Hi and welcome to the Chiari forum.
Regarding ur old sign on, did u contact the MODS for help?...U can still get them to reset the old account if u want, ....
Did u have a recent MRI?...did u have surgery for Chiari?
Hi Selma I will try to recuperate my old password and will try to understand so many abbreviations… starting with MODS????
I just had a new MRI and my syrinx is exactly the same size as it was 26 yrs ago….everything is the same thank God! except for a herniated disc in my lumbar …and one Neurologist told me I had herniated discs also in my neck …. I have an appointment today with another Neurologist that is relatively new in town and in from Cuba…he has performed al lot of surgeries for herniated discs and from what I have been told by his patients he is something else. I do not plan on having an op right now…I’ve learned my lesson and will go thru lots of opinions and DRs. before I make a final decision.
By the way YOUR opinion is very valuable to me!
I had an op April 7, 1987 for my syrinx…Dr. Thomas Norton did that op…excellent op I think so any many Neurologist have said so….He placed a shunt in the syrinx and then inserted it to the lower spine….kind of a bypass….it has worked fine…the syrinx itself did not decompress but as I mentioned above it has remained the same but not grown…to me that is so sweet!!!! No I have not done the ACH op and hope never will …. but anything can happen!
When I had the OP for the decompression of the syrinx, my right leg was absolutely numb!!!! no feeling at all …I was told when the cut to place the shunt they cut nerves the take time to heal….well 26 yrs later about 70 % has healed but in different places (some spots on my leg are numb and one can be standing on my foot and I can not tell but sometimes if my husband even brushes against my foot I can scream like if I was bitten by a snake…all of this has been very carefully explained to me by yet another Neurologist….
I tell you this because if this would not have happened (numbness in my leg) I would be almost normal (then what is normal, right?)
LOT’s to tell so little time!
English is my second language so if I misspell or do not make
very clear please fell free to ask me again and again and again….
Nice to be back!!!!
MODS= Moderators....use this link - http://www.medhelp.org/contactus.htm
I am surprised u got a shunt or a stent for ur syrinx most are too small for this.....since the fluid is being diverted I am sure that is y it has not grown......but the numbness could be bcuz u still have a syrinx and may still have an obstruction that too would play into y ur syrinx did not shrink in all this time....???
Ur English is great.,..no worries : )
No, it has not shrunk at all…still the same after so many years…once I was told by my (retired) Neurologist that I should consider having the Chiari op but my N did not operate anymore, so I was referred to a Chiari specialist in Phoenix AZ. When I finally saw him he asked me how i felt and I answered I felt quite well and that I lived a “normal” life so he sent me home with the idea that I should not undergo such a risky op just because my syrinx had not decompressed ….
When I say “normal” i am referring to feeling tingling in my extremities , numbness, headaches, cramps …but I do not know any better…this is how I was born and I am use to feeling like this always (not headaches) but meds take care of them… it was only when this got very very intense that I began to seek medical attention…I have had Scoliosis since I was 10 yrs old and what I complained about when I saw my Dr. at that age was all these symptoms which the Dr. associated them with the scoliosis.
After that when the symptoms intensified at age 24 is when I started to seek the help of a Neurologist ….MRI and boom syringomyelia …. now they had an explanation for all those yrs of feeling all these symptoms….
I would love to ask the Neurologist that performed the operation why he never ever gave me the alternative to have the Decompression surgery for ACH. He did not even mention ACH in fact I knew that Chiari caused .. syrinx caused the scoliosis after almost 5 yrs after having the decompression of the syrinx…grrrrr!
When u tolf the Dr u felt quite well, did u include the symptoms? Just bcuz u r dealing with pain and numbness does not mean u should continue to......
Did they check u for tethered cord?...scoliosis and bowel and bladder issues along with lower back and leg issues....
The other thing is the Chiari decompression allows more room for CSF to flow and many times the syrinx does shrink.....not all the time but more times it does...as the syrinx will stay as long as fluid is being diverted into it.....with u, the shunt is draining it, but the herniation is keeping it a status quo....same size etc.
U may do better asking a Chiari specialist what they feel is the best course of action at this point....
Que fue el Dr de Phoenix? Lisa
Hola Lisa te contestare en Ingles por respeto a los demás, pero si quieres que te conteste en español no hay problema pasaje tu email OK? Incluso por teléfono.....
Dr. Zambramsky was the doctor whom was recommended to me because of his valuable reputation. I had the app. at 9am and believe it or not it was 6 pm and the nurses had left me and my husband in the waiting room ...we were the only ones left to wait for the Dr. to see My husband wanted to leave when they started turning off the lights, lol..... we thought they had literally forgotten about us. When my husband started to shout "HELLOOOOOOOOOO, IS ANYBODY THERE" was when the doctor came out. I am sure we were misplaced hahahahahaa......
The doctor looked at my MRI's, he heard what I had to say and told me that if I felt quite well and my symptoms had not progressed in 16 yrs that I should leave my Chiari alone. Most Neurologist I've seen, have agreed to his opinion.
Sorry I had not answered your question but it has been a terrible month. I have had a lot of pain due to my herniated disc….but….My Neurologist is ordering a lot of exams to see if the pain comes from the actual disc or an enlargement of my “cyst” …he actually said I had hydromyelia instead of syringomyelia …who would of known that after 26 yrs I would end up with a dif diagnosis…still skeptic though ….
The N in Phoenix did ask me for all of the above you asked Selma except for tethered cord (I do not have that). I do have scoliosis … my spine is a perfect “S” …. I have never had bladder nor bowel issues…(that was 10 yrs ago) ..… but now I am having some symptoms that I do not like…and talking with the Neurologist here in Mexico I might be really thinking about having the surgery! OMG! I am really afraid!!!!!!!!!!!!!
I can relate to how u feel....all of us can,....it is normal to be afraid...the key is to find the right Dr.....u may need to see a few so u have something to compare to....
Educate urself as best u can so u will know when u have found the right one.