Chiari Online Support Group

Hi! I’m new and a little scared!

Hi there! :hugs:

I was diagnosed in November 2019 and just had my 2nd appointment with my neurosurgeon yesterday. He told me that we will be moving forward with surgery. I’ve always been very blessed to be healthy until now and both my body and mind are not taking it well. Some days my symptoms are excruciating which triggers my anxiety and then I feel like a whole mess! I am in need of some positive words and guidance. How have you all dealt with the anxiety and stress around symptoms/upcoming surgeries?

Thank you! :two_hearts:

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Hi and welcome! I can only speak from our experience and point of view but here’s what we’ve learned. My daughter is 11 and was diagnosed with Chiari in August 2019. Unfortunately, we are still struggling to find a neurologist and neurosurgeon that are educated on Chiari. We are currently waiting for a second opinion with Boston’s Children’s Hospital. I can say that there is an extreme amount of anxiety surrounding her day to day life and how or if she will find a doctor to treat her. It has been very frustrating for both of us. However, we lean on God first for strength and education second. This forum has a plethora of information and wonderful members who openly share their experiences. I definitely recommend spending some time reading through the posts here and finding out all you can about post operative healing and recovery. Ask questions if you have them. There are so many people here to learn from that it has truly been a blessing for us! Best wishes for your upcoming surgery and know that we will be praying for you as well! Please keep us updated as to your progress. God bless you and give you a speedy recovery!

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Hi! I was diagnosed in late 2015 and had decompression surgery at the end of 2016. The surgery helped me immensely. The stress and anxiety of a chronic health condition is no joke though. I saw a therapist for a couple of months leading up to my surgery. She gave me an outlet to share my worries and fears and taught me some basic mindfulness practices to address anxiety. I was having a lot of trouble sleeping due to the anxiety, too. I got medication from my primary care physician to help with that. Best of luck to you!

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Hi Felicia,

Thanks for sharing. I am currently in your situation and understand the tremendous impact this new diagnosis can have. I was diagnosed 1.5 years ago. I have been recommended for surgery, but have been trying to hold-off. I have another consultation at Johns Hopkins next week. What I find most difficult about Chiari is how varied the symptoms can be. Some days I’m relatively okay, others I’m totally unable to participate in life.

Would love to continue this conversation with you.

Wishing you all the best,
Bridget

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Hey Felicia!:purple_heart:Welcome to the Chiari Family.I was diagnosed in 2017 but wasnt told I had Chiari until late 2018 due to continuous visits to primary then onto Neurology,physical therapy and finally neurosurgeon.It was actually seen in a scan done in 2017 but no one mentioned it.There was when everything came together-I was told that I needed the surgery before symptoms progressed (I literally couldnt see this is still unknown why but likly due to nerves) from then on I joined many support groups & let me tell you…This is a family…every single person is so supportive and still getting closer to surgery I was looking for ways to go around it as I suffer from PTSD as well.Speaking to one of my 8 drs I was told if it wasnt done it would literally take my life…that was when my faith became stronger and just went with it…crying up until I met every single wonderful person in the OR that day and once it was over I woke up in a out of body experiance.I made it!- Just 5 weeks ago and im already driving and playing with my children.My point is Yes! The anxiety was intense to say the least but it wasnt nearly as bad as I imagined.Sometimes our minds can make things bigger than what they are and life changes can be super scary.Youre already a warrior and have totally got this! Best wishes on your new journey​:butterfly:

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Prayers for you and your family💜

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Hi Felicia!

I was diagnosed in 2010 and I had decompression surgery in 2012. I live in Southern California and I had my surgery in Newport Beach. My neurosurgeon was Dr. Duma at Hoag Hospital. I was suffering from painful pressure blackouts, chronic sinus problems, TMJ, numbness and tingling in my ears, hands and feet…etc. I also have a C1 vertebrae fused to the base of my skull, and my C2 and C3 are fused. So I have a few things going on back there. My surgery included removal of a golfball size of bone and tissue that was removed. There was also a ‘bovine dural replacement’ inserted to help replace the tissue that was removed. Basically, cow dura mater (skull cartilage for lack of a better term). The surgery was routine. And I was back home recovering about 1 week later. Although there was the expected amount of pain involved with such an invasive procedure, I started having some unusual symptoms such as high fever, off-the-chart pain, vomiting and convulsions. I obviously went back to the hospital where they determined that I had cerebral meningitis with a staphylococcus aureus infection. They immediately put me on the strongest intravenous antibiotics available and called my doctor in for emergency surgery. They removed the bovine dura replacement and flushed out the infection. I was in ICU for about three days and then in a regular hospital room for another 1 1/2 weeks. The second surgery seems to have been more painful. I was on a fentanyl drip for the pain. The scariest part was waiting for the epidemiologist to tell me if the staph was a non-resistant strain or not. If it had turned out to be a resistant strain, I wouldn’t be sitting here writing this. I was sent home with ‘picc line’ in my arm and I.V. hardware so that I could self administer antibiotics for about 3 months to ensure that the staph infection was completely eradicated. In the meantime, I developed an allergic reaction to the antibiotics, so we had to change to something else. Also, I was now on the strongest Fentanyl patch. The anitbiotics worked (obviously) and the picc line was removed. This was a few years before the word was out with regard to all the news about Fentanyl and the Opioid epidemic. Regardless, I informed my pain specialist that I wanted to come up with a plan to reduce and eventually end taking all pain medication. Astoundingly, the pain specialist asked me why I would want to do that! I guess they were used to people just being on pain killers forever. So I came up with my own plan of scaling back the dosages month by month, week by week, day by day… 11 1/2 months after the first surgery, I took my last Oxycodone. I went through about 1 1/2 weeks of withdrawals, legs shaking, sleeplessness, phantom pain and general horribleness, but came out the other side addiction / dependence free. The pain was 95% gone with occasional twinge if there was accidental or inadvertent pressure applied to the area. Now, 8 years later, I have no pain. The surgeon explained to me that the bovine dura was never really necessary, but that it is often used as a way to fill the ‘hole’ while the body’s normal process replaces the tissue. The bovine dura is very likely where the staph infection came from. Even though it was processed and sterilized, somehow it wasn’t completely clean. Dr. Duma of course felt horrible and explained that in all his years as neuro surgeon who had performed far more complicated procedures, he had never, ever had a patient develop an infection, let alone a staph infection.

What should your take-away be from my story? Please DO NOT to be even more nervous than you already are. What happened to me was extremely rare and uncommon. My experience took down the law of averages of it happening to someone else! Would I do it again? Absolutely! I would definitely do it again. Because even though I went through hell, the symptoms I was suffering from were unlivable. If I had blacked out while I was driving with my son in the car, who knows what could have happened? And who knows how much worse the pain would have gotten as I got older?

Be cautious, conscious, curious, inquisitive, informed and aware. Try to be your healthiest before surgery. Eat well, meditate, breathe and exercise. Don’t be afraid to ask any question you want answered. Be prepared to go through some pain. Have a plan in mind and demand help getting off the pain meds. But don’t be afraid to use them sensibly as needed. Communicate everything that’s going on with your loved ones and care-takers. Accept help when you need it and lean on them. But do your best to regain your independence and start enjoying and appreciating your symptom free life! I hope this helps! Go for it!

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Hello Felicia; I do have to say that it is very stressful to have to deal with your symptoms and also when you go to the Neurologist to hear that you might need surgery. Please go and get a second opinion and find out what will be post OP affects after your surgery. I was diagnosed with Chiari about 4 yrs ago and when I was at my worst I had my Neurologist at that point tell me that was “was something to do and I had live with it” being in the medical field I decided to search, (which is hard) for another Neurologist who than gave me alternative suggestions and what can be done for my symptoms. At this point I felt at easy that there are other treatments I can do. It is important for you to know that you can’t let this anxiety take over and maybe turn to an higher power to give you strength so you can go on. Most importantly search for other opinions before you go to surgery and this I tell you because I have had different doctors and all different option but I usually have gone with the one that I think will go with my lifestyle. Hope your decision is good and I will pray for you.

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Thank you so much for the kind words! This helps me a lot. I will be thinking of you and your family. Your daughter is blessed to have you!

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Thank you for sharing! Therapy is a great idea that I think would help me a lot. I am so happy to hear that the surgery helped you! Thanks again :slight_smile:

I just sent you a message! :slight_smile:

Thank you so much for sharing! I’m happy that you are feeling good! It makes me feel much better to know that there is a light at the end of the tunnel. You are so right. Our minds are capable of so much!

Thank you for sharing! What an ordeal you had to go through. I am so sorry for that, but I am happy that you are doing better now! Your story is inspiring and gives me confidence that no matter what it will all work out even if it takes time. This definitely helped me. Thanks again! :relieved:

Thank you! It seems like many people have to do a lot of self advocating and research when it comes to Chiari. I will definitely keep all of my options open!

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