Questions about surgery/recovery

[Jkoz2011]

Hi, I was diagnosed with chiari about 2 weeks ago. I've had menu symptoms and they make me miserable. To make the story short, I went and saw my neurosurgeon and he said I need surgery and gave me two options. The first was where they burn the cerebral tonsils and the other they don't. I've decided to go with the non burning of the tonsils one. I was wondering what the actual name for this surgery is or is it stil decompression surgery? Also, he said that I may be back to regular in a week. This seems very quick for me so I'm wondering if anyone else has had the same surgery I'm having and how long it took to go back to work/school? Thanks everyone:)

[AnnieDear]

Hi, there! I had decompression surgery in March where I was in the hospital by the NS that it was a straight decompression. I had a very difficult recovery (no medical issues as far as problems, just hard to do anything, painful, lots of nausea and vomiting). I returned to school (I'm almost done with my Masters in Curriculum & Instruction and just want to finish!) in May. One 6-week class that started in May, then another in July). It was very hard. I pushed myself very hard and very fast. I also have 3 children that I home school. After a couple of fairly good months in June and July, it got worse for me. I started having numbness, dizziness, nausea, and severe headaches again. I went back to the NS in September, where he informed that he performed and "aggressive decompression, duraplasty, and C1 laminectomy" and that explained why recovery was taking so long. At that point, he told me I would still be recovering for another year or longer and that I needed to just be careful about what I was doing and how hard I was pushing myself. Mind you, my classes have all been over the internet since the surgery (I just finished 2 more). That was still difficult because I have a hard time focusing and remembering information.

So, I guess the moral of the story is that I thought I was doing what was best by pushing myself and just trying to return to normal for my family's sake. I was WRONG. Listen to the warnings, but don't let Chiari hold you back. Just be aware of it and listen to your body :)

Good luck!
Annie

[selmaS]

  Well I am glad he was not saying on the ice in a week, but even mid Feb is a stretch,,.sorry but that is not some place u would have found me then or now 3.5 yrs later and I used to skate....I am so afraid of falling and no matter how well u skate, u can get knocked over by someone else...and I would not want that....

Who did u get ur 2nd opinion from? I must have missed that...glad u did that.

[Jkoz2011]

I did get a second opinion as well as a second visit.

[Viva001]

So really not a second opinion; just a second visit?

[Sexybare]

I also had only the boney decompression first. Felt worse and ended up fing true specialist for full surgery. Be careful

[Jkoz2011]

Hey. I went back to Dr. DiLuna to discuss my surgery further. When I asked him about my recovery he said that I took it the wrong way. He meant that I wil be functioning in a week meaning up and moving if I'm the average person in recovery. I am not allowed on the ice until mod February at the earliest. I am feeling much better and am confident after my second opinion. Thanks everyone!

[Jkoz2011]

Hey. I went back to Dr. DiLuna to discuss my surgery further. When I asked him about my recovery he said that I took it the wrong way. He meant that I wil be functioning in a week meaning up and moving if I'm the average person in recovery. I am not allowed on the ice until mod February at the earliest. I am feeling much better and am confident after my second opinion. Thanks everyone!

[czpdx]

Unfortunately, I agree with Selma on this...My first surgery was the less invasive type where the dura wa not opened. The recovery was still quite difficult (three months until I could work part time, and six months until I was able to work full time -- at a desk job doing research) and my symptoms did not abate. I ended up going back in to have the dural patch done. A friend put it this way, "They made your shoe big enough but your sock was still too tight."

I think that the less invasive surgery is easier in that there is less risk of CSF leaks, but I found the recovery to be no less difficult. For me, the recovery after the dura opening was probably easier because my flow issue was properly addressed, which helped me to feel better overall.

I would strongly suggest that you get a second opinion before you go this route.

[selmaS]

  All that I have heard about these less invasive surgeries is, the patient ends up going back for a full open dura redo...I am not trying to scare u, but that is what has been going on. In most cases they do this type of surgery for children....

Most Drs that do not do  a lot of chiari surgeries r not confident in opening the dura, they do this to "prevent leaks" but it dose not always provide the space needed for the flow to be restored to what it needs to be.....the other issue is they may chip away too much bone and then u can end up with what is referred to as cerebral ptosis...or brain slump.

I really do not agree with what this Dr is saying, there is no way u can get a time line on recovery b4 surgery is even done....I think it is foolish to give one like that....JMHO and I am not a medical professional...but I have seen too many try to return to normal life too soon and they end up with set backs....

[Jkoz2011]

Thanks for your response:) my doctor is dr. Deluna in new haven who is a chiari specialist. He said that since he isn't going to be opening the dura unless he feels like he truly needs to during the surgery, I may be back to class in a week and coaching a week or two later. I will be missing the first week of class but am afraid that I won't be ready to go back to class and waste my money and end up withdrawing from the semester. So is it true that just getting the skull piece taken out makes recovery quicker? The doctor still has to cut through the muscles and everything which makes me nervous about going back to school/work too early. Thanks again

[selmaS]

  Hi and welcome to the Chiari forum.

One this that may sound crude but ur NS only makes money when he operates other wise there is no need to see u....and there is no way u will be back to coaching ice skating in a week...the nerves take 2 yrs to heal.....

Not knowing what all u r dealing with now, I would say hold off get more testing and see a few true Chiari specialists makes sure u do not have EDS b4 u consider surgery....

I am 3.5 yrs post op, my surgery went great no post op set backs, but bcuz of related issues/conditions I am not driving or back to work....for some of us it can take much longer to heal and this is y it is so important to know what other related issues u have b4 u even discuss surgery.

[linnielou232]

Welcome to our Charian family.  So sorry to hear you have to have surgery, but I would suggest going to a specialist who knows about this.  Selma has a web site on here so you can seach for a specialist, they are just NS others recommend.  I actually went to 3 before I found one that I felt comfortable with.  This is a serious surgery and to have a Dr. tell you that you will be skating in a week is kind of scary for me to think of.  I also had to have 4 surgeries due to CSF leaks, and I can say at least 1 of them I brought on myself because I did to much to soon.  Please look into seeing someone else before scheduling.  JMHO.  but I would make sure and have all the test done CINE study, EDS, there are others which I know others will help direct you.  Please start a list of issue you need to address to the Dr. so you can have all the info that you need.  I hope this helps you, and I wish you the best.  Please keep us updated on what is going on.  Just know your not alone on this journey.  There are many of us here that know what you are going through.
Linda :)

[czpdx]

Based on your work, I would say to plan for a fair bit of time off -- the idea of you falling and hitting your head on the ice after surgery is really scary. Is your neurosurgeon a Chiari specialist? It is SO important to work with someone who is a specialist. Also, take a look through old posts -- complications often arise because of folks doing too much (often out of necessity) too soon. This is a serious surgery and not one that leaves you feeling back to yourself quickly as your surgeon has implied. Good luck to you!

[Jkoz2011]

Thanks czpdx. I'm a figure skating coach so I need to be like active and able to skate with my students so one week seemed a little early to me. Glad your starting to feel better:)

[czpdx]

Everyone is different when it comes to recovery time, but I think I can safely say that I've never heard of anyone feeling back to normal in week. Frankly, I can't believe your doc would say that to you. I've had four surgeries and I typically start to feel better in about 2-3 months. I don't even leave the house (except for doctor's appointments) for the first 6 weeks or so. Right now, I'm close to 4 months post op from my most recent surgery and am just now feeling ready to return to work. Again, everyone is different.

I'm sure once the holiday weekend is over you'll receive more answers to this post.