Chiari Online Support Group

Hello my sisters and brothers i need to know

Hello my sisters and brothers I need to know if anybody on here went and had surgery for chiari at john Hopkins in Baltimore Maryland that where Im gonna have mine and I want all onist answers about everything during the surgery please .Im so scared and If you know a name of the best doctor there who has done a lot of the decompressing and taking out 10 cyst and taking out 1 and 2 vertabrays. please help me I need the infor on this whos the best doc there and will I be in a lot of pain ? and how long ? Is it worth it surgeryCan I get uo the next day? .pleae please please all information will help other wise day of surgery there gonna have to tie me up to get me to go haah no kidding ! and love to know what doc is the best at john Hopkins for the surgery....blessings my friends............ love .Ricki Lynn

Ricky Lynn, you hang in there I know you are having a terrible week. Nobody but us would believe how excruciating this pain is and how debilitating the other symptoms are. It’s still so hard with a supportive partner but when you aren’t getting support and being doubted it adds another layer. We believe you and we understand- you aren’t alone. If you have a cry that’s good, you need to vent.



Do you have dysautonomia? POTS seems to be a popular type. See dinet.org. I take a beta blocker for this and it really calms a lot of symptoms. Dysautonomia can make your heart race, nausea, feelings of impending death. This is one that we can a pill for. A cardiologist is best for this disgnoses. I can’t say about who at Johns Hopkins is best I just don’t know. You can do key word searches in the search bar at the top of the discussions page and maybe turn up some useful info. For the surgery everyone is different. Some have lots of pain others have little or none. I had very little pain and just slept the whole 4 or 5 days. I think a good average of time in the hospital is about 3 days. 1 or 2days in the ICU, then mo e to a room and spend another 1-4 days. Then home you go to rest on the recliner or in bed for weeks. No house chores or picking up babies you have to literally lay around. You will be soooo tired and this is one recovery that does NOT pay to push yourself, it will harm your recovery. Call on family and friends for meals and errands. It is slow going but you will see progress in small increments.



Have you looked into Ehlers Danlos Syndrome yet? EDS is a common side kick to chiari and it’s very important because if you have it you need to be screened for cranial cervical instability. CCI requires a fusion in addition to the decompression. Not all NS are aware of the connection between EDS and CCI so we all have to be very careful and make sure this is not being swept aside. A regular decompression on a person with CCI may not arrest symptoms and may make them worse.



Google the Brighton Criteria and the Beighton Criteria to get an idea of how a person is screened for EDS. If you fit you MUST be screened for all types of CCI.



These are great videos about CCI:

CSFinfo.org

Videos

Metropolitan Area

Watch anything with EDS and Chiari in it



You are moving in the right direction just keep it up.



Hugs, jenn

Hi ricki Lynn,

I got a 2nd opinion at Johns Hopkins with a Dr. Jon D. Weingart. If I wouldn't be going with another surgeon at Hershey Medical Center, I would be going with this guy. I'm not saying he's (Dr Weingart) is the best, however I know personally he answered all of my questions, and took time out to listen to all of my issues and problems.

I only went for a 2nd opinion because of the detail of the surgery and what all is involved.

I can message you the phone number but you can look up his information on the Johns Hopkins website. He is in the Division of Neurosurgery and if I remember correctly, has done close to 500 of these operations.

Hope this helps.

Hi ricki Lynn,

Ok, let me see if I can answer some of your questions.

First I want to tell you that you can do this. I attached a photo and a quote. It comes from a famous children's movie (and book). Each one of us on here has our own unique circumstances and challenges (physically, emotionally, spiritually, financially - the list is endless I'm sure) however that's what makes each one of us unique. We can use these circumstances and challenges as motivation to keep going and to get answers and to never, ever, ever give up. There is a singer, her name is Mandisa. She has a song called "Overcomer." If you get a chance to listen to it, please do so because you ricki Lynn are an OVERCOMER!!

Second, make a list of every question that you have well before your Jan 8th appointment with Dr Weingart. Keep a tablet and keep adding questions that come up before now and then. Don't leave your appointment on Jan 8th until he answers every one of them to your satisfaction.

Third, make sure you bring whatever medical records you can bring with you to your Jan 8th appointment so Dr Weingart can go through them.

Fourth, it is great you are going to a neurosurgeon. My neurologist wasn't familiar with Chiari. That's nothing against him - some don't see it ever. That is why you going to a neurosurgeon that specializes in it is helpful. If there are other medical issues that Dr Weingart feels that needs addressed that you mention above like the cysts, vision loss.

Fifth, it is normal to have anxiety about surgery however I want to encourage you to not stress about anything that hasn't happened in your life just yet. Take one step at a time. Focus on making your list of questions, there are no needles involved there; no surgery; just you taking your concerns to the paper and writing them out for Dr. Weingart.

Sixth, I only picked Hershey Med Center because it is about 45 minutes closer to home than Hopkins. It's closer for my family to drive and since I met with Dr Iantosca first, and my first visit with him went very well and my wife was very comfortable with him, we decided that if Dr Weingart said the same things as far as surgery, recovery, etc that Dr Iantosca said, we were going to go with HMC. I really feel that both have superb skills when it comes to Chiari surgery and both neurosurgeons come highly recommended. I'm at peace with HMC and Dr Iantosca. Do I have some fear and anxiety about the surgery on the 17th - YES!! However I know that I'm in great hands all the way around.

Seventh, you are not alone in this from the standpoint that all of us here on this support group are here to support you. We may not be able to be with you physically however we are here to share our experiences in hopes that it'll help you.

Eighth, you are strong; you can do this; however it will be your decision on how you proceed. We are here to speak life and hope and encouragement into your life. We all have good days and bad days and we are all here to help pick each other up when needed. I'm sure I'm going to need it next week after surgery.

Ninth, you are an OVERCOMER!!

Tenth, you are AWESOME!!

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ricki Lynn,

I forgot to mention that I have constant ringing in my ears - docs have diagnosed it as tinnitus as well. It could be from the build-up of cerebrospinal fluid around the brain however it's tough to say. This "noise" that you speak of - you said sensor noise - is it like a loud constant beeping or something else? I don't have that - just curious.

Has your neurologist ever sent you for an MRI of the Brain, Cervical spine, Thoracic spine, and Lumbar spine (with or without contrast)? I'm guessing this is how they found the herniation? This is going to give them (and you) a better picture of what's going on inside but I don't know how contrast reacts with cysts - this is only something a licensed medical professional can determine. Hopefully Dr Winegart can address this with you.

Are you shaking from the pain or do you have (if you don't mind me asking) some other muscular or nerve condition that may be the cause?

The best thing to do is bring any family to the appointment with you. That way someone else in your family is just as informed as you are and can hear what the doctor has to say in case you miss something (my wife took notes when I was being examined). That is something to discuss within your household as I cannot speak to your situation.

Thanks for the well wishes and prayers, they are appreciated very much. I'll keep in touch when I can.

I agree with bringing your husband with you, puts a new perspective on what you are going through. My husband has been pretty lack luster in the support department, but I think gave him a wake up call in the hospital for surgery surrounded by others and their spouses having the same surgery. I think he was more of the feeling that I was creating this condition in my head and then finding a quack who would agree to operate. For the life of me I don’t know why people doubt this condition so harshly, family, friends, doctors… Why Chiari? Not MS or ALS. I get frustrated about this but don’t get me wrong very hopeful for you.