I just got the confirmation from my neurosurgeon, he thinks I should get the surgery. He says that he found some syrinx in my spine and the chiari is large enough that surgery would be beneficial. He is suggesting just a bony decompression without opening the dura. Has anyone had this surgery? If so, did it help? What kind of restrictions do you have and how long did you have them or how long do you expect to have them?
I have never had any type of surgery but I am a "let's just do it and get it over with" type of person. I am nervous about getting the surgery but I am also nervous about not getting it.
After reading around the internet and this site I feel that my symptoms my not be bad enough to get the surgery but I am concerned that they could worsen rapidly and I will not be able to get the surgery done quick enough. (My job is very very demandin 6 months out of the year and I am in the leading position so I cannot take time off during those 6 months). Even as it is my NS wants me to get surgery within the next 2 months but I know that I can't fit it in any earlier than 5 months from now (which would be Feb 2014).
I currently (and have for a long time) have headaches, dizziness, tinnitus, vertigo and lots of floaters in my vision. Also I can fell my pulse in my head and ears every day (more like a painless throbbing). Lately I have been feeling kind of run-down and not myself but that could just be from all of the dr appointments, dealing with a recent loss and work stress but I don't know. Sometimes I feel like I am being paranoid or over-exaggerating or being a hypochondriac.
I feel that I can manage these symptoms. Maybe not live as full of a life but I have been managing these symptoms for years now and I can continue on managing them as long as they don't get any worse.
I just don't know if my life will be dramatically effected after surgery and I don't know if it is worth the risk, but I also don't want to risk missing out on the opportunity to feel like a "normal" person. How do I know what "normal" is?
Will there be a soft spot after surgery? Will it be there forever? Will I be able to ride roller coasters or do any other type of intense activities? How do I know I have the right doctor? I feel pretty confident with him but what do I know?
So...is the surgery worth taking the risks? (If it helps, I am 29 years old in Richmond, VA)
Sorry to run off at the mouth, I just don't know how to discuss this with anyone in my life because they don't really understand what is happening...how could they?
I agree with Beeba. I had my decompression last year. The NS had left the decision to me and my hubby because every single doc. said I was borderline . One NS even said I was asymptomatic...which was silly . Anyway we went ahead and decided on surgery and we don't regret it. The surgeon said that I had more going on when he opened me up than the MRIs showed.
I second both of the girls. Many decisions to be made. Please do some research on the different idealogies behind the question of duraplasty so that you are comfortable with the choice you go with. No duraplasty means smaller risk of infection and vitualy no risk if CFS leak (which can in some cases require another surgery to fix). The down side can be that there still won’t be adequate space in the skull, preventing the improvement of CFS flow and the improvement of symptoms. I had the duraplasty and like Liz, my surgeon found other things to fix that did not show on the MRI and would have gone indetected. There were adhesions binding arteries, nerves, and brain stem together, and arachnoid webbing (needs to cleared away). There were also a couple of nerve tumors.
As far as the timing of surgery or even the decision of having surgery at all is another biggie. It seems to me that waiting till your off-season would be ideal, and a lot less anxiety inducing :)Did your surgeon warn against that? You should be clear and feel good about all of these things before moving forward, if you are not in an emergency situation. Sometimes a second opinion from another Chiari specialist can help with sorting through these things helping you resonate more with one v. another. I’m glad you posted. We are all here for you Nell!
Thank you all for your responses, I really appreciate it. Since I have time until I can even consider scheduling the surgery, I am currently considering a second opinion. The doctor had warned me of the possibility of needing a second surgery.I definitely need to do a little more digging before deciding anything for sure.
The surgeon seems to think that by just doing the boney decrompession it will cause less complications than doing the surgery with a duraplasty. He did tell me however that he will be doing some sort of MRI while the surgery is happening and with that he will be judging the CSF flow, he says that if he finds it to be compromised enough he will go ahead and do the duraplasty while he is already in there. I am concerned because I am reading a lot of posts and things all over the internet where people have gotten the surgery with duraplasty and have had CSF leaks and the doctors have had to go back in or place shunts in the body, I don't know if this is the norm but it seems to be pretty common. How do the doctors go about fixing the CSF leaks? Is it an incision in the same place?
Also (I know this sounds crazy but...) I am scared about getting a second opinion because I do not want to upset the person who is going to be cutting my head open. I trust my doctor, he really seems to know what he is talking about but after doing the research my faith is shaken and I feel very unsure about the whole thing.
Not to mention that this whole thing seems kind of rushed, I mean I only found out I had CM between 2 and 3 months ago. I am really fighting just saying "forget it" and waiting until my symptoms become worse and I am forced to get the surgery, but I really don't want it to come to that.
Most surgeons are understanding about seeking a second opinion. It's a major decision in your life! Go ahead and seek one out!
My surgeon placed a dural patch and I had no issues. It is riskier but I've heard of many people have to have a second surgery when the dura wasn't opened due to inadequate decompression. I would keep researching because it's possible that by using ultrasound to decide the success rates could be higher on not opening the dura.
Will there be a soft spot after surgery? There really isn't a soft spot. It's more that they are increasing the opening that is too small to a more normal size.
Will I be able to ride roller coasters or do any other type of intense activities? There seems to be debate on the roller coaster issue. My doctor told me that he does not recommend it. I personally wouldn't risk it myself but other members on here were told roller coasters were ok and they ride them. As for other activities my doctor said no restrictions as long as I feel comfortable. I do running, kickboxing, jumping jacks, and some weight lifting without issue. I do not feel comfortable lifting anything heavy overhead, it makes my neck muscles spasm so I don't to that. I have a friend who is post-decompression who lifts heavy overhead with no issues.
How do I know I have the right doctor? I feel pretty confident with him but what do I know? Intuition is important. It's good that you feel comfortable. Ask how many decompression he has done and what his success rates are like.
You don’t even need to tell your surgeon that your seeking a second opinion. If you decide to with the second surgeon, you don’t need to tell the first one- like Beeba said just don’t call back.
Did you become symptomatic after either a car accident or trauma to your head? If so, I would look into Atlas Orthongonal adjustment. You can view it on the internet. There is a doctor in Newport News (Renata Kowal). It is a very non-invasive adjustment with a machine using a stylus behind your ear. If your c1 and c2 are out of alignment, the csf can be blocked. In my case, my one shoulder was lower than the other. Also, when laying down my one leg appears shorter. After adjustment my issues were gone and shoulders and legs the same.
i just had the surgery 7 weeks ago . the first few days were fine and about 2 weeks of hell now im ok . everyday i do more and more . i felt the same way you did but the 2 weeks before my surgery i suddenly got worse . i couldn't bend over and i was so worried i would pass out . my balance was horrible . i had instant relief . i was not on any meds before the surgery so i felt like i wasn't bad enough because other people i talked to seemed so much worse than me
Most surgeons are understanding about seeking a second opinion. It's a major decision in your life! Go ahead and seek one out!
My surgeon placed a dural patch and I had no issues. It is riskier but I've heard of many people have to have a second surgery when the dura wasn't opened due to inadequate decompression. I would keep researching because it's possible that by using ultrasound to decide the success rates could be higher on not opening the dura.
Will there be a soft spot after surgery? There really isn't a soft spot. It's more that they are increasing the opening that is too small to a more normal size.
Will I be able to ride roller coasters or do any other type of intense activities? There seems to be debate on the roller coaster issue. My doctor told me that he does not recommend it. I personally wouldn't risk it myself but other members on here were told roller coasters were ok and they ride them. As for other activities my doctor said no restrictions as long as I feel comfortable. I do running, kickboxing, jumping jacks, and some weight lifting without issue. I do not feel comfortable lifting anything heavy overhead, it makes my neck muscles spasm so I don't to that. I have a friend who is post-decompression who lifts heavy overhead with no issues.
How do I know I have the right doctor? I feel pretty confident with him but what do I know? Intuition is important. It's good that you feel comfortable. Ask how many decompression he has done and what his success rates are like.
Thank you Beeba, the "boo hoo" comment really made me chuckle and realize that I am probably just being overly cautious. I am going to try to seek out a second opinion and look into how to get tested for EDS...better safe than sorry right?
Beeba said:
I wish I could just tell you the right answer. I certainly question tears. I have not had one but with the conditions that are being related more and more I certainly agree with your hesitation. Can you request being tested for ehlers dahnlos. If that test comes back 100% negative I would think your risk of tear as being very minimal but if it comes back positive it will give you more facts to consider before having surgery.
As for your surgeons feelings - oh boo hoo!! I don't know a surgeon out there that would let someone operate on their family member without a second opinion or consult. And if yours has such a fragile ego that he wouldn't encourage it then bye bye anyway. He really never even has to know. If he has repeated failures if his dural patches that may say something about his technique.
Please know you can always assume you don't have eds but the only sure way to rule it out would be to test for it. If my daughter has chiari - she does not show a single sign of eds - heck she can barely touch her knees let alone the floor but knowing what I know and what I have observed I would have her tested regardless because if you go in for this make sure you get the best outcome possible.
Nell said:
Beeba,
The surgeon seems to think that by just doing the boney decrompession it will cause less complications than doing the surgery with a duraplasty. He did tell me however that he will be doing some sort of MRI while the surgery is happening and with that he will be judging the CSF flow, he says that if he finds it to be compromised enough he will go ahead and do the duraplasty while he is already in there. I am concerned because I am reading a lot of posts and things all over the internet where people have gotten the surgery with duraplasty and have had CSF leaks and the doctors have had to go back in or place shunts in the body, I don't know if this is the norm but it seems to be pretty common. How do the doctors go about fixing the CSF leaks? Is it an incision in the same place?
Also (I know this sounds crazy but...) I am scared about getting a second opinion because I do not want to upset the person who is going to be cutting my head open. I trust my doctor, he really seems to know what he is talking about but after doing the research my faith is shaken and I feel very unsure about the whole thing.
Not to mention that this whole thing seems kind of rushed, I mean I only found out I had CM between 2 and 3 months ago. I am really fighting just saying "forget it" and waiting until my symptoms become worse and I am forced to get the surgery, but I really don't want it to come to that.
Thanks for the info Anglyn, I am definitely going to research the in-surgery ultrasound more before I come to a decision. As for the rest of the info, I really appreciate it. It is good to know that I can return to a normal (actually improved is a better term) after the surgery and of course a reasonable healing period.
Anglyn said:
Most surgeons are understanding about seeking a second opinion. It's a major decision in your life! Go ahead and seek one out!
My surgeon placed a dural patch and I had no issues. It is riskier but I've heard of many people have to have a second surgery when the dura wasn't opened due to inadequate decompression. I would keep researching because it's possible that by using ultrasound to decide the success rates could be higher on not opening the dura.
Will there be a soft spot after surgery? There really isn't a soft spot. It's more that they are increasing the opening that is too small to a more normal size.
Will I be able to ride roller coasters or do any other type of intense activities? There seems to be debate on the roller coaster issue. My doctor told me that he does not recommend it. I personally wouldn't risk it myself but other members on here were told roller coasters were ok and they ride them. As for other activities my doctor said no restrictions as long as I feel comfortable. I do running, kickboxing, jumping jacks, and some weight lifting without issue. I do not feel comfortable lifting anything heavy overhead, it makes my neck muscles spasm so I don't to that. I have a friend who is post-decompression who lifts heavy overhead with no issues.
How do I know I have the right doctor? I feel pretty confident with him but what do I know? Intuition is important. It's good that you feel comfortable. Ask how many decompression he has done and what his success rates are like.
What a relief to hear that someone else is having a similar experience to me. I mean, there are days now when it is really bad and my boyfriend has to all but carry me to the bathroom so I can get sit in there and get my vertigo, light sensitivity, head pain and weakness in check so I can get ready for work but most days it is just a constant dull pain that is aggravated by anything that either increases my blood pressure or somehow changes the pressure in my head.
I wish you all the best in your recovery. Thank you for posting!
amy said:
i just had the surgery 7 weeks ago . the first few days were fine and about 2 weeks of hell now im ok . everyday i do more and more . i felt the same way you did but the 2 weeks before my surgery i suddenly got worse . i couldn't bend over and i was so worried i would pass out . my balance was horrible . i had instant relief . i was not on any meds before the surgery so i felt like i wasn't bad enough because other people i talked to seemed so much worse than me
Thanks JC, It seems that getting a second opinion really is a common occurrence. I need to stop being such a worry-wort.
jcdemar said:
You don't even need to tell your surgeon that your seeking a second opinion. If you decide to with the second surgeon, you don't need to tell the first one- like Beeba said just don't call back. :)
There was no accident or head trauma, these symptoms have been present for years and I always thought it was migraines and/or headaches cause by an un-diagnosed anuerism (due to strong family history). I will look up that adjustment while doing my research though because you have piqued my curiosity. I am glad that you found a successful, non-surgical, treatment for the issues you were having.
Karen in Toledo said:
Did you become symptomatic after either a car accident or trauma to your head? If so, I would look into Atlas Orthongonal adjustment. You can view it on the internet. There is a doctor in Newport News (Renata Kowal). It is a very non-invasive adjustment with a machine using a stylus behind your ear. If your c1 and c2 are out of alignment, the csf can be blocked. In my case, my one shoulder was lower than the other. Also, when laying down my one leg appears shorter. After adjustment my issues were gone and shoulders and legs the same.
