Chiari Online Support Group

So many questions

Hi everyone. I had surgery in April 2012 at CC. I was having odd behavior and hallucinations once I got home after the surgery then one morning I woke and my husband noted that I was leaking spinal fluid so he took me to the ER. The ER refused to treat me since I was only 2 weeks post op, so they transferred me via ambulance to CC (4.5 hour trip). Turns out I had developed bacterial meningitis along with several other infections (both bacterial and viral). I underwent another surgery after being admitted to CC and was sent home with a PIC line with antibiotics to treat the meningitis. I have absolutely no memory of any of these events. It took me several months to finally come around and realize my surroundings. The whole process is still very confusing to me but I am starting to have a few "flashbacks" here and there.

Anyways, I have had extreme neck pain since my surgery but figured that it was normal considering.....but now I'm starting to have so many old and new symptoms that I'm concerned. I am so frustrated. I live in Indiana and there are no chiari specialists that I can find in this area. Do any of you know of anyone? There is only one group of neurologists here in Fort Wayne and they were SO mean to me in the beginning of all of this that I just can't go back. I went to them with all of these strange symptoms and they diagnosed me with Chiari; however, they were adament that my symptoms had nothing to do with Chiari and that it was just in my head. What?! I just need to find a neurologist that is knowledgeable about Chiari and was hoping not to have to make such a long drive. Also, my neurosurgeon at CC doesn't do post op follow ups once you are 1 year post op. Please help.

Wow, so sorry for all that you’ve been through! What I can is this; Chiari Malformation is known for its crazy symptoms. It can affect every part of your body, and anything related to your central nervous system. I don’t know specifically what symptoms you are having but it is very feasible that any visual problems, body and joint pains, confused feelings, and inability to focus (along with so many more) can all be related. I live in northwest Indiana and I can’t find a good doctor either. That is very frustrating. I had the spinal decompression and then 4 years later I’m left hanging. I have tethering in my spine and a syrinx that is the largest my doctor has seen and my symptoms have been worse lately. If you hear of a good specialist, I’d love to know who to go to! Good luck with everything and keep your head up! You will have bad and good days (probably seemingly more bad ones) but I’ve found that you cherish the good, pain free days even more.

Thank you so much for your replies. I am having a really tough day today. So tired of feeling lost. I guess I had myself convinced that I was done and over with Chiari once I had surgery. I guess I was in denial that it was a life long committment. I was so wrong.......

Oh my gosh how scary! I am so sorry to hear that awful story. I am awaiting my 1st appointment with a neurosurgeon (was just newly diagnosed with Chiari Malformation I in June of this year 2012). Your experience really scares me. I know the key is to find a doctor that specializes in Chiari but I guess you’re never guaranteed anything. I hope you find a new doctor in your area and wish you the best! Please keep us posted!
Thanks,
Mary

So sorry to hear about your problems. I had some weird hallucinations when I was put on Topomax and then I was switched to Keppra (I had an EEG come back suggestive for seizures so the neurologist put me on these drugs - at the time they thought my Chiari was an incidental finding). Are you on any prescription drugs? Wishing you good thoughts your way!

Jeff

Hi Jeff. I think the hallucinations were due to the meningitis. I am currently on no medications of any kind except handfuls of Aleve each day for the pain. I really liked my surgeon at CC but there is absolutely no follow up and the group of neurologists here in town are so awful that I haven’t had anyone to turn to in this area. I did find the doctor list and it looks like there are a couple in Indiana so my search will begin tomorrow.

My son also got meningitis infection 2x with his decompression surgeries. I will tell you that no matter how far you have to drive, see a neurosurgeon specializing in Chiari. Otherwise your just wasting your time with neurologists who can’t help you. We drive 3 hours for my sons neurosurgeon.

The acceptance and resignation that it is a life long journey is the hardest for us as parents of our young son. It slays us really, and there’s just no getting used to seeing the onslaught of pain and symptoms strike. I’m sorry that I don’t know of a doctor to recommend to you, the good ones are a rarity when it comes to chiari even if you’re able to travel. I’m looking for a pediatric neurologist (not ns) in New York who’s well versed in all things chiari. In our prayers Christie so sorry

I am so sorry Christy that you have endured so much. I had to go to Wisconsin to get my decompression surgery. Unfortunately I am having problems. I was just diagnosed with EDS -Hypermobile , Dysautonomia and possibly POTS. The NS who did my surgery thinks I may have a "mild" tethered cord. I am just learning so much about EDS and how I have had it all my life plus how many body systems it affects. I live in Goshen, Indiana. We have just made the decision to go see DR. Henderson in Maryland ..quite a leap of faith because I am getting worse.

Dr.Oro is top in the field. There is a Chiari Institute in New York, Wisconsin, and a Chiari Care Center in Aurora, Co. Look up “pilots for Christ.org” for help with travel. You will need to have your Dr. refer you along with your most recent MRI scans. I am currently waiting for an appointment. I understand the frustration but 1 far appointment can yield better results by specialist than 10 close ones by doubting drs. Hang in there. There is also a website where you can check Neurosurgeon credentials. Be sure they ate board certified with a special interest in Chiari.
I just got my cspine t spine back…
Cord compression, degenerative c5-c7, cervical stenosis, spindleosis, narrowing of central canal, ect. Have lost sensation and some mobility in left arm. I feel your frustration. When I have my specialist apt. I’ll post my experience in Aurora. I hope you see improvement soon.

The realization that this is chronic and life long is difficult. I, too, am struggling with the idea that this is forever. You’re not alone.

Im sorry to hear you got so beat up. Drs dont tell us they get to do what ever they want while we are under. But. You got punched in the brain. After surgery i didnt recover. Thats how bad. I couldnt get up or move. And drs treated me like i was crazy. I was in extra days longer even. I have to go to acupuncture and they drive needles deep into my scar tissue. It is some what relieving. Im so dizzy. My head is squeezing. I spell wrong. I forget. N i rarely " hallucinate ". But cant drive. And sometime see people, that i think are home n i turn there is nothing. My vision goes dark in inside light, and sensitive to sun and bright. They say to me hope it gets better on its own. HERES HOPING

I am so sorry to read this story,no one should have to go through this,you will be in my prayers.My journey with this illness has lasted for 28.yrs.with little help,your symptoms are so awful so much more than mine,hope you find a good specialist in your area,if only you could travel to N.C.we have a NS here he is one of the pioneers in this field.God has used him to heal some of my symptoms,if N.C.could be a option, friend me.We are a family here and want to keep up on your progress,the only help will be a specialist,don’t waste any more time on the reg…NSs they may do more harm if they’re not a specialist.

I am so glad to hear the name Dr. Oro and top in the field in the same sentence! I was diagnosed in May 2013 and have an appointment with him in mid Sept for 3 days of appts. Will be praying and keeping you informed...I have heard many good things about his knowledge and bedside manner...God, bless!



pebbles said:

Dr.Oro is top in the field. There is a Chiari Institute in New York, Wisconsin, and a Chiari Care Center in Aurora, Co. Look up "pilots for Christ.org" for help with travel. You will need to have your Dr. refer you along with your most recent MRI scans. I am currently waiting for an appointment. I understand the frustration but 1 far appointment can yield better results by specialist than 10 close ones by doubting drs. Hang in there. There is also a website where you can check Neurosurgeon credentials. Be sure they ate board certified with a special interest in Chiari.
I just got my cspine t spine back...
Cord compression, degenerative c5-c7, cervical stenosis, spindleosis, narrowing of central canal, ect. Have lost sensation and some mobility in left arm. I feel your frustration. When I have my specialist apt. I'll post my experience in Aurora. I hope you see improvement soon.

I want to go to DR ORO so bad!!! My insurance won’t cover it, because 4-5 NS “perform the procedure” in my city. why can’t I go to a SPECIALIST!!!? I want comprehensive care by someone that knows what I am going through!!! HELP ME!! I have suffered for years, but have put off surgery since 2008 because I am afraid of these guys touching my brain! ( I’m also a RN, which really doesn’t help!)

Christy, I find it VERY ALARMING that any surgeon would not do a fallow up visit much less a NS whether it is one week or 10 yrs. I learned, through 15 abdominal surgeries, that a surgeon can do more damage than good if he doesn't care about his patients. Please take the advice from Pebbles and myself to seek Dr. Oro! I have 3 days of appts scheduled with him in mid Sept. in Aurora.. If it is cost and expense that worries you there are people and funds that can help.. it does take a bit of effort to get it all together,,, It's your health, life and wellbeing...it's gonna cost you one way or another anyway! Spending time in the er and multiple drs/surgeons and techs who do not specialize in Chiari will only lead to more frustration, cost and damage. I have learned through many random hospital and er visits that there's a reason they call it PRACTICING MEDICINE...once you tell them you have Chiari most will go read a little blurb about it online and try to treat you as if they know what they are talking about ...there's no doubt you've had that experience... only to leave you feeling more frustrated and hopeless....

The neurosurgeon at CC followed me the first 3 months. After that he wanted me to see a neurologist for any further follow up. The neurosurgeon said he followed surgery only and not the condition itself. So, I guess it's my fault for not finding a different neurologist sooner than now. I was just so frustrated by our local ones after they refused to deal with the issue and just wanted to treat me for headaches and none of the other symptoms. Also like I stated I was in denial that it was really a life long condition. Kept trying to convince myself that after surgery I would be cured and would no longer be considered a Chiarian. The cost is a huge concern as I am still paying for my first surgery and all of the things that it caused (second surgery, ER trip, Ambulance trip, treatment for the meningitis, home healthcare, etc). I am in the hole $180K due to my insurance stating that it was a pre-existing condition. Unfortunately, my symptoms are so bad right now that I am left with no other choice but to seek a neurologist to assist me. This whole process has been so overwhelming for so many of us. I am just glad that we have this forum to lean on each other and get advice and tips. I was truly lost without this group of wonderful people. Thank you so much for being there for each other. We are the only ones that can ever truly understand the symptoms and the frustration of trying to have someone really listen and believe us about our odd symptoms.

luvbug said:

Christy, I find it VERY ALARMING that any surgeon would not do a fallow up visit much less a NS whether it is one week or 10 yrs. I learned, through 15 abdominal surgeries, that a surgeon can do more damage than good if he doesn't care about his patients. Please take the advice from Pebbles and myself to seek Dr. Oro! I have 3 days of appts scheduled with him in mid Sept. in Aurora.. If it is cost and expense that worries you there are people and funds that can help.. it does take a bit of effort to get it all together,,, It's your health, life and wellbeing...it's gonna cost you one way or another anyway! Spending time in the er and multiple drs/surgeons and techs who do not specialize in Chiari will only lead to more frustration, cost and damage. I have learned through many random hospital and er visits that there's a reason they call it PRACTICING MEDICINE...once you tell them you have Chiari most will go read a little blurb about it online and try to treat you as if they know what they are talking about ...there's no doubt you've had that experience... only to leave you feeling more frustrated and hopeless....

Christy,

First of all I want to say how brave and wonderful you are. I know sometimes it's hard to reach out for help when you are feeling so down. There is a wealth of great information from the replies you recieved. I just want to encourage you to keep fighting and looking for answers. I firmly believe in the squeeky wheel gets the grease adage. I know from years of personal experince how demoralizing and discouraging it can be to go to doctor after doctor and be treated like you are making things up or are a hypercondriac. Just know that everything you are thinking and feeling are valid and you deserve to find good doctors that will believe you, help you and value your quality of life issues. You may need to travel but having a doctor that listens and helps is worth EVERYTHING when you are dealing with Chiari. You may have some of the accompanying medical issues that show up with people that have Chiari. You should look into POTS, EDS and teathered cord. It may hep explain some of your other symptoms.

I would also try getting in touch with Senator Joe Donolly's office and see if there are any avenues you can explore with your insurence companie and being told you had a preexisting condition and your enormous dept. It cant hurt and thats what they are there for to help the people of their state. I would also contact your congressman or woman along with contacting Senator Donally. Just have all your information ready and infront of you when you call. They may have the person that deals with insurence issues call you back. It cant hurt and ......the squeeky wheel gets the grease.

If you ever need help or you are having a bad day know that there are people here that know exactly what you are going through and that care about you.

{{{{{{{HUGS}}}}}} Wendy

I tried to edit my coment but it didn't work...

I looked up your Congressional Representatives

Senate.....Joe Donnelly http://www.donnelly.senate.gov/

House ....Marlin Stutzman http://stutzman.house.gov/

I found this too.
http://www.in.gov/idoi/2547.htm

The worst thing they can say is they cant help you and you are exactly where you are now but if there is a chance that they can it may be worth your time. I know it's exhausting... I hope this helps.
wendy said:

Christy,

First of all I want to say how brave and wonderful you are. I know sometimes it's hard to reach out for help when you are feeling so down. There is a wealth of great information from the replies you recieved. I just want to encourage you to keep fighting and looking for answers. I firmly believe in the squeeky wheel gets the grease adage. I know from years of personal experince how demoralizing and discouraging it can be to go to doctor after doctor and be treated like you are making things up or are a hypercondriac. Just know that everything you are thinking and feeling are valid and you deserve to find good doctors that will believe you, help you and value your quality of life issues. You may need to travel but having a doctor that listens and helps is worth EVERYTHING when you are dealing with Chiari. You may have some of the accompanying medical issues that show up with people that have Chiari. You should look into POTS, EDS and teathered cord. It may hep explain some of your other symptoms.

I would also try getting in touch with Senator Joe Donolly's office and see if there are any avenues you can explore with your insurence companie and being told you had a preexisting condition and your enormous dept. It cant hurt and thats what they are there for to help the people of their state. I would also contact your congressman or woman along with contacting Senator Donally. Just have all your information ready and infront of you when you call. They may have the person that deals with insurence issues call you back. It cant hurt and ......the squeeky wheel gets the grease.

If you ever need help or you are having a bad day know that there are people here that know exactly what you are going through and that care about you.

{{{{{{{HUGS}}}}}} Wendy

Wendy thank you so much! I had no idea that I could even try that route. Keeping my fingers crossed…