Fusion

Have a question about a symptom, procedure, medication, diagnosis, research, or coping? Ask questions and share what you know with others

Moderator: pmaxwell

Fusion

Postby kirafaye » Fri Jun 22, 2007 11:49 pm

hello all long time no see. I have gotten news my new surgeon feels a fusion could help me alot and I was wondering if people who have had it could help with their own stories, questions I should ask, questions they wish they should have asked anything, even down to driving. I want to know as much as possible. Thanks guys and hope you all have a good day.
kirafaye
 
Posts: 430
Joined: Fri Jun 22, 2007 11:45 pm

Postby mac » Sat Jun 23, 2007 12:48 am

kirafaye, how ARE you?? I was just wondering about you yesterday. I'm so glad you are still "out there" and glad you posted. I too am headed for a fusion this year, so like you, I'll be glad to read what others have to share.

It's so good to "see" you!! take good care.

love, mac
mac
 

Postby paularay » Sat Jun 23, 2007 9:42 am

Hello, Just to let you know that I had fussion of the C3-C5 along with decompression four years ago. They told me that I would not beable to move my neck and all, but I do have some mobility and its not bad you just get use to it. I have alot of people say "Do you have a crick in your neck?" I reply, Yes, a permanent crick. The pain was horrid, this could be because I was decompressed at the same time, I don't know. But I say it is a Pain that I would not wish upon the devil himself. But don't let that scare you. I had it in May and was driving in October. I don't take any regular meds and I have to really be aware of my surroundings because of my balance issues because of sm. Overall its not that bad. So don't get worried.
Paula
paularay
 

Postby Gracie Rose » Sat Jun 23, 2007 11:19 am

Hi all,

I had a fusion and decompression last Aug. I have a cranio-cervical fusion down to C-5. I have mobility but it's limited. It is not near as bad as I thought it was going to be. I thought I would be like a statue and feel trapped. It's like Paularay said, I am asked all the time if I slept wrong. I always smile really big and keep walking and say,"No, just a bit of brain surgery!!"

Of my 50ish symptoms, 35 are GONE and most of the remaining are better, so mine was a success. I also had a de-tethering and that was pretty dramatic for me. I didn't know legs felt like this !!! Now, my pain is still around because it is due to EDS. Nothing much to do about joint pain but deal with it daily.

I was off all the pain meds 4 weeks after surgery and found a combo of Ibuprofen and extra strengt Tylenol, really worked well. I did continue to take the muscle relaxers for a long time on the insistance of TCI. And they were so right. I did not have much pain per se but a tightness that would grip me. In the winter if I'd go outside and forget a scarf I would literally be a statue !! :roll: The rods would get cold . I would go into a warm store and in 15 min. I could move again. It became funny.

I have heard that the rods bother some folks but they are just a part of me now. My friend Cathy who had the same surgery before me agrees that we just are sort of aware that they are there all the time. Maybe we will get to where we don't notice them someday. Since I mentioned Cathy, I wanted to mention, I had her and a gal Carrie that I met on this board and I could not have gotten through it all without them. They would check on me and let me cry away and I would feel so much better after. I was feeling sorry for myself because I was not doing for my family what I always had, or becuase all I could do was get a shower and get dressed. This of course was to be expected , but I wanted normal back RIGHT NOW....a little unrealistic !!!

There is more than just the physical to a fusion though. There is an emotional aspect that is important to be prepared for. You will have a "new normal" and it is different. There is an emotional roller-coaster that seems to happen for everyone. I think it is a re-adjustment of what you think of yourself and what you think others think of you. I was a 100MPH gal and I am sooo in the school zone now!! It's just plain ol' pride. It is still a struggle for me and I am 8 months out , but it gets better all the time. This is not to say that it is all negative. Many good things have happened as a result of slowing down, not to mention most of the symptoms are GONE. Not all, but many, many.

Of course everyone is different but for everyone I know with fusions and myself, stamina is the biggest issue. The tired you get is a profound, bone tired when you over-do. Dr. B says," If you over-do, you will pay, and the currency with which you'll pay is the resumption of symptoms for a time." This is sooooo true. You really over-do and you'll know you DO NOT want to do this!!!! You don't need to panic though, just lay down and STAY THERE and they will disappear. It can be scary because you fell like OH MY GOSH the surgery was a failure....nooooo you over-did it.

You really have to re-learn your limits and try hard to stay within them. If before surgery you can do 10 things in a day, you may do 4 for awhile, and at the beginning you'll be proud of yourself for a shower and getting dressed !!!

To expect small things at the beginning will help you not to feel like you aren't doing well, or feel you are lazy. I would write down all I did so I would know I was doing SOMETHING. So much of this depends on personality too.

There have been days where I was crying telling my husband I wish I had not done this....then he shows me my symptom list, my pictures from the surgery and I go.....oh, nevermind!!!!! I am just wanting what I want NOW like a toddler. He also reminds me that the primary goal was to stop progression of symptoms, and so many are gone. I will NEVER be the way I was before it all began and that is a grieving process.

I was driving 8 weeks after my surgery. It is harder but do-able. You can buy mirrors that make you able to see much more , and you learn strategies.

Last, physical therapy is your FRIEND. Do the exercises faithfully and you'll get range of motion back. My friend Cathy is so darn good about it that during a recent surgery back at TCI they were taking movies of her neck motion because they could not believe how much she could move!!

Well, I guess you didn't ask for a novel but here it is :oops:

If you have any questions, ask away...

Lisa in WA
Gracie Rose
 
Posts: 127
Joined: Wed May 30, 2007 1:02 am

Postby kathymichelle » Sat Jun 23, 2007 12:22 pm

Lisa hit it on the nail head.

I was fused to c4 with my decompression on April 28th 2006.

Personally, fusion and PFD has got to be one of the most painful recoveries! I am still on pain meds, but I believe its due to EDS, and Thoracic outlet syndrome.

I also was a 100mph person, and now its sometimes residential(school zone) for me as well. Its my new normal.

You learn to make adjustments for the fusion, and turn your body. With the use of rear-view mirrors, and body turning from the waist you can drive. I use a speciality mirror attached to my rear view mirror for additional blind spot viewing. Its a great tool for us that are fused.

I also have to pace myself. I find that if I walk(daily if I can) it helps with the blood flow, and even though I don't walk as fast or as far it does help.

Stretching is also very important. Physical therapy is beneficial as well. I also just stopped the muscle relaxers but they seem to be needed again as I was getting more stiffness in the neck muscles and its been helped by muscle relaxers. They really do work, and its very important for recovery as well.

I am one that the rods in the back of my head bother...I didn't know that they were there until around 4 months post-op due to swelling.
They get cold, so I wear a hat over them and keep them warm. You cannot tell that they are there, but by touch you can. Sometimes they get very tender when I have a migraine, but thats about it.

I was one that Dr B and Dr M decided at 1030PM the night before surgery that they were going to due the invasive cervical traction on, and make the decision for the fusion just before the PFD.

Anyways, listen to your body, don't be in a hurry to recover, and some doubts as to whether you did the right thing will haunt you at times, but listen to the experts. I feel that I haven't given myself enough time and I personally am rather hard on myself and want things better now.

I feel that understanding and accepting yourself as you are now is a good thing..and it will come just be patient.

Take care...
kathymichelle
 
Posts: 469
Joined: Wed May 16, 2007 2:18 pm
Location: wheverer the nearest jet takes me

Postby Gracie Rose » Sat Jun 23, 2007 12:32 pm

Kathymichelle,

I am with you on the EDS pain. I think a lot of our pain is from that and so some have to high expectations of pain relief. I think if you do not have EDS you might get more pain relief post-op.

I too still take some muscle relaxers and it helps a lot. It's nice to know there are others out there that are feeling like I am. I think it's just a loooong process!!

You may not remeber but you gave me a pep-talk before my surgery and it helped so much. :D

Lisa
PS are you still here in WA??
Gracie Rose
 
Posts: 127
Joined: Wed May 30, 2007 1:02 am

Postby kathymichelle » Sat Jun 23, 2007 5:03 pm

Yes right now I am. I have to go to Napa to help my MIL sort things and help her get set up to move.

I am thinking that while we want ALL of our pain to go away, we are a product of our genetics, motor vechicle accidents, posture, and numerous other things that cannot be blamed on CM1 only. And it explains why all of our pain doesn't go away. I have read/heard that EDS pain gets worse as you age too. I say 'blah' to that!

When I read your post about EDS, I have been trying to evaluate what is CM, what is EDS pain, and what may be the herniation at c5/6.

I certainly feel with this complicated of a surgery, that two years recovery time for those with fusion and PFD is reasonable.
Yep, I remember talking to you..it would be nice some day to visit with your family..I have one son that is in chiari "denial" he has it, but is old enough to decide for himself when things get bad.

I am glad to see you post!
kathymichelle
 
Posts: 469
Joined: Wed May 16, 2007 2:18 pm
Location: wheverer the nearest jet takes me

Postby angie7 » Sat Jun 23, 2007 9:11 pm

Waiting for ins approval for my cervical fusion at C4.....
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
Posts: 1572
Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Postby mac » Sat Jun 23, 2007 9:27 pm

Angie, the surgery you are planning, is it a "CRANIO cervical fusion" or a cervical fusion? The one that keesha and lisa have had done is where the head is extracted up via Invasive cervical traction, and then fused with rods that are screwed into the back of the skull then they run down the back of the Cspine and are screwed into C2, 3, 4, 5 or however far down the surgeon feels he needs to go. I have met KM is person, so I've felt those rods in the back of her skull, tee hee!! (BTW, how great that was to meet and see someone with that CCF and get to talk about it and learn about it since I am destined for one in 6 months)...

So, I am wondering if your C4 and 5 are being fused (this would probably be an anterior approach perhaps?) or if you are having the CCF down to C4 or 5? Dr. Oro does not do the extraction first before he does his CCF as far as I know, only TCI does this.

just been wonderin'....inquiring minds want to know!! 8)

lvya!
mac
 

Postby angie7 » Sat Jun 23, 2007 9:38 pm

From what I know, he said that it will just be a cervical fusion of C4. He will remove C4 through the front of my neck and then replace it with a metal plate with 4 screws, I am assuming at C3 and C5? Like I said this is all I know now. He does want me to come down for more tests so that might show something more...I definately will keep you posted!
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
Posts: 1572
Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Postby mac » Sat Jun 23, 2007 9:43 pm

I'll be very interested to hear what he says! From all that I've heard, I respect him so much! I know he's been your doctor a long time, and I'm so glad that you have someone like him in your court! Makes those volleys a little easier to take, doesn't it.

hugs
mac
mac
 

Postby angie7 » Sat Jun 23, 2007 9:52 pm

Yes, it definately makes it a little easier knowing that you have an expert in your corner. Now lets hope that ins approves. I got my referral letter yesterday from my NL, just waiting on Oro's...cross your fingers for me... I want this over ASAP so we can start trying for another baby in the next year, are we CRAZY or what!!!!
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
Posts: 1572
Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Postby mac » Sat Jun 23, 2007 9:54 pm

Just ten minutes ago I was wondering if the twins are where you are stopping with children or if you crazy woman you want to have more! Well, YES you are crazy!! But you know your heart and what you can handle, so I guess you better get that neck fused quick!!
mac
 

Postby angie7 » Sun Jun 24, 2007 8:07 am

It isnt set in stone yet but we both want another one so we will see....
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
Posts: 1572
Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Postby Gracie Rose » Sun Jun 24, 2007 11:13 am

Hi Angie,

I am excited to hear Dr. Oro speak at the conference next month here in Seattle, I hear he's great.

Hey, if your crazy, we are psychotic.....we have twins among our 8 children :shock: and it's wonderful !!!! They were our last living children, we had a little girl that we miscarried as our last. It's too fun with all the kids running around, and the kitchen table....well...you can imagine !!!

Good for you to have plans to look forward to and not concentrate totally on all of this. It makes it much easier.

It will be interesting to hear which kind of fusion you will have. I have a friend who just had the front entry one and she said it was not terrible.

Good Luck,

Lisa
Gracie Rose
 
Posts: 127
Joined: Wed May 30, 2007 1:02 am

Next

Return to All About Chiari, Syringomyelia, and Related Disorders

Who is online

Users browsing this forum: No registered users and 5 guests

cron