I have already had Decompression Surgery. (Oct 26, 2011) But I have more and worse symptoms now than before my surgery.
What I am hoping to get from him is a plan to improve my quality of life. All I am getting from my Dr's here is "take this pill when you get a headache", "I did your surgery- so you should be fine now" "Th radiologist didn't see anything on your MRI, no I didn't look at myself- because even though I am a neurologist, I don't know anything about Chiari"
Has anyone seen Dr. Oro after they have had their decompression? and was he helpful? My sister is an RN and lives in the same town as his office so she can help me with accommodations all I need to worry about is travel which is no big deal.
I totally think it's worth seeing Dr. Oro. Many Members highly recommend him. I also have major post op symptoms & have gotten the same replies from my Dr's. I had to have my Cervical Spine rebuilt at the same time as my decompression. I have not only headache & vision issues but debilitating Chronic Pain. It has been explained to me that since my surgery was 16 hours long, it stretched my Cranial Nerves for too long and I will never be able to live without pain. I have had Occipitial Major Nerve Blocks that did help with my headaches, especially the Chiari Pressure Headaches. I am very fortunate to have an excellent PCP & Spine Pain Mgmt Specialists. I have had many Nerve Blocks & Spine injections and even lived through Ablation on C3-C5 nerves. I have also had Microvascular Decompression Surgery for Geniculate Neuralgia. That is how my CM was diagnosed. So please know not only I but many Members understand. I will jump at a chance to find new treatments or additional view points from Specialists. I have been holding out hope for the new pain medications that affect the Glial Cells. Only they were supposed to be released two years ago & I am still waiting. Since you are in the Medical field I know you are an educated Health Advocate for yourself. That is very important. I was also in the Health Industry when I became ill & had to stop working because of my post op symptoms. You go to Dr. Oro and have a list of questions ready & don't accept the general answer..I am a NS & if you haven't had decompression surgery or need additional surgery I can help you..if not you need to see a Neurologist for follow up care. Maybe you should also consider seeing a Psychiologist or a really great Diagnostician. All of our body systems are affected with CM & Cranial Nerves get compressed when our Brain is smashed in a too small skull. My NS is Dr. Peter Jannetta, he recently retired & is just doing research. He & I have become friends over the years & he has done 100's of studies for the NIH. It amazes me at the impact compressed cranial nerves has on every bodily system. Especially if your Vagus Nerve is compressed. Please let us know how your appt with Dr. Oro goes. I love reading your posts. You have such a great sense of humor & with Chiari that is definitely needed. If Dr. Oro gives you additional information please share it with the Group. We all need hope that someone somewhere has answers to post surgical issues.
Kenny, I travelled from Tx to Co for Dr Oro to do my decompression Sept’11. I had a smooth recovery and now feel 100%.
I do know he will suggest the Paleo diet as a way to minimize your symptoms. He is wonderful caring Dr. You send your films to his office then they will set up appts.
I know two patients locally who went to Dr Oro and he corrected their decompressions that were done here in TX. I have another friend who was decompressed here in Tx and went to him. He was unable to help eliviate her symptoms.
It can’t hurt trying to see him especially if you have someone close to stay with while you are there.
Thanks Tracy I am NOT in medical field- I think you misunderstood what one neurologist told me about even though he was a neurologist he didn't know about Chiari as coming from me- definitely not! I have a Doctorate but its in Theology not Medicine :) I'm actually a Pastor!
I am going to try and call his office tomorrow and see if he does this sort of thing. It cannot hurt to try!
TracyZ said:
Kenny,
I totally think it's worth seeing Dr. Oro. Many Members highly recommend him. I also have major post op symptoms & have gotten the same replies from my Dr's. I had to have my Cervical Spine rebuilt at the same time as my decompression. I have not only headache & vision issues but debilitating Chronic Pain. It has been explained to me that since my surgery was 16 hours long, it stretched my Cranial Nerves for too long and I will never be able to live without pain. I have had Occipitial Major Nerve Blocks that did help with my headaches, especially the Chiari Pressure Headaches. I am very fortunate to have an excellent PCP & Spine Pain Mgmt Specialists. I have had many Nerve Blocks & Spine injections and even lived through Ablation on C3-C5 nerves. I have also had Microvascular Decompression Surgery for Geniculate Neuralgia. That is how my CM was diagnosed. So please know not only I but many Members understand. I will jump at a chance to find new treatments or additional view points from Specialists. I have been holding out hope for the new pain medications that affect the Glial Cells. Only they were supposed to be released two years ago & I am still waiting. Since you are in the Medical field I know you are an educated Health Advocate for yourself. That is very important. I was also in the Health Industry when I became ill & had to stop working because of my post op symptoms. You go to Dr. Oro and have a list of questions ready & don't accept the general answer..I am a NS & if you haven't had decompression surgery or need additional surgery I can help you..if not you need to see a Neurologist for follow up care. Maybe you should also consider seeing a Psychiologist or a really great Diagnostician. All of our body systems are affected with CM & Cranial Nerves get compressed when our Brain is smashed in a too small skull. My NS is Dr. Peter Jannetta, he recently retired & is just doing research. He & I have become friends over the years & he has done 100's of studies for the NIH. It amazes me at the impact compressed cranial nerves has on every bodily system. Especially if your Vagus Nerve is compressed. Please let us know how your appt with Dr. Oro goes. I love reading your posts. You have such a great sense of humor & with Chiari that is definitely needed. If Dr. Oro gives you additional information please share it with the Group. We all need hope that someone somewhere has answers to post surgical issues.
Oh boy, what a shame....almost a yr post op and dealing with this , so sorry to hear this....Your Dr.'s response to you is so familiar to me!! "Lori, everything looks good!"....
It has been a little over 4 yrs since my decomp......and though some Sx's have gotten lots better...others have arisen and some have gotten worse...though my MRI's .."LOOK GOOD"..so the docs tell me.
So, I completely understand your frustation. I have only heard great things about Dr. Oro. IMHO I would go see him ASAP.
I have forwarded all my medical info to dr Oro and i am looking forward to seeing him soon. I also know of two people who have had surg. one about a year ago and one about 8 years ago both of them are doing great 100 % improvement. I have seen multiple drs and most seem to think 4mm herniation, restricted flow, and crowding of the tonsils is not so bad. I feel horrible as well, bad headaches, pressure and burning to my neck and this incredible pain in my arms. I hear Dr. Oro is wonderful and his staff is very caring,
I am so happy you aren't a Neurologist....We don't have much luck with them. I actually made a post op appt. with one I had seen numerous times & he had his nurse call me back & cancel the appt. because he knew nothing about Chiari. At least he was honest & didn't waste my time. I really hope Dr. Oro can help you & us all.
I am seeing Dr. Oro next week. I'm traveling from TX to CO. I have a 5mm herniation and a lifetime of symptoms. I will post about my visit. I'm anxious, excited and afraid all at the same time. I hear he's the best I recommend you call his office and speak with Chuck. He is the care coordinator and can tell you what to do.