PDA

View Full Version : Surgery Scheduled June 24 and Scared!



KathyInIowa
04-08-2016, 04:13 PM
Hey, everybody. Iím new to the forum, but like many others, Iíve been reading your posts for over a year. And I, too, have learned A LOT from all of you and I feel like I know some of you personally!!

My story is not much different from many of you Ė I was living life just fine (although I had chronic back pain for no apparent reason). When I was 45 (Iím 55 now) I noticed (what I now know was a scoliosis rib hump) something on my back. I went to my orthoped who said ďhow long have you had that? Thatís scoliosis. ď So, that started my rounds of xrays. At the time, I measured a 23 degree curve. But, I was still running and doing triathlons without much pain, I continued to carry on with life dealing with 4 kids schedules and all of that. I didnít really think much of it.

Every year when I had xrays done, my degree would go up by 1 or 2 degrees. I was getting worried, but my pain was still manageable so I just carried on.

Then, at age 52 I ruptured my L4/L5 disc. I battled TERRIBLE sciatica from that for 15 months. After about of year of the pain, my ortho finally did a CT myelogram which showed the ruptured disc. They recommended surgery but referred me to a scoliosis surgeon in Minneapolis at the Twin Cities Spine Center, Dr. Joseph Perra.

I went to see him in Feb 2015 and he gave me 3 options: 1) decompression surgery 2) fusion just in the painful area (I think Ė I honestly canít remember option 2) and 3) full blown scoli surgery.

At the time, there was no way I could wrap my brain around that surgery BUT also I had a daughter getting married in June of 2015 so I didnít think I had time for recovery from scoli surgery and even if I did, I thought it was risky in case I was in that 5 Ė 15% that have complications or bad outcomes. So, I chose Decompression surgery. He said that wasnít a bad choice, but that if thatís what I did Iíd most likely be seeing him again at some point in my life. I didnít doubt him as I knew I had multiple issues. I had that surgery April 3, 2015.

The decompression surgery did relieve the TERRIBLE leg pain, but of course I was still left with the scoli problems. But I managed well & got through the wedding (not without pain though). I knew it can take up to a year for some nerves to ďsettle down.Ē I did notice 6 & 9 months out that my calf & foot did get better with time. But, I still canít walk around the block without pain and I canít stand very long either. So, needless to say, my life is not normalÖ.. I manage because I have a pretty low-keyed lifestyle and we are now empty nesters. But, I can definitely tell I have gone downhill......

I have had 2 visits with Dr. Perra about scoli surgery since my first surgery. I have decided to do the surgery and have scheduled it for June 24.

(Note: my curvature is now 37 degrees thoracolumbar).

I would have scheduled it sooner, but even before my daughterís wedding last June, our OTHER daughter got engaged!! Her wedding is this May 28, 2016 so I had to wait after that!! Darn these kids!! I told our 2 boys no weddings for at least a year!

I have had epidurals about every 6 months. I just had one 3 weeks ago as I was in terrible pain. I hope it lasts through the wedding because I canít (wonít) do another one anyway. Iíve also developed terrible trochanter bursitis which I had a shot in my hip for that. So, now Iím being really careful not to wreck something else!

I was a runner, biker, I did Sprint Triathlons, a gym rat and such. And, now I canít even walk around my small house without pain. I mean, I do it with a smile on my face, but still!!

So, thatís my story. Iím wondering if anyone knows anything about Dr. Perra or TCSC. I didnít shop around for scoli doctors as my local ortho referred me to him. He has referred several patients to Dr. Perra. I was going to go to Mayo, but the local docs here say that Mayo refers their bad spine cases to TCSC. I do like him and I like his staff.

The proposed surgery is: Anterior/ Posterior approach, fusion and hardware from T11 Ė Sacrum. I do have sagittal and coronal imbalance (although, Iím not sure how much if that is measured in degrees)

Our oldest son lives in St. Paul (heís single) so I plan to spend the first 6 weeks post op at his apartment (lucky him)! My husband will be with me the first 2 weeks (1 will be in the hospital), my 24 year old daughter will be with me the 3rd week, and my sister the 4th week Ė husband will work here Mon Ė Thurs then drive to St Paul Thurs night and be with me Fri Ė Sunday. Iím hoping week 5 & 6 I can be alone during the day and then my son will be with me those evenings and nights.

My first post-op appointment is Aug 4, so if things are going well, Iíll come home and finish recovering here (I live 5 hours from the Twin Cities). But, of course, I will drive up there for future appointments.

Sorry this is so long. But, I thought if I laid it all out, this wonderful forum could tell me if Iím making the right decisions. I donít personally have any of my images Ė I need to get them from Dr. Perraís office this summer.

Kathy

jackieg412
04-08-2016, 05:11 PM
Hi Kathy and welcome. I don't know the Dr but 2 weeks in the hospital is a lot. Maybe part of that will be inpatient rehab. The rehab is the key. They show you what you need to know. Because you have to move yourself. After 3 or 4 weeks you won't need much help. Just with driving or grocery shopping. You'll be tired but ok. I went back to work at 7 weeks. I don't recommend it that early but I survived. You just can't lift or push or pull. It sounds like you are well covered.

KathyInIowa
04-08-2016, 08:11 PM
Thanks, Jackie. I think I said it wrong. They said my hospital stay will be 5 - 7 days. So, my husband will be with me then, and then also the next week at the apartment. I do think I'm covered - probably over kill, but I figured I can always tell someone not to come if necessary.

Thanks.

Kathy

titaniumed
04-09-2016, 01:50 PM
Welcome to the forum Kathy

Sciatica can be quite the battle.....I did that for 6 years and it drove me into my surgeries...

My doc did his residencies at TCSC years ago......which was were the SRS was founded at in 1966. Many of the scoli guruís came out of there years ago, so you are in a good place.

I take it the upper part of your spine is fine?

Any x-rays you can post? (BTW, Thatís my pickup line, smiley face)

Ed

susancook
04-09-2016, 04:36 PM
Welcome! Sciatica is a bummer. That was one of the 2 pains that initially drove me to surgery (the other being the kyphosis pain). I remember Dr. Hu saying that she was not certain that she could relieve my sciatica pain. I thought...great, go through the surgery and still in pain. That would be a real bummer. I remember the first time that I walked after surgery, the first thing that I wanted to check was my R butt pain. Well, it was gone! I know that I got a BIG GRIN on my face.

Wishing you luck through your healing journey!

Susan

KathyInIowa
04-13-2016, 11:30 AM
Thanks for the welcome. I rely heavily on the wisdom of this forum. I think my doctor wonders where I come up with some of my questions (smiley face)

I take it the upper part of your spine is fine?

Any x-rays you can post? (BTW, Thatís my pickup line, smiley face)

I don't know if I'm replying to a specific correctly (how do you get those blue boxes when you reply to a certain question?) BUT - Ed, as far as I know, yes my upper spine is OK. I don't have my x-rays but I plan to get the disc soon from my local orthoped. I will post them if I can figure it out! I do have a picture of a picture of a picture on my phone. When I look at it, it looks to me like my upper spine is OK. It looks to me like if they swing my lumbar straight, the upper part would follow. Not sure that makes sense.

I laugh every time you mention the xray pick up lines. It seems like something in a Jim Carrey movie (Love the Austin Powers quotes too!).

Susan - I appreciate your comment about worrying if the leg pain will go away after surgery. I too think "what if I go through this and I STILL can't walk around the block?? So, every day I think about your BIG GRIN!! I so hope that is me on June 24 or 25!

I have my pre-op appointments lined up. I'm trying to occupy my mind with our upcoming wedding, not my upcoming surgery.....

I so appreciate all the support of this forum. So does my husband! He knows reading your posts makes me feel better.....

Kathy

jackieg412
04-13-2016, 01:06 PM
The surgery does overtake our minds. Keep writing down your questions for your surgeon. No question is stupid. All are important. Check on your upper spine with your doctor. I was originally fused like yours but fractured the vertebra above 6 days after surgery. They had to go back and fuse the rest. Complications do happen.

susancook
04-14-2016, 03:55 AM
Glad that something that I have written here has helped someone!!!!

Kathy, you will BE OK. In fact, you will be so-o-o-o-o-o-o much better than that after surgery. In August 2014, I had emergency surgery to pull a screw out of my spinal cord. Long story.....this is a very rare occurrence and will not happen to you. I tell you this story because I had been a paraplegic for 2 weeks. I had sobbed, been hysterical, begged my doctor not to leave one day "Until you find the reason", was sad, was angry, and then, sent to a "Skilled Nursing Facility" [with bad food and lots of old people wearing bibs at meals] because the medical folks at the hospital couldn't figure out why a woman could go from walking to a paraplegic in a few weeks. I believed that somehow I would get better and then a Spinal Surgeon called me and said, "I'm sending an ambulance for you and I will do surgery as soon as we can". I had never met the surgeon. He was the spine surgeon on-call and I hoped that he knew what he was doing. But, then again, I was a paraplegic with a screw in my spine that needed emergency surgery. I did not have time to be scared. I did not have time to: have an initial appointment-another appointment-ask more questions appointment-preop appointment, check out his credentials, check out the med school-residency-fellowship credentials, check his SRS status [he was not a member as he had just finished his fellowship], check out if his patients gave him good grades, check him out with people on the forum, etc etc etc. He was my savior and my ticket out of my wheelchair. I was not afraid and I signed every paper that he gave me because....I hated being a paraplegic and he offered a ticket out! He discussed all of the risks of the surgery including that I had a "10-15% chance of being a permanent paraplegic". Everything that he said was like water off of a duck's back. In fact, as I entered the operating room with no pre-op meds, I yelled, "Wait, I didn't sign the consent!" The OR nurse assured me that I had signed it and then the anesthesiologist quickly infused some drugs. The rest is history as I can walk now with crutches. I trusted Dr. Hiratzka to remove the screw ever so gently and to give me a chance to walk. I guess if there is so little time before you are informed of your surgery date [like hours], you don't have an opportunity to be afraid. I would never recommend this way of learning this experience, but your comments reminded me of this very personal story and I thank you for giving me the space on your thread to retell it.

The take home message? Have faith and trust your surgeon. You have chosen your surgeon, and while I did not exactly choose mine, fate brought us together.
I trusted him. Trust your surgeon. I copied a picture of my first spine surgeon, Dr. Serena Hu and put it on the back of my cell phone. Under her picture, I put a label that said TRUST. I looked at her picture over a hundred times and said the words aloud every time. Two weeks before the surgery, I woke up and trusted her.

Sending calming thoughts your way,
Susan

KathyInIowa
04-20-2016, 09:31 PM
I finally got my x-rays from my local doctor. These are my last set - they were taken Aug. 2015. I will get a new set before my surgery. Hopefully my attachments uploaded correctly.

Susan - I have a confession: When I first started reading this forum, I read your whole story - TWICE! To me, you are amazing with what you have dealt with and kept a positive attitude. I remember the part about keeping the doctor's picture and saying "trust" when you looked at it. I have started doing that. I do trust my surgeon.....

Ed - I can't imagine managing the pain you have. I've read the older post on "pain" and wow, what some people go through......

I don't think my x-ray pictures are very clear. The one labeled "from John's phone" is a picture of the monitor when I had a CT Myelogram - it seems to be the most clear and it's from a phone!

Thanks for all of your positive thoughts and support.

Kathy

susancook
04-20-2016, 10:15 PM
Trust means letting go and relaxing and believing that your surgeon will do his/her best. I would look at Dr. Hu's picture, take a deep cleansing breath and say out loud, "trust". The morning of surgery, I even asked if I could walk into the operating room and hop onto the table. After the tech finished laughing, he told me that "the insurance wouldn'T cover it". The reason that I wanted to walk was to remind myself that I was doing this proactively, in addition that every step that I took to the OR would be painful and remind me why I wanted the surgery.

If you ever want to talk, send me a PM and I will send you my phone # and email.

Have faith, trust your surgeon, and look forward to a better life,
Susan

mabeckoff
04-21-2016, 12:34 AM
My first surgery in NC was with a surgeon who screwed me up badly.
I was moving to Southern CA and with the help of Linda, I found an excellent surgeon in the area. He helped me so much. Was it easy? No. I had many surgeries and long recuperations. But I needed to have it done, and I am the better for it.
Trust your surgeon . That is the way to get through it

Melissa

KathyInIowa
06-12-2016, 05:39 PM
Just wanted to report that I survived my daughter's wedding in good shape! It was a beautiful day. We flew from KC with our other daughter to Spokane, WA and spent a week with her. Her husband isn't back from his deployment yet so she appreciated having company to make the time go faster. When we were in Spokane, my pain level was pretty low and I was able to hike and walk anywhere we went! It was really freaky. I was thankful, but I had not been able to be on my feet that much in such a long time! We don't know if it was the climate or the stress of the wedding being over or what. Spokane is a beautiful place and I'm glad we got to spend time there before my surgery.

I've had my pre-op physical with my family doctor here. All went well there. I've been catching up at work and planning for when I'm gone.

In my last consult appointment with Dr. Perra I had asked him if he would brace me. He said "no - you look strong enough that you wouldn't need bracing." But, then last week I got a call from the company that fits his braces wanting to set up an appointment to fit me! So, I'm not sure what changed there, but I guess I'm OK with it. Better safe than sorry.....

One thing I have learned is that the nurses that work for Allina Health Care in the Twin Cities are planning a strike the week of June 19 - 25. My surgery is June 24 so I called Dr. Perra's office to see how this impacts their department. His nurse said it is only the floor nurses so the OR techs and clinic staff will be no different. This had also happened in 2010 and she said that Dr. Perra was extremely happy with the nurses that filled in. Of course, Allina is hoping to settle the dispute before June 19 but in the event they don't, they understand patient's concerns and we have the option to cancel our surgeries. I feel like I've gone through way too much prep (mental and physical) to cancel. Also, I viewed it as I could have a disgruntled nurse taking care of me post-op or a nurse that liked what she was doing. I don't know. I don't work in the medical community so I don't know what to think of this. Does anyone have any input on this? I really can't see me canceling my surgery so I guess it is what it is...... I told my husband his nursing duty list just got longer!!

I went off my anti-inflammatories this week on Tuesday. I'm doing "OK" but I certainly feel "more achy." I guess that goes with the territory. The best thing for me is to ride my bike in the morning to work out the stiffness. I guess dealing with more pain is just another indication that I made the right decision to have the surgery!

I've had more friends & family offer to help. I really have more offers than I think I'll need, but I'm definitely keeping a list of those offers handy! I did get a gift certificate to Merry Maids so I'm having them come over this week to check out my house.

I have 11 more days to try and remain as calm as possible. My plan is to stay busy and TRY to keep my mind off all this. Of course, I just want it done, successful and on the road to recovery. I know unfavorable things can happen, I'm just trying to not go there in my mind.

Thanks for listening!

Kathy

titaniumed
06-13-2016, 01:04 AM
Kathy, Glad to hear about surviving the wedding. I have been to a few ďwedding singerĒ type weddings in my day, and will never forget finding one of the groomsmen laying in the landscaping in a tux passed out at 6AM. He didnít make it.... The key really was under the mat, and well, when the lawn sprinklers turned on, it was one of those classic moments you never forget. I laughed for a month. I donít remember any back pain for that one....its amazing how this all works.(smiley face)

On post bracing, it probably runs around 50:50. I suppose that they do offer a level of protection.....My post surgical brace didnít fit all that well since I grew 4 inches, and I had a huge ileus. My stomach was way out there, and it took months for that to settle down. You donít want to fall down in your immediate recovery.....No bending, no lifting, no twisting, and no falling for a really long time. (6 months min) I didnít lift more than a dinner plate for 6 months....

Forget about cleaning the house. Its your time to heal, its just something everyone has to understand....

If you have waited many years like many of us, surgery is this scary thing we have to do. There is no turning back, and there is no looking back. Always look and think ahead. Set realistic goals....its going to take 2 years for a full fusion at age 50 plus so accept the change that will happen.

For anxiety, I would go outside and run or fast walk. Deep breathing is also a good idea, get used to it because they will want you doing this in the hospital.

I actually didnít buy anything or prepare for my surgeries....maybe it was my way of thinking that I was going to succeed no matter what happens, and deal with it all when the time comes.

Can you have someone post for you while in the hospital?

Ed

KathyInIowa
06-13-2016, 09:07 AM
Thanks, Ed. Yes, my husband will post while I'm in the hospital.

That's funny about the wedding. There were plenty of "fresh out of college" kids at our wedding that certainly could have been in that situation!

Kathy

titaniumed
06-13-2016, 10:43 PM
Iím sure you combed through many of the posts here, but just in case you have any questions, there are quite a few members here that can help answer any questions. Posting to the forum is a great idea since many of us offer different views, which is of great value.

You will have to get your meds now from the pharmacy and keep them at home for when you get home. No sense bringing them to the hospital, they will have that covered. (smiley face)

Itís time to let go.....and when you wake up, they will get you up standing and doing some short walks with the walker. After a few days, you take that first shower which feels so good. I asked if I could drain the hot water tank at the hospital, they told me to go for it. All 50,000 gallons! Ha ha Hot water works great for pain.

My surgeon did his scoliosis training at TCSC years ago and my x-rays probably ended up there at some point. I owe all those docs a heartfelt thank you. (Lump in throat) I guess we all owe them for helping scoliosis patients out.

Your in a good place......

Ed

susancook
06-19-2016, 05:35 AM
Just wanted to say hi and that I wore a brace after all of my surgeries. While at times somewhat uncomfortable, it gave me confidence that I was healing in the right direction. Also, when I went to the supermarket, I had a fear that someone would run into me with the cart. The brace protected me and told people to perhaps be gentler around me. Finally, when I drove, I felt that I would be somewhat protected if I was in an auto accident.

Best of luck! Have confidence in your surgeon. You are having surgery for all of the right reasons. Inspite of all of my problems, I do not regret having my surgery. If not, I would be in a wheelchair by now in a lot of pain.

Deep breath, Susan

KathyInIowa
06-19-2016, 02:59 PM
Thanks, Susan. I sent you a "friend request" but not sure I did it right. I appreciate and agree with everything you said. I don't mind being braced. I, like you, consider it a "safety net." One thing I did that has helped me (mentally) is I made a set of flash cards. Each card has a statement on "why I'm doing this." It's about 20 reminders to myself that this IS the right thing to do and NOW is the right time.

I have a question about a bed: Since I'm staying at my son's apartment until my 6-week post op check up, should I rent a "hospital bed?" I was planning to just take a twin bed from home. It's the older style where the mattresses aren't so tall. But, the mattress is nice & firm. It's a good height for me in terms sitting & standing up. (I'm not very tall). But, now I'm wondering if I should just rent a hospital bed. Is there any advantage to having the adjustable height and all of that?

Thanks.

Kathy - sitting in Iowa taking lots of deep breaths!!

jackieg412
06-19-2016, 08:02 PM
I wouldn't say that the height is the problem but the firm mattress may be. It it better to put a memory foam topper on the twin. It may not be possible to sleep without the forgiveness of the foam. If that is too tall you can get a stable step to use. If it is too short you can get a bed raiser kit. The PT should work with you to make sure you have what you need.
Good luck. It will be over soon.

titaniumed
06-19-2016, 09:20 PM
I wouldn't say that the height is the problem but the firm mattress may be. It it better to put a memory foam topper on the twin. It may not be possible to sleep without the forgiveness of the foam. If that is too tall you can get a stable step to use. If it is too short you can get a bed raiser kit. The PT should work with you to make sure you have what you need.
Good luck. It will be over soon.

Jackie is right. This is important since I couldnít sleep and I have a Tempurpedic medium. Once I laid the foam topper on top of my bed, it doubled my sleep time.

Sleeping is hard after surgery......The foam helps soften things since we have to sleep on our bandages for a while and the scar area or surgical zone is delicate until it heals and toughens up.

If I had to do it over again, I would select this topper....2-4 inches thick of ďlatexĒ foam
https://www.amazon.com/dp/B010JAE7MC?psc=1

Also, a good idea to have 2 bottles of Magnesium Citrate on standby. They have different flavors....
http://www.walgreens.com/store/c/walgreens-magnesium-citrate-saline-laxative-oral-solution-grape/ID=prod5604183-product

And plenty of soft pillows.......LOTS of them.....The more the merrier.....

Ed

KathyInIowa
06-25-2016, 11:15 PM
Hello all. This is John, Kathy's husband. Hope I can relay appropriately.

First, thanks for your forum. It has been a source of great information for Kathy.

Her surgery was yesterday, Friday morning. We checked in around 5:30am, she went into pre-op around 5:45 and I went back with her around 6:45. We got to meet the team - surgical nurse, anesthesiologist, abdomen doctor and we knew Dr. Perra. Very professional. They shoo'ed me out and I waited to her that they were done with the front and were starting on the back at around 11:45. I next heard from them when Dr. Perra came out and reported that things went well. That was around 2:15. I did not get to see her until about 4:45 - and only for about 10 minutes. They needed to let me know that she would look so pale - including her lips. Freaked me out a bit. She then had to wait for a room to be assigned. I was in the room with her at around 7:15.

I will try to get this right, cuz I am not the spine expert like you folks!
When doing the anterior they had goal of doing 3 fusions but did 4 - L2 to sacrum (did I do that right?)
Posterior was T11 to sacrum
BMP was used for fusion at 3 and 4
At 4 and 5 they 'cleared some of the opening out for nerve relief'
Spaces inserted were 14mm, 10mm, 10mm and 12mm
Said her bones were strong and they were able to 'scrape' them to improve fusing
She lost 2 pints of blood during the surgery.

The first night was as you might expect - people coming in and out of the room, she was sleeping - or passing out - for short times up to 1.5-2 hours of sleep. She was a little bloated everywhere and hot. She was pretty liberal with the morphine button (.1/click, 10 minute minimum between clicks). Blood pressure pretty low 87/56 and 94/57 and Hemoglobin at 7.6. Started on Valium around midnight.

In the morning took blood and hemoglobin at 7.1. Catheter removed. BP at 115/69. Color returning to face.

Morphine changed to .2/pump and Valium upped.

Twice during day they tried to get her to sit up and she got dizzy and passed out - would not wake up second time and scared the bejeebers out of me. A little later in the day they were able to get her to sit in the bed for 20 minutes with the back raised all the way.

She was able to go #1 a couple times in a bedpan but her belly is bloated and not much for intestinal/bowel activity yet.

In the afternoon she did some simple PT (ankle pumps, thigh squeezes and glute squeezes) and started on the the spirometer. She has been doing good on all of those.

Tonight (6pm) they had blood work done and it was 6.7 and ordered 2 units for transfusion. In the process right now while she rests a bit. Started at 9PM and expect it to go until 2AM.

Think that does it for the update. Let me know if there is info I am not passing that would be of value to you or if there is something that will help me make sure she is doing well and being taken care of.

JohnInIowa :-) (OK, Minnesota right now!)

titaniumed
06-26-2016, 11:37 AM
John

The scraping is called partial corpectomy. I had that done along with Susan, another member here. A scraping of the end plates to help with fusion. Like cleaning the old battery terminals for a good connection....(smiley face) All my spacers from L1-Pelvis are 13mm. These spacers actually lift and separate and help create room for nerves. They are made of a plastic called PEEK, and the BMP is inserted inside the spacers, a protein that heals or grows bone quickly.

The bloating is called an ileus. A shutdown of intestinal activity from abdominal surgery. Not a mechanical shutdown.....They have meds for this, and it does resolve after time. They wont release her till she does have that bowel movement. Mine took 10 days...

Edema in the legs or feet mainly is another thing that happens. A hydrostatic pressure imbalance. The movement of the legs is extremely important, along with the hallway walks. Continued short multiple walks throughout the day distribute blood and nutrients to healing zones.

She just had major surgery. Itís the beginning of a 2 year recovery, and slow going.....Sleeping is extremely difficult in immediate recovery, the first 8 weeks are hard. Every minute is spent trying to get comfortable, and the littlest chores can be difficult things. I felt like I was hit by a train. She is going to need time to heal.....

The old pains from degenerative scoliosis are traded for surgical pains....She needs to know that healing does happen, it takes time and patience.....Its important to have a positive attitude (both of you) while entering the next chapter of the book. When pain hits, never look back, its all forward thinking, one step at a time.

Any day now, they will let her take a shower. The first shower made me feel quite a bit better......

Nice report on your part!

Congratulations! She made it.

Ask any questions you wish

Ed

jrnyc
06-26-2016, 04:53 PM
apologize....off topic

TiEd.....your private messages are full.

sorry for interrupting thread.

jess...and Sparky

KathyInIowa
06-30-2016, 10:05 AM
Kathy was released from the hospital yesterday afternoon. Was a pretty rough night for pain. She is frustrated because it seems like the pain starts to be controlled and then it goes goofy again. Looking for advice on Drugs and Activity

Drugs
Dilaudid - 1-2 pills (2mg) every 3 hours
Flexeril - 1-2 pills (5mg) every 8 hours
Valium - 1 pill (2mg) every 4 hours - but trying to just use at night as it makes her really sleepy and afraid it may be slowing her bowels
KeFlex - 1 pill (500mg) 4 times per day - each meal and bedtime (anti-biotic as a safety precaution for the drainage site - which looks much better today)
Laxitive - prescribed DOC X Plus - 1-4 pills (50mg) 2 times per day - have also tried replacing with ClearLax. Looking for ideas here as she is uncomfortably distended.

Night seems to be worse than day. I wonder if attempting to wean her off the drugs during the day has a delayed reaction? I get mixed advice on narcotics - some say give her enough to keep the pain away and other say wean her or she will be constipated (distended). The distention is an issue. She is uncomfortable with that - but we also battle the pain.

As for the incisions themselves, they look great. One of the nurses said they had never seen such a straight incision on the back for as long as it was and everything healing nicely.

Activity - We have a plan of 4-5 walks and 4-5 sits per day. Walks are to be 5-15 minutes. We are not sure on how long she should sit. At the hospital it was a challenge to get her up and going, which is not Kathy. But when the PT nurse did get her going, she walked for 10 minutes, went up and down a flight of stairs 2 times and got in and out of a 'test car'.

I am a rookie nurse and can use all the help I can get. If you want to provide any information off-forum, my phone number is 712-251-4666. Feel free to text me. Thanks again for your help.

John

mabeckoff
07-01-2016, 03:49 AM
I am glad that you are on this side. It is a long healing process. It takes about two years. Do not over do it. Listen to your surgeon. Ask questions here and of your surgeon. Get pain relief.

jackieg412
07-01-2016, 08:01 AM
Just a few words---you made it!
It will take time. As far as pain ice packs may help. There will be ups and downs.
Don't sit for long periods at a time . It does seem to be uncomfortable for most that are fused to the pelvis.
Walking is key. It helps is so many ways.
And sleep when you can.

KathyInIowa
07-03-2016, 10:12 AM
Just a quick update - Doing OK. Still fighting the balance between pain, drugs and constipation. Taking Dilaudid, Flexeril and Valium. Valium is the ticket for sleep. Taking DOK PLUS 8.6 which is a combination stool softener/laxitive. Supplementing DOK with Milk of Magnesia and ClearLax. Tried a suppository 2 times - sorta worked once, not so much the second time.

My incisions are healing very well (so they tell me! I only see the front).

The pain is different than I thought. Like getting hit by a baseball bat. And my hips and thighs are very, very sore. Muscle sore. Did any of you experience that? or know what it is?

Thanks for words of encouragement. I look forward to things getting better.

Kathy

leahdragonfly
07-03-2016, 11:09 AM
Miralax worked the best for me along with Senokot-S. Milk of Magnesia can work well too but it's much easier to overshoot with it. For me being on a daily schedule of the above worked best.

I'm glad to hear the Valium helps you sleep...sleep can be very elusive in the early days. You sound like you're doing great! Keep well ahead of the pain with ample pain control and you will be able to move around more. Several 5-10 minute strolls at this stage is a good goal. Sitting was very uncomfortable for me so I mostly avoided it at first. It does get better in time. I recall turning my first corner at around 11-12 days.

Thanks for keeping us updated and keep up the good work.

LindaRacine
07-03-2016, 12:51 PM
John

The scraping is called partial corpectomy. I

Ed... I don't think that's correct. The surface of vertebrae are always "scraped" with a burr. They need to make the vertebrae to bleed in order to start the fusion process. A partial corpectomy is completely different. A corpectomy is removal of a vertebrae and adjacent disc. I think a partial corpectomy refers to removal of most of the vertebrae and disc.

--Linda

LindaRacine
07-03-2016, 12:56 PM
Hi Kathy...

The soreness in your hips and thighs is not at all uncommon. It could just be the interruption of the psoas muscle during the anterior portion of your surgery. It could also be trochanteric bursitis, which is also very common. Hang in there, it will improve.

As to John's question about how long to sit, we typically tell patients not to sit for more than 45 minutes at a time. After my revision surgery in 2011, I actually discovered I could sit in my recliner for hours without getting sore. Let pain be your guide.

Regards,
Linda

titaniumed
07-03-2016, 10:36 PM
Ed... I don't think that's correct. The surface of vertebrae are always "scraped" with a burr. They need to make the vertebrae to bleed in order to start the fusion process. A partial corpectomy is completely different. A corpectomy is removal of a vertebrae and adjacent disc. I think a partial corpectomy refers to removal of most of the vertebrae and disc.

--Linda

Its possible due to layman lingo that surgeons will use with patients. Since it states the ďpartial corpectomyĒ procedures in my hospital reports, I did question my surgeon about it after and he mentioned scraping. When I mentioned using a dremel type tool to remove the end plates, his slightly defensive response was ďonly a small amountĒ. He did tell me that my diseased end plates were shot on all my lumbar levels and that they needed to be removed.

All I know is that it worked like a charm.....

It does seem that partial corpectomy ďmightĒ have been a cervical procedure from the start.....I wonder about this. Every time I looked for info on this subject matter, it was always referencing in the neck. See link
https://books.google.com/books?id=qa-fCwAAQBAJ&pg=PA120&lpg=PA120&dq=%22partial+corpectomy%22+end+plates&source=bl&ots=kjaBHrfYW-&sig=-q1oRPG1aJBPQXKMsHrZknMxbd8&hl=en&sa=X&ved=0ahUKEwi4x5el3djNAhVT02MKHTp7D7oQ6AEIajAP#v=on epage&q=%22partial%20corpectomy%22%20end%20plates&f=false

Years ago, there was not much info out there on this....Plenty of trauma related corpectomy info however.

Ed

LindaRacine
07-03-2016, 11:56 PM
Ed...

I think cervical corpectomies are more common than thoracic or lumbar corpectomies, but all types definitely exist. I don't think that the removal of endplates (which is a fairly common procedure in anterior fusions), without the removal of part of the vertebral body would ever be considered a partial corpectomy, but I'll check on it.

--Linda

KathyInIowa
07-05-2016, 07:31 PM
Happy 4th of July everyone.

Constipation got the best of me this long weekend Tried pretty much everything. DOC X Plus 8.6 was what I was given leaving the hospital (combination laxative/stool softener). I supplemented that with ClearLax, Milk of Magnesia, and suppositories Ė no go. Then I went with liquid dynamite (Mag Cit) Ė lots of gurgling but no go. Ĺ bottle, then another Ĺ bottle. Finally a mineral enema broke the dam about 6:30PM. Until about 2 hours ago (1-2PM) I had been having occasional sessions in the bathroom, but at least things are moving. My nutrition intake has been poor, so now am so weak and having trouble getting the strength to walk.

On top of that, the hospital sent me home without enough Valium and said it was illegal to refill during the weekend or holiday, so I had to ration Valium the last couple days. Appears to me that there is a 20 hour or so lag with the Valium, which I feel is the most beneficial drug. If I cut back, it is 20 hours later that my pain level raisesÖ and takes about that long to get it back. I am sure that changes over time too! Dang this is quite the game! I now have her on the prescribed drugs: Delaudid (1-2 every 4), Flexeril (1-2 every 8), Valium (1 every 6), KFlex (antibiotic) every meal, Docusate Sodium and DOC X Plus 8.6 (1 each twice per day) and Tylenol (no more than 8 per day).

Have not found a comfortable place to Ďloungeí in our sonís apartment, so looking for ideas on comfortable sitting/lounging/eating position. Any particular brand of chairs? Companies? He has an office chair that is pretty nice that is working about as good as anything, but looking for something to sit in. I know I am not supposed to sit a lot, but at least need to sit and eat!

Speaking of eating, thoughts on what I can do to get energy in my body? Appetite not there, but know I need the energy.

Kathy in Iowa (well, in Minnesota right now)

titaniumed
07-05-2016, 10:18 PM
Speaking of eating, thoughts on what I can do to get energy in my body? Appetite not there, but know I need the energy.

Kathy in Iowa (well, in Minnesota right now)

Kathy

You need to eat. Nutrition is very important for healing.....

I loved my smoothies....they really helped...

In a blender,

1 Yogurt
1/2 banana
1/2 cup whey protein powder
30 blueberries
15 raspberries
10 strawberries
12 almonds

Buy the berries frozen, its easier and they donít spoil so soon.

I would simply store in the fridge and re-blend. Take small sips....

Get some sliced roast beef....this is an easy way to get protein. Eat it out of the bag.

Also after my event, I was sipping on pedialyte for electrolytes. The laxatives really drain you of energy.

I also ate dry granola for heartburn.

Hang in there.....

Ed

jackieg412
07-05-2016, 10:19 PM
Kathy you may be able to eat a little more now that things are moving along. You also can try a product like ensure for more nutrition.

Jjohnsonphd
07-07-2016, 08:06 PM
Hi Kathy,

We are surgery buds! I was fused T4-L4 on June 14th. I too am on Dilaudid 2mg, 2 pills every 4 hours. I feel they help but they give me terrifying nightmares and constipation of course. I have struggled with eating, such a poor appetite but I do like smoothies and frozen yogurt. I try to just eat protein with a veggie for dinner. It is just hard. I can't move around the kitchen at all and am totally dependent on my sweet parents. I use ice packs all day-my PT told me how to make them. 1 cup of rubbing alcohol, 2 cups of water mix and put in a ziplock, then put that zip,ice in a second one to prevent leaks. Life saver. During the day I made a "station" on the couch-put a sheet down and all the back cushions removed them stacked pillows all around and lay partially reclined. I have ups and downs with pain too and generally feeling weak, sick and drugged. It is so far away from my normal. Day by day.
Best in recovery!
Jana

KathyInIowa
07-14-2016, 01:39 PM
Hi everybody! Tomorrow is my 3-week post op mark. I'm feeling pretty good considering.

The first 2 weeks are definitely the worst. Everyone says it and it is true! By week 3 I feel fairly human again. I did get my appetite back which I think is a good sign. I still eat fairly bland food, yogurt, toast, eggs, applesauce, smoothies, cereal, turkey lunch meat.

I have cut back some on my meds. I'm still taking (1) Dilaudid 2 mg every 4 hours (Rx is (2) every 4 hours). I take (1) flexeril 10 mg twice a day (Rx is for 3 times a day) and (1) valium 2 mg at 10 pm to help me sleep (Rx is for 4 times a day). I'm also still taking the stool softener they gave me. They seem to be working.

All in all I feel good. I'm still tired a lot which I'm sure is normal. My family has been helping a lot. I'm fairly self sufficient but since I can't bend much I still need help with things like socks (which I only wear when walking), drying lower legs after shower, getting my feel through the leg hole of pants.

I will have like 3 awesome days then for an unknown reason I'll feel like a truck hit me. Is that normal? It got super hot & humid here so I quit walking outside. The heat was making me dizzy. So I walk the halls of this apartment. This week my walking schedule is (3) 15-minute walks. Next week is (2) 20-minute walks. I can do more if I feel like it, but they suggest adding only small 5 or 10 minute walks.

My incisions seem to be healing nicely. Boy, they are long!

I like putting my hands on my lower back and not feeling my rib hump! Even my front torso looks different without the distorted rib cage!

I can't seem to get comfortable sitting half way up to read or watch TV. I'm only comfortable laying flat. So I have to put a small pillow on my chest & put my book or iPad on the pillow. So I haven't been able to watch TV.

I'm so happy to be on "the other side." I've known for a whole year I would be doing this surgery. That is a long time to have it "looming" over me.

I know John was posting on this forum earlier. I'd like to thank all of you for supporting him. This is not easy on the caregiver. It is hard for him to watch me feel so bad and then all he had to do to help manage my pain & food & general discomfort.

I have 3 more weeks to be in the Twin Cities. Hopefully my 6-week post op check up will go well and I can go home. The good thing about being here is there is nothing for me to do but walk, eat & rest!

Kathy in Iowa

KathyInIowa
07-14-2016, 01:46 PM
Hi Kathy,

We are surgery buds! I was fused T4-L4 on June 14th. I too am on Dilaudid 2mg, 2 pills every 4 hours. I feel they help but they give me terrifying nightmares and constipation of course. I have struggled with eating, such a poor appetite but I do like smoothies and frozen yogurt. I try to just eat protein with a veggie for dinner. It is just hard. I can't move around the kitchen at all and am totally dependent on my sweet parents. I use ice packs all day-my PT told me how to make them. 1 cup of rubbing alcohol, 2 cups of water mix and put in a ziplock, then put that zip,ice in a second one to prevent leaks. Life saver. During the day I made a "station" on the couch-put a sheet down and all the back cushions removed them stacked pillows all around and lay partially reclined. I have ups and downs with pain too and generally feeling weak, sick and drugged. It is so far away from my normal. Day by day.
Best in recovery!
Jana

Hi Jana! It's good to have a surgery bud - nice to know someone who is on the same path as me. I will have to try your ice pack recipe. I had purchased one of those with the little "beads" in them, it has a Velcro belt on it so you can walk around with it on. But I can also just lay on it so I have been icing my low back.

I wish you all the best in your recovery. We can "hang in there" together!
Kathy

titaniumed
07-16-2016, 07:54 AM
I will have like 3 awesome days then for an unknown reason I'll feel like a truck hit me. Is that normal?


Yup. Your still extremely early......Good days and bad days are normal. Wasnít that a Led Zeppelin song?

Keep up the good work!

Congratulations...

Ed

mabeckoff
07-16-2016, 03:46 PM
Ed is right. You will have good days and then bad days.