I haven't been on here for awhile. I just saw Dr. Dan Heffez at the Chiari Center in Milwaukee, WI. I have been suffering from headaches everyday, neck pain, lightheadedness, etc. After seeing other doctors and not getting anywhere, and after putting this on a shelf for awhile, I decided to see a specialist. I was told that surgery would help my symptoms. He said my MRI showed a peanut shaped brain stem instead of a rounded shape one. The nerves are being pinched. Has anyone had surgery done by Dr. Heffez. Please let me know. Also, I am not sure if I should see another specialist in this for another opinion. I am scared if I go through with this I will be worse off?
Also, the herniation is at 7 mm.
Thank you Abby
Red, my experience with Heffez was mostly great. I think he did a great job with my brain. I had the duraplasty, laminectomy, tonsillectomy, and decompression. I too had a misshapen upper spinal cord from the compression. Post surgery it is perfectly round. While he was in my brain, he found arachnoid webbing, adhesions, and a few neuromas- all because of the Chiari. Post op my brain looked normal, no infections or leaks. My hospital stay was very pleasant. I was there for 5 days and the staff was terrific. I stayed in a hotel for 4 more days, saw Heffez for the post op and staple removal, then flew home. I had ups and downs for the first few months, for the first time in years I had days with no headache at all- it feels like a miracle when that happens!
I’m 8 months post op now and still have some symptoms. Around month 4 I got a pretty significant headache. I talked to heffez about it and he suggested I wear a cervical collar for a few weeks. I went out and got a tall collar and it helped a great deal- I still wear it. Before surgery Heffez had me wear a collar to rule out a neck instability (unfortunately the collar I bought was too short)I scored high in the Brighton test (do know how you did? if you are hypermobile?) this is significant because if a person has hyper-mobility (EDS) and an unstable neck, a perfectly good decompression may appear to “fail” because instability symptoms are the same as Chiari symptoms. People with neck instabilities need the fusion at the same time they get the decompression.
Heffez did the proper screening, i just didnt pick the right size collar for the trial period to show my neck problems. So I’m waiting to see another surgeon to help me with my neck.
I’m grateful for Heffez, I’m grateful my brain has been decompressed.
If you feel you might benefit in any way from another opinion you should go for it. It is a big surgery and a long recovery- you don’t want to be wondering “what if” after you have taken the plunge. I wish you all the luck in the world. If you have anymore Qs for me ill be happy to talk more. Good luck Red!
Jenn
Red, I just had a Chiari Decompression and Cervical Laminoplasty by Dr. Heffez and I can not be more happy. I have been suffering with headaches, neck pain, shoulder pain, arm pain, thoracic pain, leg pain, numbness and tingling, burning pain in left palm and trouble swallowing. I have been to numerous doctors over the past 4 years and no one could help. I had a cervical fusion in 09 which did nothing. I finally found Dr. Heffez and he got to the bottom of it. He found Chiari and a spinal canal which was to narrow. I had the surgery 9-23 at Columbia St. Mary’s where the Chiari Clinic is. I went in on Monday and came home Saturday. The rooms are private, the nurses were incredibly good. I highly recommend Dr. Heffez. I am feeling much better already. All my initial symptoms are gone, thank god. I have surgical pain, but I have had worse pain. You can contact me if you want and if would like I will give you my number and we can talk. I wish you the very best. Karen
Thank you so much Jenn for letting me know your experience. It does help me a lot. As far as my neck pain, Dr. Heffez thinks possibly a level 1 stenosis? I noticed you were in the hospital for five days, is that how long you expected to be there at first? Sorry, If you don't mind me asking.
jcdemar said:
Red, my experience with Heffez was mostly great. I think he did a great job with my brain. I had the duraplasty, laminectomy, tonsillectomy, and decompression. I too had a misshapen upper spinal cord from the compression. Post surgery it is perfectly round. While he was in my brain, he found arachnoid webbing, adhesions, and a few neuromas- all because of the Chiari. Post op my brain looked normal, no infections or leaks. My hospital stay was very pleasant. I was there for 5 days and the staff was terrific. I stayed in a hotel for 4 more days, saw Heffez for the post op and staple removal, then flew home. I had ups and downs for the first few months, for the first time in years I had days with no headache at all- it feels like a miracle when that happens!
I'm 8 months post op now and still have some symptoms. Around month 4 I got a pretty significant headache. I talked to heffez about it and he suggested I wear a cervical collar for a few weeks. I went out and got a tall collar and it helped a great deal- I still wear it. Before surgery Heffez had me wear a collar to rule out a neck instability (unfortunately the collar I bought was too short)I scored high in the Brighton test (do know how you did? if you are hypermobile?) this is significant because if a person has hyper-mobility (EDS) and an unstable neck, a perfectly good decompression may appear to "fail" because instability symptoms are the same as Chiari symptoms. People with neck instabilities need the fusion at the same time they get the decompression.
Heffez did the proper screening, i just didnt pick the right size collar for the trial period to show my neck problems. So I'm waiting to see another surgeon to help me with my neck.
I'm grateful for Heffez, I'm grateful my brain has been decompressed.
If you feel you might benefit in any way from another opinion you should go for it. It is a big surgery and a long recovery- you don't want to be wondering "what if" after you have taken the plunge. I wish you all the luck in the world. If you have anymore Qs for me ill be happy to talk more. Good luck Red!
Jenn
Thank you kms for letting me know. It sounds like you have had relief all ready.
kms said:
Red, I just had a Chiari Decompression and Cervical Laminoplasty by Dr. Heffez and I can not be more happy. I have been suffering with headaches, neck pain, shoulder pain, arm pain, thoracic pain, leg pain, numbness and tingling, burning pain in left palm and trouble swallowing. I have been to numerous doctors over the past 4 years and no one could help. I had a cervical fusion in 09 which did nothing. I finally found Dr. Heffez and he got to the bottom of it. He found Chiari and a spinal canal which was to narrow. I had the surgery 9-23 at Columbia St. Mary's where the Chiari Clinic is. I went in on Monday and came home Saturday. The rooms are private, the nurses were incredibly good. I highly recommend Dr. Heffez. I am feeling much better already. All my initial symptoms are gone, thank god. I have surgical pain, but I have had worse pain. You can contact me if you want and if would like I will give you my number and we can talk. I wish you the very best. Karen
Red, I was told that 5 days is normal for Heffez’s surgery. 2 days in ICU and 3 days on the regular floor. 
Hi Red, I have gotten relief from all my symptoms, which is amazing. I did not expect that, but I prayed that I would and had a lot of people praying for that as well. It sounds like if you have surgery, you may have a laminoplasty which essentially opens up the spinal canal so things don't irritate it. One thing I like about Dr. Heffez is that he is the Director of the Chiari Clinic. He asked me to be apart of a study on Chiari he is doing. I like that about him because he has written other papers and has done other studies because he is truly interested in finding out everything he can. A doctor who continues to research his specialty is definitely one I would choose. From what I understand you spend 1-2 nights in ICU and 3-4 in hospital room. I live in Muskego which is only about 1/2 hour from Dr. Heffez. Whatever you choose, I will pray that you get relief. This is an awesome group, I am glad I found it, as I am sure you are. If I can help in any way, please let me know. Karen
Red said:
Thank you kms for letting me know. It sounds like you have had relief all ready.
kms said:Red, I just had a Chiari Decompression and Cervical Laminoplasty by Dr. Heffez and I can not be more happy. I have been suffering with headaches, neck pain, shoulder pain, arm pain, thoracic pain, leg pain, numbness and tingling, burning pain in left palm and trouble swallowing. I have been to numerous doctors over the past 4 years and no one could help. I had a cervical fusion in 09 which did nothing. I finally found Dr. Heffez and he got to the bottom of it. He found Chiari and a spinal canal which was to narrow. I had the surgery 9-23 at Columbia St. Mary's where the Chiari Clinic is. I went in on Monday and came home Saturday. The rooms are private, the nurses were incredibly good. I highly recommend Dr. Heffez. I am feeling much better already. All my initial symptoms are gone, thank god. I have surgical pain, but I have had worse pain. You can contact me if you want and if would like I will give you my number and we can talk. I wish you the very best. Karen
I am not sure what he said after I heard the word surgery. I shut off after that. I didn't think of all my questions until after the appointment with him. I am trying to get a hold of the office to get some feedback about the surgery. In the meantime, I am trying to get more feedback from others who have had surgery. Thank you again.
kms said:
Hi Red, I have gotten relief from all my symptoms, which is amazing. I did not expect that, but I prayed that I would and had a lot of people praying for that as well. It sounds like if you have surgery, you may have a laminoplasty which essentially opens up the spinal canal so things don't irritate it. One thing I like about Dr. Heffez is that he is the Director of the Chiari Clinic. He asked me to be apart of a study on Chiari he is doing. I like that about him because he has written other papers and has done other studies because he is truly interested in finding out everything he can. A doctor who continues to research his specialty is definitely one I would choose. From what I understand you spend 1-2 nights in ICU and 3-4 in hospital room. I live in Muskego which is only about 1/2 hour from Dr. Heffez. Whatever you choose, I will pray that you get relief. This is an awesome group, I am glad I found it, as I am sure you are. If I can help in any way, please let me know. Karen
Red said:Thank you kms for letting me know. It sounds like you have had relief all ready.
kms said:Red, I just had a Chiari Decompression and Cervical Laminoplasty by Dr. Heffez and I can not be more happy. I have been suffering with headaches, neck pain, shoulder pain, arm pain, thoracic pain, leg pain, numbness and tingling, burning pain in left palm and trouble swallowing. I have been to numerous doctors over the past 4 years and no one could help. I had a cervical fusion in 09 which did nothing. I finally found Dr. Heffez and he got to the bottom of it. He found Chiari and a spinal canal which was to narrow. I had the surgery 9-23 at Columbia St. Mary's where the Chiari Clinic is. I went in on Monday and came home Saturday. The rooms are private, the nurses were incredibly good. I highly recommend Dr. Heffez. I am feeling much better already. All my initial symptoms are gone, thank god. I have surgical pain, but I have had worse pain. You can contact me if you want and if would like I will give you my number and we can talk. I wish you the very best. Karen
Also, if you don't mind could you let me know when your surgery was scheduled after your initial appointment? I didn't say yes to the surgery at my appointment. Did you talk to the doctor again with more questions? Is it easy to get a hold of the office after your appointment?
Red said:
I am not sure what he said after I heard the word surgery. I shut off after that. I didn't think of all my questions until after the appointment with him. I am trying to get a hold of the office to get some feedback about the surgery. In the meantime, I am trying to get more feedback from others who have had surgery. Thank you again.
kms said:Hi Red, I have gotten relief from all my symptoms, which is amazing. I did not expect that, but I prayed that I would and had a lot of people praying for that as well. It sounds like if you have surgery, you may have a laminoplasty which essentially opens up the spinal canal so things don't irritate it. One thing I like about Dr. Heffez is that he is the Director of the Chiari Clinic. He asked me to be apart of a study on Chiari he is doing. I like that about him because he has written other papers and has done other studies because he is truly interested in finding out everything he can. A doctor who continues to research his specialty is definitely one I would choose. From what I understand you spend 1-2 nights in ICU and 3-4 in hospital room. I live in Muskego which is only about 1/2 hour from Dr. Heffez. Whatever you choose, I will pray that you get relief. This is an awesome group, I am glad I found it, as I am sure you are. If I can help in any way, please let me know. Karen
Red said:Thank you kms for letting me know. It sounds like you have had relief all ready.
kms said:Red, I just had a Chiari Decompression and Cervical Laminoplasty by Dr. Heffez and I can not be more happy. I have been suffering with headaches, neck pain, shoulder pain, arm pain, thoracic pain, leg pain, numbness and tingling, burning pain in left palm and trouble swallowing. I have been to numerous doctors over the past 4 years and no one could help. I had a cervical fusion in 09 which did nothing. I finally found Dr. Heffez and he got to the bottom of it. He found Chiari and a spinal canal which was to narrow. I had the surgery 9-23 at Columbia St. Mary's where the Chiari Clinic is. I went in on Monday and came home Saturday. The rooms are private, the nurses were incredibly good. I highly recommend Dr. Heffez. I am feeling much better already. All my initial symptoms are gone, thank god. I have surgical pain, but I have had worse pain. You can contact me if you want and if would like I will give you my number and we can talk. I wish you the very best. Karen
Hi Red, I saw him mid December. I did a two week trial with a cervical collar, then scheduled surgery for feb 11. I needed some time to get coverage at work and cheaper plane tickets. I didn’t have a need to call him before the surgery.
After surgery his nurse was easy to contact.
Jenn