Does anyone have expereince with Chiari Malformation?

[mariolatry]

I've recently been diagnosed with a Chiari I malformation* via MRI. I have my first appointment with the neurosurgeon on June 2nd. I've been researching the diagnosis online

Does anyone have any experience with this diagnosis? What should I be asking the neurosurgeon? Any non-surgical interventions that can help?



*Either my skull is too small or my brain is too big and part of my cerebellum is squeezing out through the whole at the base of my skull, restricting the flow of cerebrospinal fluid.

 

[Mouse House Mama]

I know someone who has one. They treated the sweling with a strong dose of antibiotics. It was not severe enough to warrant surgery at this time.
Good luck!

 

[EthansMom]

My husband was diagnosed with a Chiari Malformation last summer/fall and had to have decompression surgery this February. He ended up having a Chiari 1.5, which means that his brain stem had also decended down and was actually fitted into his spinal column. (After the fact, his neurologist said he was shocked DH was walking around, talking, etc... in this condition.) Because of a few small issues (nausea related to the brain stem, reactions to some of the pain killers), DH ended up being in the hospital for 4 nights after the surgery. He had to return to the ER about 10 days later due to Aseptic Meningitis (brain irritation due to the surgery) and was admitted for one more night and treated with additional steroids.

We interviewed three neurosurgeons for DH's procedure. We wanted someone with a lot of experience in this particular surgery, top of their field, etc... There are actually some places that purport to be "Chiari specialists" that get really bad reviews from other doctors.

Where are you located? This is not a procedure you want to have done at the little local hospital. The rest of the staff (nurses, resident, other surgeons) are as important as other factors. When we were researching doctors/hospitals, the ones that got the best recommendations were the Mayo Clinic, NYU, and Johns Hopkins. DH had his surgery performed at NYU by Dr. Jeffrey Wisoff. I can't say enough good things about Dr. Wisoff or the staff at NYU.

Even with his few setbacks, DH was able to return to work only 6 weeks after his surgery. He is now mostly symptom (bad headaches, ear pain, eyes not tracking, muscle twitching in arms and legs) free. His scar is mostly covered by his hair, sticking out only an inch or so at the base. The surgery was totally worth it.

Feel free to PM me with any other questions or concerns.

 

[Darcy03231]

I have a friend who has it and had the surgery done, also at NYU. She did a lot of research before deciding where to have it done. She's had some minor issues since the surgery (has other health problems besides), but for her life has been vastly improved since having it done.

 

[lillygator]

my mom had this and had surgery done at Shands hospital in Gainesville, FL. She had some recovery time after the surgery and she is fine now.

 

[mariolatry]

Thanks, all.

I'm in central Massachusetts so Johns Hopkins and Tufts are on my list, although now I'll look into NYU as well.

 

[EthansMom]

I know it's a stressful process. You'll be in my thoughts and prayers.

Just to let you know a few details... The surgery took about 4 hours from the time they took DH in until they took him to the recovery area. He had three neurosurgeons working on him at one time (also several nurses, a couple people from anesthesia... like a total of about 12 people in the OR). He has a scar that's about 4-5 inches long.

One of the best things I bought for DH's recovery were several sets of jammies that had button plackets on the shirts (so they could easily slide over his head). I think they were Hanes (with matching shirts and loungepants) and I got them in the Men's section at Walmart. Once DH was recovered, I stole them and have been wearing them at night.

The surgery itself went very well. DH's problems weren't due to any direct issue with the surgery but with having work done near the nausea centers of his brain, having reactions to the pain meds, and then having irritation (possibly a reaction to the adhesives used). Standard recovery times for the decompression surgery without any issues were quoted as 2-3 days in the hospital and about 3 weeks at home.

We're in CT. Between travelling in for consultations ahead of time, travelling for the surgery (I commuted in to NYC each day to see DH), and post-op appointments, travel costs can get a little high. Keep your receipts... Your medical expenses (including travel) may be tax deductible for any portion that exceeds 7.5% of your AGI.

When we consulted with the different neurosurgeons, we found the other two were happy to perform the procedure right away. Dr. Wisoff was much more conservative and wanted to rule out other causes of some of DH's symptoms before he performed the surgery. He was also much more experienced than some of the other surgeons available at other hospitals. It sounds like you're doing a good job with your research before having surgery.

Like I said, feel free to ask if you've got any questions. Although, different people can have far different symptoms and severity with their Chiari and far different experiences with their surgery, it does help to have someone who's been there/done that.

Good Luck!

 

[DawnCt1]

Thanks, all.

I'm in central Massachusetts so Johns Hopkins and Tufts are on my list, although now I'll look into NYU as well.

All very fine institutions. I am sure you will receive excellent care. I had an employee who did very well after surgery for the condition.

 

[LuvN~Travel]

As far as non surgical interventions that may help I haven't really heard of any?
Our daughter had the decompression surgery when she was five, after we found out that it and her hydrocephalus were what caused her Scoliosis.

I would think that if they were worried about any spinal fluid pressure whether above that area or below they might put you on some medicine to keep the pressure low. (At one time before she had shunts put in they had our DD on a medicine that those with Glaucoma use to keep her pressure down)

However, I would just suggest that you ask for multiple doctors to give their opinions then ask them questions more about your recovery time and such after. I know one question brought up here last year was (in keeping with this message board ) about riding some of the more extreme rides at Disneyworld. Questions like that may be something you think about.
I can tell you in our DDs case, riding has never caused her any problems that we know of. She just loves ToT! lol

I will keep you in my thoughts too. Let us know what the doctors recommend for you.

Kim