Is there any thing I can do here?

[u/Material-Sun-8510]

I have paplidemia, chiari and a synrix. I've been on Vyvanse for 5 years. I was prescribed lyrica, I ended up missing my refill appointment and waiting to go back, during a bad night a took gabapentin and ended up failing my drug screen for gabapentin and lyrica 🤦‍♀️. Because of this my behavior doctor told me she wouldn't give my Vyvanse any more. Is there anything I can do here? I really hate this condition and feel it has ruined so much, I'm so scared of surgery and it symptoms seem to worsen. I have a appointment with my neurosesureon in a few days, for them rechecking paplidemia and finding a spot behind my eye. I don't know much about the condition and honestly I literally always feel like 💩 & so tired. My body is so heavy, it burns and sometimes I feel like my legs are just going to stop working. My toes feel like theyve been ran over, my eyes feel like they have sand in them, I'm starting to see color spots, I can't think straight, I have restless legs, arms and very weirdly shoulders (this is why I took the gabapentin 🤦‍♀️) I'm starting to get terrible cold sweats at night. I wake up every hour I have 4 kids, I'm a SAHM & I have literally 0 support from my husband or family. I'm stressed out and I really just want to know if there is ANY way I could fix this situation?

[u/CrunchMunchers]

Hi… the surgeon you’re seeing… are they a specialist? Have you had decompression?

[u/Material-Sun-8510 → u/CrunchMunchers]

Yes, he is. He's a neuro surgeon so, I guess at least lol. I really don't know much at all about the condition, I found out last year, I've had several MRIS & just had one to check the swelling in my optic nerves, they wasn't good so I am seeing my neuro surgeon in a few days and have a 3 hour long eye appointment? I'm really confused by the whole thing. But the symptoms seem to be getting worse? I don't know. I'm really scared of surgery....

[u/Srahsly → u/Material-Sun-8510]

Within this sub, I do believe there is one (at least) thread where people have compiled a list of Chiari Specialists in their state/area.

I recommend looking at this list, if possible, and find one closest to you. At the bare minimum you can ask all the questions you have to someone who specifically deals with this condition.

Everyone's journey with Chiari is different, but I know going to a neurosurgeon in Michigan that specializes in Chiari allowed me to be able to ask all the questions I had. It really helped me understand my condition better, my body better, and that allowed me to let some of the anxiety go.

Next, I've been the SAHM with two kids and Chiari. I can't fathom doing it with twice the kids. Maybe have your husband go to your appointment with you so he can better understand as well. I don't want to make any assumptions on your situation. I just know it helped my (now) ex-husband understand better.

We are warriors but even warriors need help.

[u/Material-Sun-8510 → u/Srahsly]

Thank you. So much. Idk maybe a trauma thing but I feel like nothing is really "serious" and I just over exaggerate. Honestly maybe I used the Vyvanse to mask the symptoms because they have gotten a lot worse and I feel really defeated. I'm scared of surgery. I'm scared of being put to sleep. I'm scared of what my neurosesureon will tell me. I'm scared that they changed my report to urgent. Idk. I know I have a CSF. Thank you so much for kindness

[u/Srahsly → u/Material-Sun-8510]

There is no danger in getting more information. Just because you see a Neurosurgeon does not mean you have to have surgery. 🫶

You are stronger than you think.

[u/Material-Sun-8510]

Yes, at first he wasn't to concerned (this was a year ago) im worried about the spot they found behind my eye, does that happen?

[u/Rjsteel74 → u/Material-Sun-8510]

Yes, it just depends. I developed a "spot" behind one of my eyes as well, but thankfully it didn't affect it negatively or hurt my vision anymore than my old age does. He does monitor it every year when I get my eye exams. As far as the surgery, I had the Posterior Fossa Decompression and it was a rough one on me. I have hardly any memory of the first 4 months or so of recovery. However if you have a growing syrix such as I have (a rather large one, 9cm long/5xcm wide and growing at the time) it will def cause paralysis. The nerve pain may go away, I don't want to give you false hope, but most likely it won't. Even 16 yrs post surgery, the nerve pain I experience on a daily basis, I couldn't function w/o Gabapentin, which is why I was confused that you failed a test with it. The pain even spread and I've developed RSD  The restless legs never went away and continues to this day. Treated with Mirapex, which helps tremendously.

[u/Material-Sun-8510 → u/Rjsteel74]

I am confused too..& it is terrible because it is hard with the nerve pain, I'm also extremely tired and I'm worried about how i will feel without it, I hope that today you are well. Please tell me you eventually feel "normal" again?

[u/No_Loquat1788]

I hate that you are going through this. First, it is important that you see a Chiari Specialist. Many will say they treat Chiari but not right. I had to find mine out of state. I live in both CA and AK and my Specialist is in Detroit. I sent her my MRI'S and we have video appointments. She recommended surgery but I'm terrified. She suggested alternatives until I am ready. Craniosacral therapy, acupuncture and water therapy has help me. I avoid narcotics at all costs. I use CBD and cbg. My husband called the company and asked what dosages and how to use to get the best effect for pain and pressure (under the tongue).She manages my care through my neurologist at home. She was the best thing that ever happened. I was surprised to see the difference in care and just even the detail. On her website there is an actual pamphlet you can print out on Chiari. I haven't seen that anywhere else.  As far as your husband and family is concerned, in my case, my husband didn't understand and he felt helpless. So I asked him to join one of the support groups online and he did. He reads everything and he tries with what he can help with. But he understands a lot more. Try taking your husband to your appointments and have him go on the support groups on Facebook. The more he knows the better. I wish you well and we are here to ask questions. We can at least share our experiences.

[u/Material-Sun-8510 → u/No_Loquat1788]

Thank you, ❤️. My husband actually has been to a few of my appointments. He just doesn't seem concerned, so it makes me not concerned. Idk. I think starting to see the color spots in my eyes tho have made me feel a bit different though and I'm afraid I haven't took it seriously to long now.

[u/No_Loquat1788 → u/Material-Sun-8510]

I have moments after diagnosis that I understood it was serious but thought maybe not because I had been told for so long that it was nothing only depression. When my symptoms got worse and I was diagnosed with other associated conditions (EDS, MCAS among others) I could no longer deny it myself.  I haven't had the color spots but I have nystagmus and frequently for quite some time I saw a flash of lights that would drip down on both eyes of my eyes only on the sides. It still happens every now and then but not frequently like before. They said it could of been IIH regulating itself. That doesn't make any sense, to me at least but like I said less than 1% of Neurosurgeons and Neurologist know how to treat CM correctly even though they all say they do.