I had the same dilemma- wasnt sure if I should do the surgery after all the horror stories I’ve read. I’m glad I did because the doctor said I had adhesions on my brain stem that could have caused paralysis or even death. I had my surgery mon here it is fri and I’m still in quite a bit if pain. I’m worried about my daughter more than myself bc her symptoms have started a lot younger than mine. Almost daily she has headaches, leg pain, gagging. I feel terrible 
Thank you for posting… I am waiting on a date for surgery & it’s been delayed due to no beds… Longer they leave it the more unsure I’ve become… But it’s good to hear your story xx
Hi Helen, this is fantastic, it gives hope to those of us who are contemplating surgery to know that not only are you recovering well but that their is a marked difference in the the pre and post op for you.
Regards
Teri
my surgery is in the morning and i an scared to dealth, but i hope my surgery and recovery is as good as yours?
Wishing you lots of luck desperatemom. Thinking of you.
I wish you the best of luck, desperatemom.
Chiari surgery is always daunting. I was dreading it for months, but by the morning of my surgery, I was actually excited and happy for a change - whatever it could be.
Just stay positive, and when you have a set-back, keep your chin up. It's hard, but it's worth it.
We're all here for you!
So glad you’re doing well,that’s exciting.I’m 4 months out and doing well now,I had a set back after 2 months.Things had felt better but I started to have my old symptoms again,if you have that to happen don’t be discouraged those symptoms hung on a little while,they have subsided my Dr. Says it will take a year to know how things will be.Happy for you.
thanks i needed to hear a good recovery story. i go for surgery in 2 weeks and i am terrified!
I am 1 week post op. I couldn’t have had better treatment and care. I’m doing fabulous! I am off all pain meds (for the most part) and am doing well. My neck is still very stiff and sore but I’m so blessed. I am having minor headaches, but I’m assuming that is to the muscle fatigue and spasms. My staples are driving me crazy but if that’s all I have to complain about then I’m doing great. I had known about my surgery for 3 weeks and the anticipation was horrible. I wasn’t nervous per say, I just prayed a lot. I have an amazing husband, and the hardest part was letting go of his hand. Next thing I know I was waking up. I spent 24 hrs in the icu and 3 more days in the hospital. I didn’t respond well to the anesthesia which prolonged my stay. I am so glad I did the surgery and pray that everyone else who is having it experiences the same results I have. I no longer have numbness and tingling in my arms and legs, or severe headaches/dizziness. I have made the mistake of bending over and picking something up, but my brain reminded me real quick not to do that. I had a headache and slight dizziness from that but recovered after resting. I hope all goes well and pray for you and your family. It is worth it!
I was just sitting here thinking, when my surgery was coming up and I was terrified, all I wanted was to head a reassuring stories and someone told me that you’re not going to find many success stories on a support site. Well, as you can see, there are success stories and this surgery works. Everybody experiences different results and different symptoms, but there are those of us who are doing great. My 5 year is so excited to have a fun mommy now. Stay strong and Pray!
Thank you Rachel for sharing your positive experience~
So true about all the negative comments! I have yet to schedule my decompression waiting on a second appt. back
home in New England. Praying that I can make it until June!
Thanks again!
Rachel said:
I was just sitting here thinking, when my surgery was coming up and I was terrified, all I wanted was to head a reassuring stories and someone told me that you're not going to find many success stories on a support site. Well, as you can see, there are success stories and this surgery works. Everybody experiences different results and different symptoms, but there are those of us who are doing great. My 5 year is so excited to have a fun mommy now. Stay strong and Pray!
Hi Helen~
Again, thanks for sharing your recovery. It's wonderful to hear a 'good' recovery story~
Could you favor us with more information on what your list of symptoms where and how long you had them?
And who was your Doctor, his technique and where you had the surgery?
Thanks!
Now that's a story I love to read....one with a happy ending! I can only imagine what it feels like to have so many symptoms and so much pain, then realize that they are gone! I've got tears of joy for you! It sounds like you are making wonderful progress! It's stories like this that make us newbies have hope! Keep us posted as the weeks go by!
SuzyQ - Sure I can share some additional info with you.
It's hard to say how long I had my symptoms. Since I was 8 years old I suffered from migraines, had blood tests, xrays, a bunch of tests but that was 20years ago so no MRI. Migraines ran in the family so I just wrote it off. After my 2nd child was born in Nov 2008 I started to notice that my headaches had changed, more pressure and after coughing, sneezing, getting up too fast - you know the rest! I finally went to my PCP in spring 2010 who wrote it off as stress, 2 young children, full time job, and at the time my husband and I were both facing being laid off from work due to company closure. So again I just ignored it and carried on. Gradually the pains got worse to the point I had to lie down and OTC meds weren't touching the pain. It was interfering with my life - I couldn't be silly with my kids, laughing, running, jumping..it all hurt my head. So I went to a different PCP (I had moved towns) he told me I was abusing OTC painkillers but I told him how ridiculous he was being and he sent me for MRI of the brain. The MRI showed Chiari Malformation - he didn't have experience with that so told me to google it. He referred me to NL. NL sent me for MRI of CSpine, and also MRA & MRV of the brain (I mentioned my grandmother died young after a brain hemorrhage) - these tests showed that one of the main vessels to the brain appeared small. So NL sent me for CT Scan and referred to NS.
I was initially told it was my decision whether or not to proceed with surgery, that was March last year. During the summer my symptoms got worse and included problems with my memory, slurred speech, not being able to choose the right word, trouble concentrating, numbness/weakness in arms and legs. I went back to NS in Nov and he strongly advised surgery. I took a couple of weeks to think about it and finally decided to go ahead.
My NS was Dr D'Ambrosio of Neurosurgeons of New Jersey, he is affiliated with Columbia University in NY and does surgery there as well as at the Valley Hospital in Ridgewood NJ. The first time I met him I was very comfortable with the fact that one day he may cut open my head! He was extremely knowledgeable and although young (I would guess mid to late 30's) had successfully completed many chiari decompressions. I asked him for a number and he responded with 100's if he included his residency. He had no horror stories, all were successful - that was good enough for me. He did a typical decompression, removing part of the skull, a C1 laminectomy, a partial laminectomy of C2, he opened the dura and patched with my own tissue. I am very happy with the results. Now 4 weeks, 2 days post op and I'm not even taking tylenol.
Sorry for the essay - hopefully I gave you plenty of information. Feel free to contact me with any questions.
Thank you so much for details of your journey!
I apologize for taking so long to get back to you. I have to limit my time on the computer to no more than 15 minutes every hour...if I don't, I pay for it dearly in neck and head pain.
Luckily, I still have good days and bad days. Well, more like half a good day! My symptoms are slowly getting worse. 4 weeks ago I had no headaches...now I have very uncomfortable pressure headaches that make me feel like my eyes are being pushed out through their sockets. Worse in the evening and at night. They are not made worse by coughing, etc...yet. I have a difficult time with raising my arms over my head, finding out that this is also a pain trigger. Nausea can come on at any time and last minutes to hours. Same with dizziness.
My NS has also left the decision to have surgery up to me. I am bi-coastal, which is a complicating factor. I have an appt. in June for a consultation with Dr. Joe Phillips in NH. He comes highly recommended and is a Chiari specialist. I hope I can make it to that appointment! Though I do like my NS here in Florida. His well versed in decompression surgeries and was trained by a pediatric neurosurgeon that specialized in CM decompression.
Thanks again for the info and here's to your continued remarkable recovery!
Sue
helsb83 said:
SuzyQ - Sure I can share some additional info with you.
It's hard to say how long I had my symptoms. Since I was 8 years old I suffered from migraines, had blood tests, xrays, a bunch of tests but that was 20years ago so no MRI. Migraines ran in the family so I just wrote it off. After my 2nd child was born in Nov 2008 I started to notice that my headaches had changed, more pressure and after coughing, sneezing, getting up too fast - you know the rest! I finally went to my PCP in spring 2010 who wrote it off as stress, 2 young children, full time job, and at the time my husband and I were both facing being laid off from work due to company closure. So again I just ignored it and carried on. Gradually the pains got worse to the point I had to lie down and OTC meds weren't touching the pain. It was interfering with my life - I couldn't be silly with my kids, laughing, running, jumping..it all hurt my head. So I went to a different PCP (I had moved towns) he told me I was abusing OTC painkillers but I told him how ridiculous he was being and he sent me for MRI of the brain. The MRI showed Chiari Malformation - he didn't have experience with that so told me to google it. He referred me to NL. NL sent me for MRI of CSpine, and also MRA & MRV of the brain (I mentioned my grandmother died young after a brain hemorrhage) - these tests showed that one of the main vessels to the brain appeared small. So NL sent me for CT Scan and referred to NS.
I was initially told it was my decision whether or not to proceed with surgery, that was March last year. During the summer my symptoms got worse and included problems with my memory, slurred speech, not being able to choose the right word, trouble concentrating, numbness/weakness in arms and legs. I went back to NS in Nov and he strongly advised surgery. I took a couple of weeks to think about it and finally decided to go ahead.
My NS was Dr D'Ambrosio of Neurosurgeons of New Jersey, he is affiliated with Columbia University in NY and does surgery there as well as at the Valley Hospital in Ridgewood NJ. The first time I met him I was very comfortable with the fact that one day he may cut open my head! He was extremely knowledgeable and although young (I would guess mid to late 30's) had successfully completed many chiari decompressions. I asked him for a number and he responded with 100's if he included his residency. He had no horror stories, all were successful - that was good enough for me. He did a typical decompression, removing part of the skull, a C1 laminectomy, a partial laminectomy of C2, he opened the dura and patched with my own tissue. I am very happy with the results. Now 4 weeks, 2 days post op and I'm not even taking tylenol.
Sorry for the essay - hopefully I gave you plenty of information. Feel free to contact me with any questions.