Chiari Online Support Group

Advice is needed


#21

Dr. Trumble is who we saw and who diagnosed my son with Chiari when we lived in Florida


#22

Don't automatically assume that "symptoms" come from the Chiari (most don't) There is far less surgery done these days than even a few years ago. There are in fact fewer "Chiari specialists" as they found the scar tissue from decompression causes some pretty long term symptoms. As Dr. Trumble said in another thread he doesn't consider patients until all neurological options and treatments have been exhausted.

Some things have changed and still the "advocacy sites" continue with the old stuff that pushed what too many folks into unnecessary surgery. Cine MRI's being one of them. There other procedures that are far more accurate and less dependent on positioning and posture to determine whether the headaches are indeed caused by flow issues. MRIS can only eliminate some physical causes.

The idea of building a team is exactly what needs happen. Most Alaskan Medical centers have an relationship with Seattle childrens. I know that Seattle Childrens still does clinic up there. I would suggest getting into the next one. Its a great start....


#23

TJ1 is right about other possible causes for pain besides Chiari. I have a few friends that had the decompression surgery and are still suffering. They found they have other issues going on in their cervical spine and so on. Chiari has many roads and everyone is different.


#24

Hi I am 24 and I just recently had decompression surgery done on September 8th and so far I have no regrets. Mine was 5mm and my neurosurgeon said that it was severe enough for surgery so he did a craniectomy (that may not be spelled right) and also a duraplasty. I’m not trying to convince you that your daughter needs the surgery. I had just about everything checked on my body that could be checked for my symptoms (severe headaches, extreme weakness, and extreme trouble sleeping). So it was narrowed down to my chiari malformation. If it comes down to the chiari malformation for her then I would definitely recommend the surgery. But that is just my recommendation (I’m definitely not a dr.). And also I’m sure you, your husband and your daughter all have mixed emotions about it, so I know that surgery is a big decision. I don’t know what state yall live in, but I would recommend my neurosurgeon (Dr. Joel D. Pickett in Huntsville Alabama at the Spine and Neuro Center). He did an amazing job on my surgery, and like I said earlier he did a duraplasty too and I haven’t had any CSF leakage whatsoever. I hope yall can find out what the problem is. I will definitely keep all of you in my prayers. God bless you all.


#25


Hi Jenna, reading your note, it give me an idea to ask you some more information, I am seeing my neuro surgeon for second opinion, would you let me know what else do I need to ask, as the 1st neuro surgeon never told me about all of this information EDS,Ci, RO ..what all of those please?
Jenna said:

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.

#26


Hi Theere, if you are not taking any medication what holistic therapy are you taking at the moment, as I am taking supplements, massage and accupunture but that still does not help me. I would like to share with you.. I hate taking medication due to the side effect in a longer term used of the medication


Jozy said:

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.

#27

I have CM1 with 9mm herniation. Two neurosurgeons, based on my symptoms, called my CM minor. I don’t think the number of mm matters as much as the symptoms.
Your daughter is the same age as mine and it’s not a fun age to begin with. Maybe ask her to keep a journal of her thoughts, questions, and symptoms to share with the doctors. If she does that it will benefit her and hopefully with some time, she will open up to you too.
If her symptoms aren’t horrid you could wait on the Doctor to “build a team” but if her symptoms are pretty bad (interrupting her lifestyle) I wouldn’t wait on any doctor for five minutes! I’ve spent five months listening to numerous neuros tell me to wait and I can no longer walk without use of a walker!! There’s a list on this site somewhere of doctors. Find it and put it to use. You can also send her MRI’s to some places for further opinion. I find it absolutely necessary to also get the MRI report (the radiologist details what he sees and your doctor will have a copy of it.
Good luck and hugs and prayers from Texas!!


#28


Dear Joyzy, where do you buy your holistic supplement enzyme and batalains and how much does it cot you, please let me know your email so that I can contact you, I am seeing my second NS on the 14th of Jan, so how are you coping now, don't you have headache or dizzyniss, please come back to me, at present I have massage and putting magnesium ooil, taking grapeseed extract omega 3, helping me a lot but I still suffering headache first thing in the morning and my baqlance still being effected when i hve a movement, so please do come back to me aqbout this enzyme and the batalains---thank you Jozy
b2wc said:


Hi Theere, if you are not taking any medication what holistic therapy are you taking at the moment, as I am taking supplements, massage and accupunture but that still does not help me. I would like to share with you.. I hate taking medication due to the side effect in a longer term used of the medication


Jozy said:

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.

#29


JoyZy - I take beeetroot extract each day-- that should be the same wouldn''t it?
b2wc said:


Hi Theere, if you are not taking any medication what holistic therapy are you taking at the moment, as I am taking supplements, massage and accupunture but that still does not help me. I would like to share with you.. I hate taking medication due to the side effect in a longer term used of the medication


Jozy said:

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.