Help Me find a New Surgeon Please.
I am one year Post Op.. After my surgery the only apt that was scheduled was my 3 month. I wasn'tadvised of any other protocol or set up another apt.. I just received a letter stating I had a serious Chronic Brain Disease and due to my lack of care in this matter they would no longer be able to see me?
I live 4 hrs from the Office and due to having to drive myself I have to spend the night .I cant drive 8hrs by myself roundtrip and costs over $250.00! I had an apt last month. No one bothered to tell me that the Highway they're on was under heavy road construction, it took me 45 min. to drive what would normally take 10-15 min, I was 10 min. late..The lady at the front desk refused to see me,even though the PA came up and said they had 15 min before the next Paitent, she said no! So now nothing I do or say will change their minds, and he is the only Chiari specialists I know in CO. If anyone knows of a Chiari DR besides ORO can you Please send me the info? The Drs up here dont know about Chiari, I've been sent away from the ER here labled drug seeker?
Thank you all,
DLM
DLM, I take it they are not willing to reschedule? I get that the trip is hard and expensive, but I’m worried about your brain. Do know what they are talking about with “serious chronic brain disease?” Not referring to Chiari? This is tough cause I live in NM and not aware of anyone in our neck of the woods besides besides the CO surgeon. I have had to fly for my treatment. Are you having symptoms and problems post op? Have you gotten a copy of all of the records and reports surrounding your consultations, Mris, and surgery?
Jenn
Those highways in the aurora area are always terrible! That’s definitely a downside to traveling there. I’m so sorry you’ve have this experience with Dr. Oro. There’s a Facebook group called Colorado chiari, or something like that, they may have some ideas for you. They’ve certainly been a tremendous help to me since July, when I first came to see Dr. Oro. It seems like the letter is simply stating what we already have. Dr. Oro does feel that we have a serious brain injury. I would probably worry about that statement too but, from an outsiders perspective, it really could be simply describing what we all have :). I also had many questions after my surgery when I finally came out of the post surgical medication black out! I called the office numerous times to ask the questions I had. It is very weird to have a doctor so far away because everything is done over the phone or email! I can’t imagine traveling there only to be turned away. Maybe if you find that Facebook group I mentioned, they can offer help. Don’t give up! Keep us posted 
Thank you,
I really appreciate your kind words and help!
It took two yrs of going to him before they finally did the Decompression surgery.
My PCP gave up on me and said I needed to find a specialist , come back if I had a cold or flu!
I was so very sick and in so much pain I couldn't hardly leave my house., That was 2008 .
I finally got a Dr here to do an MRI and they found 14.5 dozen lesions on my Brain and The Radioligist actually knew what Chiari was.. Thank the Lord!
I went online and found DR Oro, since my Chiari was only at 4.5 at that time , they didn't do the surgery. Finally in 2011 they did another MRI and it was almost at 8.I was very impressed at that point on how much time and care they spent with me.. The Hospital staff was amazing too. When they did my release Papers at the Hosp. my 3 month post-op was already scheduled.. I was checked had the Cine MRI and that was it? I've never received a call or email from them ,no other apts made, no rehab nothing! The only time we spoke is if I was having a flareup or new symptoms. Even then I had to ask for my apt. I was never seen by Dr Oro except a brief meeting when I was a new Paitent he popped in to go through his flip chart and right before Surgergy he did the exact same spiel and didn't even remember or look up my previous medical history..then I saw him the Day of surgery. Don't get me wrong he was a very kind and gentle man..
I just don't understand how they can dump you knowing he is the only Chiari Specialist here? It wasn't that I just didn't show up, the roads get so bad here in the winter they shut down the passes, 6 wks after surgery our house caught on fire ( I'm a single Mom and my 14 yr Son saved my life) I wear Oxygen at night and the machine was in fire, I was breathing in all the toxic fumes and when the O2 company came they said they hadn't seen anything like it, it should have blown up the house it was so far gone.
They I had my car stolen over the summer and my teen started to go through some really bad times due ti all that had happened. I told DR Oro's office this and instead of being understanding they gave me the boot!!
You can Imagine what the stress of all that has happened since my surgery has done to my health and living at this altitude makes things worse also... But I cant move yet.. I'm really sorry, I didn't mean this to sound like a Pitty Party...Just so frustrated and don't have the income to fly to another Chiari Specialist and it scares me..
Do you still go to them ? How long has it been since you had your Decompression? 1 more ? are you still experiencing symptoms or have new symptoms?
Thanks Again,
Oh bless your heart. That is so much to deal with! Wow…I can’t understand why they stopped seeing you. I have had the best experience with them but I don’t think my case was very complicated at all. I always had some symptoms but then was rear ended and I hit my head on the steering wheel and lost consciousness. The impact totaled my car and I did pt and my neck pain got better but other things got worse. After much testing a new pcp ordered a MRI only because my brother has Lou Gherig’s and he wanted to rule that out. I was dx with Chiari but told by several doctors that I didn’t need surgery and that my CINE MRI was normal. My pcp wanted me to see a specialist. I saw Dr. Oro in July and I was taking 10 pills a day and unable to work. He said the flow was blocked and the crowding was significant. I had surgery on my 8.5 mm herniation on Aug 29th this year (I had been dx’d on April 6th of this year). I was in the hospital for 3 days and flew home to OK on post op day 5. I had a hard time seeing that I was getting better at first. I was very emotional and felt like I made a mistake sometimes. At two weeks I called them about severe head pressure and whooshing in my ears. They ordered a MRI here and they got the films in their office a week and a half later. Dr. Oro said the flow was restored to normal again. They told me to hang in there and take it easy. Then about week 4 things started to get dramatically different. My energetic nature began to return. I started gaining weight. I wasn’t short of breath. My tremors were gone. My nausea was under control. The meds I was taking was treating the pain. I started PT as they suggested at week 6. By the time I saw Dr. Oro at my 8 week check up I had been totally medication free for almost two weeks. He was very pleased with the results. I have head and neck pain when we have storms and he said this is very normal and it may go away. I still have shooting pains in my legs but they are very intermittent. Other than that I haven’t felt this good in years. I really noticed a huge turn around when I stopped the pain meds. Plus pt has been been essential to build back my neck strength. I had been lying down for so long that I had tremendously painful neck spasms that meds didn’t remove. One night, around week 4, I was so sick of the neck pain, that I just massaged the fire out of my neck for 30 minutes. The next day I woke up feeling amazing so I did it again and continued to get better. That’s when I stopped the meds. The only time I take anything is when the head pressure is bad from the barometric pressure change. Even then, I am taking OTC headache meds. I hope you are able to get some answers soon. I hate to hear people are suffering so badly after surgery. Maybe someone else from co will give you some ideas on what to do next. If there’s anything I can do please let me know.
I Really don't know why they never set me up with the Post Surgery plan you were given?
One theory, I think they have a really good Protocol for those people who fly in .. They set up all testing and apts in a 3 day period knowing they just can't fly back and forth.,and even though for me driving down there is a long, painful and expensive maybe they don't...
When I went down last month and was 10 minutes late due to traffic , I had begged them to schedule the Cine Flow while I was down there, and I was told no.. I had seen my pain Management Dr the Day before, and he was very concerned with my decline and said it was extremely important for me to be seen and tested..
After my surgery I had speech , memory and Vision problems and they are getting worse.... I went to write my legal name the other day at the bank and couldn't remember how to spell it... The pressure changes up here is very bad we had 28 inchs of snow by the 15th of Oct.. and now it's really dumping..
I am so Happy for you and your progress , it's amazing. I have been working with a Holistic DR / Chiro who has been a life saver, before I started seeing her I hardly left the house due to pain.. I also had a car accident and had a separate surgery for that in 06. it went very bad cut nerves, lost my right Diaphram and have to wear O2 when I am reclined and developed Fibro after that sue to the Trauma on my body after that surgery. ( that's what the Doc said)
Who would guess the Brain surgery was way easier then that :) He is a great Surgeon!!
Have a wonderful Night , I am off to Parent Teacher conferences!!!
Dlm, I’m sorry you are feeling so bad and that all happened to you. You have a lot to deal with right now. Ill try to attach the member recommended doctors list- maybe find a specialist close to one of your kids so you would at least have a place to stay?? Ill be thinking positively for you and sending prayers.
http://www.chiarisupport.org/forum/topics/member-recommended-doctors