So upset!

General
21

OH! Are you ok today, SK. You deserve the best. This is somehow just wrong.

My first reaction is why doesn't your rheum, a specialist, have the actual films and not just a report? Most specialists, where I came from could read the films and at least wanted to see them in addition to the reports.

I hope things went well for you today. Hopefully you have had phone contact and some decent news with treatment options. Have you considered seeing a neurologist? I see my rheum next week and then I'm going to neuro. The majority of my problems are spine related. Do you think a neuro could offer other advice for treatment?

All this stress and having to sleep with Darth Vader must be awful. No, your hubby sounds like such a sweet guy. Just a little tease there. I hope he's doing ok learning to use his new contraption too.

SK, I can't even put into words the importance of the help you hand out here. You deserve the best and I'll be praying for just that for you.

Lots of love and hugs,

LKitty

22

Hey everyone,

Talked to my gp, and in comparison of 2007 MRI the stenosis of the central canal at L5, S1 has progressed to the point that I need surgery NOW. The nerves are being choked out. He also said the SI joints are bad, said there is a new procedure with something called 'crazy glue'. I have the feeling the neck will need a rod too, I bet.

So he will be searching for a neurosurgeon from probably Hopkins or Univ of MD.

It was nearly 9pm when he called, so after the initial freak out, I talked to my Mom, My husband, called Renie and my son.

Need to call and see my DC, he knows my back better than anyone. I need to talk to him.

23

I have emailed you about this as well but let me just say on here that if surgery will help with it then it is worth having done. *hugs* Mikex

24

Wow. That's intense. But I'm thankful that there's surgery that can be done to help you. That's a very good thing. I'm really pretty stunned by the news. And the SI joint with the super glue - yeah, go for it. Get yourself all taken care of. Hopefully it will mean way less pain.

Will be in touch more later, have to scram to get to work.

Hugs!!!!

Petunia

25

You've gotta love crazy glue! Oh, SK, I'm so relieved for you. I know surgery isn't a walk in the park, but it is a way to feel better.

I will talk to you about L5-S1 surgery anytime!

Will be thinking of you.

26

Oh SK, this all sounds so scary !!! I’m sure you have sooo much to digest… Take your time, see what your DR. Thinks, what a neurosurgeon thinks & then make your decision when you feel it’s time. My mom had spinal stenosis and one surgeon scared the pants off her… Saying you need surgery next week, the nerves are being cut off… On & on…so I took her to some one else & he painted an entirely different picture, yes surgery could help, but he said when you are ready, when the symptoms are beyond what you want to live with… She felt so much more comfortable with the 2nd guy, and he was right… When the symptoms got to a certain point she said I have to do this… & success … For the most part
I am sending a big hug …
Prayers for your strength as you deal with all this !!!
dee

27

Thanks girls!

28

Dee,

You're right. Sometimes a second opinion is extremely important. The first supposed back expert took a look at my back for five minutes. No exam, just a look. Looked at my MRI and declared that I needed spinal fusion surgery. That's huge. So I agreed and set up a date for the surgery. Then, the next day, I got cold feet after reading more about it, how it can fail and you can be left with a spine that's not fused. Went to another doc who was flabbergasted by the expert's suggestion of surgery. All of the docs I saw afterwards, plus another back doc expert, were appalled by the surgery suggestion. Had I done it, the doc would have made a cool $10,000. I don't think that SK's doc falls into this category; I'm just saying that sometimes getting a second opinion can be a very good thing.

SK, I've been thinking about you all day today, when I was not working. I'm praying that all goes well and you end up in better health and less pain when it's all done. I know you're going to trounce the stenosis through your strong spirit. As they say, you're down but not out. I even dreamed that about you last night.

Many hugs and blessings,

Petunia

29

I replied too :( You no like me? Or have I grown breasts :P

30

My Internist is the one who has taken care of me the longest, besides my DC, and is the most cautious man I know, he wants to set me up an appt with a neurosurgeon, and I want to take his advice. I think I want MRIs of the remainder of my spine while they are going to make a surgical assessment. Right now I only have the neck and lumbar, there is a lot in between.

I know it has reached the point where I can barely lay on my back or my sides more than a few moments to sleep, so I would personally say if it's not to happen right now, it is not far away.

I had 3 surgical opinions after the last car accident, will probably have at least 2 or 3 with this, if it doesn't take years to get them. My Internist always sent me to the top guy of Hopkins or U of MD, and knew how long it took to get the appts, then figure in the time it takes to get a surgical opening. So I think I need to see what the surgeons say!

On one side I almost feel knocked down from the stress, on the other hand, I am trying to see all aspects. I thank you all for any advice and kind words.

31

LOL!! There was the first laugh of the day! Sorry Mike! You know I thank you too! You've been here in the hen house so long, I guess it's getting hard for me to differentiate! OOPS!!!

Thank you, Mike!

32

You are welcome *hugs* from me xx

33

My friend I am so sorry your so upset.

I will send healing prayers your way.

Lynn

34

Oh SK, I’m so sorry to hear this news from you, not only that things are getting worse, but also because you liked your rheum. I agree that everyone has a bad day but when someone in the medical field take it out on their patient it can be devastating. You have every right to cry about it, not just because you’re scared but also because it’s so frustrating to not have all the answers, and your rheum is not listening to you.



Is there more they can do to slow or stop the degeneration. Reading your message I’m hoping that the news you got on the other MRI is better.



Do you have to wait two months to go to your rheum, shouldn’t you be talking face to face when you get the other MRI.



Hope you’re feeling better today, that the sun is shining and you get to enjoy iy. I’m sure that some positive things are coming your way.



Take care, get some rest, and gentle hugs.

35

Oh my dear - I’ve been in such a fog lately I just read your post and was worried about not seeing you on all day. There’s always good news with the bad - you found some answers and have thought it through to get the opinions you know will make you feel safe. I totally agree with you about getting an MRI of your whole spine. Makes sense that if they are going in might as well do it just once and correct everything! Saying prayers for you, my friend. Hugs~

36

LOL, I just saw what you said, Mike!

:-D

37

I hope it doesn't take years to see specialists and get booked for surgery! If that's what you need then they need to get to it, post haste!

I don't know how you've managed all of this time on basically no sleep, SK. I'd say it's all catching up with you. No way should you be unable to lay down comfortably for just a few minutes of sleep, especially if you have sleep meds, and I know that you do.

SK, I know it must be pretty devastating to see the shape of your spine in living color, so to speak, but when you think about it, you've been living that reality every single day. Your body knows it's tired and needs help. I think your mind didn't accept it until you saw the MRI. I guess because you have such a strong will, you've been able to will yourself onwards all of this time. But in a way, it was good for you to see the proof, so your will would allow you to slow down and accept the surgery, now that you've seen the proof. You need to get fixed.

Hugs to you. Take care. You can do this because you've got that amazing will working for you.

Petunia

38

Hi everyone!

I have to get with my husband, and schedule these appointments, as he will taking me. He has been especially affectionate and supportive since the recent news. That poor man has gone through years of hell with me. It's safe to say that if he had any inkling of doubt about the severity of my situation, it was dashed after the call last night. If possible, the Chiropractor will be the next step, then back to my Internist, and go from there. They not only need the reports, but I want them to look at the DVD. I'll be dragging all x-rays with me everywhere from here on out.

AS it turns out, the lumbar x-rays did actually show the tailbone and sacrum!

I've tried to do some research today on the types of surgical procedures, from what I gathered from the brief phone conversation, the compression of the nerve network is the most alarming reveal, and from what I can gather, a Decompressive Laminectomy' is most likely the procedure, but who knows. Wouldn't be surprised if I don't need a disc or two replaced in the neck, and need a rod, as there are several discs that are collapsed on one side, causing curvature.

http://www.webmd.com/back-pain/decompressive-laminectomy-for-spinal...

Renie brought up a good point asking if I have had a bone density scan, to make sure the bones are strong enough for this to be successful. So that needs to be done. I already know from my sister-in-law and several of my friends here that I do NOT want bone taken from my body, but will use donated bone, and hope for the best, as many who have gone through having a piece of their bone removed still, years or decades later, complain of the never ending pain.

Hopefully the rain is over for many days now, as it surely has not helped me today!

This establishment that has been doing my MRIs turned me over to a bill collection agency after I had paid the bill in full, for my last brain MRI, over a year ago The office has even said that I paid the bill, and that woman from the collection agency who has worried me to death called again early this morning after I had finally gotten back to sleep, my husband woke me for the call, thinking it was perhaps a surgeon's office that Doc had already notified, when I heard her start in on me I WENT OFF on her. I mean I SCREAMED, took me nearly an hour to calm down enough to call the MRI office to once and for all get it straightened out with them, of course the manager had already left for the weekend. This is a stress I just do not need or deserve!

This is the same place that did not have the results of my lumbar scan to my Internist I saw Wednesday. They have been doing my scans since they opened, the advantage of my returning to them is that they compare the current x-rays to the previous, but I'm just not sure how much more of their ineptitude I can tolerate!

I finally seem to have gotten enough medicine in me today to alleviate some of the pain from the weather, and the stress.

Hope everyone is well, thanks to you all for your support and concern!

Love and hugs,

SK

39

SK, with the added stress of that phone call …oh. my goodness. I can’t imagine how awful your body must feel, god bless your hubby for being such a sweetheart !!! Maybe just for this weekend tell him to only wake you if the house is on fire !!! You will need to get lots of rest !!! Stress and upset is just tortuous to the pain and fatigue, I know you know this, I’m just really worried about you…
Take the weekend to rest, I know it’s hard to turn the brain off… But you must !!! A movie or something

I’m thinking about you…
Sending hugs, love & blessings
dee

40

Thanks dee, I'm okay right now, I was able to throw it off after a while, but you're right, it did me no good. Hopefully the office manager can get this straightened out once and for all, I'll be contacting her Monday. There is no more nice with this! I dread this next bill coming due! Maybe I'll send my husband in to pay it in person and get a receipt, although these idiots were already sent the cancelled payment from the bank!

BTW, Mom and I just watched a movie, the title oddly enough was 'The upside of Anger'! ha!