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Saturday, 2/11 I am in the waiting room of life

Sunday, February 12, 2012

Hi All,

I am waiting and waiting and waiting for the surgery on my neck. This procedure that my doctor said needed to be done "as soon as possible" is scheduled for February 29th. I wish I could understand how the medical world around here really works because waiting almost an entire month doesn't seem like it is as soon as possible.

This thing hurts day in and day out. I am doing everything I wildly can in order to manage my pain and function. Everyday is a total challenge. The meds that help the most put me to sleep which is needed at times, but not always at the times they work. Staying focused is a major challenge--and for someone trying to take a couple of classes and teach every day, this is not a good plan. The injection that my pain doc put into my neck seemed to numb it up a bit which is a blessing since I deal with these spasms going on at irregular intervals all day long. They are a unique sensation of weird and pain, starting at the base of my neck, moving across my shoulder and then squeezing my upper arm like a blood pressure cuff being over-tightened. It does that for a few times and then buzzes down my arm all of the way to the tip of my thumb. The only thing that I notice that triggers them is when I start walking somewhere--I always have a series of them and I assume it is the way I hold onto my walker that does that. I also have them at random times that are not predictable--when I am sitting, talking, in the pool, right now...

The surgery will fuse my affected disks. The MRI clearly shows problems with two of them and hints at trouble with two more. I won't know until I wake up exactly what has been done. I will have an incision about an inch long on the front of my neck right where it folds--the incision will ultimately not be noticeable because of the way they do it. The doc will use bone from my hip to replace the disks and then use a small metal plate to do the fusion. It sounds so simple to hear the medical folks talk about it. I did learn that our neck really doesn't facilitate most of the movement that our head does. I have to trust that this will all result in some relief.

I sure wasn't expecting any of this to be part of my new year plans--it has thrown me for a loop. In the meantime, I am not able to spark as has been my habit for a few years. I sometimes get out the computer and then, things just get out of control. Or, I fall asleep for the first time in a couple of days. If I could predict how all of this worked, I could fit my world around everything.

I sure appreciate you all for hanging in here with me as I muddle my way through. Some of the next few weeks are going to be challenging. My doctor has said that I should expect to be off work for two weeks and then probably returning with light duty for the next four weeks. The middle two weeks of that is our scheduled spring break so I will have that time off of work. I was planning to volunteer at the church for a few of those days and to do an interview with one of the ELL parents who are there for one of my classes. I think those plans are going to be changed now.

My kids have been pretty good and have been helping in a number of ways. Our sad news is that Mason lost his job because the sheet metal company had to lay several people off due to a shortage of work. He has been diligently looking for a job and got a new one last week, in a company that makes hose. He will be cutting hose--and I don't know where his planned apprenticeship now fits in. He told me that he needs to be able to pay his bills (Hmm, his truck payments and his phone) so that is his focus. I want him to have more than a job, but I understand that he is a responsible, hard-working young man and he needs to be given the freedom to be in charge of his life. During this past few weeks, he has helped me in a lot of ways with rides and supporting our two younger kids.

Anyway, my entire life is revolving around problems with my spine again. It is almost like deja vu for me, except this time, I am still going through the motions of my life and when it was my lumbar spine with an infection, I couldn't do anything for the entire month before my surgery. My life would have been different if I hadn't had bacteria injected in my back way back then. I don't have much else to blog about except how I am managing to function. Thanks for the goodies and the kind words that I receive from you all. I am lucky to have my spark friends. I am lucky to have anyone still in my life who can live with this thing with me because it has taken over my life.

Take care of yourselves!!
Gentle hugs,
Sylvia

  
  Member Comments About This Blog Post:

WINLOSS 2/14/2012 9:06PM

  HI, I saw we had some things in common. Praying for you dear lady, I understand the pain.


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MORTICIAADDAMS 2/14/2012 1:18PM

    Hang in there, Sylvia. It will be over soon and you will be on the road to recovery. I hate to see you suffer like this. I will continue to pray for you.

I am sorry about Mason losing his job but I admire him in this economy for finding one again so soon. He is being very responsible and I hope opportunities open up for him again soon.

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EMRANA 2/12/2012 12:54PM

  I know it feels like forever, and I'm sorry. As Linda said, the wait would be much longer in another country. In Alberta, where I just moved from, we had people waiting two years for spine surgeries. I can't even imagine. I wasn't a candidate, but if I was, I would have just had my surgery at some point last year after getting hurt in June 2009!

Find your moments of relief in the meantime, and bask in those! I'm sorry things are so bad right now.

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_LINDA 2/12/2012 11:28AM

    So very sorry Sylvia! I always thought you Americans didn't have to wait for your surgery :( That is one heck of a lot of wait time when you are in such acute pain :((( Unfortunately, injections always carry the risk of infection with them :( I guess I have been lucky, having had them all my life and never getting any. Same with the surgeries. No trouble at all. I guess that is the one thing this body has given me is an infection free life (I don't even get colds and had the flu only once as a child)..
Nothing much to say can comfort what you are going through, but know my thoughts are always with you..
{{{gentle hugs}}}
Linda

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Thursday 2/2 A diagnosis and a plan

Friday, February 03, 2012

Hi there, my friends,m

After a busy morning at work, my son took me out for lunch. Then, we went to the doctor. I had some more x-rays and that led to meeting the new doctor. He is a younger doc who is very conscientious about his work. He told me that I have at least two herniated disks in my cervical spine and there may be up to four of them. He talked about treatments and he was quite uncomfortable with this because--well, I have had all of them but the big one. I have tried a variety of meds. I went to PT without any success. I have had injections of almost every shape and size. The next treatment is surgery. He told me that he honestly didn't like recommending surgery to a patient on their first visit. He tried to talk me into waiting another week and seeing him again. I told him that I cannot wait any longer and that I was in so much pain that I was ruining relationships and am unable to focus on anything.

Then we talked about the surgery. I will have a small incision in my neck and he will place it strategically where I bend my neck so the inch and a half won't be noticeable. He will then remove each of the herniated discs and clean out all of my bone spurs. He will replace the disks with some of the bone from my hip. Then he will use a titanium plate and some small screws. It will be closed up with dissolvable sutures. I am to expect to stay in the hospital overnight and the recovery pain will be the worst for the first 2-3 days. The second biggest area of pain and discomfort will be my throat from having the voice box and esophagus moved and the breathing tube during surgery.

There is a high success rate (90-95%). I am at risk because of a previous disk/ spine infection and pain meds might be an issue because of what I use regularly to control my lower back pain. Most patients having a similar surgery take 2 weeks off of work and then 4 additional weeks of light duty that includes not lifting over 10 pounds. I already have those types of restrictions because of my permanent back injuries, so all I have to do is follow the rules and patiently wait for certain jobs be done for me. Patience is something I really need to learn and develop, as is less independence in my attitude and the skill of asking others to do things for me.

Anyway, surgery is on and I should know when tomorrow. My big job is trying to manage this lousy pain until "the big day." It will be a lot more of what I have spent the past month doimg. I will need a lot of help from my family and friends to be ready to do this. In the note from the surgeon, he asks for us to NOT diet in the weeks up to the surgery and the 6 weeks that follow. I am sure glad that we are on a program of healthy eating and moderation!

I am not crazy. All of this pain is here. Fixing the problem will be a big deal, but it will be worth it. I had a tough night as you can tell by the date at the beginning of this and when I am finally posting this. It will be no small deal for me to hang in there while I am waiting for my surgery day.

Gentle hugs,
Sylvia

  
  Member Comments About This Blog Post:

PUGRAD1995 2/5/2012 9:31PM

    Sounds pretty normal-the only thing different with mine was they used an experimental protein (BMP?) instead of getting any bone from the hip. They told me to make sure to eat enough protein-more important in building bone than even Calcium. The no pool rule also-which has been the hardest. So hang in there-I know it has been worth the surgery for me!

Comment edited on: 2/5/2012 9:32:19 PM

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JRSWHIMSY 2/4/2012 4:55PM

    I'm so glad something is happening Sylvia! I wish you all the best!

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NIKKILEEG 2/4/2012 2:21PM

    Just saw your blog for the first time so haven't been following until now. Glad to see you have a solution in sight.

I know what you mean about patience and learning to ask for help. It can be tough.

Good luck with the surgery, recovery, patience and asking.

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HOPEFULSNAIL204 2/4/2012 12:00AM

  I am glad you finally have your answer. You will be in my thoughts and prayers as you wait for your surgery date and go through surgery and recovery. I am so sorry you are in so much pain. Thank you for keeping us informed as we will be waiting to hear your date and time of surgery. Blessings

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MALKS_ARIA 2/3/2012 10:20PM

    I am so glad they are finally gonna do something that may help with the pain. I am praying that you have the success of the a successful Surgery and healing!

and YES, I think sometimes we are tasked with patience and being humble enough to ask for help... then wait.... (I know I sure don't wanta do that!!)

Huggerz
aria

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ANOVELGAL 2/3/2012 7:34PM

    Wow! You got a diagnosis and an answer! Hallelujah! I am happy for you. I know surgery is a big deal and the recovery will be hard, but hopefully this will help you ginormously and it will all be worth it!

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MTNGRL 2/3/2012 7:21PM

    I am so glad you know what is going on and have a plan in place. My prayers are with you as you wait for the day and they will continue until you are home and feeling better. May God guide the surgeon's hand, the staff at the hospital and your family at home as you have this operation done. May He give you the patience you need and ease the pain as you have this surgery done. Hugs!!

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EMRANA 2/3/2012 6:49PM

  I like that success rate! It's good to have answers ~ and validation, even though no one here thought you were crazy. I know what you mean though. My doctor kept telling me that it probably wasn't that bad, until the MRI came back. I felt like, SEE!!!

I know the surgery itself will involve a lot of pain, but what are you going through now? I'd happily go for the pain that stops rather than this pain that won't.

Hope your date's not too far away.

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MORTICIAADDAMS 2/3/2012 4:25PM

    Thank goodness! I am for getting on with this as well. I see no reason to wait. The sooner it is done, the sooner recovery can begin.

Comment edited on: 2/3/2012 4:25:50 PM

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DETERMINEDJANET 2/3/2012 1:23PM

    This waiting will be easier because you know there is something out there other than "unknowns." Glad you let the doctor know you couldn't wait any longer....that you'd waited long enough.

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_LINDA 2/3/2012 12:53PM

    At last!! A answer and solution!! Good for you standing your ground and demanding treatment now, not waiting. I like this Doctor, tells you up front the surgery pain and recovery will be hell. But what is it you are going through now anyway?? A small incision -good sign of his skill! I am so glad you finally get a permanent fix at last.. Sorry to hear it will be so rough, but you have to like those success rate odds!
This is good news and you sound like you are in good hands. Healing and soothing thoughts are with you,
{{{gentle hugs}}}
Linda


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FELINA 2/3/2012 9:44AM

    I'm so glad you've finally got some answers and treatment. Sometimes the worst part is the not knowing and thinking that others don't believe you.

My best friend is going through the same thing right now, severe pain, loss of balance, falling down, broke her hip in one fall. They couldn't find the reason but finally after many tests and a couple of doctors they found that her 30+ year old spinal fusion is failing and crushing her spinal cord. She's going for surgery to redo the fusion with rods, etc.

I'll be thinking about you and praying this surgery helps.
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SCOOTER4263 2/3/2012 7:55AM

    My husband had a back so bad in so many different ways, that the doctors used to get excited when he came in - so many new things to look at! - and he actually wound up in a couple textbooks (the "worst case scenario" example), so I know a little of what you are going through.

Of course you're not crazy, and you need to do what you have to do to get this situation corrected. All your Spark Buddies are rooting for you!

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14JESUSGIRL 2/3/2012 7:37AM

    Praying for you, Sylvia. Chronic pain is ... well, I can't think of any words bad enough to describe it. My heart goes out to you.
In Christ,
Lee
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RITAROSE 2/3/2012 7:33AM

  God bless you! May he give you the strength you need! emoticon

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Wednesday 2/1 Whining should not be a way of life!

Wednesday, February 01, 2012

Dear Friends,

This story just keeps going into a darker and darker hole--but I may have found some light peeking in...

I called my pain doc and spoke with his nurse again. She informed me that they faxed my info on and that I should contact the neurosurgeon. they called me but due to the fact that my son reversed two of the numbers in the extension number I was to call, it took me two days to catcgh up with the right person. Laurie schedules appointments for the doc and yes, he wanted to see me. His first available appointment is April 26. April 26????? Am I kidding? Not a bit. I told her that I wouldn't need that appointment if I was going to wait that long because I would do something drastic. She found another back doctor in the same orthopedic group--not the creep who I used to see--a different doc and he had an appointment available on Thursday at 1:15. I told her to give me that one. The slight relief I have had from the recent injections is wearing off and this pain is getting deeper and more serious. It is now moving from my upper arm all of the way down to my wrist when it spasms and there is not a solitary thing I can do except ride it out until the break before the next spasm.

I saw my PCP again yesterday. He had me call the pain clinic for him and left my pain doc a message that suggested he increase the dose of fentanyl for this "kind and caring lady" until they can do something for my pain because the 75mg that I am on is leaving me in obvious distress. He noted that their office closes at 4:30 and it was only 4:29. He left his number and then he gave them my number. He told them to call me. I warned him about that nurse. Anyway, it is Wednesday afternoon and I haven't heard anything yet.

I am holding on--My attention span is very limited and my patience is gone. I am hoping that this "new" doc whose credentials look pretty good, is my knight in shining armor.

Whining is not pretty!
Gentle hugs,
Sylvia

  
  Member Comments About This Blog Post:

MORTICIAADDAMS 2/2/2012 11:49PM

    Sylvia, I am continuing to pray for you and am sure that relief is on the way. Continue to pray without cessation and ask everyone you know to pray for you as well. God will provide. emoticon

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MALKS_ARIA 2/2/2012 8:26AM

    UGH!! I am scared for you, and i very well understand pain is debilitating!!! that's all there is about it!! I am hoping *Someone* gets through to your Pain Dr Soon and ups your meds.

Having just went through a month of med changes and chaos going through side effects..... I wish you the best....

and to make matters more interesting... I can't get back into the pool :(

aria

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_LINDA 2/2/2012 1:01AM

    I hope with all my heart this Doc can do something for you on Thursday. At least one of your Doctor's is showing some compassion. But it isn't really enough in such an acute crisis.
So very sorry you are suffering. Feel free to let it all out here. Most of us can't imagine pain like this.
{{{gentle hugs}}}
Linda

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JENNY712 2/1/2012 4:28PM

    emoticon emoticon emoticonfor your trouble and pain. It is hard to have patience during such pain. HUGS! Jenny

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DETERMINEDJANET 2/1/2012 3:24PM

    Sorry you still have phone calls and waiting to endure while hurting so much. Hugs...gentle ones!

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Sunday, 1/29 Our parish nurse

Sunday, January 29, 2012

Hi!

The weekend has continued as my past couple of weeks and I sit here with ice all over my neck and shoulder, trying to tolerate our 16 year old daughter who is helping me to purge my clothing of all the "fat clothes." She can be a great helper, but it comes with an element of noise and funny stuff that this mother cannot quite manage. Anyway, I will feel better when these things are sorted and I have better access to what I really want to wear.

We had a great service at church today and it was followed by a "shared meal" (a potluck--my kids commented on the new terminology for an old favorite!) I didn't enjoy it as much as always and I even took a dessert that I gave over half of it away. We always have a potluck before our annual meeting (which is a new name for the Congregational meeting.) This is when we discuss the business of the church, plan projects and approve the budget and so on. It lasted a long time--we finished about 3:00. There were a couple of more 'sensitive items on the agenda that were talked through.

I took a moment and asked our parish nurse to talk with me. I shared my frustrations about this pain and the issues I have been having. She helped me to come up with a couple of ideas--we discussed the issues between the two big hospitals here and how some of my docs are affiliated with one of the other and some with both. I am going to try and play that card a bit and see if my OB/GYN who is affiliated with the "other hospital" might help. I might also try an express care clinic if that doesn't work. We have several connected with either hospital. The problem, it seems , is that orthopedic neurosurgeons are limited around here and are very "special." If I were older, I could have an advocate. If it were cardiology, I could get in today and if it were urology, I could get in tomorrow. I think seeing doctors is far too political.

I am glad that I talked to her--it took her about three minutes to notice that I am in some sort of distress. I cannot hide this from anyone. I am most comfortable if I can rock back and forth and stay moving. I don't quite know why that is a bit soothing, maybe it is the distraction of the movement. Anyway, I'd like to say that I am better, but that is not true. I was up almost all night dealing with this pain. Tomorrow is back to school and I sure need some prayers to help me through another day. I will take one at a time.

Take care of yourself--enjoy every moment!
Gentle hugs,
Sylvia



  
  Member Comments About This Blog Post:

MORTICIAADDAMS 2/2/2012 5:32PM

    You have my prayers, Sylvia. I hope someone will help.

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_LINDA 1/30/2012 1:15AM

    Nothing worse then a specialist in short supply :(( I am already confused trying to understand your system of medical care. In the end though, in spite of all the paperwork hoops, it still sounds faster then ours. But I still can't imagine waiting for treatment in that acute of pain. I think the wheels should be turning a whle lot faster. Bang on what ever doors you can think of to get the attention you need..
I have always found rocking soothing. When my RA was at its worst, I couldn't sleep, but would spend hours in my rocking chair, snuggled in my favorite blanket on a heating pad (to offset the ice packs)
Sending healing, soothing, comforting thoughts.
{{{gentle hugs}}}
Linda

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EMRANA 1/29/2012 8:04PM

  I thought I was weird when I was rocking back and forth with my spine pain. Now I see you talking about it ~ what is it with that? Maybe it's just soothing from when we were babies. I don't know! Interesting that you're doing it too.

I hope you get your consult soon. I can't comment on length of time, as I've just returned from nine years in Canada. My wait times there were on the lengthy side. I think it took me eight weeks to get into the orthopedic surgeon who then wouldn't touch me because I was "too young" for a double fusion, and then it took me another nine weeks to get into the neurologist. Eight months for the MRI before I saw either of them. Six weeks to facet injections after I my initial neurology consult. You can sure feel every second of wait time, can't you?

Keeping my fingers crossed that you get some relief soon.

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Friday, 1/27 Absolutely hanging on by a thread!

Friday, January 27, 2012

Hi all,

This is a very quick blog to let you know that the pain that I am dealing with is totally out of control and the slowness in which the medical folks are acting is making me very unhappy. I called my pain doc's office yesterday to find out about my appointment with the surgeon. They told me that they faxed my info to him on Wednesday and to call them for any further info. I called the surgeon's office and was told that he reviews referrals and sets up his own schedule. I asked how long that takes and they said that it can take up to a week or more before he contacts patients.

I am losing my sanity. This pain is now a series of repetitive spasms from my neck to my right shoulder and down my arm. When it gets to my arm, it feels like someone is tightening a blood pressure cuff way too tightly, releasing it a bit and then reinflating it. After it does this several times, it lets up for anywhere from 5-15 minutes before it starts up all over.

The pain meds that I am taking are taking the bite out of this pain, but it is still there--and last night, I fell asleep before it was time for my night dose. I woke up around 2:30 and I was in excruciating pain. It took almost 2 hours to get things back under mild control with meds and ice bags.

All I want to do is cry and I am not sure how much longer I will be able to come to work like this. Today is the big 100th day of school and the primary children who have a big 100s party are way off task. I cannot exactly enjoy their fun and I cannot get them to focus either. MY shoulder hurts. A lot. I am truly, truly sick of it. I didn't even spark at all yesterday. I didn't log in and I did nothing on the computer at all. When I got home from the pool, I got my laptop out, but I didn't have the patience or energy to open an email.

I am sorry that I missed two new members in my Oa of the lower back team--I will try to meet them this weekend. I am missing my Basset Hound friends too, My son gave me a sweet mug for Christmas that is decorated with photos of Lady, Chloe, Scooter and Frankie. The kids here love it. The dogs are truly my best friends right now. I am grumpy and miserable. I need some help, but I am about out of options. This sure doesn't seem right or fair.

I know I will survive and I will do as well as anyone else in a similar situation. However, I don't like dealing with this and I need to scream, cry and curse all at the same time. This pain is taking all of my energy and inner strength. Today, our staff won a catered breakfast. Hmm, I had a half of a large bagel with some flavored spread and a piece of danish along with my apple juice and a half of a banana. That is comfort eating at its worst and along with what these pain meds are doing to me, I am guessing there will be another hefty gain for me on the scales tomorrow.

Someday soon, I will find myself and when I do, I will let you know.

Take care of yourselves. I am going to try and do my lesson plans with free time granted to me from hundreds day.

Gentle , gentle hugs,
Sylvia

  
  Member Comments About This Blog Post:

WALKZWDOGZ 1/29/2012 8:15PM

    Ohgosh. I'm so sorry. Sending prayers! emoticon

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BRAVEONE92 1/27/2012 10:30PM

    I can identify somewhat with your excrutiating pain.
I have experienced pain from back to that degree.
I was so glad when I finally got a good neurosurgeon
to do my surgery. Pain like yours, could land you
a trip to ER or a stay in the hospital, so that your
pain can be controlled. I think that is what I would
do. A person can only stand so much pain and if
it never lets up, it's no telling what it will do to
your body. I really feel for you. I will keep you
in my prayers. Praying that you get some relief. emoticon

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ENUFF81020 1/27/2012 9:48PM

    And when you realize that we have two major medical policies and they pay almost every penny of care, it makes this worse. I am pretty upset at being left in this condition--it has been 3 and a half weeks of this. That is far too long, yet there seems to be little I can do but wait and wait with the clock ticking so slowly as this takes over every pore of my thinking and functioning. I try hard at the pool, but I cannot do all of my exercises. People who know me well and care about me are getting really worried because I am not myself.

I wish I could remove my neck and shoulder, it hurts that badly. I could at least stand a break from this type of intense pain for a while--an hour would be good...

Thanks for your thoughts--I talked to one of my doctors today and he is going to try to speed this along a bit. I hope he succeeds.
Gentle hugs,
Sylvia

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EMRANA 1/27/2012 7:21PM

  I'm sorry it's this bad. As Linda said, you would think things would move faster. I just moved back from being in Canada for nine years, and I know all about long waiting periods ~ took me eight months to get a MRI for my spine, so I did a lot of damage trying to work full time while I was waiting.

Hopefully you'll hear from the surgeon ASAP! I'm giving you hugs in spirit today, as I'm guessing my usual ones would hurt. emoticon

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_LINDA 1/27/2012 3:35PM

    When you phoned this surgeon's office, did you mention you were in excrutiating, out of control pain?? Sometimes you have to really put forth your case strongly so they will pay attention. You are in crisis, really, an emergency if the strong painkillers you are on are unable to handle this pain. What if something is going on that can permanently damage you if it doesn't get immediate attention?? I am a little surprised with your health care system. Since you all have to pay, unlike us in Canada, I would assume you would get speedier attention and not have to put up with long waits for surgery or appointments..I would strongly suggest you call this Dr.'s office again, stressing how very urgent this is. They really can't tell from a piece of referral slip.
When I finally got a surgical date for my very first knee replacement, I mentioned to the secretary I was so glad because I was unable to walk on it any more, and she said I should have told her this information and she would have gotten me in to see the surgeon quicker!! Live and learn!
Please stay on top of your medicines, set an alarm for your medicine times and set it by you at all times so its okay if you fall asleep.
I feel for you and hate hearing in how much awful pain you are :(((
{{{gentle hugs}}}
Linda

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MORTICIAADDAMS 1/27/2012 3:20PM

    Sylvia, I feel terrible for you. As a nurse, I get you to call ALL your doctors regardless of their specialty and tell them what is going on. One of them is bound to have the compassion to try to do something until this can be resolved. Love you. You are in my prayers.

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DEBBIEOLMOS57 1/27/2012 1:25PM

    hope you feel better soon

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