Friday night for the first time In a very very long time Chris & I had date night again!!!!a nice quite dinner and I made it thru fine!!! This afternoon we went to Mass it's been since October that I had to stop going to church, I could not go anymore because it would be to loud for me and the standing then sitting would trigger my dizziness & headaches so bad..but today I made it thru with no problem!!! it's been 9 weeks since surgery and it felt SO GOOD walking into church and making it thru the entire mass with no problems finally I was soooo Happy !!
I’m so happy for you! I’m almost three years post op and I’m still thankful for my neurosurgeon every single day. Basically I’m still excited every time I run, work a full week, help my husband shovel snow even! Before surgery I struggled to get through the work day and ended up going straight to bed every evening and all weekend.
When you spoke of Mass being to loud, may I ask if other noises bothered you? I am not decompressed. I find daily that noises at bothering me more and more to the point of startling me scared. Crazy…it may seem but it’s happening. Music can only be at a minimum because of this dreaded disease.
Yes Melissa,and FixerUpper it is all Chiari related…I had gotten to the point that the TV was so low at times that my husband could not even hear it, and he was sitting rite beside me…the smallest things were to loud… and if I had a headache I could not talk because the sound of my own voice felt like it echoed in my ears and made the headache worse. As understanding as all our family members are and especially our husbands who are always there for us, it is hard for them to understand,only if you go thru it you can know how bad it can get!!! I was at my very end when I had surgery only able to stand 10 yo 15 mins.because of the dizziness and headaches…hope you guys get this surgery soon, it will help with a lot of symptoms.
I am so glad you have gotten back into your old life again. Must be so wonderful to be able to enjoy the sounds around you, and sights, and not have pain.
May I ask if you had a syrinx along with your chiari? I am scheduled for a decompression at Georgetown and my husband, who is a nosy doctor, insists that I will not get much relief from surgery if I don't have a syrinx. I know this is not true...but I was just curious.
Thanks
Steph
kajagoogoo said:
I am so glad you have gotten back into your old life again. Must be so wonderful to be able to enjoy the sounds around you, and sights, and not have pain.
May I ask if you had a syrinx along with your chiari? I am scheduled for a decompression at Georgetown and my husband, who is a nosy doctor, insists that I will not get much relief from surgery if I don't have a syrinx. I know this is not true...but I was just curious what your experience was.
I have all the usual chiari symptoms, extreme photophobia, balance issues, pain upon looking up, blurry vision, speech issues, POTS, noise sensitivity, swallowing problems. I can actually feel the tiny bites of food going down as I swallow it, like in my T-Spine, it hurts. Did you ever have that?
I am also numb in my limbs and patchy areas of my face.
Thanks
Steph
I’m not the original poster but I did have surgery and did not have a syrinx and had a great outcome! 
About 1/2 of surgeons won't do surgery without syrinx (Including Rosanne Cashes . Patients with Chiari I can have symptoms with a large syrinx, small syrinx, or no syrinx. as you know and may, benefit from craniocervical decompression. One of the main reasons half of surgeons won't do surgery without syrinx is because of the 10% - 30% chance conditions will get worse following surgery
Small syrinxes are difficult to assess because they appear on MRI scans to be identical to the central spinal cord canal, a normal structure and may not even be seen. The central spinal canal, being normal, would not be the cause of your pain so decompression surgery won't help.
Small syrinxes may result for all kinds of reasons. Trauma, infection, or inflammation are common causes of a small syrinx forming and causing a small amount of injury to the spinal cord. The injury occurs over a short period of time. The pain pain originates from the injured spinal cord around the small syrinx and the injury that occurred to the spinal cord from the syrinx forming cannot be reversed by surgical treatment and actually may be made worse by it.
Anyway your hubby may be nosy, but there is actual reason for his concern..............
kajagoogoo said:
I am so glad you have gotten back into your old life again. Must be so wonderful to be able to enjoy the sounds around you, and sights, and not have pain.
May I ask if you had a syrinx along with your chiari? I am scheduled for a decompression at Georgetown and my husband, who is a nosy doctor, insists that I will not get much relief from surgery if I don't have a syrinx. I know this is not true...but I was just curious.
Thanks
Steph
The AANS recommendation concerning treatment:
If the malformation is defined as symptomatic, or is causing a syrinx, treatment is usually recommended.
http://www.aans.org/patient%20information/conditions%20and%20treatments/chiari%20malformation.aspx
That's correct. and its the definition of symptomatic that's difficult, especially with small and/or non defined syrinx. They have been attempting to come up with a set of parameters and norms since the 2013 conference. that factor symptoms, age, MRI results (they still don't have a set of cine MRI norms) syrinx, size etc. I doubt it will happen, but the 2005 recommendations don't specify treatment as any particular surgical intervention or for that surgery at all. Because Anomalies of the base of the skull and spine are seen in only 30% of Type 1, there is a great deal of consideration being given to other causes and treatments. Medicine by formula commonly referred to as "evidence based practice" is bad medicine for 20% of patients
Anglyn said:
The AANS recommendation concerning treatment:
If the malformation is defined as symptomatic, or is causing a syrinx, treatment is usually recommended.
http://www.aans.org/patient%20information/conditions%20and%20treatm...
As my neurosurgeon explained to me that disruption in the flow of spinal fluid that typically causes the patient to become symptomatic can lead to a syrinx if left untreated. Therefore if you choose not to have surgery then you should have regular MRIs to ensure a syrinx hasn’t developed. Once you develop a syrinx the risk of permanent nerve damage increases which adds to the risk of lingering post op symptoms.
Steph, I had second decompression and fusion 6 months ago and doing worlds better (The first decompression was probably done just fine but not successful because my CCi was not corrected). So now my pain is an avg of 2, that’s down from an 8 before surgery. I still have POTS, EDS pain (joint pain) swallowing trouble too ( I have a structure around t-4 level or so in esophagus)and cognitive issues, but I DONT CARE! the worst symptom for me was always pain and now it’s so low most of the time when I notice it I smile out of gratitude. Who are you seeing at Georgetown if you don’t mind? I agree with you that it’s very possible to have a successful decompression.
Jenn 
TJ1 said:
About 1/2 of surgeons won't do surgery without syrinx (Including Rosanne Cashes . Patients with Chiari I can have symptoms with a large syrinx, small syrinx, or no syrinx. as you know and may, benefit from craniocervical decompression. One of the main reasons half of surgeons won't do surgery without syrinx is because of the 10% - 30% chance conditions will get worse following surgery
Small syrinxes are difficult to assess because they appear on MRI scans to be identical to the central spinal cord canal, a normal structure and may not even be seen. The central spinal canal, being normal, would not be the cause of your pain so decompression surgery won't help.
Small syrinxes may result for all kinds of reasons. Trauma, infection, or inflammation are common causes of a small syrinx forming and causing a small amount of injury to the spinal cord. The injury occurs over a short period of time. The pain pain originates from the injured spinal cord around the small syrinx and the injury that occurred to the spinal cord from the syrinx forming cannot be reversed by surgical treatment and actually may be made worse by it.
Anyway your hubby may be nosy, but there is actual reason for his concern..............
kajagoogoo said:I am so glad you have gotten back into your old life again. Must be so wonderful to be able to enjoy the sounds around you, and sights, and not have pain.
May I ask if you had a syrinx along with your chiari? I am scheduled for a decompression at Georgetown and my husband, who is a nosy doctor, insists that I will not get much relief from surgery if I don't have a syrinx. I know this is not true...but I was just curious.
Thanks
Steph
No syrinx either
jcdemar said:
Steph, I had second decompression and fusion 6 months ago and doing worlds better (The first decompression was probably done just fine but not successful because my CCi was not corrected). So now my pain is an avg of 2, that's down from an 8 before surgery. I still have POTS, EDS pain (joint pain) swallowing trouble too ( I have a structure around t-4 level or so in esophagus)and cognitive issues, but I DONT CARE! the worst symptom for me was always pain and now it's so low most of the time when I notice it I smile out of gratitude. Who are you seeing at Georgetown if you don't mind? I agree with you that it's very possible to have a successful decompression.
Jenn :)
TJ1 said:About 1/2 of surgeons won't do surgery without syrinx (Including Rosanne Cashes . Patients with Chiari I can have symptoms with a large syrinx, small syrinx, or no syrinx. as you know and may, benefit from craniocervical decompression. One of the main reasons half of surgeons won't do surgery without syrinx is because of the 10% - 30% chance conditions will get worse following surgery
Small syrinxes are difficult to assess because they appear on MRI scans to be identical to the central spinal cord canal, a normal structure and may not even be seen. The central spinal canal, being normal, would not be the cause of your pain so decompression surgery won't help.
Small syrinxes may result for all kinds of reasons. Trauma, infection, or inflammation are common causes of a small syrinx forming and causing a small amount of injury to the spinal cord. The injury occurs over a short period of time. The pain pain originates from the injured spinal cord around the small syrinx and the injury that occurred to the spinal cord from the syrinx forming cannot be reversed by surgical treatment and actually may be made worse by it.
Anyway your hubby may be nosy, but there is actual reason for his concern..............
kajagoogoo said:I am so glad you have gotten back into your old life again. Must be so wonderful to be able to enjoy the sounds around you, and sights, and not have pain.
May I ask if you had a syrinx along with your chiari? I am scheduled for a decompression at Georgetown and my husband, who is a nosy doctor, insists that I will not get much relief from surgery if I don't have a syrinx. I know this is not true...but I was just curious.
Thanks
Steph
I think that looking at the statistics I can get a general opinion that most people see improvement, some stay the same and some get worse. I was one who got worse after #1…so I have looked into a lot of the variables with why get worse. The problem I have with the statistics is there is no basic platform for the measurability. First, there are several different surgeries that are a decompression. Boney only, boney plus laminectomy, duraplasty plus laminectomy, then there’s tonsil ectomy, all different. Second there is with syrinx or no syrinx. Forth is CCI or no CCI. Fifth is length of time a person is symptomatic. Sixth is surgeon skill and experience. A lot of the studies I have looked aren’t big enough to be considered conclusive. I know each NS has their own stats and their own criteria for what they consider operable, including severity of symptoms and if there is a syrinx involved. When I consider these factors it makes sense to me that the stats are tough to really hang my hat on. You may see something very different and that’s ok… My point is that you go in the direction that feels right to you and makes sense to you. If you go surgical take your time to know you are getting the NS that feels right, with all you know about yourself and your condition/s. If surgery is not for you just know your whole condition well. I think it’s also wise to turn every stone to rule out non Chiari conditions that are causing symptoms too. For me, not understanding that I had CCI caused me a painful detour and a second surgery.
Jenn
I have seen both Dr Henderson in DC and Dr Sandhu at Georgetown university. I have been a patient of Dr henderson's for over 2 years now. He says my CCI is too mild to warrant a fusion. I chose Dr Sandhu to perform my surgery because Dr Henderson's schedule has just become too impossible. I have been getting worse and worse....My cord is super tight and I am numb from waist down. He thinks I have had two little TIA's; I have white matter lesions in stroke specific areas. There were two days that were really scary days where I was having a lot of heaviness and squeezing feeling in my chest, speech problems, right side of body went numb and heavy, pupils were crazy dilated, and I had nystagmus. My chiari symptoms started up all at once in march 2013 and I have had daily headaches and numbness everyday since. A lot of the symptoms come and go...just never know what day will bring.
I am so very happy to hear that you have found relief from your decompression Jenn...gives me hope ;-)
Steph
jcdemar said:
I think that looking at the statistics I can get a general opinion that most people see improvement, some stay the same and some get worse. I was one who got worse after #1...so I have looked into a lot of the variables with why get worse. The problem I have with the statistics is there is no basic platform for the measurability. First, there are several different surgeries that are a decompression. Boney only, boney plus laminectomy, duraplasty plus laminectomy, then there's tonsil ectomy, all different. Second there is with syrinx or no syrinx. Forth is CCI or no CCI. Fifth is length of time a person is symptomatic. Sixth is surgeon skill and experience. A lot of the studies I have looked aren't big enough to be considered conclusive. I know each NS has their own stats and their own criteria for what they consider operable, including severity of symptoms and if there is a syrinx involved. When I consider these factors it makes sense to me that the stats are tough to really hang my hat on. You may see something very different and that's ok... My point is that you go in the direction that feels right to you and makes sense to you. If you go surgical take your time to know you are getting the NS that feels right, with all you know about yourself and your condition/s. If surgery is not for you just know your whole condition well. I think it's also wise to turn every stone to rule out non Chiari conditions that are causing symptoms too. For me, not understanding that I had CCI caused me a painful detour and a second surgery.
Jenn