Help?

[Dora]

Update...

Tomorrow is the day....

I've been trying to keep up with some squats for thigh strength and I let them put me down as part time all the way to Dec 2nd... so thank you everyone for the advice.

I went through the surgery with them on July 10th so I think I have a rough idea what to expect. They are choosing not to fuse the upper portion of my back at the moment, just from the middle down and I'm loosing one disk at the bottom and they're caging others from the front and then putting hardware in through the back.

I asked not to have illiac crest bone taken because of the riding after. They made a note so hopefully that will be the surgical plan. My argument for that was I am on the younger side and anything they remove from me is a life long change. I don't want to trade pain for pain if I can avoid it and they can't put bone they remove back. I'm upset enough they'll be using crushed part of bone from a vertebrae for the front fusion.

All in all I'm a bit of a wreck today but I'm taking it easy and leaving work after my last big meeting so I'll have a few extra hours tonight at home.

[tae_tap]

All will be fine. Keep positive thinking and do not let anything or anyone negative in your bubble. I will be praying and keep us updated on your progress.

It is in His hands now,
Tamena

[loves to skate]

Dora, Hugs and prayers for calmness and a successful surgery and easy recovery.
Sally

[mabeckoff]

Hugs and prayers for a uneventful surgery.

Melissa

[Pooka1]

I asked not to have illiac crest bone taken because of the riding after. They made a note so hopefully that will be the surgical plan. My argument for that was I am on the younger side and anything they remove from me is a life long change. I don't want to trade pain for pain if I can avoid it and they can't put bone they remove back. I'm upset enough they'll be using crushed part of bone from a vertebrae for the front fusion.

Hi Dora,

The argument I would use were it my child is DO NOT TAKE BONE FROM THE ILLIAC CREST FULL STOP. And I would have witnesses present and I would make the surgeon acknowledge it in front of witnesses. This is one issue I would change surgeons over were it my kids because I view it as that important. I have an online friend who says the pain from the illiac crest harvest site is bad and it will never go away. This has nothing to do with riding as far as I can tell nor does it have anything to do with you being young versus old. They HAVE NOT SOLVED the pain issue with this procedure as far as I know.

Good luck tomorrow. You'll be a star. :-)

Sharon

[Doodles]

Dora--
Best wishes for your surgery. Prayers and positive thoughts for you! Janet

[titaniumed]

Dora

You will do well, try not to worry.

Try to keep in touch with us if you can. You could write your username and password down and have someone else post.

I don’t think that they will dig on your pelvis for bone since its well known in the scoliosis community that this isn’t the best thing. You could mention this to your surgeon before you go in.

Ed

[Irina]

Good luck to you, Dora.

[susancook]

Good luck! You will do well!
Susan

[Dora]

UPDATE

I had tried to get on here a few times and I think the forum was down or some such.

So I had surgery the 25th of July as planned.

Positives were they left the last vertebra alone once they got in there - That had changed from the final decision going in. So last one is left alone and the top 4 and my neck. I know that I could need surgery later to fix this but I'm hoping that it buys me a bit more time in the dressage saddle (horses for those non-horse people )

Another happy point - They left the illiac crest alone and the only bone is a small chunk from on vertebra that they crushed to seed along my spine for the cadaver and bio sponges.

Now this was done at MGH with Dr. Wood and it involved opening me up in the front and the back. The front surgery was done with a general surgeon.

Pre-op the hospital was wonderful. I don't recall but apparently after the surgery for the first 12 hours or so I was on a special floor because they couldn't quite get the post-op pain and vitals figured out. This was also a very good experience.

After this?

It all went to hell.

The general surgery floor was short staffed and the staffing over the weekends were all rather young nurses. The room was disgustingly dirty. My family was horrified and took photos of how disgusting the bathroom was and the floors and walls. From incorrect diet (I'm a reactive hypoglycemic and they kept trying to give me full sugar jello etc instead of a plain clear broth) to not listening that I have a long history of anemia that does not respond outside the hospital without transfusions or iron transfusions.... AND.... because I was on my feet and walking with the walker they released me two days early....right at day 4 when the hospital stops making money on the bed (I know this from my line of work and the spouse's line of work).

Now I get that I was mobile but I still hadn't been able to eat solid food. I ordered it yes, but I couldn't keep it down plus my fever stayed up and I noticed the tell tale lump under the front incision... wound infection.

The young resident intern from the spine team kept calling me "dear" and telling me that he had interned at Children's Hospital with the best already and I certainly didn't have a wound infection and there was no reason to keep me in. He ignored the fact that I kept telling him I couldn't eat.

Anybody with a puncture wound experience will know what I am saying when I was able to explain to him that this lump was not normal. He insisted that it was where the internal stitching happened on the fascia.

He insisted that I sign the release papers. I agreed ONLY if they got me a hospital bed through my insurance.

So off I went without seeing anybody more senior than Dr. "I got my patient out in 4 days" intern.

................ and promptly developed a high fever and a giant wound infection burst about 12 hours later.

Great. Perfect.

Another painful car ride back to Boston and I was tossed between the General Surgeons and the Spinal Surgery team. Nobody would call it a wound infection until after it was dressed up and instructions given and they finally asked me if I had any questions. I said "You need to say to me 'YES THIS IS A WOUND INFECTION' before I'm walking out this door."

They stood there dead silently before one of the general surgical interns shrugged and did and after they all finally admitted that I needed to see my hematologist based on the last lab values from my release day.

So somewhat horrific right? And the recovery from the wound infection was HORRIBLE. And LONG with a metric ton of visits into the city. It's an ugly incision too, very uneven etc. But it's closed now and I'll take that.

Believe it or not I'm going to stop there and not even get into the rest of the experience because it was like a bad, made-for-tv movie when you kind of want to sit there and look sideways at the TV and go "Really? Really? How is that even plausible?"

NOW.... THE GOOD (because I swear I'm not the type to complain and b*tch about everything)......

The surgeon is brilliant.

Dr. Wood took my awful screwed up spine and did something in there that allowed me to go for a (easy) 4.5 mile hike yesterday with my family. I think people on here can understand that prior to this my life was as if I was in prison. I couldn't stand really. I could hardly walk. Sitting at my desk all day was painful. The outside of both my feet were calloused because the foot rolled with each step.

And yesterday I was outside hiking along farm fields and some gentle wooded inclines. We were slow but it was worth it.

I'm back almost full time at work. I'm at a desk so with some changes in furniture and awareness by the company that I'm not quite up to 24/7 self. I'll work from home if I wake up and I'm all locked up.

But I want to share for those looking for some hope....Almost right away I was up on the walker and then every day I was able to walk a bit further and move a bit more. It is/was hard.

Sometimes I'm a sweaty mess after a mile. Sometimes I can't stand for as long as everyone else. I do get tired quickly. I do have pain.

I allow myself all of this. I'll leave work if I'm having a bad day etc.

But I'm down to the oxy 1x a day with some Tylenol.

I'm dreaming of getting back up on my horse and I'm hoping I'm cleared to jump up for some gentle walk lunge lessons on my daughter's horse in November (steady kind horse, my horse is young and a bit risky for now).

So.... right now I am happy I did it. I believe it will get better as time goes on.

[golfnut]

Dora,
Well, you went to hell and back. What a horrible experience! It sounds like you are doing well now. I can tell you that whatever aches I still had at a year were reduced when I hit 2 years and practically non existent now at close to 3 years. Keep working hard and you will be amazed at your progress in time.

[susancook]

Exhausted reading your experience!

Wow, what an experience! From dirty hospital to second guessing young MDs. I hope that you contacted Dr. "get you out in 4 days" doctor when you returned with.....seems like nobody said that you had a wound infection. So what did they think that it was? It must have been very frustrating to tell them over and over again about your concerns, only to be discounted.

I know very few people who had a "perfect post-op course". Seems everyone had something from minor problems to others requiring a second surgery or hospitalization. Spinal surgeons are strange people, once the surgery is over, they go on to the next case, seeming never to look back.

I am looking at a second surgery to repair an incisional hernia at the ALIF site. While having the ALIF initially really didn't worry me, I guess because I was so concerned about paralysis from the surgery, I am now quite frightened of infection and the pain.

I hope that your recovery continues and pain decreases more and that you become more active although I am amazed at all that you are doing now. Your horses no doubt miss you and getting back into your previous routine will further normalize your recovery. Pick a gentle horse to start.

Susan

[Dora]

Karen - I love hearing the positives. I keep reminding myself that I'm not allowed to judge anything I'm feeling until I'm a year out. I'm just counting my blessings that it is an obvious improvement from prior to surgery. I really could not have gone on that walk yesterday before going into surgery.

Susan - I was just catching up on your thread I wouldn't worry to much about the hernia surgery. I think I remember that you are a nurse right? You'll be able to articulate any post op issue so much more fluently than I could with my "See young MD, in horses when there is a puncture wound the heals too fast you feel this...." On the pain/recovery part... so many hugs from me. I know that was my biggest thing going into this surgery because I've had two major necessary surgeries (non back related, different hospitals, excellent care) before and it was KNOWING what waited on the other side this time that had me scared before going in.

But from reading about your recovery spirit I bet you'll be amazed at how fast you come back from this one.

Oh and as a funny aside, the MGH office I swear to god, hid the young MD. I've seen the other interns and I'll give credit to the spine service that Dr. Wood has personally seen me at each post-op since that whole debacle. Once out of the honestly disturbing room conditions (and I'm a horse person, I can handle dirt) and floor care the situation was almost funny.

For anybody else that is reading: I only get into the hospital conditions here because I don't know if I would have selected MGH had I read something like what I am putting out there. I want people here to be able to add it into their considerations. Even contacting the patient advocate did nothing for the room issue because once the weekend hit the patient advocate was out. I have used Beth Israel and Brigham in Boston for two other major surgeries and I can't say enough about the care and the quality of the facilities.

As a almost pathetically funny aside there was a article in Consumer Reports about a month ago listing MGH as one of the worst for after surgical care. I can attest to the accuracy.


editing to add a general question: Pain management... I'm on oxy 1x a day @5mg. It seems like this is still somewhat normal? I'm on the oxy with 2 tylenol. Now that I'm at 12 weeks out should I be getting off it entirely? Do people just drop the last pill or switch to every other day or?

[tae_tap]

My mouth just dropped to my chest and my husband was horrified by the details of your experience! I love that you were able to fight and battle (because we all know that this is a battle) back to turn the end result positive! Keeping making those small victories and sharing them to give myself and other hope. Our families hurt with our hurt because of the things we can no longer do due to the pain and exhaustion from the pain. So the battle to overcome is worth it knowing that I will soon be back to normal and be able to do more with them. Hiking? Amazing! I can't wait for that. Congrats on everything!
Tamena

[Pooka1]

Dora! So glad to hear from you. I was wondering how you were doing!!

What a wild ride you had there. :-) It sounded even wilder than the one Spicer Cub, aka knucklehead of the year, ran... I won't spoil it for you.... http://www.youtube.com/watch?v=1FpaIIKdah4

:-)

So happy that you have plans to continue riding!

Sharon