Chiari Online Support Group

Advice is needed


#1

Hi, My daughter is 17 just diagnosed with 8mm CM-1 neurologist said "in his opinion it's mild". He told me that we will need to build a team here in Alaska then go out of state. Has anyone out there had a "mild" case of CM-1 is this such a thing? All the research I have done appears to have multiple surgeries with multiple issues after the first surgery. Also, my daughter is not opening up to me about her thoughts or feelings and my husband well he just shuts down. I am not sure how to unite my family and how to prepare. I have looked at the questions to ask a neurosurgeon. I know that her's is very high up there but not sure of anything else. Can anyone give me advice? Please


#2

There are a lot of success stories. I am one of them. You don’t hear them very often because the people who are doing well don’t spend a lot of time on support sites - I wish they did so they could share their stories! Anyway, I had surgery in 2001. It did take about a year to fully recover. I had a follow up surgery to put in a VP shunt for an arachnoid cyst in 2004z I was released a year later and (knock on wood) I have not been to a neuro doc since! I know this doesn’t answer your questions but I wanted you to know there are success stories!


#3

There is no such thing as a mild case of Chiari. Her symptoms may be mild, but the condition if not treated properly can cause permanent damage. She needs to have a full spinal MRI to ensure she doesn’t have a syrinx or tethered cord, also needs to be tested/checked for EDS, CCI (cranial cervical instability), RO (retroflexed odontoid), and IIH. You also need to find a true Chiari specialist (I unfortunately don’t know of any in Alaska).


#4

My name is Emily my son Johnathan had Chairi surgery for Chiari 1 1/2 with an 8mm herination and a syrnix that ran from c-1 to t-12. When he was 7 years old. He is 27 now so just a little over 20 years ago now. He spent 10 days in the hospital. And after 4 years was completely released from his surgeon he told us he was in permanent remission. At the time I second quessed him and thought. Is there such a thing as permanent remission? But to this day he has had 0 residual effects and has had several MRIs that show everything is still in place.
My first questions to the neurosurgeon is how many patients have they treated with this type of Chiari and how successful have they been.
When researching Chiari make sure you only search for the type your daughter has. Some of the different types have lots of different symptoms. John had extreme symptoms headaches, leg tremors, body feeling like bugs crawling on him all the time, night terrors, at one point he could not walk. He had constant ear infections from the pressure, constant from infancy vomiting and food smelled and tasted funny to him. He slept very little and when he did his body would sometimes jerk which would wake him screaming. He was in hospital several times from birth to 5 with failure to thrive from the constant vomiting. Finally we found a Dr that would listen to us and he said let me do an mri on him and that is when they found it. I was almost relieved because i had been told everything from i was starving my child to I was neglecting him. The only thing that saved me from child protective services not taking him was Drs records where I had him there constantly begging them to find out what was wrong with him.
This is just my experience. There are many others on here who have had bad experiences as well.
This disease consumed many many years of our lives. Do not think it was an easy road because it was a long road and many nights of tears and frustration. But we have been very blessed to have the ending we have experienced with Chiari!!


#5

I agree either you have Chiari or you don’t. Maybe symptoms mild but most likely overtime would get worse. I’m so thankful for my decompression surgery 4/1/14. I’m definetly a success story! Get a second opinion always!


#6

I have a 15yr old who was diagnosed when he was 13, had decompression surgery about 3 months later when he turned 14. Our neurosurgeon and neurologist based their recommendations on his symptoms. He had pains in his head and his MRI showed CSF blockage. I would 1st like to say I sympathize with the feelings you are all going through. Initially it is a shock to everyone. Time helped, but also gain all the knowledge you can so you can converse w/ a Neurosurgeon and be your daughters advocate. And sites like this are great to connect w/ people. There are success stories! 2nd....research you Dr......not all neurosurgeons/neurologists have experience w/ this particular condition. You may have to travel a bit for the right Dr. For us, it was even more important to find the perfect neurosurgeon that specialized in Chiari's. He worked w/ my son for months before he recommended that surgery would be best based on his symptoms, the neurologist agreed. Best wishes for your family!


#7

When they say mild Chiari are they referring to her symptoms or size of herniation? 8mm herniation is not question, Chiari Type 1 Malformation. Not that size matters, but at least you don’t have to argue that point. Most important is, what are her symptoms and are they progressive? Also, very important to consult with a Chiari specialist, which are few, unfortunately. There can be other factors involved that a Neurosurgeon familiar with Chiari will know to look for, such as Syringomyelia, Tethered cord, Retroflexed Odontoid, Craniocervical Instability, EDS, POTS, etc… I have lists and links & information to share if you like. Let me know. Take care.


#8

I agree with others. What are her symptoms? As you get older they get worse… Also the right doctor is very important. My first one was not well versed with Chiari. I ended up having a second surgery with s Chiari specialist. He knew exactly what to do from what the first surgeon messed up. Please get a second opinion and learn as much as you can. Have your daughter started journal on her pain, issues and share with her dr. Good look, learn what you can and keep in touch with the group. It helps!!


#9

Our family learned what chiari was 3-2012. My 21 year old was diagnosed and decompressed in 12-2012. Surgery was done by a experienced neurosurgeon, not a so called Chiari specialist but a very experienced neurosurgeon with many years spent as a pediatric neurosurgron. My son is an extreme success story almost 3 years post op. He's a shining example of the skies the limit, don't let any diagnosis destroy your dreams. Now I am gearing up to have my decompression with the same neuro. My 17 year old has also been diagnosed but is not having any symptoms right now. I really agree with Jo comment above, we don't hear enough of the success stories. The successes are busy out living their life to the fullest just like our families first decompression surgery success. Our ns are in washington state. Gain knowledge and research your doctors.


#10

Hello, So much to learn. I live in Michigan, and ended up at the Cleveland clinic, in Ohio. No one in my area had enough knowledge to deal with my Chiari. My symptoms progressed incredibly quickly. I ended up needing 2 surgeries. I was placed in a medically induced coma, first Trans-oral decompression surgery thru my mouth, 2 days later, fusion in my spine. Basically, my spine needed to be rebuilt. My recovery took 18 months or more. I'm doing much better, however, I did lose some range of motion in my neck. My advice, find a surgeon who specializes in Chiari. The travel was a hassle and expense, however, the end results were well worth it.

I never heard the term "mild", I was informed I needed surgery and soon. My falling and pain were getting worse. The pain did not stop until after surgery. Please find a surgeon who is knowledgeable and knows exactly what you need to facilitate an outcome that is a Miracle...! I truly feel that Iam a walking miracle and Blessed. Take care, and keep the faith...

Sophie


#11

This is so sad. My sister was diagnosed 28/3/2013. There is no doctor that was willing to do decompression. They only put in intercranial shunts to regulate the brain fluid build up. Her pain levels escalated monthly. This year out of desperation she went to a different neurosurgeon. On 29/6/2015 I lost my sis. She is not dead but after the “routine” shunt procedure she developed extrapyrimidal symptoms which led to tardive diskinesia and she had an epileptic episode topped up with a few minor strokes.

My sis is 38 and basically quadroplegic. Please make sure the surgeon is experienced.


#12

Thank you all for replies. Thank you for the success stories. Jocelyn does have a syrnx it is the size of a pin head (pretty small) from what the NS showed me here on the screen. Right now, we are scheduled for a full spinal MRI. From my research and advice I am going to have her also tested for sleep apnea in addition to PODS and other things. She has hot/cold episodes in her sleep, she vomits small amounts after eating, pain in her back, and headaches. Once in about three months she woke up with no headache. The NS up here does a similar procedure for tumors but could not tell me how many patients he has seen for CM. At this point, I am prepared to send out all the films and reports to Chiari specialist. I also have been experiencing symptoms but I am afraid to get tested. I need to take care of her first. I pray of all those that have success for continue to success and I pray for those that struggle that relief is in sight. Again thank you for all your replies it means a lot to me

Lisa


#13


Hi,

I am also 17 and was in basically the same position. I did have surgery and am starting to feel a little better each day. She sounds like shes being incredibly brave as this is a huge thing to deal with. When I was diagnosed I didn't feel like talking about it for weeks. I felt that if I did talk about it, it would make it seem actually real! Tell her from me, that things can get better - showing emotion and talking about it helps a lot. I wish you the best of luck and hope
mommamikula said:

Thank you all for replies. Thank you for the success stories. Jocelyn does have a syrnx it is the size of a pin head (pretty small) from what the NS showed me here on the screen. Right now, we are scheduled for a full spinal MRI. From my research and advice I am going to have her also tested for sleep apnea in addition to PODS and other things. She has hot/cold episodes in her sleep, she vomits small amounts after eating, pain in her back, and headaches. Once in about three months she woke up with no headache. The NS up here does a similar procedure for tumors but could not tell me how many patients he has seen for CM. At this point, I am prepared to send out all the films and reports to Chiari specialist. I also have been experiencing symptoms but I am afraid to get tested. I need to take care of her first. I pray of all those that have success for continue to success and I pray for those that struggle that relief is in sight. Again thank you for all your replies it means a lot to me

Lisa


#14

If your daughter is having any symptoms, pain, discomfort then I wouldn't say it is mild. The whole point behind Chiari isn't normal, your brain isn't situated where it should be. To me that isn't mild. Also, the neurologist is not an expert in the field of Chiari. You want a neurosurgeon that specializes in Chiari. My son also has the syrinx that was very large before surgery and now has shrunk considerably. I don't know if your daughter has a syrinx with her Chiari or not? My son had his first decompression surgery at 14mos old and then a second 8 months later. He had 2 bacterial meningitis infections, one of which almost killed him. Two revisions, 3 lumbar drains and a VP shunt in and out. It was a rough go but he is so much better now. For the most part beside some side effects, he is happy functioning 5 year old boy. We are actually going this morning for a yearly MRI of his brain and spine to see how things are and what the syrinx is doing.


#15

One more thought......Dr. Eric Trumble is a top neurosurgeon in Orlando and our personal Angel. He specializes in Chiari's. You might want to reach out to him and see if he will take a look at the MRI's and give you some input. Just a thought.


#16

By the way, Mugsy is right!! Dr Eric Trumble is one of the top pediatric Chiari neurosurgeons. He is an amazing human being. I drive a couple hours (in Florida) to see him for my daughter and myself. My husband and I researched a lot a neurosurgeons and Dr Trumble was one of the top. He is double board-certified and to top it off he has the biggest heart. His staff is unbelievably awesome and they take their time with you.

I personally have not chosen to have decompression surgery. I am doing everything holistic and controlling inflammation, pain and pressure with natural supplements (enzymes and betalains). I take three doses a day and it keeps the pain and pressure away. It is working perfectly fine for me!! The neat thing is Dr. Trumble is backing me up on my decision, which I appreciate. Be careful with neurologists they don’t understand Chiari too well and jump to medication right away. There are other alternatives than medication trust me I’ve been down that road and I’m happy to be on all holistic products now (which has zero side effects). Anyhow the only issue I have now is my spine which stiffens up a little but I do a lot of physical therapy and massage therapy.
If you are in the process of getting mri’s, make sure your daughter has received a Cine MRI which is a video of the brain and shows whether or not there’s a blockage of the CSF in the brain. Mine is blocked on the right side. This is one of the reasons there is pressure and pain. But again if you take products that help the inflammation go down it relieves the pain and pressure, and in my case I no longer have the tingling in my hands and legs as I did over a year ago. Every case is different and the size of the Chiari is my understanding not relevant. Doctors go by symptoms. However keep in mind don’t jump into surgery try to do your homework and go to lectures be part of the CSFinfo.org foundation. They have given me so many resources and this is how I found Dr Trumble. God bless you and feel free to send me a friend request and I can give you my number if you wish to talk more.


#17

Hi! Welcome to the group! I HATE it when anyone calls Chiari “mild”! A herniation of 1cm can cause debilitating symptoms and crushing pain!! I was “only” 8cm herniated and went thru EVERYTHING possible from meds, injections, ablations, therapy, accupuncture, epidurals, cervical disc replacement, etc. It encompassed 5 years of my life! I am 44 with 4 children and a very busy farmer and RN Lactation Consulting. I finally exhausted everything and was on way too much pain medication. I finally, after 3 consults, found a Neurosurgeon I trusted and had decompression surgery in Feb. 2015. I have had absolutely NO complications! I was back to work as an RN at 6 weeks, painting a barn at 10 days ( not recommended) and am doing much better. Have weaned off all pain meds, but one a day. It CAN work. BUT! The question HAS to be, do the symptoms outweigh the risks!! Mine were. Like I said, it took me 5 years and exhausting everything to go to surgery. It was the most excruciating surgery I have EVER had ( way worse than childbirth). Make sure you TRUST your surgeon and don’t rush into it. I wish you the best of luck. She is in my prayers, you all are!! Katie


#18

Hi Toni, I hope your son's appointment went well today. She acutally does have syrinx but it is very small. I can only describe what I saw as a dot the size of nail head if not smaller. I am preparing to send out four copies of her reports to four different Neurosurgeons. Her neurosurgeon in Alaska does not specialize in Chiari.



Toni said:

If your daughter is having any symptoms, pain, discomfort then I wouldn't say it is mild. The whole point behind Chiari isn't normal, your brain isn't situated where it should be. To me that isn't mild. Also, the neurologist is not an expert in the field of Chiari. You want a neurosurgeon that specializes in Chiari. My son also has the syrinx that was very large before surgery and now has shrunk considerably. I don't know if your daughter has a syrinx with her Chiari or not? My son had his first decompression surgery at 14mos old and then a second 8 months later. He had 2 bacterial meningitis infections, one of which almost killed him. Two revisions, 3 lumbar drains and a VP shunt in and out. It was a rough go but he is so much better now. For the most part beside some side effects, he is happy functioning 5 year old boy. We are actually going this morning for a yearly MRI of his brain and spine to see how things are and what the syrinx is doing.


#19

I know what a difficult time this is for you. We went through all of this for my son in 2013. He was only 22 months old and we didn't really know if he was having symptoms of the chiari, but he was having seizures suddenly, non-verbal, and had central apnea (this was the one the doctors said made the decision on the surgery). We were so unsure about what to do, and the fact is many people have a Chiari but are free of symptoms and need to do nothing about it. My son's neurosurgeon, Dr. Keating with Children's National Medical Center, here in Washington, DC often made the point that it isn't necessarily about how long the chiari is (I believe anything under 9mm is considered mild) but rather what are the patient's symptoms. So it is unclear to me from your post if she is having any symptoms...but that is what should be driving your decision for surgery...not just the fact that she has a chiari...as I said, many people have chiari's and have no idea or no symptoms and therefor no problem. On the reverse, there are many that have symptoms but doctors don't connect the dots and they go undiagnosed or misdiagnosed. So really the diagnosis is a HUGE, first step...now I would address how severe her symptoms are. A good doctor is not going to operate on a chiari that is not causing any issue. So I would make all determinations after you have all necessary tests done, based on IF she is having symptoms.


#20

Hi Actually she has headaches daily and sometimes needs to sleep for hours until the pain subsides. She vommits after eating, has lower back pain. Her syrinx is very tiny but her tonsils have been measured at 6MM, 8.5, and the Neurosurgeon in Alaska measured the same scan at 11.65MM. We are on our way for a full spinal MRI now. I pray we could monitor this with medicine holistically, diet and exercise but her pain everyday is not something I want for her either

Lisa

Dobrien said:

I know what a difficult time this is for you. We went through all of this for my son in 2013. He was only 22 months old and we didn't really know if he was having symptoms of the chiari, but he was having seizures suddenly, non-verbal, and had central apnea (this was the one the doctors said made the decision on the surgery). We were so unsure about what to do, and the fact is many people have a Chiari but are free of symptoms and need to do nothing about it. My son's neurosurgeon, Dr. Keating with Children's National Medical Center, here in Washington, DC often made the point that it isn't necessarily about how long the chiari is (I believe anything under 9mm is considered mild) but rather what are the patient's symptoms. So it is unclear to me from your post if she is having any symptoms...but that is what should be driving your decision for surgery...not just the fact that she has a chiari...as I said, many people have chiari's and have no idea or no symptoms and therefor no problem. On the reverse, there are many that have symptoms but doctors don't connect the dots and they go undiagnosed or misdiagnosed. So really the diagnosis is a HUGE, first step...now I would address how severe her symptoms are. A good doctor is not going to operate on a chiari that is not causing any issue. So I would make all determinations after you have all necessary tests done, based on IF she is having symptoms.