My name is Julia and I am 34 years old, Married with 5 kids. A little about me, before the age of 2 I had 3 episodes of passing out. Doctors told my mom it could be epilepsy but I didn’t have anymore symptoms until the age of 12. I started to pass out frequently then it stopped. I have been having chest pains, severe neck pain, back pain, syncope, heaviness on my shoulders, leg pain, arm pain, migraines, nausea, stomach pains and the list goes on. I have been through many doctors trying to figure out what wrong even my husband was questioning me. I finally went to see a new cardiologist who recommended to see a neurologist for my syncope. MRI was order with contrast and that’s when I got the news. My question is do I need surgery? How bad can it be? Just worried about the Neuro not taking my diagnosis serious with my symptoms.
I am still trying to get my head around Chiari as well (no pun intended
However I also have Dysautonomia and POTS (which POTS can be caused by Chiari). So I know what a struggle it can be to doctor for a little ng period of time and worry whether you will be taken seriously.
That is a lot to deal with between the medical issues and five children - sending virtual hugs!
I am in the process of trying to decide whether or not to have decompression surgery. One thing I know is I wouldn’t let anyone perform this surgery on me but a Chiari specialist with a proven track record.
Another thing I have learned is that my doctors have to hear me and take me seriously. If not I find someone who will. I know my body and while I may not have a medical degree I know when something is wrong.
I hope my post helps a little. I wish you all the best
I’m in Milwaukee, Wisconsin. I have an MRI of the spine and a CSF blockage check on the 22nd. Are there any questions you have in mind that I should ask?
Thanks for the support. Are there any particular test that I should have done before considering surgery?
I am getting an MRI of the spine and a CSF blockage check on the 22nd.
Since you are in Milwaukee are you seeing Dr. Heffez at the WI Chiari Center at St. Mary’s Columbia Hospital? He is my doctor and I have found a lot of positive research on him and nothing negative.
There is a lot of information on his website for the WI Chiari Center that might help direct your questions. I would also go prepared with a list of symptoms. I know for me they are so varied and numerous it is hard to remember them all.
I’d be very careful there. You will find plenty about Dr. Heffez that is less than positive. For example, he gave supportive “expert testimony” in a malpractice trial involving surgeons who did Chiari surgery (with reports of very problematic results) in New York and North Carolina. He may very well be a capable surgeon, but capable in the OR is different than Diagnostics. One sure clue is what one charges for an initial consultation (“intellectual time”) and how he works with Insurance Co-pays. Make sure you understand clearly their policy. In any event you need several opinions THAT ARE IN AGREEMENT and not just one offering “hope” before even considering elective brain surgery.
His statement: “These MRI techniques allow us to identify some Chiari patients who would otherwise go undiagnosed. Our imaging techniques involve the use of 3-D imaging of the brain and cine imaging” is concerning. 97% or so docsdon’t accept the Cine as anythingmore than a possible screening tool if that because of the dependence on positioning for the study. There are a number of postures that “naturally restrict flow” so results as a result can be manipulated either by accident or by the less scrupulous.
Thank you for the information. I was not aware. This surgery is SO serious I would not want any info missing going into it. I will definitely review and take into account what you have said and will be careful in future when discussing physicians.
My impression thus far is that he is / would be a capable surgeon. Regarding consultation my insurance covers his locations so I have been lucky there.
My main symptom is consistent and sometimes debilitating dizzy / balance issues made worse with head movement. I have and get what are called Chiari headaches but I am fortunate that I don’t have them every day. I have had such an array of symptoms and some may be more POTS or Dysautonomia related but they include eye pain and pressure, nausea, tremor, gut issues, extreme sensitivity to lights and sounds, inability to regulate body temperature, tachycardia, low blood pressure, drop attacks (just falling for no reason that I am aware of), muscle weakness, hoarseness and changes to my voice on/off, various numbness and tingling mostly in my hands but other areas as well, cognitive impairment…the list is making me tired lol - oh yeah fatigue! I have probably missed a few …
PS - no I haven’t had surgery yet. I am going to try everything I and my doctors can dream up before going ‘there’. If I need to have the surgery I will and I will do it full steam ahead. Just haven’t made that decision yet.
Kaitlyn
I got the tingling sensation starting on my right arm and consistent tingling sensation in two fingers in left hand don’t wait too long for surgery because there may be more serious damage in the future. But make sure you get all the proper testing done such as MRIs. I didn’t know until i saw a second neurosurgeon that loss of gag reflex is also part of Chiairi because she had seen many of us with that. You just need to have faith and listen to your body; if it gets too much do what you need to do so that you you get on the right track. My neurosurgeon had said to me that if I could wait I should but remember every person and case is different. If your doctor says you can wait so be it, but if he or she says to do it as soon as possible, please do because Chiairi does and can stop the flow of the CSF to the rest of your body. Best of luck!
I have a Dr appointment with a neurologist to get test ran I am afraid I have a syrinx in my neck.The best thing to hep my headaches,numbness, and nerve issues is Magnesium and Vit. b complex take for a couple of weeks and it helps.The Drs. meds. would irritate more than they helped my nerves system.
I believe that is My Nourologist. Dr Kassam.But in Grand Junction Colorado. What was or Is Your Exprience with Him? . I actually ONLY have seen The PA April I like her. However, I do not feel my Chiari is being Acknowledged…any infor you have would be helpful…IF THIS IS THE SAME Doc ???
Update: I need surgery. I do have a blockage of my CSF flow. So that needs to be repaired. Does anyone know if that has any symptoms or complications? Since my NS couldn’t even explain that to me. Thank you guys are awesome with all the advice and opinions.
My doctor is in Milwaukee, Wisconsin I must say I don’t like the way he treated me. He totally ignored my concerns and just said surgery is needed to help my CSF flow go back to normal. I did check on his background and he has been a NS in other states so he could of been a NS there before. His full name is Amin Kassam.
If its the same Amin Kassam who’s group just paid a 2.5 Million settlement for over operationg and encouraging is subordinates to “operate more” I think I’d move on VERY quickly. I have no clue to his OR competence, I believe he resigned and may have moved elsewhere but there are so many Chiari Quacks (especially Colorado and New York,) I’ve all but given up trying to keep track… BTW the Chiari Surgery is a very simple surgery (overly simplified, in terms of Brain surgery as it really is just the begining and end of every Brain surgery without the middle. Failures ar less from technique than totally unnecessary surgery.
Thank You for adding the FYI about The DECOMPRESSION SURGERY being a as You put it (a very simple surgery) Because I’ve been Telling my family that It’s really Not Brain surgery Its SKULL SURGERY…Because in My Case The Dura will Not be Opened and I Think That is VERY IMPORTANT Information for Family. It Makes them Feel More at Ease…
