Fifa's Surgery 11/10/14 with Dr. Buchowski

[susancook]

I agree...forget the visitors. First of all, I do not remember any of them. If close family members want to visit just to see if you are alive, fine.....then they can leave quickly.
Being in the hospital is about you....not them.
Susan

[tae_tap]

Ed,
I've been wondering how soon I'll want my kindle, phone or iPad -LOL! I feel lost without at least one of them! Sounds like it could be a few days, as I'm not one of the young ones! I know you had much more extensive surgery than most. Your advice, reflections AND sense of humor are so helpful!

Peg,
I may be a bit younger, but unlike Ed I had a hard time in the hospital sleeping even under the meds without the background noise of my ipad. I used it for both surgeries. Barnes does have TV's that are at your bedside, but there was a comfort of having my ipad playing instead.

I was like Ed as far as not wanting anyone at the hospital, especially in ICU. I really did not want visitors while I was at the hospital, mainly because I know how cranky I can be under intense pain and did not want to have to apologize to anyone for uncontrollable crankiness, hehe!

When I left the hospital a friend I met here on the forum, Heidi, was down for her one year follow-up with Lenke and she met me in my hotel room. She relieved Lance for a few minutes for him to pick up food and allowed me to break down from that need to remain strong and just cry it out and be honest about where I truly was as far as pain. I would not have made it through my first night without he having been there when she was.

Ed seems to have perfect comic timing to just cut through the reality of this process and calm the nerves. He is also very helpful on many more levels. He defiantly has been a huge aspect in keeping me sane the last couple of years.

This forum has a way of developing friendships that feel more like a piece of the family. The non-judgmental and the ability to be honest with others who know exactly what you are going through brings a comfort.

Tamena

[jackieg412]

Hi Fifa, we all welcome you. It took me several years to post here but I too had followed the forum for awhile. At first you will not want anyone there but I found out ,the hard way that you need someone to watch out for you. As Ed said it is a rough journey at first. I too had a t-10 to pelvis fusion I my first surgery but fractured through t-9 on the sixth day after surgery. I am an avid gardener with my million dollar spine. But I did not do much for the first year. Then I charged everything and avoid getting to the ground as much as possible. I had large planter boxes built. It has been 5 years since my surgery but I still have a limited amount of time I can stay down on the ground. So you learn to modify and get the job done.

[PeggyS]

Ed,
I've been wondering how soon I'll want my kindle, phone or iPad -LOL! I feel lost without at least one of them! Sounds like it could be a few days, as I'm not one of the young ones! I know you had much more extensive surgery than most. Your advice, reflections AND sense of humor are so helpful!

[titaniumed]

I've enjoyed reading your posts and love your sense of humor!

Well thanks! I never know if I’m crashing and burning on the comedic effort.....Usually no replies means its pretty good.

After watching the Shawshank Redemption recently, at the end Andy and Red mention the words “Get busy living or get busy dying”.
http://www.youtube.com/watch?v=BLXOcyDQKtc

It was something that kind of hit home with my decision at the end....The risk had to happen no matter what and yes, I also made it to Zihuatanejo.....

I didn’t want anyone showing up at the hospital while I was in intensive care. My surgeon kept me out because he told me the pain would be a 10 with all the work I was having done with the anterior and all....but people came anyway and I never knew they showed up because the lights were on but nobody was home. I think that was the ketamine..... I lost around 5 days of mental retention. I wonder if that’s what dementia is like? I was on the strongest meds they had and was knocked out every 4 hours for 9 days. This isn’t the norm as far as immediate recoveries is concerned, since I have followed many others testimonials. Some of the younger folks are texting hours later. I couldn’t even find my phone for days or work it because my shoulder and arm were also broken (shattered humeral head) from a bad ski crash 10 days before my spine surgeries. I would be lying if I said it didn’t hurt.

People are different as far as support is concerned. I am single and well, I did have some issues with the pain and all that scoliosis has to offer, a sort of 38 yr pinnacle arose after a few days when the brain started working again. I was very upset and pretty mad. Not mad at anybody......just mad as hell. Maybe I was justified after holding it all in over the years, but there was this graveyard nurse that straightened me out with a little bit of counseling on her part. The strong meds triggered the “why” question once again. It had been many years since I re-visited that era of my teenage years. Holding it in? or whatever. I don’t know. The males of the forums don’t openly talk about these sorts of things on the scoliosis forums. I kinda like to lick my wounds privately.....

You feel tall and stiff when you first stand up....I grew 4 inches and the people that were slightly taller than me where now looking up at me. It was actually a riot seeing their faces....he he. There should be no bending, no lifting and no twisting for awhile. Was I going to take that chance? No way Jose, I was a good boy! I didn’t lift more than a dinner plate for 5 or 6 months. And walked on eggshells for a long time. All movements were done slowly and carefully during the immediate fusing period of 8 months.

Can I garden? I don’t, but many here have reported that they are now pulling weeds. I think this is at the 9 month mark. I think this one was a Lenke study! LMAO. You would think it would be depressing for a surgeon to ask a patient and have them come back cheerfully saying that they were now pulling weeds with their million dollar spines......(smiley face)

Congrats on quitting smoking. It’s a no-no for spine patients, inhibits the fusion process from the constriction of the vessels. Blood flow is pretty important in this whole thing, and bone bleeds....so walking stimulates this whole action, and keeps the guts moving while on opoids during your recovery. It also helps prevent DVT which is bad, bad, bad. I would practice your squats. I did this at the kitchen counter. Up and down, work up to a hundred a day. And diet does work! I used a gall bladder diet and lost 9# month and I wasn’t trying to lose weight. I wouldn’t have made it without the bean soup. Soup is good food.

On the subject of meds. They will give you injectable or IV meds if needed for pain and they do work well, no doubt. The main thing is that you want to be weaned to orals before leaving the hospital. I kind of left early and had to wean home alone and that was tough and couldn’t sleep. You cant sleep when you are in pain.

Ed

[Rise]

Hospital/post op prep

It's been a very stressful time not just for me, but for my husband. Did you have a support system at home? Did folks stay with you while you were in the hospital?

My biggest concerns right now are, in order...
1. Do I really need someone to be with me 24/7 at the hospital? This is going to be really hard on my husband mentally and logistically. I worry.
2. How limited will I be after surgery long term? Will I be able to toilet without aid? Can I garden? Can I do yoga? Can I swim?

There are other concerns, but right now, I'm most worried about my family. My job is secure, my house and office are prepared and ready, and mentally, I'm almost ready. I think there are things in the first couple of days postop that hubby doesn't need to experience, and I'm trying to spare him that, but also am scared to be alone. Hope that makes sense. That's my biggest problem right now. I'm tempted to try to tough it out alone - I mean, there will be nurses, right???? LOL I was going to hire a private nurse to be bedside, but the doc says that's overkill.

Hi Fifa,

I had surgery about 12 weeks ago at HSS (T9-sacrum) and I shared many of your fears/concerns. Immediately post op I was in PACU where visiting hours are quite limited and thankfully they manage your pain beautifully. While I remember being extremely. "Out of it" I was very cognizant of when my husband and sister were with me. Seeing me immediately after surgery was upsetting to both of them. My face was extremely swollen from the 6 hours I spent face down on the operating table. The swelling took about 2 days to go away.

From PACU I went to a step down unit for another 24 hours. My husband stayed with me most of the time until visitng hours were over. No need for private nurses in either PACU or step down. Then it was off to a regular room. Again, no need for a private nurse but having my husband there to watch out for me and comfort me was invaluable.

As far as how I was after surgery I truthfully questioned my decision on and off for the first three wweks or so. The pain killers make you a bit nuts and the fear if breaking something for me was big. I would say after week 5 I felt much more in control, stronger mentally and physically and was off all plain meds.

If you can't do a lot of exercise before surgery I really recommend at least working on your legs. Having strong legs will make life during recovery sooooooo much easier.

I may not be the best person to tell you what you can and can't do because I am likely doing way too much and am praying I don't wind up paying for it later. Assuming there are no big surprises down the road for me the surgery was the lesser of two evils. No doubt my future was not going to be an easy one if I did nothing. It sounds like you're in a similar spot.

Best of luck to you.

Risë

[PeggyS]

I've been concerned about the amount of time I'll need my husband at the hospital, too. He has mobility issues left over from all of his surgeries. I'm hoping to go to rehab for a week, but it sounds like it's difficult to qualify. I'm supposed to stay in St. Louis til my 1st check up - 4 weeks post-op.

The myleogram was stressful because the dr & tech spent a lot of time discussing where to put the needle! I didn't develop a headache - thank goodness b/c I was all over the campus for tests.

I'm so glad to know someone else has the same doctor! Good luck.

[Irina]

Hi Fifa,

I am fused T6 to Sacrum and I don't have many limitations. I don't need any toilet aid, I can swim and I do it every weekend, but I only do breast stroke. Any other type of swimming is not comfortable for me, just feels odd. But I was swimming using breast stroke only even before the surgery, so may be that's just my habit.

I never gardened, so can't comment on that, but think I would be able to do it if I wanted to. I quit doing yoga. My surgeon told me that I can do yoga, but modified. Honestly, if I wanted to go to my old yoga class, I'd have to modify A LOT and it would not worth it. I won't be able to do much. But I am not heart broken about it. There are many other things that I can do now and could not do before the surgery. Like standing and walking for as long as I want. Before, all I could stomach was 5 min of standing and I needed to sit down. After half-an-hour of walking my lower back was hurting. Now I can stand in the kitchen and cook without any pain, go to museums and cocktail parties and enjoy myself, travel and walk for hours and hours until my feet (not back!) get tired. We are going to Maui for Thanksgiving and I booked a sunrise tour to Haleakala (a dormant volcano) on a windy and bumpy road and a helicopter tour over west Maui and Molokai because I feel confident in my ability to handle bumpy roads and getting in and out of a helicopter.

So, am I sad about not being able to do yoga? No!

I had my surgery at UCSF and my family was with me most of the time. I was very lucky to have them there. But some people here did it solo. You need to prepare your husband and family to what is coming because people generally don't understand full implications of the early recovery. Educate them. They need to be ready mentally too.

Good luck to you!

[fifa]

Hi Fifa and welcome to the forum. Good luck with your surgery. I was also putting mine off for a long time because I just wasn't ready. People on this forum are wonderful...welcome to the family.

Thanks, Irina! I appreciate your welcoming words!

Have to admit that I really wasn't ready, either, but supposed I'm as ready as I'll ever be. It's not like it is going to fix itself and it certainly isn't getting any better! LOL

Take care!
Fifa

[tae_tap]

Hi FIFA! Welcome to the forum. I too had surgery in COMO and St. Louis. I live a couple hours from COMO and actually travel that direction 1-3 times a week.

The hotel connected to Barnes is great. Makes getting around easy and the staff is personable. I didn't have my husband stay in the room over night but he was there till late which is good because they really help with the pain control when you are unable to really address it. He knew the signs of me squeezing my thumbs when it got unbearable (which I didn't realize I did) and was able to address the situation.

Good luck! You will be in good hand.

Tamena

[fifa]

Fifa

I also waited.....34 years to be exact, but after having talks for 2-1/2 years with my surgeon, my procedure became complicated. I was rejected in the end and I had to beg. I had a massive L1-Pelvis anterior (ALIF) with partial corpectomy due to advanced end plate damage. Degeneration in adults over 50 can really get serious....They flipped me over for the posterior operation 2 days later.

I often think about the intense amount of pain I endured before my surgeries, and was fortunate. I really had no decision since one doctor gave me a year to live....Decision making on an elective surgery is something we put on the back burner, and pain is a strong signal that organs are suffering. “Jean-Martin Charcot”

So, I understand your situation completely....

For anxiety, I ran..... kinda like Forrest Gump. (smiley face) I forgot that movie and why he ran???? I need watch it over again. Running and deep breathing outdoors is what I did. I also ate well, had to lose weight, and wanted my nutritional situation and immune system at its best going in. I also took no meds at that time.

In the end, after a 2 year recovery and adapting, I came out quite well. I still snow ski after fusion surgery, and post my ski video every once in a awhile to boost people up a bit. Here it is. I’m in the red jacket.
http://www.youtube.com/watch?v=4tEypv3Vz8o&feature=plcp

Welcome to the forum
Ed

Hi, Ed -

I've enjoyed reading your posts and love your sense of humor! Have to admit that watching you ski in the video you posted made me a bit teary today. That's been happening a LOT lately. I'm not on meds so I can't blame that...it is either stress or perimenopause (or a combination of the two). LOL Glad you posted the video as well as your signature information. Golf Nut's tee shot has been pretty inspirational, too, as has Tap Tap (I think that's the right user name). Susan's story has kept me on the edge of my seat (praying hard for you, Susan). Even though I didn't name the others specifically, I've read all the posts (even in the "sorry I had surgery" thread) and I feel like I know you all even though you don't know me yet. I pray for us all.

I wish I could run and relieve some of the stress, improve the lungs, and lose some weight. I've lost about eight pounds just with diet in the last couple of months. I'm exhausted most of the time. With the instability in my spine currently, the only thing really holding me upright is my abdominal muscles. My abdomen is in a constant state of "crunch," if that makes sense. I hold my breath a lot to stay upright. I can't walk very far...can walk less than half a block now and then turn back. This has been quite hard to take because I've been a pretty active person up until a couple of years ago. I'm overweight and just quit smoking, but I really haven't been limited in my activities until the last couple of years. I find myself extremely short of breath with minimal exertion, and while I was a smoker, I've never been a heavy smoker, and my lungs are clear on x-ray. The movement of the ribs on my right side has greatly diminished my lung capacity. The rib hump on the right is getting more pronounced every day. I kept thinking that I could "yoga" (meditate) away the pain and push through it, but just can't anymore. The loss of height (three inches) with the collapse of the spine has just squished everything down - I can't really get my diaphragm to expand the way it should on a deep breath. Also, I'm afraid now to do anything except a few basic yoga moves (no more twisting...yikes!).

It's been a very stressful time not just for me, but for my husband. Did you have a support system at home? Did folks stay with you while you were in the hospital?

My biggest concerns right now are, in order...
1. Do I really need someone to be with me 24/7 at the hospital? This is going to be really hard on my husband mentally and logistically. I worry.
2. How limited will I be after surgery long term? Will I be able to toilet without aid? Can I garden? Can I do yoga? Can I swim?

There are other concerns, but right now, I'm most worried about my family. My job is secure, my house and office are prepared and ready, and mentally, I'm almost ready. I think there are things in the first couple of days postop that hubby doesn't need to experience, and I'm trying to spare him that, but also am scared to be alone. Hope that makes sense. That's my biggest problem right now. I'm tempted to try to tough it out alone - I mean, there will be nurses, right???? LOL I was going to hire a private nurse to be bedside, but the doc says that's overkill.

If any of you have any thoughts and/or advice, I would appreciate hearing from you.

Ed, take care, and keep those posts coming! You (and everyone) are helping more than you know, and I'm grateful. Thanks!

Fifa

[fifa]

Hi Fifa!

Welcome to the forum!
You & I will be having surgery with Dr. Buchowski, just 2 weeks apart!
I agree, it's better to 'choose' the surgical intervention than to have to deal with an emergency. I've had plenty of time to get our house & lives organized. I know there'll be some things I won't get crossed off my 'to-do' list, but overall, I'm feeling prepared. Every now & then the edge of feeling panic gets a little too close!
That pop in your back and the resulting pain had to be terrifying!
How far is St. Louis from your home? We live in Columbus, OH - 400 miles away. Will you be staying in St. Louis for a month? We're renting an apartment for close to the same price as a nice hotel or extended stay. We stayed at the Parkway Hotel for my pre-surgery testing. Very nice.

Hi, Peggy!

Yes, I couldn't wait to talk to you when I saw your signature line about possible surgery with Dr. B. Don't you just love him? Hubby and I both really like him a lot. Yes, we are also getting the house organized and I'm trying to get my workplace organized, too. Hired a yard guy, carpets cleaned, bidet on the way....LOL

The day I had the last pop, August 12th, was the day I made the follow up appointment with Dr. B. I just always thought I would have a choice about when I would schedule surgery. The pop just scared me, especially since I couldn't feel the right foot. We discussed driving to Barnes that day, but I couldn't have managed the car ride.

We live in Columbia, Missouri, which is about two hours west of Barnes. We can make it to Chesterfield in about 1 1/2 hours. We've been seeing Dr. B at the Chesterfield office. So, I'm not too far away. Initially, when we saw Dr. B two years ago, we were told to plan for a week in the hospital and two weeks in rehab, all in St. Louis. If the insurance wouldn't pay for inpatient rehab, then we would stay at the Parkway and do the rehab as an outpatient. Something must have changed in the last two years, because at our latest visit, they said it would be a week in the hospital and maybe staying over the weekend at the hotel to be close by (especially if I didn't feel like making the trip home). I really don't know what to expect.

I'll definitely be at the Parkway the evening of November 9th. I don't want to drive in the morning of the 10th and ruminate about surgery in the car for two hours...I'll be wrecked and won't enjoy the operation. LOL I'm very happy that the Parkway will accept our dog (for a fee). Hubby and I are currently trying to figure out what he will do.

Soon, I'll figure out my signature line. I'm 51 years old, just by the way. Will add that to the signature as well as the xrays and such.

Did you have your myelogram and all the teaching? I'm set to do that in a couple of weeks. I'm really anxious about the myelogram. The last one I had was ten years ago, and I got a spinal headache as a parting gift. Swore I would never have another one, but apparently, I'm gonna.

Hope to meet you in St. Louie, Louie! I don't know how the private messages work yet, but you are welcome to send me one.

Fifa

[fifa]

hi fifa
welcome...

i am just shocked that no "standing" films were taken sooner...
i thought X rays while standing were the simplest, cheapest to
do and the first ones doctors ordered, vs. more expensive,
MRI's, CAT scans, myleograms, etc....especially when dealing
with insurance companies who will be paying for the radiology.

best of luck with your surgery
jess

Hi, Jess!

Yes, in retrospect, I agree with you. I think the reason was twofold - first, I always went back to the orthopaedic group here locally for my care, and my symptoms have always included radicular pain down to the toes on the right, so they went directly to an MRI every time (obviously lying down) looking for impingement, I guess. My insurance company allows me to see a specialist with no referral from anyone, so for 25 years I bypassed my primary care physician and went straight to the ortho group. The ortho group here now has their own MRI, and I have great health insurance, so I think that is the second reason. I mean, they all knew I was post surgery, so I assume that is why they went that way. I've been in the medical field for 25 years and I never questioned it. Didn't know anything really about scoliosis other than it meant a "curved spine." Truly, I didn't think anything of it, either. I just figured my spine had curved a bit since surgery in 1987. Never thought it would be progressive or eventually debilitating. The ortho doc here that I've seen for 27+ years (who did my surgery) never discussed the scoliosis as being anything other than a curve. I have several herniated disks, stenosis, etc., so that has always been the discussion in the office (never scoliosis). I've gained a lot of knowledge in the last four or five years.

My insurance has now changed with regard to the MRI - for the last one I had in August (when I broke another facet joint), I needed pre-authorization and it took several weeks to get it. I haven't needed the pre-auth before for that.

I was shocked when the plain films were compared to the MRI. Oh, and the developing rib hump has also gone unnoticed for the last four years, too. Again, I think no one here locally was concerned about the scoliosis since it seemed minimal on MRI, so no one has addressed it, plus no one here locally does adult scoliosis surgery.

Hope you are doing well!

[Karen5]

Oh! And to add pictures/your xrays, scroll down below the reply box and click on "manage attachments". That will give you a dialogue box where you cilck on "add files" then click "select files" to choose files from your computer. Hope that helps!

[Karen5]

Thanks, Karen. I hope you are doing well. I saw your daughter's x-rays. I haven't figured out how to post mine yet, but will be doing that soon. She sounds like a trooper!

I had a hard time getting my account activated (I think you did, too?). I e-mailed the scoliosis admin e-mail plus Joe's several times each and finally was activated after MariaF intervened. I was getting anxious!

Hope you are doing well. I'm hanging in there and pretty scared about what lies ahead recovery-wise, but I'm hopeful. I'm hoping to get my life back soon!

Fifa

I am well, thank you for asking We all have our days and moments, but we're getting through. And yes, I was another one who had trouble getting my account activated. Very frustrating when I wanted to connect with others who had similar experiences, but I'm so thankful we're in now! Your surgery is the same date as my daughter's first surgery, so I'll be thinking of you and keeping fingers crossed that you finally get relief!!