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View Full Version : Four years post fusion



dianeh
04-05-2010, 09:38 AM
I've been hesitant to talk about my experiences after surgery because of quite a few complications, and it's hard to think about these last few years without getting teary, but since my outcome has been very good I feel the need to share. In addition I have just spent $300 getting all of my medical records and in reading them I understand things more. My surgery went very well - I have a 9 degree curve. I have a good fusion, nothing loose or poking through the skin. I was diagnosed with intractable pain a few weeks after discharge and accidentally over dosed with a fentanyl patch by a local pain control dr. I had to be readmitted to figure out a drug regimen to control the pain. I have very little memory of the 4 weeks after the surgery. I was feeling much better, got the flu and passed out hitting my night stand and reopening my incision. The local ER wouldn't touch me so Dr. Lonner had me shipped to the city to resuture my back. When 3 months went by I started PT and work simultaneously. PT worked me too hard (they never treated anyone with such a large fusion) and I ended up with piriformis syndrome and sciatic pain. I could not accelerate my car because of the pain and it became more and more painful. I stopped working because of pain and exhaustion. I found out later that I was also very anemic and my primary did not treat it. I kept researching and found a practice in NY that treated piriformis syndrome and responded very well and gradually healed completely in combination with Lyrica. By the summer of 2008 I made arrangements to go back to work and a week or two after vacation developed a fever and what I thought was piriformis irritation. Instead I had a spinal abscess and was taken by ambulance to NYU where it took 3 hours to drain and flush out the area-also yet another 6-8inch incision. I was diagnosed with MRSE (staph epidermis as opposed to aureus) My blood levels didn't return to normal as quickly as they would have liked so it was highly suggested that all my hardware be removed and in 3-4 months be replaced. I was in the hospital 14 days while the doctors tried to decide what to do with me. In the end I begged them to try strong antibiotics and at least try to see if we could avoid the surgery. Well, I'm happy to say it seems to have worked but what a nightmare. My muscles atrophied from the bedrest and I'm still getting regular blood work so I have not been pronounced healed yet. My major problem now is fatigue. Sometimes I have to leave the shopping cart in the store and go home. I have trouble sitting more than 2 hours and still take hydrocodone when we travel. Although this has been an enormous situation, my family is closer than ever and I have an incredible network of doctors taking care of me. I am going back to teaching piano in the next few weeks and walking regularly to build myself up. I usually tell this story with a lot of humor because it seems so absurd, but I have those times when I am overwhelmed. I don't regret my surgery at all or my choice of Dr. Lonner who has been so wonderful through it all. Except for this forum I have never met anyone else with a fusion and I didn't find this forum until a year and a half after my original surgery. All of you give great advice and feedback and when I was too sick to write I would read posts. I know this is long but perhaps my story can encourage those whose recoveries are not typical. My mistake was not checking the PT facilities in my area and making sure I had medical backup here at home. So thank you all for listening-it felt good to get that off my chest.
dianeh

Singer
04-05-2010, 10:57 AM
Wow hon, you've been through the mill. I'm glad you are now okay and sincerely hope this is the end of your troubles. I don't think I'll ever complain about the stiffness I still have again!!!

doodie
04-05-2010, 12:55 PM
Diane -
Thank you so much for posting ... Sometimes it's hard to post on here when things are not going so well. (what I would call an understatement in your case) I do hope you're truly on the mend and are getting your life back.

It's so hard to keep a sense of humor when you're having have set back after set back - and I think you mentioned something important when you said you and your family are closer than ever. It was my experience that people wanted to help - they just didn't know sometimes exactly what to do.

I am a year out from my first surgery and still have fatigue issues. I believe you're on the right track monitoring your blood work as you have been. I just happened to have my yearly physical last month and it was suggested to do a Vitamin D test and in my case it came back quite deficient so I am taking mega doses of Vit. D. Hopefully this has been the main culprit for my fatigue. I really thought I would be feeling 'normal' by my 1-year anniversary...

I am beginning to believe there is no such thing as a 'typical' recovery....every person on this forum has such a unique story... :)

Doodles
04-05-2010, 01:25 PM
Dianeh--
Thanks for having the courage to post this info. I think we do need to recognize that everyone is so different in their recoveries and some of us just don't heal that fast. Being one year out, I'm putting my faith in the newer research that says over 50 people take more like 18 months--2 years! However, your experience is a whole new level. I admire your positive attitude to get through all of this for 4 years. I hope you are on the right track now.
My local pt said the same about my T2-sacrum scar. Saw her recently and she said she'd never dealt with anyone with such a long one before or since. We all know we have a bunch on here with that same size. The smaller areas just don't deal with this so much.
By the way, I noticed you grew up in Brooklyn. Summer of 72 my husband and I lived on Carlton Ave. right off Flatbush where he was a law intern in Manhattan. We had JUST gotten married and were to naive to realize that might not be the best place to be with an Iowa license plate on the little Chevy. We did fine and had a blast! A long honeymoon.
Take care and I pray for your recovery to speed up and stick! Janet

ADMoul
04-05-2010, 04:07 PM
OMG, Diane, what a story and thanks for having the courage to share it. I was relieved to see that in spite of it all, you were still OK with Dr. Lonner and that you have such a great attitude. I'm a relatively recent post-op of his, and I had the complication of incredible blood loss during surgery to the point that he had to stop early and didn't quite finish my hardware. (No bloodwork before or since has indicated any reason why it should have happened.) Although I have been blessed with an amazing recovery, I still have nightmares about having to go back for repair work if I don't fuse which is a possiblity. I think it's also helpful that you brought up the fact that you've got to have good PT people who have experience with spinal fusion. I am 200 miles away from NYC and at some point expect to be sent for PT here locally, but certainly want to be sure that's it handled appropriately. Sounds like some of your problems were a result of too aggressive PT. Best wishes for continued health and healing and thanks again for sharing.

JenniferG
04-05-2010, 04:28 PM
As unnerving as it is to read about these types of complications, it's important to read them anyway. Because we do all have different kinds of recoveries and there are sometimes complications. In your case, it sounds like a happy ending, thank goodness.

Thank you for telling us your story Diane and all the best to you for a happy, healthy future.

titaniumed
04-05-2010, 09:51 PM
Diane

It was good that you posted. We go through so much with these surgeries that even if we have a difficult recovery or a complication, this really is the place to communicate... And who else is going to understand? No one, but us.

Thanks to NSF, the "dark ages" are over.

When I see healthy people, I always remind them about how lucky they are. Sometimes they look at me like I'm crazy... I smile and walk away.
Let them ponder....

Thx for posting

Ed

Shari
04-05-2010, 10:41 PM
Hi Diane,

Thank you for your courage and honesty. I know first hand how hard it is to post on here when you are having a tough time. I did it too. It can be very depressing. Being depressed and feeling alone is a bad combination.

Thank you again for sharing your experience,
Shari

dianeh
04-06-2010, 04:16 PM
I am overwhelmed and very grateful to everyone who responded to my thread. My next blood work will be the end of April and since I'm feeling well I'm praying for it to be normal. My husband and I are taking a short trip to Bermuda next week and I am very excited. Of course, we always buy cancellation insurance just to be safe but hopefully all will go well and we will be able to go. I am acting as if the infection is gone, so most days don't dwell on it. I get very anxious each time I have blood work done since it seems so long to wait for results. In August I will be off antibiotics for one year so I will hopefully be celebrating! Julie, you mentioned taking Vitamin D for the immune system and I was just told to increase my dose to 1000mg per day. May I ask how much you are taking? My immune system has been depleted since all of this and I catch every bug going around 3x harder than every one else. I am trying to do every thing I can to get stronger and as much as getting sick builds immunity it would be nice not to get everything!

Once again,thank you for listening and all of the kind things you said.
dianeh

doodie
04-06-2010, 06:30 PM
Hi Diane - I sent you a private message...

twinsmom
04-07-2010, 07:41 AM
I am sorry you have to go through those very scary things. We are going through somewhat but not quite similar problems. My one twin daughter had her second surgery 6 months (adolescent with her twin sister) supposedly because of hardware malfunction. It was never mentioned that infection can cause this to happen. So we all were floored when two days before surgery her blood counts showed a possible massive infection. She did well in surgery and the doc put in new hardware. There is an ongoing conern now that even with massive antiobiotics, her type of bug P-acne, will not respond and her hardware will have to be taken out. Some docs reccomended surgery asap other our doc said to wait for cervical bone to heal. We choose to wait and hope the antiobiotics work. She had and still has severe pain. Before surgery she was in really bad shape with her pain shooting down her arm. Her back and shoulder also were looking deformed. I have never come across this. it has been nerve wracking for us. We delayed the second surgery not knowing what was going on because of her 16th b-day and driving and all that. I feel guilty I didn't listen to her better, her twin was complaining about her sprained ankle and was worried about playing basketball where she was a star player. It has been really hard this past year. So I can really empathize with your first post. We have suirvived and M has held up amamzingly well.

52skeedoo
04-07-2010, 08:58 AM
Dianeh --
Thanks for posting your story. I have had a relatively easy recovery -- no real complications. Sometimes if seems slow, uncomfortable and a lot of work. Your story helps put my little problems in perspective.

Years ago I had a serious illness so I can relate to your infection trouble. The immune system can take a while to revive. I found good diet important, but even more important for me was finding ways to reduce stress. That trip to Bermuda sounds like it is just what you need. Have a wonderful, relaxing time.

Sheri

lray
04-07-2010, 03:43 PM
When I see healthy people, I always remind them about how lucky they are.



I "think" this all of the time when I see people with their normal, straight and strong backs with no back issues. Yes, they probably have other issues that aren't so "obvious" but I am jealous sometimes nonetheless.