Hi, I have both Chiari and TC and have had the Chiari surgery but not the TC release yet, and feel it is something I may not be able to put off much longer as I am having issues.....
I know we have other members in the Chiari forum, and that is where u will want to post ur quesitons http://www.medhelp.org/forums/Chiari-Malformation/show/257?controller=forums&action=show&id=257&camp=msc
Thank you for your post,do you know any info about TC surgery? what are the risks of this operation?can the symptoms be worst after this surgery? my friend didn`t had the decompression,he is currently taking Gabapentin pills for a year now and it helps great with the pain,but sooner or later i think he will have to have a surgery.
I know of 2 friends that had the surgery and had success with it...one is a active member here and I am sure she will post a comment.
All major surgeries have risks, and this like the decompression I had is how our bodies react to the surgery overall and knowing what else may be going on.
What I know about the surgery is u can develop scar tissue and it can re-tether so a 2nd surgery could be needed......
Does ur friend have Chiari as well?...Ehlers-Danlos?...it is important to know what related issues he may have b4 surgery is considered and then to go with a well experienced Dr with all of the conditions, and not just a NS that can do the surgery.
May I ask, what type of pain, location and what other symptoms does he have?
i read some about Ehlers -Danlos,not too much, his chiari malformation appeared after an injury to the neck between C5-C6 discs in 2008, for which he had a surgery(the only one), he had seen lots of specialists doctors about chiari, and the best one he found it in london which prescribed this medicine at moment and said to wait and see how symptoms goes.I strongly belive somehow surgery for tethered cord might help him.
The pains he had before to take this medicine were,pins and needles in arms ,legs,severe headaches,numbness (he couldn`t sit down too much because otherwise woudl`ve lose sensation and unable to stand up),fainting...he tried lots of things like acupuncture( didnt help),massage therapy (that was good one for a while -until the therapeut suddenly `dissapeared` ) some therapy with stone put on your body that suppose to help..( very expensive and crap )...many others.
Chiari is a congenital condition and can be found after an accident......sometimes it can be acquired from an accident, but then the TCS would not seem to be connected....so, I would have to say the event caused testing and lead to the findings.
What surgery did he have for the chiari or the disks?, sorry I am not sure what u r referring to.
Did he have a syrinx?
Sounds like he could have POTS or ICP.....
It all depends on how tight the cord is if being decompressed or released is best, sometimes we need both....I am one that will need both.
It will take a chiari specialist well informed and experienced with Chiari to say which is what needs attention and will give him the best benefits.
Look at the list of Drs, and use it to research and visit a few...the list is not a referral just a list of drs the members here have been to and liked so not all may be true Chiari specialists.
Dear Selma please let me know your opinion about this letter that my friend received from his doctor regarding the chiari malformation.
"""" Further to our meeting in outpatients, I thought I would write and confirm the situation as I see it in regard to your diagnosis and your work.
There appear to be three issues all interacting; sleep apnoea, tonsillar ectopia and cervical myelopathy.
We have agreed that we should treat the sleep apnoea and depending up what symptoms persist, consider then surgery for the tonsillar ectopia and myelopathy in the form of a foramen magnum decompression and cervical laminectomy.""""
Its painful to know through what goes through a person who suffer from this condition.
Wish you well.
Hi...well I would have more questions, but agree sleep apnea should be addressed first as it can cause one to stop breathing and u want to treat that and see how one responds b4 surgery is considered as it would be a factor while under anesthesia as well.
Next my questions.....Does ur friend have a CSF obstruction, was a CINE MRI done. Even tho this may be related to an injury, many times Chiari is found after an injury and it is congenital and not acquired from the trauma itself....so, I would want all related conditions like syringomyelia, tethered cord,disk issues,ehlers-danlos......
JMHO and I do not know who this Dr was...but a 2nd opinion is always helpful when in doubt.
Thanks a lot for reply.
Yes he has CSF obstruction,i saw his MRI scan and his cerebellar tonsills are laying down.He had an injury on neck when he took a flight to china.( that happened in 2008 and i reckon his injury caused chiari ..not sure).he had a perfect normal life until this accident.
And like many others sufferers he`s been to many doctors some of them had no idea whats wrong with him,some misdiagnosed him saying he has a tumor brain...had been indicated to take depression tablets....he tried took his life because at that time no doctors belived him/or i should say they didnt know what causes all painful symptoms he has.
I somehow feel he has a tethered cord as well( i assumed from the symptoms he has....)and if he would try dethetering might solve his issues.
Have you decided about your surgery regarding thethered cord?
I have not had the TC release surgery....it is something I think about especially when I am having back pain, leg pain or bladder issues....but I also have Ehlers-Danlos and I am slow to heal and at a higher risk to form scar tissue post op which could mean it would re tether...and then nothing is resolved....so, I had the PFD surgery as the Drs felt I would get more benefits from it...and I have done well....I just wonder if and or when I may have to face the other possibility as well...til then I will hold off a bit more : )
Well my next question is, the Dr is he/she a Chiari specialist, and do u know is this acquired or congenital....I know many do not have ne symptoms until an accident...never realizing a thing....but it is still congenital...while others r acquired and merely from the accident...they would not have all the related issues., like tethered cord etc....unless that is the area of the injury....does he have a syrinx too?
I wonder wheather stem cell treatment helps more in recovery after trying a dethethering(been reading some stuffs...)
I dont know if he has a syrinx or not and wheather his chiari is congenital or showed up only after the accident...,the doctor he has seen is a chiari specialist.
I am waiting his next appointment with the doctor on 15 novemeber.
May i ask your age? ( he is 40 and i belive at his age if he would have decompression,healing process would be a risky one)
How was the surgery you had (before and after) and do still have any symptoms since your decompression.
Hi...I was a few months b4 my 50th birthday when I had surgery....the surgery helped with my major symptoms and issues, I do still have some symptoms, but they can be associated with my TC and EDS dx.....so, my PFD surgery was a success, but it was bcuz my Dr took into account that I had EDS and TCS....it is important to look at the whole pic to know how he will be affected....it is like dominoes, u topple one and the whole thing starts in motion....so u need to know what may move next and what to do it is does....
At 40 there should not be added risk.....he is younger then I was....unless he has another condition and it is not reveled b4 surgery that would be the only risk ...not so much his age. EDS is something that slows healing....so again unless he has something like that, he should be fine, and even with it as long as the Drs r aware and take precaution he will be fine...I was...and I was older.
Thought to share this link ( its about endonasal approach as an alternative to traditional decompression for Chiari...might worth)