Re: Kerry--back home from surgery

[Guest guest]

Hi Kerry,Thank you for sharing your experience with the group, you have to be a strong person to go through this revision surgery. I would like to know more about your journey to surgery, you mention not wanting surgery that's where I'm at now. I think the day may come when I too don't have a choice, I worry about the curve continuing as I do nothing. I am 51 and live alone. I have question I hope you don't mind, how old are you and who did your surgery? What was the curve and did they get any correction or did you have flatback?Praying for you as you continue to heal.DerondaFrom: kerrry.rich <kerrich@...>Subject: [ ] Kerry--back home from surgery Date: Wednesday, January 5, 2011, 12:44 AM

Thought I posted already, but it didn't show up--so this might show up as a repeat. Sorry if that's the case, luckily I have it as a paste--I'm home and thought I'd share my experience--I'm now filled up with metal and fused from T9-sacrum

The surgery was a lot more painful than I had anticipated--I have been taking chronic pain meds for almost 8 years now and I'm sure that played a role. I was kept on all my home meds and for pain control all I was given was 1 mg of dilaudid push button every 10 minutes with a lockout

of 4 mg every 4 hours. As I said, my body is so tolerant to pain meds--I was

basically not really medicated. I remember waking up thinking that I hadn't had

surgery yet--I kept telling the nurse that something was wrong with the table

that I was laying on because it had a metal bar laying across under me. I

remember her informing me that the surgery was over and that I was in my

room--it was 9 at night. I guess they said I had a lot of trouble coming off

the anesthesia and I was kept in post op for almost 6 hours--I also needed 5

units of blood--lost so much--much more than they had anticipated--they had only

ordered 2 units "just in case" and they also used the cell saver so they gave me

back all of my own blood--or as much as they could catch. The first night I was

up all night groaning--didn't think I had it in me to get through it. I had a

fever for the entire week while I was in the hospital(the other week I spent was

in rehab), and they couldn't figure out the source. I had an arterial line a

regular IV, and a central line. I personally asked for the central line so they

wouldn't have to come in and poke me constantly. Of course I also had a foley

and drainage tube from the surgical site--I was wired from top to bottom--you

know the drill! They got me out of bed on day 2--ugh! I found though that I

preferred standing than I did lying down--sitting was NOT fun. On day 3, I was

able to go walking--once I was able to walk, I wanted to be out of bed as much

as possible--unfortunately they were short staffed--holidays and all. Lucky for

me though I got a private room the entire time I was there--spent tree days in

ICU then the rest of the week on the neuro step down unit. Had no food for 4

days--my belly was not waking up ha ha--finally after they heard some "faint"

bowel sounds, I was able to have a liquid diet--jello, tea, and ice pops, and

even water was heaven at that point! They wouldn't even let me drink water

before--only sips with meds--of course I cheated at times--I think they caught

on though, because they started bring me less water with my meds ugh!

It felt great once they started taking out my tubes! I had my

arterial line pulled out on day 4 along with my foley, they also pulled out my

other IV line. I have to admit, I would have liked to have kept the foley a few

more days since it was so hard getting in and out of bed. I drink a ton of

water so I'm the "potty" girl! I had a bedside commode but you know how

grueling it was to get in and out of bed a few days after surgery--it still is a

bit of a struggle to be honest with you--and I'm 19 days post op! They left the

central line in but capped it off so I was completely free of lines and tubes.

I believe that they took my surgical dressing off on day 6 along with the

drainage tube--no fun! I'm still so numb back there but they were so ruthless

in ripping off the tape, they actually pulled some skin off and left me bleeding

in spots--I remember when I was a kiddo with my 1st surgery, and even my 2nd

surgery in 1996--having the drain pulled out was so painful, so I anticipated

pain this time--I was pleasantly surprised though--I took a deep breath and

exhaled as they pulled it, so I didn't feel much! The site looked good--three

surgeries--same scar--weird! I had my first post op appt yesterday--all the

strips have fallen off, but I still have one area that is somewhat open--looks

clean so it should heal without intervention. Finally when they were getting me

ready to go to rehab, day 7--they pulled out my central line-- and finally found

out the source of the infection and the reason for my fevers(101 and above for a

week.) Don't want to get gross but green gook came out with the line. I'm

really lucky that I didn't get sepsis since a central line goes right to your

heart. The infection was closer to my skin--they sent the line off to pathology

and I was the proud winner of a tube of neosporin, generic version of course ha

ha--they had been given me IV antibiotics all along, so that probably kept the

infection at a superficial level. The fevers pretty much immediately ceased

after that. I can pretty much say that the worst part of the surgical

experience was the muscle pain in my hips, groin, and legs. I would say the

groin was and still is the worst--at first it just felt like my muscles were hot

and searing--it all makes sense because for 30 years now my muscles have

shortened so much, they feel like they have ripped apart. I had one experience

in the hospital that was unrelated but scared me non the less. While moving in

bed, I felt like I had a hot poker jabbed into my right buttock and the pain was

electrifying and coursed through my leg--and bought me a ticket for a CT--turns

out that it was the pedical screw on the right side. but I did find out that

both sides of the sacrum can poke on my muscles and fascia because they are so

close to the surface--along with the stabilizing bars--I still get the pain

occasionally, it seems to hit me when I'm readjusting myself in bed. I got so

scared the first time because I thought I had broken something, but now that I

know what it is--and it's still not fun, I can deal with it. That concludes my

hospital stay of 1 week--great hospital, wonderful nurses and ancillary

staff--under the circumstances it was a pleasant experience because of the

smiling and supportive staff.

Next I spent a week in rehab. I know it has been a huge debate

in the group but I needed the help in learning how to use my new body! The

rehab was right on the hospital campus and once again I had a private room--My

doc ordered private rooms for me--no guarantees of course--because my mom passed

away suddenly and very unexpectedly last month, I wanted my daughter to have

access to me 24/7 just in case--she had such a rough time when my dad passed

away that I worried so much about her and wanted her to have the opportunity to

spend the night with me if she needed to. It was the holiday season as well, so

I guess that as well worked in my favor. Rehab was terrific--They worked with

me with occupational therapy as well as physical therapy. I did at least 3

hours a day of work, but most days I had 5 one hour sessions. There were no

techs believe it or not, I strictly had actually therapists. They gave me a lot

of home equipment which was helpful as well. I got to the point in rehab where

I couldn't stand being in my room, so I would walk around and join some other

therapy groups--they welcomed any extra work you wanted to put in--the gym was

really close to my room so I walked over, with my ever present walker, and

joined in groups such as leg groups, arm groups, etc. I definitely over did it

some days, but I felt that it was better to keep moving. Of course I needed a

little extra valium here and there, but it was worth it! I personally believe

that rehab got me through the whole ordeal. I learned so much and had a amazing

team of people(they set you up with a team for continuity.) At first, since I

could walk a hundred feet, insurance didn't want to send me to rehab--they

thought a skilled nursing facility would suffice. I called a few on the list

and they have no therapy, just group jazzersize or chair exercises with the

elderly folks that are the inpatients in that type of nursing facility. Skilled

nursing facilities hold no benefit for people like us that need therapy. The

only benefit for that type of facility I suppose, if you were living alone and

needed the extra help until you felt well enough to go it alone. My pain doc,

who I hold so close to my heart, spent three and a half hours on the phone the

evening before I left the hospital, fighting for me with our insurance--united

health care. He called me that evening in the hospital at 10:30 that evening

after getting off the phone with the good news--he won!! I don't know what I

can do to thank him enough for all that he has done for me! Anyway I spent a

week in rehab and I feel that my recovery wouldn't be going as smoothly without

it. I now have daily exercise sheets and I've been walking around my

neighborhood. Believe me, I'm still in enormous pain and I feel weak and tired

and my muscles are yelling at me constantly--but all in all I'm doing well. As

you know I didn't want the surgery, but when I fainted and fell at Wall mart and

couldn't walk, the choice was not mine to make any longer. Oh well, what's done

is done. I'm still super concerned about the ramifications of changing my body

back to normal position after compensating for 30 years--I guess only time

will tell.

Thank you to you all for your support and great advice--if you have any further tips to pass along, please do--by the way Happy New Year to you all, and I hope this new year brings you all joy and tranquility and of course a lot of fun and laughter as well!

Kerry

[Guest guest]

Kerry, I too want to thank you for sharing your experience and will be waiting for further info from you as you heal. I too have had flatback 30yrs and like you, wonder how my muscles will take the change.

I just got word that my Workers Comp has verbally agreed to pay for the revision so as soon as they actually make a payment my surgery will be scheduled at Hopkins. I have many trepidations as the time nears. Your honest descriptions make it seem a bit more possible to go through with. In addition to flatback, I have arachnoiditis and worry it will be made worse by the changes. I also have been on mega meds and worry they won't be able to take care of my pain post op. Your letter makes me feel more confident that even if that happens I will get by. I wish they had medicated you better! Heck, I wish you hadn't fallen and made the revision necessary but very much appreciate that, since it was, you took the time to let us know how it went. I sincerely hope it will be all uphill from here. Kate

From: Deronda Harmon

Sent: Thursday, January 06, 2011 6:10 PM

Subject: Re: [ ] Kerry--back home from surgery

Hi Kerry, Thank you for sharing your experience with the group, you have to be a strong person to go through this revision surgery.

I would like to know more about your journey to surgery, you mention not wanting surgery that's where I'm at now. I think the day may come when I too don't have a choice, I worry about the curve continuing as I do nothing.

I am 51 and live alone. I have question I hope you don't mind, how old are you and who did your surgery? What was the curve and did they get any correction or did you have flatback?

Praying for you as you continue to heal.

Deronda

From: kerrry.rich <kerrich@...>Subject: [ ] Kerry--back home from surgery Date: Wednesday, January 5, 2011, 12:44 AM

Thought I posted already, but it didn't show up--so this might show up as a repeat. Sorry if that's the case, luckily I have it as a paste--I'm home and thought I'd share my experience--I'm now filled up with metal and fused from T9-sacrum The surgery was a lot more painful than I had anticipated--I have been taking chronic pain meds for almost 8 years now and I'm sure that played a role. I was kept on all my home meds and for pain control all I was given was 1 mg of dilaudid push button every 10 minutes with a lockout of 4 mg every 4 hours. As I said, my body is so tolerant to pain meds--I was basically not really medicated. I remember waking up thinking that I hadn't had surgery yet--I kept telling the nurse that something was wrong with the table that I was laying on because it had a metal bar laying across under me. I remember her informing me that the surgery was over and that I was in my room--it was 9 at night. I guess they said I had a lot of trouble coming off the anesthesia and I was kept in post op for almost 6 hours--I also needed 5 units of blood--lost so much--much more than they had anticipated--they had only ordered 2 units "just in case" and they also used the cell saver so they gave me back all of my own blood--or as much as they could catch. The first night I was up all night groaning--didn't think I had it in me to get through it. I had a fever for the entire week while I was in the hospital(the other week I spent was in rehab), and they couldn't figure out the source. I had an arterial line a regular IV, and a central line. I personally asked for the central line so they wouldn't have to come in and poke me constantly. Of course I also had a foley and drainage tube from the surgical site--I was wired from top to bottom--you know the drill! They got me out of bed on day 2--ugh! I found though that I preferred standing than I did lying down--sitting was NOT fun. On day 3, I was able to go walking--once I was able to walk, I wanted to be out of bed as much as possible--unfortunately they were short staffed--holidays and all. Lucky for me though I got a private room the entire time I was there--spent tree days in ICU then the rest of the week on the neuro step down unit. Had no food for 4 days--my belly was not waking up ha ha--finally after they heard some "faint" bowel sounds, I was able to have a liquid diet--jello, tea, and ice pops, and even water was heaven at that point! They wouldn't even let me drink water before--only sips with meds--of course I cheated at times--I think they caught on though, because they started bring me less water with my meds ugh! It felt great once they started taking out my tubes! I had my arterial line pulled out on day 4 along with my foley, they also pulled out my other IV line. I have to admit, I would have liked to have kept the foley a few more days since it was so hard getting in and out of bed. I drink a ton of water so I'm the "potty" girl! I had a bedside commode but you know how grueling it was to get in and out of bed a few days after surgery--it still is a bit of a struggle to be honest with you--and I'm 19 days post op! They left the central line in but capped it off so I was completely free of lines and tubes. I believe that they took my surgical dressing off on day 6 along with the drainage tube--no fun! I'm still so numb back there but they were so ruthless in ripping off the tape, they actually pulled some skin off and left me bleeding in spots--I remember when I was a kiddo with my 1st surgery, and even my 2nd surgery in 1996--having the drain pulled out was so painful, so I anticipated pain this time--I was pleasantly surprised though--I took a deep breath and exhaled as they pulled it, so I didn't feel much! The site looked good--three surgeries--same scar--weird! I had my first post op appt yesterday--all the strips have fallen off, but I still have one area that is somewhat open--looks clean so it should heal without intervention. Finally when they were getting me ready to go to rehab, day 7--they pulled out my central line-- and finally found out the source of the infection and the reason for my fevers(101 and above for a week.) Don't want to get gross but green gook came out with the line. I'm really lucky that I didn't get sepsis since a central line goes right to your heart. The infection was closer to my skin--they sent the line off to pathology and I was the proud winner of a tube of neosporin, generic version of course ha ha--they had been given me IV antibiotics all along, so that probably kept the infection at a superficial level. The fevers pretty much immediately ceased after that. I can pretty much say that the worst part of the surgical experience was the muscle pain in my hips, groin, and legs. I would say the groin was and still is the worst--at first it just felt like my muscles were hot and searing--it all makes sense because for 30 years now my muscles have shortened so much, they feel like they have ripped apart. I had one experience in the hospital that was unrelated but scared me non the less. While moving in bed, I felt like I had a hot poker jabbed into my right buttock and the pain was electrifying and coursed through my leg--and bought me a ticket for a CT--turns out that it was the pedical screw on the right side. but I did find out that both sides of the sacrum can poke on my muscles and fascia because they are so close to the surface--along with the stabilizing bars--I still get the pain occasionally, it seems to hit me when I'm readjusting myself in bed. I got so scared the first time because I thought I had broken something, but now that I know what it is--and it's still not fun, I can deal with it. That concludes my hospital stay of 1 week--great hospital, wonderful nurses and ancillary staff--under the circumstances it was a pleasant experience because of the smiling and supportive staff. Next I spent a week in rehab. I know it has been a huge debate in the group but I needed the help in learning how to use my new body! The rehab was right on the hospital campus and once again I had a private room--My doc ordered private rooms for me--no guarantees of course--because my mom passed away suddenly and very unexpectedly last month, I wanted my daughter to have access to me 24/7 just in case--she had such a rough time when my dad passed away that I worried so much about her and wanted her to have the opportunity to spend the night with me if she needed to. It was the holiday season as well, so I guess that as well worked in my favor. Rehab was terrific--They worked with me with occupational therapy as well as physical therapy. I did at least 3 hours a day of work, but most days I had 5 one hour sessions. There were no techs believe it or not, I strictly had actually therapists. They gave me a lot of home equipment which was helpful as well. I got to the point in rehab where I couldn't stand being in my room, so I would walk around and join some other therapy groups--they welcomed any extra work you wanted to put in--the gym was really close to my room so I walked over, with my ever present walker, and joined in groups such as leg groups, arm groups, etc. I definitely over did it some days, but I felt that it was better to keep moving. Of course I needed a little extra valium here and there, but it was worth it! I personally believe that rehab got me through the whole ordeal. I learned so much and had a amazing team of people(they set you up with a team for continuity.) At first, since I could walk a hundred feet, insurance didn't want to send me to rehab--they thought a skilled nursing facility would suffice. I called a few on the list and they have no therapy, just group jazzersize or chair exercises with the elderly folks that are the inpatients in that type of nursing facility. Skilled nursing facilities hold no benefit for people like us that need therapy. The only benefit for that type of facility I suppose, if you were living alone and needed the extra help until you felt well enough to go it alone. My pain doc, who I hold so close to my heart, spent three and a half hours on the phone the evening before I left the hospital, fighting for me with our insurance--united health care. He called me that evening in the hospital at 10:30 that evening after getting off the phone with the good news--he won!! I don't know what I can do to thank him enough for all that he has done for me! Anyway I spent a week in rehab and I feel that my recovery wouldn't be going as smoothly without it. I now have daily exercise sheets and I've been walking around my neighborhood. Believe me, I'm still in enormous pain and I feel weak and tired and my muscles are yelling at me constantly--but all in all I'm doing well. As you know I didn't want the surgery, but when I fainted and fell at Wall mart and couldn't walk, the choice was not mine to make any longer. Oh well, what's done is done. I'm still super concerned about the ramifications of changing my body back to normal position after compensating for 30 years--I guess only time will tell. Thank you to you all for your support and great advice--if you have any further tips to pass along, please do--by the way Happy New Year to you all, and I hope this new year brings you all joy and tranquility and of course a lot of fun and laughter as well!Kerry