What Do I Do?

[FlowerGirl123]

Hi everyone.. I am gonna try and make this kinda short. I found out I have Chiari back in the end of April 2003, and was told I had to have surgery soon because I had the "biggest syrinx of any patient" my neurosurgeon had ever seen, and that if I didn't the numbess I was feeling in my arm, could spread and I would become paralyzed. So, I had surgery in June 4, 2003. I didn't know then, that there were any specialists or to look more in to Chiari, I just knew that my surgeon told me "After surgery, you will be 99% better" and I was so looking forward to no more headaches, pain, blackouts, or any of my other numerous symptoms. After surgery, I didn't do well at all... I am allergic to every kind of pain medicine, so I was in extreme pain, and most times, also throwing up/itching/in more pain/etc, from reaction to the pain meds they would keep trying. They had to remove my staples early, as I was allergic to the neosporin they used when closing me up (That was on my chart as an allergy, they used it anyway), and as my doctor said "possibly having a reaction to the staples themselves" since I can't wear any type of metal jewelry. I was in even more pain because of the reaction to the neosporin and staples... with nothing my doctor could really do for me.

So, post up MRI showed I had a leak in my graft (synthetic) and that I had option of, going in and trying to find the leak... put in a shunt... or do nothing and keep an eye on it. Because of my allergies and problems I had from the first surgery, I chose to keep an eye on it. I have had an MRI every year (except last when my insurance wouldn't approve it and had to have a CT scan instead). My recent MRI was yesterday, that I paid for out of pocket, because my insurance still won't approve an open MRI. I was called with the same news as always, today. The doctor received the notes from my MRI, I have the CD to take to my next appointment... and I am told "Everything looks good" but... the thing is, I am in such pain, all the time. I still get the firey headaches, that make me want to scream, I still have blackouts, and lately more than normal. I have trouble falling asleep, because my head hurts so much... and when I do fall asleep, the pain wakes me up after a few hours. I can go through the symptom list of Chiari, and check off 90% or more.

I really don't know what to do anymore... I feel and have felt worse, since I had my surgery... and keep feeling worse as the years go on. Does anyone have any advice? I would really appreciate it, a lot.

[selmaS]

  You should be able to appeal to your INS carrier to get to a real specialist, one that is aware of  Chiari and EDS and not wait for a referral from one that does not....you have to contact your INS carrier and submit the appeal....it may be the one way to get around this guy and his lack of knowledge.

hang in there <3

[Twhit123]

There is a chairi specialist in Orlando fl. His name is Dr Trumble. I searched him and was told if you emailed him that he would answer you back himself. I had a lot of questions and no one here knew anything either. I also live in Florida. Anyway, he was a big help he answered all my questions and if I ever need a neurosurgeon he's the one. He sees both children and adults for chairi.

[FlowerGirl123]

I'm sorry it took me awhile to respond. I haven't been feeling very well.. and trying to stop being so depressed. I had my appointment with my neurologist on Thursday (to hear more from what the nurse told me on the phone call). He said that the MRI looked good, that the "chiari malformation" is dipping some but has to be at 5cm or more, for it to be of concern, and to that I asked him "then why do I have every symptom I had pre op and more that I have now, post op 11 years? why am I not getting any better?" and he said "It's probably migraines"

I also mentioned to him, the problem I have been having lately... around a week ago, I started getting this feeling... like there's electrodes on my brain, and they are zapping and shaking my brain. When it's happening, it hurts a lot... and I can't seem to move my eyes, they're 'locked' in a stare at whatever is in front of me. It lasts around a minute... and then I just feel extremely dizzy for hours after. Since the first time it's happened... it's happened almost every day, a few times a day. And he didn't say a word to me... didn't even write it down or tell me a thing.

I got so mad... and in my 36 years on this earth, have only been as mad at a doctor, once! First of all, I didn't know migraines, never go away, for over 11 years... I didn't know that they cause you to fumble with making a coherent sentence at times... that they cause you to walk in to walls and fall, etc etc etc. And to not say a word to me about my new symptom? GRRR I am still so angry at him!

I should mention, this is a new neurologist for me. Because I have been having more problems lately, and my old neuro didn't seem to take me seriously... I was referred to the new guy by another doctor.

I asked him, when I calmed down... about EDS. He said "I've never heard of it" I asked him about looking in to it, so I can be tested... and he said "you will have to bring that up with your family doctor, I don't know a thing about it"

I asked him if I could get a referral to one of the specialists here in Florida... he told me "I need to look through a few things, try you on a few different medications and see what works... I just need to get all of your medical records"

I told him "If you don't know what's wrong with me... don't seem to know much about chiari or anything about EDS, why not refer me to someone who might very well know what's going on with me?" and I was told "You need to have patience"

My insurance, unfortunately... I need to have a referral, in order to see anyone that is not in the network, and even then, it's gonna be a fight to get approved to see anyone. I feel like I should just give up and resign to the fact that I will be in pain and sick like this, for the rest of my life. Because I can't take going through all of this.

Sorry for the long post.

[selmaS]

  Is that Dr a Chiari specialist?....If not, go see a Dr that can do testing for EDS and go from there....if you get a positive DX it may help you go to the next step to help you feel better...BTW not all NL's know from looking at someone if they have EDS...they should use the Beighton scale to help determine if you have hypermobile tendencies....that does not mean if you are not hyper mobile that you do not have EDS as there are several types that must be ruled out.

[Elisaandbucky]

I forgot to add that I did find a specialist in New York. Traveling from North Carolina - mile over the SC state line - is costing some money, but it is paying off. My first surgery is scheduled for July 29.

[Elisaandbucky]

I am reading your posts and feeling both sad for your pain and frustration as well as angry at medical professionals who don't sound like they are caring for you.  My own situation is similar. After I was told I was "fine" and did not need surgery, I got this idea to search for a specialist on my own. Many insurance policies require referrals; however, you can find out if you can search and request an appointment on your own. This was difficult for me, trying to do all the research during periods of pain. It sounds like you may have a more difficult case than me (I do not have EDS or a syrynx). I do know that Selma who responded to your post has a list of chiari surgeons (just a list, not any specific recommendations). What you should know is that you found a great source of support and kindness in this community. I am glad you found it, and I hope that gives you some peace and hope as you begin to search for a real answer.

[FlowerGirl123]

Thank you, I brought up to my neurologist last year, from your suggestion, EDS and he said "I don't think you have it" and that was all that was done about it. I just been feeling lately, like.. since nothing abnormal is showing on my MRI, that they think I am cured and don't believe a thing I say. My neurologist said "depending what shows on this MRI, I might refer you to a specialist in Tampa" and I was kinda looking forward to that, that, THAT doctor, could see something he's not... but since this MRI is "normal" I don't think I am going to be referred no.

I am so depressed over everything to do with Chiari... it all just makes me want to give up and stay in bed, since doctors don't seem to believe me.

[selmaS]

  Hi...I am so sorry you continue to have so many pains and issues post op....many times it can be from the related conditions we do not know about B4 surgery is done.

You said you have reactions and issues with meds and the neosporin.....many with Ehlers-Danlos* have these allergies and reactions...bcuz of that the NS I went to only  will use tissue from the patient for a dura patch, and they used a glue and sterri strips, no staples.....

It is possible you have EDS* AND may have cranialcervio instability....that can cause black outs, and head aches and nausea....

Some with this issue instead of a shunt have opted to replace the patch as it can fail and cause excess CSF to build up...replacing the synthetic patch with one of tissue harvested from you should be a big help in some of your symptoms....

Find a true Chiari specialist as they are one of the only ones that will correct another surgeons past efforts.