Has anyone had a c-spine fusion AND a decompression at the same time?
I'm recently diagnosed with Chiari and have DDD. Significant herniation at C5/C6.
My NS said that the surgeries could be done at the same time. I will know more tomorrow
but would like to hear if anyone has had the 2 surgeries at once.
YES. I had both procedures done at the same time....decompression and fusion skull to c2. Fusion was recommended because I have EDS/Stickler's along with CCI and retroflexed odontoid. It was a long surgery (mine was 9 hours total) and a tougher recovery than just the decompression alone. I was in a rigid Miami J neck brace for 5 months and in physical therapy (outpatient) 5 months. Are you having fusion or disc replacement? I cannot comment on a disc replacement...I have DDD also, but didn't have replacement of a disc. Where would you have the surgery?
I'm looking at a c5/c6 fusion, not disc replacement. My insurance won't cover a replacement.
5 months in a rigid neck brace?!? Yikes...that's a long time.
I don't have EDS...I will be finding out today if I have anything other than the DDD and Chiari.
I am in Fort Myers right now, though I'm from Vermont. There is a recommended surgeon in NH that does Chiari decompression. My sister is an OR nurse and has worked with him as well.
My NS here in FL is the one that found the Chiari. The radiologist missed it in VT. Though I'm not sure how, in comparing it to other patient MRI's that have Chiari, you can't miss mine! I suppose radiologists get tunnel vision...looking for Cspine issues.
I'll post my update when I get home.
Back from the NS. I have a 5mm (on the brain scan) to 7mm herniation (on the c-spine scan). The scans were done exactly 1 month apart with the c-spine scan first.
Dr. Alverez is letting me decide when and if I have decompression.
I have a left side herniation at c5/c6 which explains my left side pain in my shoulder, arm, thumb and weakness in my left hand. The c-spine herniation doesn't explain the right side shoulder, arm and hand which mirrors the left side.
I have horrific neck pain starting at the base of my skull down to T1. I can no longer drive, well I can but it sure ain't worth the pain! Even riding for longer than 20 to 30 minutes can become extremely painful.
So my decision will be based on my quality of life...I am an active 49 yo that can not drive, can't walk long distances, can't stand in lines, can't do anything physical...Oh, and I hate the thought of someone even sticking me with a needle! Such a baby~
Do I say enough is enough and get the surgery(s)? Or do I wait it out and hope for an improvement. My symptoms have been deteriorating since November 1, 2012. Though this is the second go around...first onset of DDD was April 2006. Pretty sure the radiologist missed the Chiari then because both of my arms have never been the same (weak with no coordination).
My thought is neurological "stuff" usually cannot be medicated out... My pain NL at Columbia Presbyterian (who was the head guy at the headache clinic) told me something that still resonates with me today: "Throwing meds at a mechanical issue does not "fix" the problem...it only "masks" it; if it even does that much."
Quality of life was a huge factor for in my decision making process. We are roughly the same age and I was finding myself making excuses for dropping activities rather than saying it was due to the pain...when it really WAS the pain.
Since my surgery, a lot of neurological issues have faded....vision is getting better, tingling in hands/feet - GONE, nausea - GONE, dizziness - much better, although not completely gone yet.
We each much make our decision based upon our individual circumstances. I wanted to catch things before they became a permanent situation.
Good luck...and feel free to ask any questions!!
i had decompression surgery for chiari back in oct 2011 and will now have fusion at c3-c4. I would all do it together if I could. Recovery is hard and I th encouragement to go through recovery and hospital etc again is not encouraging...thats my opinion
Did your surgery include duraplasty?
I'm finding mixed results and am concerned about the after surgery issues.
Leaks and infections...
I just asked my Dr if it was possible to do the surgery without the duraplasty and was told that he only does the surgery with duraplasty.
Not sure that I like that answer, kinda a cookie cutter approach.
I had a dura plasty and my feelings r the risks lie in the Drs experience and which patch they use.,....I really believe if u have Ehlers-Danlos and they do not harvest skin from u to use as the patch then u may have a failure of the patch or an infection due to rejection of it. I have seen this sooooooo many times and it seems to be the denominator in all the cases.
My surgery lasted almost 8 hrs....and no fusion....I imagine the harvesting of the pericardium and the care my Dr took to make sure there were no leaks, and I am so grateful for the care they took to prevent those issues for me. With EDS I do heal slower, but it was not as bad as some others have had.
Just got off the phone with my Dr's PA and his decompression is with duraplasty.
I didn't think to ask what the patch was made off...next phone call!
I getting a second opinion from Dr. Joseph Phillips in NH. He comes highly recommended, my sister has also worked with him in the OR.
I do have duraplasty although i thought i dont.i think u should trust ur doctor anyhow...each doctor does different methids and has different opinion.but once again i would put the two surgeries together...as u only havr once anastericum,recovery...i dont think my recovery was easy at all....in whole i have to say that after one year i am still noticing differences and i am afraid of having it again
Sounds like it was the right choice for you. Did your Dr present both options to you or this was just the way he preferred to do it?
I found an article from Sept. 12, 2012 that was interesting on duraplasy.
Dr. John Oro reviewed the information from the study and this is the summary.
The authors “recommend using the CTD grading scale before planning duraplasty." Duraplasty "should be reserved for patients who are CTD grade 3.”
This is the grading system:
Grade I - “the tonsil descended more than 5 mm below the foramen magnum but did not reach the arch of C1”
Grade 2 – “the tonsil reached the arch of C1”
Grade 3 – “the tonsil descended over the C1 arch” (meaning below the C1 arch)
I personally am a Grade 1.
I am not enthralled with a Dr that tells me he only does the surgery with duraplasty, no matter the patient circumstance. I've never agreed with any form of cookie cutter approach. So, I'm hoping my second opinion Dr is more agreeable to reviewing my case as an individual. I would rather take the risk of a re-do than take the higher risk of leak and infection.
I will probably have this article printed out for my appointment.
Sorry to hear about your long recovery, but glad you are still seeing improvement.
If I can have the decompression without the duraplasty then I will probably have the fusion at the same time.
If I have to have the duraplasty (which makes recovery time longer) I will probably wait on the fusion.
I'm too concerned about a leak or an infection.
I am getting a second opinion so I guess I'll have to wait and see what that Dr says.
Keeping my fingers crossed~
I would not fit grade 3 but had a dura plasty for another issues this grading system does not account for...my odontoid was not totally reflexed but was creating a smaller area for CSF to flow, one tonsil was 4mm and the other 6mm....I was having drop attacks and all the other symptoms that go with Chiari....
If done correctly and all precautions taken, a re-do should not be needed nor should u have a leak....JMHO
I wasn't given the option...which was fine with me, because the way I look at it, I'm looking for the surgeon to make those decisions! Before the dx of EDS, my surgeon was considering harvesting the tissue from my pericardium; however, that was a "no go" after the EDS dx.
Yes I had both surgeries, actually I had three at one time. You will need time to recover cause it is a a little hard on the body at first. But allowing time to recover is fine. If you want to email me and talk about this feel free frankie_rush***@****
I forgot to add, I was 45 when the surgery was done. I did look at the quality of life. My symptoms was not as bad as some, but could have been worse. I looked at it like this. My grandbaby and wife made my decision cause I want to be with them as much and doing as much as I can as long as I can. After this it may have taken a long road to get here with alot of bumps but worth every minute.
Thank you for the encouragement!
I've had a remarkable improvement in symptoms when it comes to the pain I was in. Though there are a few news ones to add...dizziness and nausea. Which is easier to take the the mind numbing neck and shoulder pain I was experiencing.
Not sure how long this lull in pain will last but I'll take it!
Still waiting for my second opinion consult. I will keep you posted.
Your email was blocked the last 3 letters before the @ and the last part too.
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