the "experts". they will do what they can to the very best of their abilities. I would not hesitate any more, go for the surgery, she has the chance of making a full recovery just as my son has. The alternatives are too awful to contemplate.
It is probably one of the greatest lessons in powerlessness a person can ever have.

You are both in our prayers

jml

Originally posted by mutatismutandis
reply to post by SonOfTheLawOfOne

 

So fusing it stoped it from reforming? I'm going to have to bring that up on the next visit, because up till now they're just saying remove it and hope it takes a while to reform.

Very helpful, thank you!

Yes, the fusing is what prevented the cyst from forming again in the spot that it had been drained and returned, and every time it returned, it would get worse, and the draining was painful in itself. The doctor finally recommended the back surgery as a final way to prevent it from coming back. It has not returned since, so I would say it worked. It changed her quality of life, but she had to be willing to accept the same chances of failure as your wife (75%), which she was willing to do. Most of the time, those numbers come from ALL surgeries of that type, which I think has more to do with the doctors performing them than the actual surgery itself. Good surgeons have a pretty high success rate, and it's a question that you can ask them directly and they are not allowed to lie about it or can be sued for malpractice. They HAVE to tell you if they've done a surgery that went wrong.

I really hope this information helps and that this is an option for your wife to consider. It would be a shame to have to live in pain like the kind I watched my mother-in-law suffer from. She is a changed woman since her surgery, but it took about 6 months to fully recover from it.

Just stay positive no matter what.

~Namaste

cei]reply to post by SeesFar


Thank you! I will be calling the mayo clinic imediately after work today.

I still have some concerns about the surgery. The last thing I want is for her to suffer more, but will she survive longer with or without the surgury? I honestly don't know...

Sure she may be a little better after the first surgery. May even make it through the second or third with no issues, but the odds are against her and she can only dodge that bullet so many times before she lands in that 25% category. Ultimately its her choice, and all I can do is support her...

It just seems like on one hand she can wait it out and it will eventually get the best of her, or she can start playing russian roulette with the surgery and possibly go even sooner.

reply to post by SonOfTheLawOfOne


We will certainly be looking into fusing it..up till now it was never even suggested as an option.

reply to post by mutatismutandis


I spoke to my wife about you and your wife's medical issues.

I'm a neurobiologist, abut she's an RN with 20+ years experience.

My wife recommends you contact your doc and get a referal to Barnes in St. Louis, or Mayo in Minnesota. They are the best in neuro issues.

If your current doc is slow to do anything then get on the phone yourself.

Good luck and God bless.

beez

I had a similar affliction pop up 4 years ago - pain in my neck and back and numbness which only increased as time went by. Long story short they found a white blob in my spinal cord causing swelling of the cord.

What they did was called a laminectomy where they cut off the backs of the vertebrae in my neck to allow room for the swelling. The operation went fine but the swelling never went down. They have yet to identify the blob but fortunately it hasn't grown. It's been pure hell as I'm sure you're poor wife is experiencing the same thing.

It sounds like her cyst is down in her lumbar region, is that correct? See if laminectomy is an option for her. If it were me I would go for the surgery rather than live as I have and will continue to do for the rest of my life. Being hooked on heavy pain meds plus the debility has been an absolute nightmare.

The process of getting disability took 2 years and a lawyer to get it. I was refused the first time. Hint: If she is depressed she might get on disability right away. I can truly empathize with what your poor wife is going through and you both face a long road ahead.

Find a pain specialist and the best neurosurgeon you can. If there is anything you'd like to ask please feel free to send me a PM.
Best of luck and my prayers to you both.

Sorry to hear about your wife and I hope everything works out with whatever decision you two have. I hope she feels better.

My thoughts are with you.

black salve.
Blood root is simply amazing stuff. God bless you and your wife.

reply to post by mutatismutandis

I feel for your wife, friend, and send all of the Love and Light to her that I can muster. Some of the things that happen to people.....as for bringing suit against the doctors? To even file a lawsuit for malpractice, you need affidavits from two other doctors stating that malpractice did in fact happen. If such affidavits can be obtained, as her husband, yes, you should sue.

I went through a similar thing myself. I was in a roll over crash in a semi in 1985, breaking my lower lumbar in 3 places, and cervical in 2 places. I was able to, after some awfully painful tests, to get my cervical fused, but my lumbar went for years without proper care.
Doctors say me as a druggie, and constantly telling me there was nothing wrong with my back. And that I was "not a good candidate for surgery." I had to physically move to another State to get the surgery I needed. Turns out I had Pars Fracture of the Spine, or Spondylolisthesis, along with Degeneration of the Lumbar Intervertebral Disc. Two surgeries later, I was walk around, and do fairly well on most days, although I have to use a cane to walk, and my pain level is down by 50% across the board on most days. So I can relate.
Give your wife all the love you can give, and help her any way you can. Blessing be with you and her.

reply to post by mutatismutandis


Bless you and your wife,firstly get your wife the surgery.Secondly buy a baseball bat,hunt down doctors and leave them in wheel chairs for life!

A couple of thoughts:

See a malpractice attorney. And no, I'm not one of those people who sues everyone in sight, but compensation is warranted here. I can't tell you how many woman are to told to go home and take an aspirin and see a psychiatrist. It's pathetic.

I'm so sorry you are going through this--but let me tell you something important. In our healthcare system, you have to be your own best advocate. RESEARCH THE HECK OUT OF THIS. FIND THE BEST SURGEON IN THE U.S. WHO HAS DEALT WITH SOMETHING SIMILIAR. SEEK OUT THE BEST PEOPLE IN THE MEDICAL FIELD FOR THEIR ADVICE. KNOW THIS CONDITION LIKE A BOOK, INSIDE AND OUT. GO TO BOSTON--ONE OF THE BEST CITIES IN THE WORLD FOR HOSPITALS. LOOK INTO ALTERNATIVE TREATMENTS IN OTHER COUNTRIES.

As someone who does a lot of writitng for the medical community, take this advice very seriously.

Pray. And then take action.

reply to post by mutatismutandis


I'd go with the odds (which aren't that great, but still your best option is probably to go for the surgery, if the MRI result interpretation can be trusted).

Get second or third opinions and if it looks like surgery is the only option, get it done by the best experts, in the best hospital (They might also know of treatment options that your current doctors don't).

Read the story of, or watch the movie of: Lorenzo's Oil. There is always hope!

My prayers go out to you and your wife.

Also: Read this:

Treatment Options For Spinal Cyst May Help to Avoid Surgery

www.mayoclinic.org...

It's not that rare, I'm thinking, because there are quite a few articles about it.

OP, you have my thoughts. It would appear that all here have covered the bases I would have mentioned, mostly the fusing process that will burn away the troublesome tissue that will in any case continue to make cysts into your wife's spine. Whatever happens, before any surgical procedures please make sure to help her eat well and take vitamins so her body gets all the nutrition it will need for recovery. My son had major surgery when he was 7, and even though for the next few months he caught every little cold that came along, his recovery was very quick because I did my best to maintain his vitamin intake. Please keep your views positive, stay strong, and the both of you will come out of this even stronger.

Prayers with you, let us know how it goes, please! I would like to say that ever since Obama got in office, the hospital system has gotten worse by three or four fold. My girlfriend was in a car accident and one of her friend s was thrown out and killed in this accident. She had a concussion from a fight before the accident too. While at the hospital they never cleaned or checked the bleeding from her head from the concussion. they were quick to give her a Catheter though which is strange, #ing pervs! Then they put her on oxycontin for her broken collar bone, even though she is allergic to oxycontin! I've been beginning to think this whole healthcare bull# is an even bigger scam by the doctors who went to school to help people, but don't do # to help them!
I went to a massage school in Florida to help people , but couldn't build a client basis good enough. I would suggest that the body causes problems when it lacks certain nutrients, so I would suggest a very wholesome strict nutritional diet along with the surgery to help push nutrients into the areas that are in much need of it. Wish you both the best!