Hi everyone, I met my first neurosurgeon yesterday to see if I was a candidate for decompressive surgery for my chiari malformation. Good news, I am. My impression of the neurosurgeon doctor, he was friendly, also he sounded optimistic about the surgery, saying that its any easy operation, he also explained what they would do, by opening up the back of the skull to unblock the csf flow and use of a skin graft, I forget the reason why for that, my mind is already getting hazy on all the details. He did say that he and his collegues has done them before and experience with chiari and decompressive surgeries. He also mention that the decompressive surgery would possibly make my syringomyelia go away on its own, but I want to know other peoples opinion on that aspect. I live in Michigan, the neurosurgeon I had seen was Mark L. Rosenblum M.D. through Henry Ford. The time I will be getting my decompressive surgery would be in the beginning of January right after the holidays. I'm also very nervous about it because I have read that it only has a 50% chance on helping my symptoms and also wondering how long recovery would take and of course worried about the possible complications. Btw my syringomyelia extends from c2 to t11, any feedback on opinions and experiences would be helpful. thanks.
I'm pretty low at this point and new to this, but I'm trying to help. All I'd like to add is if you're thinking of getting cut with a 50% chance, I'd be sure to find a doc who does this surgery only or mainly, day in day out, and could do it in his/her sleep. Location isn't as important as your health outcome, right. Don't know that doc, or how much his practice handles Chiarians, but you're not too far from WI Chiari Institute in Milwaukee. So, I'd at least think of a second opinion if you could afford it. Good luck anyway.
I agree that it’s important to find a doctor that specializes in this. The reason being is a lot of the surgery is decided once the surgeon opens you up. The more surgeries they’ve done, the more qualified decision making they can do during the surgery. In regards to the skin graph, some doctors feel this will allow your body to react better than using a foreign material to close the incision. My surgeon allowed me to make that decision but he explained to me that doing a skin graph then creates an additional wound that needs healing and could possibly result with an infection. (Something to think about). Now, about all the statistics…I would take those with a grain of salt. I’ve been told that doctors are not required to submit any information regarding their patients so I do t know where these statistics are generated from. Who really knows the true % of people that have Chiari’s.
I was diagnosed 2 months ago and had decompression surgery 1 month ago. I had a little road bump since surgery but am on the road to recovery. And your surgeon is right - it’s not as big of surgery as you would think. Don’t be worried…be excited about the better life that you will have post surgery.
Good Luck with your new life!
Tom, every person is different with surgery and recovery. It took me almost three months before I returned to work, and I didn’t feel like myself again till about month 7 or 8. You are going to be very very tired. I’m glad your appt went well, that’s a big deal! I like what gag said, if you can get a second opinion do it, and remember that the surgeon is most important, location is secondary (your situation into consideration), some surgeons perform a decompression twice a year and some twice a week. You ultimately need to feel its “right” trust yourself.
I remember hearing the words “you are a candidate for surgery” and feeling I had just been handed a golden, one way ticket back to life- it’s a relief! Just please remember that this is a journey and the healing can be slow.
My syrinx went from brain stem to c-6 and was rapidly lengthening. It was almost 1 cm in diameter and my csf flow was blocked 100% posteriorly and almost 100% anteriorly with pulsatile flow. I was decompressed in November of 2012 so I am at the one year mark. My first post op MRI in February ( 3 months post op) showed that my syrinx had already started to collapse. My one year post op MRI/flow study showed that my csf flow was completely restored by decompression and my syrinx has now resolved. In my case decompression alone resolved my syrinx.
This advice coming from these chiarians seems to be good.My surgery is 1 yr.out and Ihad one of the best NSs anywhere,he does many every year,I am still having symptoms.There’s no one who can say it’s a simple surgery it was for me easier than some previous surgeries as far as the incision and the pain.Recovery has not been easy but I have had lots of improvements,it is one step forward then two backwards.That NS can’t tell you that recovery is not hard and this surgery can bring with it complications.I will say that any surgery on the spine and brain is very serious,no matter what.I now have another condition called dysautonomia,these are things that no one can foresee but they are possibilities in any chiari recovery.They are not uncommon occurrences,there are lots to consider,sometimes other things can be caused by chiari.I will agree that you need to be sure your NS does 1-2 weekly.Don’t be afraid to ask questions and please do lots of research on your own,go to the resource site for lots of info.The main thing is to get to a specialist with lots of experience in the chiari field.
Hi Tom,
I agree that you need to ask the NS how many decompressions he has done total and how many in the last twelve months. Not his group, but he alone. With a syrinx especially, it is important to have a very experienced NS who makes sure they do enough when they get in there to properly restore the flow and relieve the pressure that is causing the syrinx. I would call up and ask his staff to get the numbers for you. This is a very reasonable thing to ask. I would also consider getting a second opinion from another experienced NS just so you can compare what they think and their approaches to your surgery. I had a syrinx and my NS explained to me that part of a successful procedure with a syrinx is to make sure that flow is completely restored but to also not create any more space than is needed because you don’t want to increase the chances of future brain sag by removing too much bone, etc.
I was decompressed 3 years ago and my syrinx was completely collapsed at 3-6 months post-op.it was a successful procedure. As surgeries go, it is not nearly as risky or major as heart surgery or brain tumor surgery and many other major operations but it is tough to go through because they cut your neck muscle and that takes awhile to heal and get strong again and your neck hurts like heck for a long time! You will be very tired and depending upon what damage you may have in your spinal cord from the syrinx, you may find you have some new symptoms that will take a while to work through. It is technically NOT brain surgery so don’t let people mistakenly scare you about brain damage-not relevant.
I agree with Patti about the stats. They are horribly unreliable. Many of these stats include children and they are a different ball game because they are still growing so this affects outcomes in ways that are different than for an adult. Also, many docs are not in any official reporting channel so their results don’t get counted. I would ignore any stat that is not from a direct source-a research study that you read yourself. I find a great deal of misinformation on many of the on line forums. I will say that this one seems to be better that the rest because the moderators do a great job of helping to correct misinformation that some people post and are great at steering you to direct research. The main stats I would be concerned with are your NS’s track record with adult Chiari patients who have a syrinx!
What symptoms do you have now? Do you have any neuro issues from the syrinx? Have you had a cineMRI?
Kate
Kate the symptoms I deal with are listed on http://www.chiarisupport.org/forum/topics/hi-all-new-here I deal with a lot of symptoms. Ty everyone for sharing your expertise and experience. I also want to mention for my insurance I'm on Medicaid so my coverage is limited :(
My son has had decompression surgery twice. With the first he had a thoracic syrinx. His symptoms were so bad that the Chiari would have killed him if he did not have the surgery. With that being said, the surgery relieved all of his symptoms and the syrinx went away. Both the Chiari and the syrinx cause all of your symptoms. For instance, my son had terrible headaches, couldn't swallow correctly, sleep apnea and vertigo -just to name a few from the chiari. He had numbness in extremities and couldn't walk without falling over -just to name a few due to increase syrinx building up over months. He was like a brand new kid after the surgery. He could walk and he could run for the first time and ride a bike. The recovery took months, slowly but surely he would get a little stronger every day. Unfortunately the syrinx returned to his cervical and he had a second decompression surgery. Again, the syrinx went away. Be prepared though for things not going smoothly, such as meningitis infection which my son had after each of his decompression surgeries. He was also left with a horrible side effect -vomiting. It was A LOT, now it is not so bad but still happens randomly. He has a hyper gag reflex as well. Any food hits it the wrong way and its pukeville. It is also hard to brush his teeth for same reason. Hi first and second surgeries were between the age of 1-2yrs. He also developed hydrocephalus after each surgery and needed a shunt. Shunt was removed after a year, thank goodness -so many complications and vomiting with that. My son will unfortunately need a third decompression surgery, the syrinx is back on his Cspine and it is a lot of fluid. The thing about the fluid is that you cannot leave it there or it ruin your spine. Everyone's case is different. If your symptoms are bad enough that you WANT relief, I say have the surgery. Again, you can't leave the fluid on your spine either. Make sure you have a Chiari neurosurgeon that specializes in this type of surgery. My son sees Dr. Mark Iantosca at the Penn State Hershey Medical Center -he is pediatric and then adults are seen by Dr. Diaz. I wish you much luck on journey!
so on Medicaid, you're restricted to Michigan only, correct?
tom88 said:
Kate the symptoms I deal with are listed on http://www.chiarisupport.org/forum/topics/hi-all-new-here I deal with a lot of symptoms. Ty everyone for sharing your expertise and experience. I also want to mention for my insurance I'm on Medicaid so my coverage is limited :(
I'm not 100% sure about my Medicaid being limited to Michigan only, I assume it would be, I'll have to do some more research.
It is in your best interest to get a second opinion; hearing another doctors explanations sometimes will reassure your fears a little bit. But no doubt if you have a SM that long, I, myself would want a doctor that has completed these types of operations and does so often.