Chiari Online Support Group

Should I consider Surgery?

Hi my name is Uniform300 I was having headaches almost everyday when I woke up and it would come and go the whole time I was awake(since January 2018), also have bad back & and neck pain(since 2002) and felt like I stayed up all night even thou I slept 8-10 hours every night and haven’t done anything the day before. So I told my primary doc February 1st 2018 and he sent me to get a sleep test done and for the rest of the issues said to lose weight as I am 400 pounds and will be 26 in march 2020 and 6 feet tall. So I get diagnosed with medium level sleep apena and get the cpap machine on Feb. 10th and use it for 30 days witch they told me that should be how long before I start feeling less tired but no difference. So march rolls around tell my doc nothing changed and he refers me to a Nero doc witch at this time I had a few new symptoms of my mind feels foggy and I cant think straight and forgetting stuff so my mom researched it and thought the symptoms match a condition called pseudo-tumor cerebri so I tell my Nero doc this so he said it diffidently wasn’t and sent me for a mri witch after some second guessing on his part he came back and said I have chiari malformation(didn’t say 1 or 2) and after he explained it to me and my mom he said it was only 5 cm descended and wasn’t enough to warrant the brain surgery treatment so he gives me some meds that was post to bring the swelling in the brain down and lessen the pain, witch was a 7-10 most of the time then. So try that for 3 months and nothing. So he tries 2 different meds none of witch I remember the names of and none of witch helped at all but had some side effects that was not fun. Then when the third med didn’t work he order a spinal fluid flow mri test witch came back normal, so he ran out of ideas and sent me to another Nero doc, while he did confirm the chiari said the headaches was actually migraines and most likely wasn’t related to the chiari and again said for all the other pains said before was just my being overweight and believe me I have truly tried all I can to lose weight(except any weight-loss surgery) and can not get below 390 pounds. And now I have just stopped my 5th prescription med that didn’t help the migraines and now my pain is at 8 out of 10 most days(note. for me if my pain gets to 9 out of 10 I am going to the ER) I am seriously thinking bout bring up the surgery again as the pain is starting to effect my mental well being.Also if I sit on anything that pushes against my legs like a standard toilet seat for more than 3 mins my legs fall asleep and at first I dont feel them then as I get the feeling back they feel like pins & needles and my arms take more time but same and when I was in the mri machine my arms fail asleep because my size cause to push against the tube and about half way thru they went from being numb to hurting like someone was standing on them dont know is because of the chiari because haven’t told my doctors because I forgot too. I dont know my options other then meds rest my life or surgery and I lose my insurance because I turn 26 next march and it is my parents insurance and I dont have a job. Any suggestions be great.

A tough spot for sure. I would recommend a referral to see a neurosurgeon. He will be able to read your MRI with more knowledge as to whether or not the Chiari malformation is an issue. Please ask either the neurosurgeon or your recent neurologist about the impact of the Chiari malformation as seen in the horizontal view at the level of the foramen magnum. Typically, the radiologist only reports on the sagittal view not both.

Unfortunately, if a mass of tissue is interfering with the contents in the spinal canal (nerves, tracts, blood vessels, CSF…) at the level of the foramen magnum, medications are not going to do much. I believe that is what you are saying with your experience with medication so far. I am not a big supporter of medications if they are not doing anything positive for a person’s quality of life.

Now would also be the time to get yourself lined up for whatever insurance options there are for you in the States. Not having experience the American system myself, I have noticed here that there seems to be rumour and inaccuracies abounding. Talk to actual people in the healthcare system in addition to people that you know. Hopefully you can set it up so that you have seamless coverage. You are not working which makes it easier to call different agencies and what not during the day. Given that you have mentioned fogginess of the brain, I would suggest that you put together a binder with tabs and paper to amass the documentation and contact information that you will need.

Good luck with the difficult process.

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So got back from my neurologist today(Friday 9/21/2019) and he told me that while I do have Chiari malformation it is only level 1 and can’t cause all the pain I am feeling or migraines or numbness in my arms/legs or numbness/tingling in the skin at the base of my skull and that the levels 1-4 only rate the severity of the symptoms and that he was out of meds to give me for my migraines but gave me gabapentin to raise my pain threshold so I can withstand pain more. Then after he said that, I knew he wouldn’t refer me to a neurosurgeon and after my primary doc said he wont refer to an oral surgeon that my dentist recommend I see for my jaw pain and said “surgeons go straight too cutting to fix problems I wont refer you till I go thru a course of anti-inflammatory meds” I am pretty sure he won’t refer to a neurosurgeon. So my question is my neurologist right bout any of it or should I change just my neurologist doc or my primary and neurologist doc?

Also my neurologist said that along with my being overweight it is my not getting up at 8am and going to bed at 8 pm everyday and that I need to sleep at least 6-8 hours everyday was what was causing all my pain. While I do think their is truth too it he was talking like it was 70% being overweight and 30% my consent changing night schedule and 0% anything else.

Warning this might not be taken as a big warm hug.

Hmmm… doctors tend to state the obvious. You probably know yourself if you are supporting healthy living and good habits. You have talked about your weight and that is an easy topic for doctors to focus on. Seen it here and in real life lots of times. Now it sounds like you have mentioned sleep habits to doctors - another topic to focus on when the doctors do not necessarily know what is going on.

Sometimes when a big old health concern like Chiari rises it up it can be easy to run around after that and not keep grounded with the day to day of living. Routines are good. Sleep is good. Eating well is good. A balanced head is good. Supportive relationships are good. Meaning in life is good. Money to live is good. Life exists outside of feeling lousy and not knowing why and feeling that no health care professional knows anything nor understands. This is true even though I still regularly forget this.

In terms of Chiari, a neurosurgeon will examine the actual MRI pictures and decide if the Chiari malformation is a surgical concern. Typically, a neurologist reads the radiologist’s reports. Neither of these two doctors can determine if a Chiari malformation is a surgical concern, the neurosurgeon can. Asking directly to have a neurosurgeon examine your MRI and discuss your symptoms will be more productive than anticipating what you think your neurologist will do or not do. Ask nicely.
You may need to see another doctor to secure a neurosurgeon referral.

You can also tap into doctors’ wealth of information or access to other referrals that you might not have thought about. A script could go like this… ‘Why yes, I am concerned about my weight/my sleep/my purple skin. What are you or the medical literature currently suggesting? There seems to be a lot of myths being busted! How could I access what you are suggesting? Would you refer me to somebody?’ You come across as a willing and reasonable patient.

Changing doctors is hard work. Building a good relationship with a doctor when you have a strange condition like Chiari is hard work too. Being patient and jumping through hoops with Chiari is hard work. Much of Chiari treatment is ruling out other things!

Carry on!