My 67 y/o mother has a syrinx that is 9 vertebrae long (most of her thoracic and lumbar spine). She is no longer able to walk without assistance, she's losing bladder control, and questionably losing bowel control. The bowel control we're not sure about because she had a virus the first time she soiled herself and a laxative the second time. This has been progressing fast - all within a couple of months.
My mom is terrified about seeing a doctor for this. She has panic attacks whenever we discuss going to the doctor. She is depressed and lays on her sofa all day doing nothing but watching tv. Yet she denies being depressed and gets insulted if we say she seems to be depressed. I don't think I've ever seen her mental health be so fragile as it is right now.
If my mom said she was okay with the consequences of not seeing a doctor, I would accept that. After all, she is getting up there in years, and it's her body, so it's her choice to make. But she's not okay with the consequences, she says she doesn't want to die and she doesn't want to lose her ability to walk. Ugh!
How do I help my mother who has panic attacks whenever the subject is brought up? She is having a mental breakdown before my eyes. I don't know how to help her without pushing her over the edge.
Oh my, I am so sorry to hear this. A syrinx is nothing to mess around with, especially if she is already experiencing this many associated problems. A syrinx can definitely cause bladder and bowel issues and it is possible they are related. This is not something she should wait on. I completely understand her anxiety over the issue but she needs to understand that she can suffer permanent neurological damage without treatment. How long ago was she diagnosed and did the doctor recommend treatment at the time? I wish the very best for you and your mother and I hope she will go have this further evaluated.
I know this can be a scary time, and many times the fear comes from feeling like the only one that feels like this or has the condition.....she may feel better to know that there r others out there with the same issues and have been to Drs with success.
May I ask, do u know if her syrinx is acquired...from an injury or from an obstruction to CSF flow due to a congenital issue/condition?
It all depends on what is causing her issue as to how they may try to treat it.....sometimes meds, and others surgery is the only means to successfully help....but , not until she is seen by a Dr well experienced with this and related conditions will she know which is the best course of action for her.
So, one more question, was she checked for related conditions and issues?
They found the syrinx on an MRI around 5 months ago. She went to the doctor for back pain and that's when they found it.
They haven't even begun to figure out why she has the syrinx but I, myself, have a Chairi Malformation, so we are guessing that's probably going to be what the cause is.
She went to a Neurologist who is okay with taking a very slow approach. He scheduled an EMG for her in 3 months. She has no other tests in the meantime. This dumb Neurologist has no idea that he's giving my mother permission to wait on something that is fairly urgent (bladder loss & slight paralysis in her legs).
Her family doctor is pushing her to go to a large hospital like Hopkins, but she's ignoring his suggestions because it's not what she wants to hear.
She's putting a lot of pressure on her family members by telling us she doesn't want to be paralyzed from this, yet she's not cooperating by seeing a specialist. I guess I don't have to tell you that secretly, even though I love my mom, I am so angry with her for not dealing with her fears and taking care of this.
Thank you for letting me vent to you. It's been a tough few months with her.
Hi...does her ins require a referral? If not use the list of Drs we have made to research Drs...keep in mind the list is not a referral and all may not be true specialists for Chiari or syringomyelia.....but, many r and it is a good place to start,,,,,u may have to travel to get to one , but it is well worth it.
I agree, she is having issues walking, voiding etc....she should not wait too long....she is not going to like the EMG,,...I know I didn't.....
The larger Hospitals r not always the answer either....make sure u go to where they treat Chiari all the time....some big hospitals reputations may be for neuro issues, but not chiari and it is a big difference.
I am sure ur mom is scared....and it will take kind gentle hands to hep guide her in the right direction.....
Have u had surgery for ur Chiari?
No worries, that is y we r here so u can vent to those that understand : )
Thank you for the information on finding a doctor. I might have a better chance getting her to see somebody if we find a doctor somewhat local.
As for me, I haven't had surgery. I'm in the "wait and watch" group because my malformation isn't causing any symptoms. Knock wood.
I had an EMG and I don't remember it being painful per se. It was more of a strange feeling than it was pain for me. I don't think the EMG will be an issue for her but laying flat during it may be. That's the position that hurts her back the most - laying flat on it.
Fortunately, my sister has the patience to sugar coat everything for my mom. If I had to talk to my mom about things, I'd be more pushy about her going to see the doctor (and pushing her would probably backfire). I just hope we can talk her into seeing a doctor soon - before the damage is irreparable (if it isn't already).
Well I hope u can find a Dr close to u then and will be able to explain to her reasons to at least go and see what he has to say.....
I guess with the EMG it is a matter of how u r affected and how u will feel it,...but for me it was very unpleasant and the Dr doing it kept saying he was sorry....lol...that did not help. but nice to know he knew how it felt ....lol...
And I know how u feel, I am sure my dad also has Chiari and vascular EDS...neither of which he is willing to get tested for...but I know that is what is causing his GERD issues, and heart issues...he can be very stubborn...and he is older then ur mom and feels it is not worth it at his age....I think it may help his quality of life and also help figure out how it was passed down and if others in the family may have it....to each their own....I do not push him either,,...lol..
Please keep us posted on the EMG and the Dr search : )
My sister was talking to her yesterday and she told my sister that she hated not being able to walk. My sister took that as the opportunity and said to my mom, "well then let's get you in to see a doctor about this so we can get you better." And my mom agreed!
I looked at the list of doctors on this board and there are none close by. I'm going to make her initial appointment with a Neurosurgeon that's only an hour away - he has experience with Chiari but I'm sure it's not even close to the amount some of these other doctors have.
I'll take her to the local doctor and then we'll go for a second opinion to a doctor that's further away. I can't push her to do anything more than she's agreed to already. At least we're moving in the right direction.
I really do appreciate all the help you've given me. I felt so much better having the support of people who understand.
PS - SelmaS, I hope that you can get your dad to take care of himself so he's more comfortable. Sometimes you can't fix things but at least making them comfortable helps tremendously.
I am so thrilled to hear you decided to be seen. Thank you for being persistant with her and getting her answers. Your in our prayers for answers for your mom. I know the feeling about mom's because my mom has issues and will not go see any Dr. and it is flustrating. Let your mom know she has people in the world that is very proud of her for going.
We went to see the Neurosurgeon yesterday and he point blankly told us that she had the largest syrinx that he had ever seen - yikes. He said he wanted her to see a specialist in rare disorders, from NY, named Dr. Ira Abbott. Is anyone familiar with him?
My mom is suddenly on board with seeing the doctors now. I'm not sure why she changed her mind, but I'm glad she did.
Wow, it is such a good thing she went! I have not heard of Dr. Abbott, but maybe someone else on here has. I am so happy to hear that your mother has changed her mind and decided to get help. Has she made the appointment with the specialist yet?
Hi....I looked Dr A up as I never heard of him either, but if u r going to go that far to a Dr that is a NS not a Chiari specialist, y not go to the Chiari Institute in NY? Just a thought?
And thanks about ur kind words about my dad...he is a stubborn man, and I have tried and will continue to try....he just digs his heals in more....I have to wait for the right time...he is able to walk etc....so not like ur mom in that regard....but his drop attacks r what scare me as he still drives....ugh.
Sorry I haven't updated you sooner. We decided that we're going to take my mom to Hopkins to see Dr Ali Bydon, a Neurosurgeon who focuses mostly on the spine. I'm going to call tomorrow and see how fast they can take her in.
I spoke with Dr Bydon's secretary a few weeks ago and emailed her copies of my mother's MRI. Based on the images, Dr Bydon was going to take my mom in fast, but my mom chickened out and said she wanted to wait till after the holidays. Now that my mom knows how serious things are, she's agreed to take the 4 hour trip to Hopkins. I just hope Dr Bydon doesn't hold it against us that my mother didn't accept his first offer to take her right in.
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