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Chiari Malformation Community
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Avatar universal

Husband Just Diagnosed with Chiari Type 1

A little back story:  My husband started experiencing SEVERE migraines that we originally were told were cluster headaches by the ER docs but thankfully, he only had an episode about once a year.  However recently, within the past few months, he cannot raise his heart rate without almost immediately triggering one of these debilitating migraines so he got an MRI.  The MRI showed that basically his brain was being squished and coming out a little through his foramen magnum.  So we went to a neurologist and he diagnosed him with Type 1 and reassured us that it was no big deal and prescribed him Propranolol, Indomethacin, and then Thorazine for when he might have another terrible migraine so he would not have to spend 6+ hours at the ER.  The doc said that he would need to take these meds for probably a year and after researching these drugs and Chiari Type 1, it seemed to me that surgery would probably be his best option.  He is active military who cannot PT and this condition is most definitely affecting his quality of life in a very negative way.
My question is, is our current doctor considering the best available options for him?  And the meds he's taking sound very dangerous if taken long-term like he described.  My husband is only 29, I don't want his body unnecessarily compromised with unneeded medications.
10 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

FIrst let me thank ur DH and urself for his service to our country, I deeply appreciate his service and ur sacrifice in having him leave for long periods of time.

B4 u even consider surgery ur DH will need more testing to see how his Chiari is affecting his overall health in addition to the symptoms he is experiencing.....

A CINE MRI to rule out a CSF obstruction and over crowding....a MRI of the  cervical,thoracic and lumbar spine...to help rule out disk issues, tethered cord, syringomyelia,ICP, POTS, ehlers-danlos and sleep apnea......

Most times meds do not help with the pains we all deal with during a flare...the more we do the worse we can feel....sometimes for days or weeks later....

U will want to find a true Chiari specialist as they know to look for all the related conditions and rule out non related conditions with similar symptoms.

We do have a list of Drs...being he is in the Military, he may not have a choice to who he sees.But feel free to use the list of Drs we compiled from the members here of Drs they have been to and liked...the list is NOT a referral nor an endorsement, just a means to help u get started in researching Drs. http://www.medhelp.org/health_pages/list?cid=186

If u have ne questions feel free to ask : )

Know u and ur DH are not alone.
Avatar universal
Thank you so much for your very kind words!  His diagnosis may really suck, but it is nice to know that there are people out there that understand and can empathize with what is happening to us so unexpectedly.
You are right about the fact that since he is in the military, he does not really have a choice on which doctor or specialist he sees..
I honestly have no idea what all those acronyms and other medical jargon terms you mentioned above but you can be sure I will now start researching them as well.
My main concern for him right now are the meds he was prescribed and wondering if anyone else had taken those or something similar as well.  He won't have another follow up until 6 weeks from now but honestly, I just want to know any and all available options to help him or at least ease his pain somewhat.
Avatar universal
My cousin was diagnosed about a year ago and sadly passed away in september. I am sorry to hear your husband is experiencing this, I know how much pain my cousin had at times and the headaches seemed awful so really hope you get some answers xx
620923 tn?1452915648
COMMUNITY LEADER

  We do have a list of the acronyms in the Health Pages...but do feel free to ask about nething u r not sure of or do not understand ....I can also be typing typos too....lol...

I am not familiar with those meds as I was never RX'd them. I also found that no matter what med I was on nothing helped my Chiari symptoms and I am speaking about having had surgery on my knee and ankle and the pain meds for those surgeries did not help, so I knew not to try and get on a med for them.....I knew I had to change what I did to help prevent the symptoms from flaring.

Hope this helps
Avatar universal
I am so sorry to hear that and you have my deepest condolences.  Thank you for your kind words.
Avatar universal
Your comments have helped, thank you!  I watched the first video link you sent me actually right after you sent it and it was very eye opening.  I wish I could get my husband to watch it however I doubt he will watch something that long if it's not one of his video games!  Also, I think he is a little depressed and has not fully taken his diagnosis in just yet.
If you don't mind me asking, what did you change that helped manage your systems?
620923 tn?1452915648
COMMUNITY LEADER

  I am glad I was able to offer u some help....know that all of us go thru a similar process as those that lose a loved one when we get the DX and when we are healing post op...we go thru denial, anger, depression, and finally acceptance.....so it is normal...plus watching videos can be too much for some to deal with.....

I did not send the videos.....as I can not watch them either....not sure I could have gone in for surgery if I had......

I keep track of my activities, weather etc and how I feel....so I can more easily see which ones may affect me more depending on weather or just the activity.

I also would rest up when I knew a big event  was approaching so I felt my best the day of....knowing I may still have a few days after not feeling well.....it is a lot of shifting how and when u do things so u feel ur best.

Avatar universal
I'm so sorry about confusing you with the person who sent me a video!  I just found a Chiari support group online and I must have mixed up my messages!  I've just been Googling literally anything and everything I can find so it's been a  whirl wind of all new information for me to try and absorb.
You mentioned weather changes and I think I'm going to watch the weather just a wee bit closer.  His allergies have been particularly bad this year and with all the excessive sneezing, hacking, and coughing, it makes his head hurt way more than usual.  
Thank you for being honest and open with me about everything.  I need to know and believe that this diagnosis is not a death sentence on his future life and career plans.  And it helps to ease some of my concern talking with people who understand.
620923 tn?1452915648
COMMUNITY LEADER

  Weather is a huge factor in how I feel...I now take a antihistamine b4 bed each night, it helps with my sinus issues and helps me sleep....sinus issues is another issues many of us deal with too.

Many of the Chiari Drs do have video's posted on their sites if u r interested.

Finding the right Dr is key in all of this and making sure ALL related and non related conditions are ruled out b4 surgery is even considered....
Avatar universal
Hi there

I have lived with Chiari for nearly 10 years now. Mine is type 1, 8mm herniation, and I have a small syrinx that has not changed in size at all.

The one thing I recommend everyone now is pilates. It's changed my life. I stopped exercising for years because of the pain but then my symptoms seemed to get worse as I got a bit older, so my physio recommended low impact sports such as cycling and swimming, along with specific stretches directed towards strengthening my core.

I now find that my neck is only a bit sore when I am stressed or tired, but I no longer experience the excruciating pain I used to years ago.

B vitamins and magnesium have also helped, but this has always been monitored by my gp, so your husband may want to have tests before taking any supplements.

Very best of luck to your husband, and I hope he is one of us who have eventually managed to control our symptoms without the need for surgery.

Karen x
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