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Sjogrens Topics => Living With Sjogren's => Topic started by: SjoAmy on August 19, 2013, 07:27:31 PM

Title: surgery is scheduled!
Post by: SjoAmy on August 19, 2013, 07:27:31 PM
Got the go ahead today.  Surgery is scheduled for September 27, 2013.  His main concern is C6-C7.  Could do C7-T1 also.....but wants to get in there first.  The main PINCH is C6-C7.  He forewarned me of falling until then......the right fall at the right time, he said, would make for paralysis.
Title: Re: surgery is scheduled!
Post by: Suslew on August 19, 2013, 09:15:56 PM
Well be careful until then!!!!  Good luck with the surgery, I had a friend that had a very successful back surgery- wishing you the same!  And keep us posted...
Title: Re: surgery is scheduled!
Post by: ellenkerr on August 19, 2013, 10:37:34 PM
SjoAmy, Glad to hear you got a surgery date!  I was in the same situation prior to my surgery.  The doc said no falls or bumps because I would be a quadriplegic.  That made me so nervous.  I fell 2-3 times before the surgery and thank god nothing happened.  The worst was when I fell out of bed!!! LOL  Who does that?  I hope your surgery is successful.  You will be surprised at how fast you start feeling better.
Sending prayers your way.

((Hugs))
Title: Re: surgery is scheduled!
Post by: debter on August 20, 2013, 03:43:06 AM
makes me wonder how many people with sjogrens also have neck problems.  i had c5-6 and 6-7 done.
Title: Re: surgery is scheduled!
Post by: Velcro on August 20, 2013, 07:26:12 AM
So glad you got the go ahead.  Hopefully there is some relief in your near future!
Title: Re: surgery is scheduled!
Post by: Skylar on August 20, 2013, 08:43:18 AM
Good luck with the surgery  - sending you healing vibes.
Title: Re: surgery is scheduled!
Post by: ktfabian on August 20, 2013, 07:32:06 PM
I wish you the very best of luck with your surgery.

For what it's worth, I had a fusion at L3/4, which extended an earlier fusion from L4/5 to L5/
s1 in 2009. I honestly woke up from surgery feeling better than I had when I went into surgery that morning. I hope the same is true for you.

In the meantime, might I suggest you consider wrapping yourself in bubble wrap?  Seriously, take it easy and let us know how you're doing when you're up to it after surgery,
Tracy
Title: Re: surgery is scheduled!
Post by: susanep on August 20, 2013, 08:31:36 PM
I have you in my thoughts and prayers for your healing. I have had the physical therapy for this stuff, which it helped, but it's fragile.

susanep :)
Title: Re: surgery is scheduled!
Post by: SjoAmy on August 21, 2013, 06:52:02 AM
Thank you for your many healing wishes and vibes!

My neck has been bulging in my sleep, for a while.  As of yesterday, it began it during the day.


I think I might just wrap myself in bubble wrap!

That right side of my neck is sore to touch.  Oh well.

Tracy:  It means a lot that you've lived to tell the tale.....  because this is my 2nd fusion, and it will essentially be a fusion on top of a fusion.  I had C5-C6 fused about 15 years ago....now it will be C6-C7.  He is considering plating that area. 

I also have problems with C3-C4 and C4-C5, mild central stenosis there, with LOTS of osteophyte complexes, which I hope he scrapes out at least.  He informed me, that one day we will have to operate there, and that day, I would basically get an all metal neck.

The things to look forward to!
Title: Re: surgery is scheduled!
Post by: SjoDry on August 21, 2013, 10:01:11 AM
I think I am congratulating you on getting the surgery date nailed down & fixing the problem. At the same time, I have had this same surgery (as I know you have also)..so I wish you a
speedy pace through the worst part of it. I still hate the smell of Dial Soap from washing those neck brace pads. But really, I am glad you are taking care of it. As your doc mentioned, these are serious problems that could get very permanently serious very quick.

You are in my thoughts and prayers.

SjoDry
Title: Re: surgery is scheduled!
Post by: slccom on August 21, 2013, 10:05:44 AM
Would it be a good idea to wear a neck brace until then?
Sharon
Title: Re: surgery is scheduled!
Post by: SjoAmy on August 21, 2013, 03:18:36 PM
Probably might not hurt to get a neck brace now.

I've been taping it with the KT tape, to increase circulation and decrease inflammation.  I confess, the hydrocodone takes everything pain related away, and I like it for that!  I only use 1 @ night....and my pain mgmt doc, only gives me 20, on a 30 day rx, so I don't get addicted. 

The scariest thing about it is that I live alone, and I won't have any one to help me through the recovery.
Title: Re: surgery is scheduled!
Post by: Nancy60 on August 21, 2013, 05:29:36 PM
Do you have family or friends nearby that you could stay with right afterwards?  If not be sure to mention to your surgeon, there are acute rehab, transitional care and skilled nursing units designed for people who are recovering from surgeries, illness, accidents etc... that aren't quite ready to go home, but are not sick enough to qualify for hospital care. It is usually covered by insurance if the doctor justifies the need. You could call your insurance now to see if it is included in your policy. That way you don't have to worry that you can't care for yourself. There is also home health care, if you need therapy to regain strength, ability to care for yourself, you would qualify for PT, OT which would also qualify you for aide help for bathing, dressing etc if you need it. Again check with your doctor and insurance. 

I had a fusion of my L3-4 and I live alone. I went home with my sister and my neighbor checking on me but by the end of the first week, I had figured out how to adapt things so I could function. I had a shower chair and a reacher that helped a lot. Not being able to drive for 6 weeks was the worst part.

I know you have gone through this before.  I hope everything goes well!

Nancy
Title: Re: surgery is scheduled!
Post by: SjoAmy on August 21, 2013, 09:16:58 PM
My CLOSEST family is 10 hours away.

I don't have any friends that I would put my care in their house.

And I don't know how many would come over here to help.  I can't even get them to take me to the ER when I have pneumonia.  Insurance probably doesn't cover it....Medicare primary.

I have no siblings, my mom is the only relative left.  She is worse off medically than I am....I couldn't ask her. 

I don't drive, so aI won't miss it.I walk or take the bus.  Since I Will be recuperating during our winter.....good possibility I can fall on ice, and dislocated the surgery.....and that involves a risk of paralysis.
Title: Re: surgery is scheduled!
Post by: Nancy60 on August 22, 2013, 08:19:13 AM
Medicare covers rehab and skilled nursing and home healthcare. Talk to you're doctor ahead of time so he is aware of your needs. 

Nancy
Title: Re: surgery is scheduled!
Post by: SjoAmy on August 22, 2013, 09:45:27 AM
Surgery has been moved to AUG 30.

Will call neurosurgeon on Monday about home care, after anesthesia appt gives the final go.

Am getting testing done today & tomorrow.
Title: Re: surgery is scheduled!
Post by: Velcro on August 22, 2013, 10:02:39 AM
Glad they moved it up.  Sounds like it's too dangerous of a chance for you to walk around this way.
Title: Re: surgery is scheduled!
Post by: slccom on August 22, 2013, 11:22:04 AM
Is there a church group who can help you? Or a local Masonic Lodge?
Sharon
Title: Re: surgery is scheduled!
Post by: SjoAmy on August 22, 2013, 03:33:41 PM
There is a local Masonic Temple that I am good friends with...what could they do?

Got the EKG, Chest x-ray, and blood work done today.   MRI on Aug 26.

Title: Re: surgery is scheduled!
Post by: slccom on August 22, 2013, 07:58:35 PM
Tell them you are having surgery and see if you can get some people to help you right afterwards. Ask and ye shall receive. Especially if you have family members who are Masons.

Sharon
Title: Re: surgery is scheduled!
Post by: SjoAmy on August 23, 2013, 09:00:14 PM
Surgery is now suspended until September 27......due to blood work....low potassium level and high globulin.
Title: Re: surgery is scheduled!
Post by: slccom on August 23, 2013, 09:36:00 PM
Bummer. But that gives you more time to line up some help.
Sharon
Title: Re: surgery is scheduled!
Post by: SjoAmy on August 24, 2013, 05:36:23 AM
Bummer. But that gives you more time to line up some help.
Sharon

At this moment, I could care less about lining up help.  I just want to get the surgery over and done with so that my pain level is reduced.  The less pain I have the more I can do. 

Don't get me wrong low potassium, as I understand now, is an EXCELLENT reason to postpone.  Don't want my heart giving out while I am on the table.  I didn't realize it was so low.  Before this, I was on Rx potassium pills. 

Learned that low potassium is also a risk for Stroke.

Potassium may be correctable......the Globulin, I'm not so sure....highest it has ever been 4.7.  Range ends at 3.5. 

And my nephrologist doesn't think this is related to the kidney!

Tell me how she can tell that without seeing me?   My R side of my body is SO SWOLLEN!
Title: Re: surgery is scheduled!
Post by: Ripvanann on August 24, 2013, 06:55:54 AM
I'm so sorry about this! I've had bulging discs in those areas for years and the pain has been unbearable at times. Mine has never been to the point where I needed surgery, so I can't imagine what you're going through.

I don't know where you live, but if you're close to Pittsburgh, PA, PM me and I will be there as much as possible. I could also line up people from church that would be happy to help and cook some rockin' food for you as well.

As others have mentioned, there are usually local churches or synagogues that would be more than happy to help. Finding them is the trick.

Praying for you!

~Andrea
Title: Re: surgery is scheduled!
Post by: SjoAmy on August 24, 2013, 08:19:32 AM
Thank you Amanda & Andrea for your posts & support.  I'm far enough from Pittsburgh.....but not too far, at least if I could drive & had a car.   I'm in Erie, PA.  Ya know where Lake Erie, Erie County, city of Erie -- in Pennsylvania -- is?  That is me.   My neighbors in PA are Millcreek, Fairview, and Northeast.   Respectively to the south, west, and east.  States neighboring are Ohio (Akron & Ashtabula) and New York ( Buffalo and Ridley).

Craigs list....geez....people really have lost their common sense.  Ignore them.
Title: Re: surgery is scheduled!
Post by: SjoAmy on August 24, 2013, 09:33:50 AM
Picked up Potassium tablets today.  It can't hurt to increase with supplementation, I figure.

Potassium Gluconate.   Besides, last night I ate a bannana, over a 2 hour period, when my hands started their usual nighttime tingle.  Worked so well I didn't need neurontin last night.  Figured there could be something to this potassium thing.......or is it ting.  Lol.
Title: Re: surgery is scheduled!
Post by: Nancy60 on August 24, 2013, 02:37:32 PM
Amanda is right about the Medicare. They way you qualify for home health are by your diagnosis and type of "skilled care" you need. PT, OT and nursing services( medications, blood draws, dressing changes etc...) and you must be home bound or unable to go to OP appts to have the care done. If you qualify for skilled care, then you can qualify for some non skilled care too, such as help bathing, showering, light housework or meal prep if you can't do it for medical reasons. The doctor, therapists and nurses have to determine what you qualify for, but with what you are having done, and the fact that you live alone and don't have family available to help, I'd be surprised if you did not qualify.

These are national laws, not state, so it is the same across the nation. Call Medicare or talk to your doctor.

Also, in patient visits, home health visits and out patient visits are all counted separately. Each has a limited number af visits per year. If your condition is serious and requires more than the allowed number of visits you can file an appeal for more with supporting documentation from your doctor, therapist etc...

Hang in there, things will work out.

Nancy
Title: Re: surgery is scheduled!
Post by: jazzlover on August 24, 2013, 05:43:27 PM
You MUST have someone to help you. No way you can get thru that safely alone.

Best wishes!
Title: Re: surgery is scheduled!
Post by: SjoAmy on August 30, 2013, 08:22:45 PM
Surgery has been moved sooner.   SEPTEMBER 12, 2013.

I gave the office/scheduler/business manager of the neurosurgeon's office an earfull of constructive criticism and feedback.  She THANKED ME!......and that is not all....she said  "You're absolutely right Amy.  I need to schedule him more people on more days, especially with all the people that are backed up.  It is not fair to his patients, and you should've never had been rescheduled without your permission."

Every now and then, you get through to one of them, and for that day, it makes all the difference in all the world!
Title: Re: surgery is scheduled!
Post by: SjoAmy on August 31, 2013, 11:33:23 AM
Yes I did.......what good that talk did is a different story.
Title: Re: surgery is scheduled!
Post by: Ripvanann on August 31, 2013, 09:15:17 PM
SjoAmy, I'm glad you got through to someone who cares there, but Amanda is absolutely right, you can't do this without help. Erie isn't far enough that I couldn't at least bring you some frozen meals, but the kind of help you need is going to be 24/7 for a good while. What happened with that conversation? What did she say about it?
Title: Re: surgery is scheduled!
Post by: SjoAmy on August 31, 2013, 10:27:08 PM
I'll call the PCP on Tuesday, since Monday is Labor day.  Tell them about my concerns and ask them to coordinate some care on my behalf.

Amanda is right on all counts.  My docs who don't know my case personally, like the neurosurgeon, think I can get people to take care of me.  I can't.  And I won't beg, or ask.  I am hoping to talk to my PCP about aftercare at a physio rehabilitation facility that is about 7 blocks from my home.

Been realizing what I won't be able to do....like carry my grocery bags on my shoulder and hands.

Pain has been on a severe increase.....past 2 days I needed 2 hydrocodone instead of one.  One in the AM, one in the PM.  Instead of PM only.
Title: Re: surgery is scheduled!
Post by: quietdynamics on September 01, 2013, 12:17:42 PM

An accident left BIL paralyzed from the waist down 20+ years ago.

He has been in and out of hospital for surgeries, including skin grafts, etc over the years.

He is in New York State. Has a ranch-style home and lives alone. He has a nurse that comes to the home and for his own reasons does not pursue an aide who would come in for a 'few' hours to help, preferring to hire a local to come in...she does more than an aide would do.

He was last taken by ambulance to the Hospital during our visit on Mothers day, a medical event occurred.

After hospital surgery his choice was rehab/nursing home. Which this time he declined. Understandable he is tired of rehabs...sometimes having to be transported distances to more specialized facilities for months at a time.

Usually a recommendation by your doctor; then an evaluation is done while in hospital. For the most part if you are alone a Dr. will recommend in-care rehabilitation, if you require 24  hour help, and they will offer/set-up PT on-site. Bonus is access to Dr. and nurses, etc.

 A social worker in the hospital is the one who has the resources to set everything up for assistance regardless of where you go after hospital. Ultimately it is your choice. And your choice is your responsibility.

As far as getting to PT or Dr. appts. Medical Ins. will provide transport service/ per evaluation=need. Does your area have the community shuttle buses? Most people think they are for the elderly, but, social worker can give you the information and the bus will be able to take you food shopping and other places.
Does your Pharma deliver? One reason I picked the one I did, plus the drive thru..so give them a call.

I have no knowledge of spine surgeries...but, given what you have posted to date, it would seem that rehab would be safest. I would want to avoid a fall without having someone near.
Give the hospital social worker call. That way if you need to bring necessities you have them.
Hoping the procedure goes well and the mend is swift.   



Title: Re: surgery is scheduled!
Post by: quietdynamics on September 01, 2013, 01:52:12 PM
I'll call the PCP on Tuesday, since Monday is Labor day.  Tell them about my concerns and ask them to coordinate some care on my behalf.

... I am hoping to talk to my PCP about aftercare at a physio rehabilitation facility that is about 7 blocks from my home.


SjoAmy...that really does make safe sense as the best option for you and your best outcome recovery.

An accident left BIL paralyzed from the waist down 20+ years ago.

He has been in and out of hospital for surgeries, including skin grafts, etc over the years.

He is in New York State. Has a ranch-style home and lives alone. He has a nurse that comes to the home and for his own reasons does not pursue an aide who would come in for a 'few' hours to help, preferring to hire a local to come in...she does more than an aide would do.

He was last taken by ambulance to the Hospital during our visit on Mothers day, a medical event occurred.

After hospital surgery his choice was rehab/nursing home. Which this time he declined. Understandably, he is tired of rehabs...sometimes having to be transported distances to more specialized facilities for months at a time. However, his choice placed the stress on family who are hours away....fortunately for family Drs. kept him in hospital for about month and he had built up strength, DH went up when his brother came home for 4 days. 

Usually a recommendation by your doctor; then an evaluation is done while in hospital. If you are alone a Dr. will recommend in-care rehabilitation, if you require 24  hour help, and they will offer/set-up PT on-site. Bonus is access to Dr. and nurses, etc.

 A social worker in the hospital is the one who has the resources to set everything up for after-care regardless of where you go after hospital. Ultimately it is your choice. And your choice is your responsibility. 

As far as getting to PT or Dr. appts when home, Medical Ins. will provide transport service/ per evaluation=need. You would have to weigh the pros and cons as they are usually carpool transports...so not at your convenience. Best not to stand waiting for a bus or be jostled.
Does your area have the community shuttle buses? Most people think they are only for the elderly, not so. Hospital social worker can give you the information and the bus will be able to take you food shopping and other places.
Does your Pharma deliver? One reason I picked the one I did, plus the drive thru..so give them a call.

The Masons do 'good works' and may be a resource for helpers, emergency contacts within the community. There are "strangers" out there who enjoy helping others. All we have to do is say "Please and Thank you"

Medicare if Dr. warranted may provide an aide for a determined number of hours, which may be broken up during the day.
So they may assign an aide to come in the AM to help you out of bed,light laundry, food, etc...then an aide would come in the PM to put you to bed. (That is what BIL would have gotten). He has groceries delivered. He is very independent, even to his detriment.

Given what you have posted to date, it would seem that rehab would be safest. I would want to avoid a fall without having someone near, someone on call 24 hrs. And then hopefully an aide a few hours 2 days a week if needed to help. (I learned that if you are the last client of the day on their shift and you need an extra hour, if you give them a heads up they may stay and you can make an agreement for fee/hr and pay out of pocket...at that point they are on their time.)

Give the hospital social worker a call for a heads up. That way if you need to bring necessities you have them.

Hoping the procedure goes well and the mend is swift.   
Title: Re: surgery is scheduled!
Post by: SjoAmy on September 04, 2013, 07:48:38 PM
Am going to the Anesthesia appointment this Friday September 6.  Wish me luck.  If anyone can throw a wrench into the plans for surgery and get away with it, it's these people.  Wish me luck in brown-nosing....I don't do it at all, usually....but I want to be xtra nice to these peeps.
Title: Re: surgery is scheduled!
Post by: SjoAmy on September 06, 2013, 02:29:57 PM
They will not let me know the time until the day before.

The appointment was good overall.

They are trying to rule out a UTI.  Urine culture will be here by the 11th.  I am udderly exhausted.

Title: Re: surgery is scheduled!
Post by: SjoAmy on September 10, 2013, 09:02:18 PM
Got the calls from heart doc and gyn......heart doc says potassium level is 4.3. A okay for surgery.  Gyn says urine culture came back with only microscopic hematuria, reviewed it again in light of my IgA nephropathy diagnosis we are A-Okay for surgery too.  Clearance all good now.  I get the time call tomorrow -- the time for surgery. 

Wish me luck.

My housing authority wants to see me on September 24.  Good luck, I'll most likely be in rehab for my surgery.  I hope they will reschedule.....if not....well.

Title: Re: surgery is scheduled!
Post by: slccom on September 11, 2013, 11:30:27 AM
"My housing authority wants to see me on September 24.  Good luck, I'll most likely be in rehab for my surgery.  I hope they will reschedule.....if not....well."

What is that about? Can we help?
Sharon
Title: Re: surgery is scheduled!
Post by: SjoAmy on September 11, 2013, 02:54:45 PM
Too much doctor drama has happened today.

Ultimately.......the surgery registration time is 8:15 AM tomorrow morning, surgery time is estimated at 9:45 AM.

Housing Authority was cooperative (for a change!).  They are postponing the September 24 date.  I am to call them the 1st week in October, to update them on my progress. We're talking about a date between Oct 4 thru Oct 12....but they are willing to work with me on revising the date if I need time to heal.  They are being great about this.  It's to renew my section 8 lease.

I thought I was in the clear.....heart doc and gyn settled themselves.  Was happy.  Until the Endo calls me this morning.  Wants another Renin level.  She wanted the renin level that you have to lay down for 30 minutes for.  For whatever reason her lab couldn't do it STAT, as she wanted.  She talked to another doc in the practice, and I was given clearance -- basically out of quality of life -- and we can discuss the renin discrepancies (1.56 above the high end of range) at a later date.  They figured that because I walked to the office and that may be why it is high.  The Endo tried to cancel the surgery -- but didn't.

So tomorrow at 8:15 am, I will be registered for surgery.

You may not hear from me tomorrow.....usually the day of surgery is a crappy day.
Title: Re: surgery is scheduled!
Post by: slccom on September 11, 2013, 04:18:59 PM
I'll pray that God guide your surgeon's scalpel. We look forward to hearing how well you are doing afterwards!

Hugs, Sharon
Title: Re: surgery is scheduled!
Post by: quietdynamics on September 11, 2013, 04:49:19 PM

SjoAmy...Prayers for success tomorrow. Hope you get some rest tonight.
Title: Re: surgery is scheduled!
Post by: SjoAmy on September 11, 2013, 10:21:01 PM
Just can't fall asleep yet.  Perhaps part of it is the pain in my back.....but I think its because I am anxious.   

I took the 2 showers with the antiseptic like my pre op package said to.  Of course showers wake me up more than anything else. 

I'm just scared.

Who needs to watch the Rocky Horror Show when you have the idea of a cervical fusion to keep you up at night?
Title: Re: surgery is scheduled!
Post by: eija on September 12, 2013, 01:07:47 AM
Sending prayers your way!

Title: Re: surgery is scheduled!
Post by: Velcro on September 12, 2013, 08:33:18 AM
Thinking of you and prayers for a quick recovery.
Title: Re: surgery is scheduled!
Post by: SjoAmy on September 25, 2013, 09:54:39 PM
This journey has been 14 days long.  Sept 12, surgery & seizures....Sept 13 & 14....all spent in the hospital....they got my anticonvulsant dosages wrong....set me up for more seizures on Sept 15, seized in the CT scanner to boot.  IV Adivan.  September 12-14 was on Morphine IV push every 4 hours. Sept 15- 23 on Roxicodone 20 mg prn or every 4 hours, which ever came first. 11:50 PM on Sept 23, I was given my first dose of Methotrexate, ever, 5 mg.  Was on 3 rounds of medrol, before the Mtx.  Sed rate was 123. After Mtx, sed rate was 60.  60 is my norm.  Norm.  Funny word.  Right now, it has been 24 hours from the Mtx dose.  Going much better than before it.  Pain would not go below 5 or 6 before Mtx.  Lots of daily averages were 8-9. Quite a few 10s too.  Today my pain was a 4 at worst.  Last night I got my first full nights sleep thanks to Mtx.  Looking to get discharged tomorrow.

Sorry I didn't update as I  went but I wanted to be relatively pain free first, to enjoy writing you all.

Thanks for the love, support and prayers.
Title: Re: surgery is scheduled!
Post by: Velcro on September 26, 2013, 08:43:57 AM
Good to hear from you.  Wow, you've had a time of it.  Glad things are getting better and that the pain level has decreased that much! 
Title: Re: surgery is scheduled!
Post by: slccom on September 26, 2013, 10:00:15 AM
I'm glad to hear that you made it through the worst of it! May the rest of the journey be much easier.

Hugs, Sharon
Title: Re: surgery is scheduled!
Post by: Ripvanann on September 26, 2013, 11:16:31 AM
Thanks for the awesome update. Praying for fast and complete recovery. Sorry the journey stunk so bad.
Title: Re: surgery is scheduled!
Post by: SjoAmy on September 26, 2013, 06:18:07 PM
It's a little early to tell but, I do believe that the use of my right leg came back near 100%.

This rehabilitation place has some serious codependency issues.....3 days ago the only question I was getting asked was "When are you going home?".....now they want to hang on to me until tomorrow....they are worse than overprotective parents!

My entire left side and right leg seem good to go.  My right arm is another story.  It is still very heavy from the elbow down....that is after Mtx.

Before Mtx, it was from the right side of my neck to my right shoulder down to the elbow and down to the wrist.  Most painful was the elbow, and the heaviness of the entire extremity.

I am being told this is normal.  I refuse to believe such matters.
Title: Re: surgery is scheduled!
Post by: Carolina on September 26, 2013, 06:53:53 PM
Sending healing thoughts and peace your way, SjoAmy.  You've come so far.........rest, relax, recover.

And keep us posted.  So wonderful to go with you through this journey.

Hugs, Elaine
Title: Re: surgery is scheduled!
Post by: SjoAmy on September 27, 2013, 07:33:57 PM
Am home now.....hospital bed came right away.  I will try it out tonight.  I have a 4 wheeled respiratory walker, brand new, too.  My stamina is not where it ought to be.  Got plenty of ice packs on.  And an annoying Aspen neck brace.

Gonna go to bed in my new hospital bed.  Wish me luck.
Title: Re: surgery is scheduled!
Post by: Cricket on September 27, 2013, 07:56:24 PM
Wow, I sure missed this post earlier!  Talk about chemo brain, but I an delighted you are home and are having good results.  Remember to get your rest.
Keeping you in my thoughts.
Cricket~
Title: Re: surgery is scheduled!
Post by: Velcro on September 30, 2013, 09:03:37 AM
I hope the hospital bed is working for you and that you are feeling better.
Title: Re: surgery is scheduled!
Post by: slccom on September 30, 2013, 09:05:42 AM
Rest, and heal.

Hugs, Sharon
Title: Re: surgery is scheduled!
Post by: SjoAmy on September 30, 2013, 01:57:13 PM
Yes, when I am tired enough I will sleep on anything, I've discovered.  Being able to recline while sleeping is awesome for this neck.  I get about 3-4 hours sleep before pain acts up, and I have to get up when that happens. 

Am looking forward -- believe it or not, even despite the side effects, to taking Methotrexate tomorrow night, for my weekly dose.  Last Tuesday when I took the first dose, it dissolved all my pain and I got 9 hours of sleep that night!  Before that, I was getting 2-3 hours AT BEST before the pain and inflammation said hello again.  Night shift nurses hated me for it, I could never stay in bed long enough for them.

Am more afraid of the intensity of the inflammation and pain -- ESR WAS 123 -- than I am the side effects.  Imagine a pressure cooker....my muscles and bones especially felt pressure from all sides, like a pressure cooker, and I was not able to get comfortable despite having roxycodone for pain (20 mg).

I learned why... If the inflammation is not taken care of, the pain med becomes a secondary band-aid, that doesn't function well unless the inflammation gets taken care of.  I need Methotrexate to bring down the inflammation, since NSAIDs cause stroke and complex migraines in me, and Asprin results in anaphylaxis.

I am doing the best I can just for today though.

Thanks for your love, suggestions, support and prayers!  And hugs!!

Amy
Title: Re: surgery is scheduled!
Post by: SjoAmy on October 01, 2013, 01:41:47 PM
The PT came today.  We did my work.  I have had the best luck with OTs & PTs!

The surgery was much more complex than what I was told.  My PT gave me the details:

Anterior cervical disketomy, partial corpectomy & decompression of thecal sac and nerve root bilaterally at C6-C7 level.  Anterior body fusion of C6-C7, anterior arthodesis between C6-C7 with spinal cord compression and myelopathy.


There was A LOT that I was not told.
Title: Re: surgery is scheduled!
Post by: SjoAmy on October 21, 2013, 11:47:26 PM
So I got clearance to take off the brace today! 

If I am on a bus, being in a car as a passenger, or doing anything that could require quick movement, I need to wear it.  If I get pain, I need to wear it. 

But other than that.....neurosurgeon gave me clearance to keep it off as long as I can.

Which means......

drumroll please......

I can take a shower all by myself again!

I can change my shirts without an assistant helping me!

I will be able to shower & shampoo my Whole head tomorrow morning!!!!!!!


Yaaaaay!!!


It's the little things in life.  ;-)
Title: Re: surgery is scheduled!
Post by: Velcro on October 22, 2013, 08:42:59 AM
 ;D ;D ;D ;D ;D Yay!!!!!!!!! ;D ;D ;D ;D
Title: Re: surgery is scheduled!
Post by: slccom on October 22, 2013, 02:00:23 PM
Why wait until tomorrow  morning? When I finally got the clearance to take a bath after my foot surgery, about 2 months later, I came straight home and did so!

I'm so glad it went well. Usually, the surgeon doesn't really know everything that will have to be done until they go in. Sort of like how when you go to fix something in the house and you have to remove some drywall, then you find out that the electrical and plumbing need work.

I'm glad your electrical and plumbing are fixed!

Sharon
Title: Re: surgery is scheduled!
Post by: mebog on October 22, 2013, 02:27:55 PM

Hi,  Even   though i can WAlk without a walker, my DR. told be to always use one. He said if I fell and broke something I would not be able to have surgery because of my lungs.  The most important thing is "DON"T FALL' :'( :'( :'(
I'll keep you in my prayers,
Don't fall, ::) ::) ::)



mebog
Title: Re: surgery is scheduled!
Post by: SjoAmy on October 22, 2013, 07:57:06 PM
As long as we don't get ice......good chance of not falling.

Now if ice gets out there......I just may use my walker. 

It is off & on for me with the walker.  Like this morning I did some light groceries.  Was good without it, but took the neck brace, and used the brace while on the bus.  Leg strength was great tho.

And then around 5 PM....some of the worst fatigue ever....ended up going to bed....slept for 4 hours. 

Last night and tonight are MTX nights.   Might be that.  I am 1 month into MTX.
Title: Re: surgery is scheduled!
Post by: Suslew on October 25, 2013, 07:29:35 PM
I hope you enjoyed that shower and glad to hear that you're up and around!
WoooooHooooo!
Title: Re: surgery is scheduled!
Post by: SjoAmy on October 25, 2013, 09:14:18 PM
Never underestimate being able to shampoo your ENTIRE head.

With the braces, that was impossible.

Now  :).  ::).

It is so nice.....people are saying how good I look.

Amazing.....the pains of surgery and mtx are good investments.

My bad days used to be 7 days a week.... Now 2 maybe 3 days.

Meralgia paresthetica pain is down 60%.

Range of motion is coming back.

In a few months I may try to get back to boxing.
Title: Re: surgery is scheduled!
Post by: slccom on October 25, 2013, 09:20:38 PM
Congratulations! I am so happy to hear how well you are doing.

Sharon
Title: Re: surgery is scheduled!
Post by: SjoAmy on October 25, 2013, 09:30:32 PM
Thanks Sharon!

Ya all will love this....I have two Carhart jackets....one red XL & one black XXL.

Been wearing the black....but today it looked big....I thought do I need to get the red?  Am I that small again?  Can't be?!?  So I tried it on.....not only did it fit & zip, it went over my hips!!!

I was right.....down goes the inflammation.....and down goes my weight....and hunger.