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View Full Version : Anyone had their fusion extended or fused to S1?



Mistina
05-06-2004, 09:18 AM
I am very anxious to talk to all who are fused to S1. I also would like to talk to people who had their fusion extended due to degeneration or whatever the reason. I'm scared to death yet want relief as I've been dealing with this for far to long and I am so limited I just want a life again. I want it to be done and over. I will be seeing a surgeon in NYC in June and don't know what to expect. I've already had surgery to correct the discs and spurring in my lumbar but it keeps coming back and it's killing me.
I'm curious to what my mobility will be like being fused to S1 and will the hardware be a bother in my lumbar.
Anyone?
Sincerely,
Christina

spincon58
05-06-2004, 10:34 AM
which doctor are U seeing in new york?......i worry about the same issue...yet i haven't had surgery yet . ,they want to stop the fusion at L4-5 and i'm worried that the dics will not hold up after a while and i may need additional surgery.

Mistina
05-06-2004, 11:11 AM
I have an appt. with Dr. Dryer on 6-17 and one with Dr. Boachie on 6-18. If I'm satisfied with Dr. Dryer I will probably not go ahead with Boachie. I do want two opinions but with Boachie, it seems the insurance thing and payment is a big issue. I don't have $600.00 just for a visit with him. But, I guess I will pay it if it's necessary.
How old are you. I don't know about the stopping of your fusion at L4 or L5. I was only fused to L1 and my lumbar is a total mess right now. I just pray I can find help and get relief.

spincon58
05-06-2004, 01:42 PM
Hi,

I'm 45 and never had surgery..currently my back shifted, and is now at 53..and much pain in the lumber area..unable to stand more than 15-20 min...I saw Boachie..and was not pleased with him or his office staff...I never heard of Dryer...which hospital is he from...I going to use Neuwirth..at Beth Isreal South...

Mistina
05-06-2004, 02:47 PM
Hi Connie,
Dr. Dryer is at NYU and shares a practice with Dr. Errico. Dr. Errico is suppose to be one of the top revison specialists in the country. Dr. Dryer supposably (sp) does about 50 revisions a year.The fact that he is not just an ortho but also a neuro surgeon makes me glad too.
I've heard nothing bad about either of them. With Boachie, it's mixed feelings about his insurance expecially. I have talked to one lady who had a revision by Boachie and is doing wonderful with no pain and is fused to the sacrum. I guess that is why I wanted to initially see him. I'm definetely not impressed with his appointment receptionist. She isn't very pleasant it seems. I don't doubt that he is a great doctor though. I will decide whether I want to go through with my appt. with him once I see Dr. Dryer the day before.
What is your experience with Dr. Boachie? Did you not like his plans for surgery? Fill me in please!!
When is your surgery? Do they know for sure if they will be fusing to S1 or not?

Christina:)

SandyC
05-06-2004, 03:41 PM
Mistina,
Hi, I had revision surgery 2003...T4-S1. I had my revision done at UCSF by Dr. Deverien, in Dr. David Bradshaw's office. I'm 55 years old. To answer your question about mobility.....You will see a differance in what you will be able to do. For instance, bending over to pick up a sock off the floor is a big deal! You will have to learn to bend at the hip/knees or spread your legs apart to get far enough down to pick things up from the floor. You will log roll in and out of bed forever, which is really no big deal. It took me about 6-8 months to be able to sit and bend at the hip far enough to tie my shoes. I had to really learn to use my mirrors in my car, because you can't turn enough to see, so that you can switch lanes. It is little daily things that you don't even think about that you will notice. BUT having said all of that....I don't have nearly any pain. So it is a trade off. When the pain was so bad that it interfers with just daily living/family life, it was time to get it (back) fixed. I feel that it was worth the trade off,of not being able to move as well, i.e. bend/twist, and living a decent life without pain.
SandyC

Mistina
05-06-2004, 03:53 PM
Hi Sandy,
Thank you for your reply.
As far as bending over to tie your shoes, I pray for that day. I cannot do ANY thing like that now cause when I move, the spurs press on me in ways that it kills along with the painful facet joints moving around. I have to bend my knees and stoop to get anything right now. I can't push a cart and get groceries, ride a bike, change my bed linens, get my clothes out of the washer, NOTHING. I want to do 'normal' things that's all. My fiancee I'm sure is sick of doing everything, I want to be able to help him out eventually with house work. I can get used to not twisting, I have been dealing with this for far to long and will give up twisting to be able to tie my shoes! LOL
Having heard another success story being fused to S1 is music to my ears!!!:D I never imagined I'd be back in the "spine surgery" boat again when I went through this hell 11 years ago.
Did you have a revision or whas is first time surgery?
I guess my major fear is fear that the hardware will hurt or fail or press on my muscles and nerves or the fact that my lower back is so degenerated it won't be strong enough to hold the hardware and of course the fusion not taking. I guess those are all questions I will ask at the doctor.
But thank you for responding!!

Christina

spincon58
05-06-2004, 04:52 PM
Thanks,

that's an accurate reply of the daily things that are impossible to do once the spine is fused...i'm not sure of the trade off....I can't stand without being in pain but maybe I can take the pain and live with it?

SandyC
05-06-2004, 06:29 PM
Mistina,
Just as an FYI, my hardware did fail. Just a little history. Had a harrington in '83. Harrington rod broke in '86 and was removed. Started developing Flatback Syndrome in '90...just didn't know what was wrong and didn't have a name for it. Discovered that I did have Flatback Syndrome on my own in '00 after being told that there was nothing wrong with me/misdiagnosed with a neuromuscular diease etc over a 10+ year period.

Had the revision and became infected 4 months after the surgery. The doc removed one of the screws/became infected again a month later, had another screw removed. Anyway had 6 surgeries in 8 months...ICU/PICC lines at home. The doc removed all of the hardware, except for 2 of the anterior "cages" in October, 7 months after the original surgery. To say it was a tough year is a real understatement!!! But, would I do it again? YES, because I have a life now!! I can make the bed and clean house on my own. My husband and I went on a cruise and I could snorkle and just generally do things! The surgery is a REALLY BIG DEAL. It has to be a decision that only you can make, but for me it was worth every, sometimes miserable second.
SandyC

Mistina
05-07-2004, 07:40 AM
Geez, you have been through alot.
Why would it get infected 4 months after. That is so weird, I would think that if it were to get infected, it would do it soon after. All these things do of course scare me and I have a hard time figuring out why these rods break too when it is METAL. That seems to strange to me.
I'm terrified to say the least but anxious to be where your at. I'm due to get married next June, in which it will probably have to be postponed because of all this, AGAIN, but I want to be able to snorkel or our honeymoon and be able to walk around all day without having lay down most of the time. I'm really at my wits end with this mess so I'm ready to conquor all of these milestones, even with the risks.
I'm sorry to hear about you situation but very happy to hear how well you are now. I hope I can say the same soon.
Thanks for chatting,
Christina

LindaRacine
05-07-2004, 02:04 PM
Christina...

Since you asked...

Rods break when there is an area of non-fusion. Although the rods are very strong, the body puts a lot of force on them. When there is a non-fusion, the rods are allowed to move (minutely), back and forth. Then, like a paperclip that is bent back and forth too many times, the rod finally breaks.

Late onset infections are less common than immediate infections, but they do happen. Here are some study abstract links:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12782866
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=11052352
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12901546

Regards,
Linda

SandyC
05-07-2004, 03:30 PM
Mistina,
Linda is right about the infections that I had. The chances of you getting an infection, late term, like I did are very small. Without going into a whole big,detailed e-mail, I basically infected myself. By that I mean that the bacteria that is naterally occuring on my skin was infecting my surgical incision. My immune system was comparmised and couldn't fight off naterally occuring bacteria.

Also, just as an FYI if the care is the same at Davis as is at UCSF, you'll be very happy. I had wonderful care. Nursing was fast with pain meds, even the Dietary Dept. came to see me and make sure that I was happy with the meals and if I wanted anything in particular. Physical Therapy tried to be as easy as possible when they first get you out of bed. If you decide to go for the surgery, don't be afraid to ask for things, i.e. special raised toliet seats/more pillows/more pain meds/walker or cane to help while you get your strength back.
SandyC

Jean
05-17-2004, 01:54 PM
Originally posted by Mistina
I am very anxious to talk to all who are fused to S1. I also would like to talk to people who had their fusion extended due to degeneration or whatever the reason.
I'm curious to what my mobility will be like being fused to S1 and will the hardware be a bother in my lumbar.
Anyone?
Sincerely,
Christina

Hi Christina!
I am fused from T5 through S1 and still have pretty darn good mobility. While I am no longer able to bend, the pain in my back and legs is mostly gone and I am very glad of that! The mobility that I lost with a fusion down to S1 is that my stride became shorter when I walk and my hips hurt a bit more due to the increased stress on them. As long as I stay active and continue to walk and rest as needed I am fine. The hardware in the lumbar region does not bother me at all and at this point I cannot even feel it. Let me know if you have other questions.

Jean

Mistina
05-17-2004, 03:19 PM
That's great! It's is nice to hear of people who are fused to S1 with minimal pain. I am facing this surgery in the near future I'm afraid but sooo terrified of it of course.
Why were you fused to S1? Who did your surgery!
How far post op are your?
Can you like clean your house, change your bed linens, mop and stuff without pain?

Christina

Jean
05-17-2004, 03:33 PM
Yes, I can clean house, garden, make beds and do just about everything. While I had to really learn proper body mechanics, such as bending at the knees, log rolling, etc. After the pain of the surgery wears off, it is actually easier now that my back is fused. The reminder to keep my back straight is pretty automatic. I learned how to use all those wonderful tools to help me do things like reaching something on a high shelf with a grabber tool, or a sock putter on thing which works great. I also do things in smaller batches, i.e. take one smaller load to the washing machine instead of three at once.

The hardest thing is reaching my feet to trim the toe nails. However, there are such things as pedicures done by professionals who can take care of this. Getting in and out of a car can be a challenge if it is a small car since my head may hit the top but manageable.

My doctor is in Chicago and does a lot of revisions. His name is Michael Schafer at Northwestern Memorial Hospital. He is a wonderful doctor and I highly recommend him.

The fusion to S1 was done in 1996.

All is possible! Jean

Mistina
05-17-2004, 04:16 PM
Great to hear!!
I'm always glad to hear of these success stories in my mind. I have many many obstacles that I can't hurdle now and I'm ready to do something about it. Cutting my toenails now is quite the chore so that, I can get used to. It's the simple things like cleaning and going away with the girls for a day or something. My facet joints cause me so much pain below my fusion that being out and about for 6 hours is a long day for me. I hate not being able to "keep up" with my friends. I would love to hang out for a day without taking a two hour lay down. I mean grant it I probably never will be totally able but halfway would be nice. My biggest issue, well not biggest but something that would be great would be to be able to dance when I go go out with my friends. Can you dance?
I hide in the shadows cause I don't want people dancing into me and just watch and wish I could. That may or may not happen post revision but who knows. Another issue with me and my fiance is having a baby, that is foggy right now too. And those compact cars, forget it. I don't even attempt it now because of the pain when I move my 'joints'. I shy away from every car exept mine. I bought it just for the reason that it is hip level and I can just slide in and slide out. It's an SVW. I am really sick of footing the bills for gas though and putting all the miles on my car though!!LOL
I can ramble forever, but I won't.
Thanks again,
Christina

Jean
05-17-2004, 04:43 PM
Good luck to you! Years of pain is not fun at all. While the surgery is scary, remember, it is short lived compared to the rest of your life. Get lots of help and support from everyone.

I don't do any dancing, just not my thing. I can, however, relate to not wanting anyone to run into you on the dance floor. I find I still keep my back away from people in general.