Aa
Greetings from Milwaukee
Had MRI (#6) this morn then saw NL, then NS. Between the 2 docs we were there almost 2 hours as they explained and went over all films and tests with me. They were WONDERFUL and so determined to help me.
Here is summary, just the details: Lots of bulging discs but one C3-C4 is causing a narrowing on spinal canal, restricting CSF flow. He is addressing this first. I have to wear a cervical collar 24/7 for 2 weeks, but no restrictions as far as work goes.
Chiari Malformation has blocked off most of the cervical opening at the base of my skull, also blocking most CSF flow.
Plan is to wear collar then call him in two weeks giving him symptom update. Depending on what/how/if collar affects any symptoms as to the next step. He said that it is possible to have to correct both Chiari and disc surgically, and results of this collar will tell him more.
He also asked if I would enter in his study he is conducting over the next few years. Gathering data from as many cases as possible will help with educating NS's and NL's all over the country on how to COREECTLY test and dx Chiari, rather than ignoring it.
Here is summary, just the details: Lots of bulging discs but one C3-C4 is causing a narrowing on spinal canal, restricting CSF flow. He is addressing this first. I have to wear a cervical collar 24/7 for 2 weeks, but no restrictions as far as work goes.
Chiari Malformation has blocked off most of the cervical opening at the base of my skull, also blocking most CSF flow.
Plan is to wear collar then call him in two weeks giving him symptom update. Depending on what/how/if collar affects any symptoms as to the next step. He said that it is possible to have to correct both Chiari and disc surgically, and results of this collar will tell him more.
He also asked if I would enter in his study he is conducting over the next few years. Gathering data from as many cases as possible will help with educating NS's and NL's all over the country on how to COREECTLY test and dx Chiari, rather than ignoring it.
His wait and see statement was about the cervical stenosis i have, he didnt want to go to fast through things....plus i have minimal blockage and he wanted to play the waiting game to see if it ever bothered me..
i have a soft brace- he said that was OK and I had my NL even look at it to make sure it was OK...
yes i had my decompression in Oct of 09, what i meant by needing a shunt is 19 days after having my decompression i developed hydrocephalus so now i am plessed with this &*%$^ unit inside me....( it is one of the complications and it does NOT happen to everyone it happens to about 1% of people) for all purposes i would say my chiari surgery was a SUCCESS! I have a few lingering issues but NO where near the way they were before...
i have a soft brace- he said that was OK and I had my NL even look at it to make sure it was OK...
yes i had my decompression in Oct of 09, what i meant by needing a shunt is 19 days after having my decompression i developed hydrocephalus so now i am plessed with this &*%$^ unit inside me....( it is one of the complications and it does NOT happen to everyone it happens to about 1% of people) for all purposes i would say my chiari surgery was a SUCCESS! I have a few lingering issues but NO where near the way they were before...
You know..from my experience combined with what I've heard from others..it seems that how they word things just seem to be more of a matter of who you are getting the info from. To put it in perspective, when I had my MRI done b/c they thought it was MS there wasn't even a mention of Chiari at all from the radiologist. It was actually found by my NS who didn't even put a mm # on it..but what he did show me was the overcrowding and the fact that there was barely any room for fluid to get through. That, along with my severe symptoms was enough for him. So I guess what I am saying is take note of what the Chiari specialist is saying and don't worry too much about the rest of the drs...b/c they are not as informed about Chiari. Now, why he is doing the neck brace thing with you, I don't have any idea...but my advice is that if you have this unresolved questions about why he is taking this route...then honestly, I would just ask him when you call him. Have all these questions written down and make sure you get all the answers. Being such a well known Chiari specialist, I am sure he has his reasons but it really helps for you to know why too!!
Good luck
Carolyn
Good luck
Carolyn
North, what did you mean when you said Dr. Heffez said to you "lets just wait and see what happens..." What was he waiting for?
And what do you mean by "needing the shunt"
And what kind of brace do you have?
So have you had surgery?
Sorry for all the questions, I was just a little confused, and very interested.
Carolyn, what he said was for me to call in 2 weeks to tell him what the collar has done for me. Then I suppose they will tell me what is next. The thing that kinda makes me a bit uneasy is there is no follow-up appt yet and even though he asked me to participate in his study, I am afraid he is gonna come back and say nothing he will do "right now".
The collar has helped with the muscle pain in my neck, not much for bone pain, but certainly making muscles feel better. I have such a looooong neck that it is probably tired of holding up my big ole brain. LOL
Also I get confused with some terminology such as if 3 - 5mm herniation is present, and info on the internet says "surgical intervention" is necessary for anything over 5mm, why docs say my 7mm is "slight" Now I know mm is tiny, but they are the ones who decided 3 - 5mm was enough.
AND why the docs and radiologist all say "minimal crowding of the posterior fossa" but Dr. Heffez showed me that there is only a tiny ring of fluid getting around my herniation. The spinal canal looked almost completely blocked. I would think "minimal" would be just that, but perhaps it has to be completely closed off before they consider it "severely crowded"?
And what do you mean by "needing the shunt"
And what kind of brace do you have?
So have you had surgery?
Sorry for all the questions, I was just a little confused, and very interested.
Carolyn, what he said was for me to call in 2 weeks to tell him what the collar has done for me. Then I suppose they will tell me what is next. The thing that kinda makes me a bit uneasy is there is no follow-up appt yet and even though he asked me to participate in his study, I am afraid he is gonna come back and say nothing he will do "right now".
The collar has helped with the muscle pain in my neck, not much for bone pain, but certainly making muscles feel better. I have such a looooong neck that it is probably tired of holding up my big ole brain. LOL
Also I get confused with some terminology such as if 3 - 5mm herniation is present, and info on the internet says "surgical intervention" is necessary for anything over 5mm, why docs say my 7mm is "slight" Now I know mm is tiny, but they are the ones who decided 3 - 5mm was enough.
AND why the docs and radiologist all say "minimal crowding of the posterior fossa" but Dr. Heffez showed me that there is only a tiny ring of fluid getting around my herniation. The spinal canal looked almost completely blocked. I would think "minimal" would be just that, but perhaps it has to be completely closed off before they consider it "severely crowded"?
I know how you feel...my gait was so bad b4 surgery that ppl couldn't help but notice..
Everyone would think I had injured myself somehow and how easy it would have been to just say "yes, I have..." it was so awkward going into the whole story and seeing their eyes glaze over... Some of them want to know more and others you know just want to make a quick exit. So I totally understand!!
I hope the brace is helping you..like Shannon said, have they decided on surgery? Or are they waiting to see what the brace does?
Carolyn
Everyone would think I had injured myself somehow and how easy it would have been to just say "yes, I have..." it was so awkward going into the whole story and seeing their eyes glaze over... Some of them want to know more and others you know just want to make a quick exit. So I totally understand!!
I hope the brace is helping you..like Shannon said, have they decided on surgery? Or are they waiting to see what the brace does?
Carolyn
hey said the exact same thing to me prior to surgery- when i was finally able to get back and see him he said, lets just wait and see what happens...while i have cervical stenosis, and issues c4-c7, he didnt want to do to much for me right now because of the other issues i have (needing the shunt)...i do however have a brace and had worn it recently because whatever the PT guy did to my neck caused me more issues and even caused my nose to go numb..(which is now going on 3 weeks--NO explaination as to why,either had MRI,MRA and everything came back OK -as far as i know anyway- but according to NL all is good! ) i think he was more concerned about a stroke then anything....but anyway good Luck survivor08-hope the brace helps your neck- and good luck when you have surgery, did they give you a date yet?
~TC and Best Wishes
~TC and Best Wishes
Excited about surgery? Heck yeah! Only people who have suffered endless and exhausted all other options can relate to this. I fit this category and I am sure 95% of us here fit that category.
I was disappointed he wanted for me to do this collar for 2 weeks then call. They didnt even set me a return appt at that time. Renee' said they would see what collar does before deciding what is next.
While I appreciate the conservative approach, I told him I wanted him to "cut it all out, throw it all on the floor and smash it with a hammer". He laughed.....but I wasnt kidding......
Anyway, the only thing I have noticed so far is the ringing in my ears is actually louder.
I also didnt wear it to church today for few reasons......I didn't feel like having to explain it over and over and over again.............I sing in the choir and didnt want people to think I was vying for attention - even though I mostly dont care what others think, that is their problem, but it still entered my mind......... and..........it didnt match my outfit.......LMBO
But, gonna stick it out for the 2 weeks cuz it is one thing I havent tried, and I have nothing to lose by doing it, and maybe it WILL help.
I was disappointed he wanted for me to do this collar for 2 weeks then call. They didnt even set me a return appt at that time. Renee' said they would see what collar does before deciding what is next.
While I appreciate the conservative approach, I told him I wanted him to "cut it all out, throw it all on the floor and smash it with a hammer". He laughed.....but I wasnt kidding......
Anyway, the only thing I have noticed so far is the ringing in my ears is actually louder.
I also didnt wear it to church today for few reasons......I didn't feel like having to explain it over and over and over again.............I sing in the choir and didnt want people to think I was vying for attention - even though I mostly dont care what others think, that is their problem, but it still entered my mind......... and..........it didnt match my outfit.......LMBO
But, gonna stick it out for the 2 weeks cuz it is one thing I havent tried, and I have nothing to lose by doing it, and maybe it WILL help.
Yeah he measured my hands and noted shoe size as well. Its for an on-going study he's doing. My biggest problem in my neck is C4/C5 is bulging inward to the right and C5/C6 is bulging howard to the left causing cervical stenosis and csf blockage. However, my blockage and over-crowding from the chiari were more of a concern than the neck issues. Dr. Heffez did say that once i had recovered from the decompression surgery, we could try wearing the collar or traction to see if that would help before we decided on fusion surgery for the neck. I'm just so happy to have a dr that actually listens and takes time to explain things and is willing to work with his patients without just throwing meds at you. I only have two weeks left til my surgery, and its SO weird to be excited about having "brain" surgery but i'm ready! I know its not a cure but if it gives me any relief it will be worth it! My symptoms have done nothing but get worse and worse. I hope the collar helps! Blessings ~ Shannon
Do you have disc issues in your neck too? I think most of us do to some degree. Every single disc from C1 - T12 is either dried up or bulging. I have one or two bulging in lumbar but don't reckon they are bothering me. Or they could be, but with everything else hurting so much, dont notice it. LOL
I havent noticed too much difference yet, except when I was sewing earlier, my neck didnt hurt as bad.
Did Dr. Heffez measure your hands and ask your shoe size? I have never had anyone ask or do that before. Interesting.
I havent noticed too much difference yet, except when I was sewing earlier, my neck didnt hurt as bad.
Did Dr. Heffez measure your hands and ask your shoe size? I have never had anyone ask or do that before. Interesting.
So glad you liked dr. H! I may end up having to wear the collar too but he's gonna do decompression surgery first. Hope you get some relief with the collar! Blessings ~ Shannon
thats awesome! glad you went and got seen dr.h is awesome
sorry you had neck pain hopefully it helps in the long run!
sorry you had neck pain hopefully it helps in the long run!
COMMUNITY LEADER
Hi..well sounds like they gave u a thorough going over....which is what many do not do!!
I hope the collar works for u....and u feel some relief.
"selma"
I hope the collar works for u....and u feel some relief.
"selma"
I forgot to mention that Dr. Heffez wants me to be tested for P.O.T.S. I pleaded "no" cuz the table tilt test is awful and I dont want to pass out........ He just laughed. I like him cuz that is what I would have done too. LOL
He said my newly acquired "dumbness", easily disoriented and confused, and constantly inability to recall words or speak what is in my head is def Chiari related.
He said my newly acquired "dumbness", easily disoriented and confused, and constantly inability to recall words or speak what is in my head is def Chiari related.
Early this morning I woke up because I felt this "fizzling" (for lack of a better descriptive word) and "sliding" (ditto) sound in my neck that went on for a few minutes. I was thinking "Hey! Maybe that bulging disc is going back in place!" And most of this morning my neck felt really good!!!!
That is right up till I got in the cab to head to the airport. From then on, neck is killing me. Especially on the plane.
BUT, I am still wearing the collar as I want to give the full 2 weeks, after all it has only been 24 hours.
That is right up till I got in the cab to head to the airport. From then on, neck is killing me. Especially on the plane.
BUT, I am still wearing the collar as I want to give the full 2 weeks, after all it has only been 24 hours.
Hello
Well that is great news that you are getting some information and good drs to help you! Of course, the spinal narrowing and CSF blockage isn't good news but at this point I'm sure you are just relieved to get some help!
I have heard that the collar does really help some ppl but I have heard it you take it off that the symptoms worsen very quickly. So it is good that you are wearing it 24/7!! Please keep us updated and how you feel. That is great that you may be participating in a study, I love to hear that!
Carolyn
Well that is great news that you are getting some information and good drs to help you! Of course, the spinal narrowing and CSF blockage isn't good news but at this point I'm sure you are just relieved to get some help!
I have heard that the collar does really help some ppl but I have heard it you take it off that the symptoms worsen very quickly. So it is good that you are wearing it 24/7!! Please keep us updated and how you feel. That is great that you may be participating in a study, I love to hear that!
Carolyn
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