Aa
Saw Chiari specialist--no real answers
We made a family vacation and drove from Tennessee to Milwaukee, nice town BTW, to see Dr. Heffez. All I know after all of that is that I am not a candidate for surgery and that every symptom I asked him about was a 'possibly'. My chiari is 5mm, I have tremors head to toe which is controlled by medication. He even asked me if a neurologist had actually seen these tremors because they are so well controlled. Duh, yeah. They're also why I lost 20 lbs. in one month. He said Chiari tremors usually can't be controlled. I also have muscle twitches and spasms throughout my body which is mostly controlled with meds. I have had swallowing difficulties for 15 or 16 years. I have to concentrate on almost every swallow. My ears rings constantly. He did say these are definite Chiari symptoms. Over the last few months I have been having diarrhea frequently, but only over the last three weeks or so, after my visit with Heffez, have I been nauseated every single day. I also asked him if I had any blockage of spinal fluid and he said he doesn't even look at that. Oooookaaaay. Other than the nausea/diarrhea and swallowing, everything suddenly hit within about a week back in the winter. All of the muscle and balance tests, etc, her performed were all normal. I had no tethered whatever or any of that stuff. Don't get me wrong, I don't want to have to have surgery, but I feel like I still have no answers. He asked why I was there and I said I wanted to know if Chiari could be playing a role in my problems. "Possibly". My PC doc and my neurologist don't think the Chiari is to blame and I don't know what to think. My neurologist just shrugged her shoulders and said she'd don't all the tests she knows to do. If it weren't for the meds controlling everything I couldn't function. Thank God for the meds. I guess I'm just venting because I am so frustrated and this is starting to get me down. Where do I go from here. Just give up and live with it?
I just wanted to say that I'm sorry that you didn't get the answers you were hoping for... I too have heard that Dr. H is a great NS but I also know how frustrating it is when you still feel like you are left in the dark with no idea of a direction to take. In fact, I felt like that a lot even after the surgery as there is not a lot of followup provided once it's done.
My suggestion..would you feel comfortable emailing Dr. H and telling him how you feel and that it is really important that you have someone to follow up with. Could he recommend someone for you to see? Or, at what point should you come back to see him if things start to get worse?
To me it sounds like you still have unanswered questions and I believe most NS are really good about you emailing them.
Keep your chin up!
Carolyn
My suggestion..would you feel comfortable emailing Dr. H and telling him how you feel and that it is really important that you have someone to follow up with. Could he recommend someone for you to see? Or, at what point should you come back to see him if things start to get worse?
To me it sounds like you still have unanswered questions and I believe most NS are really good about you emailing them.
Keep your chin up!
Carolyn
COMMUNITY LEADER
Did u ask Dr H for ne names of good NL's in ur area?....if not cal his office and ask.
U never know , but he may have a patient in ur area and knows a NL that worked well with him and the patient.
I know it is hard to stay positive...and all I can say is u will get thru this...we all have gone thru this...it is like chiari is broken in to stages b4 and after surgery we all seem to go thru them .....
May I ask, what meds u r on?....IBS issues could be a chiari symptom too, so, do not discount it until u look at side effects from the meds.Same with the nausea.
When I first got dx'd I thought , I do not have than many symptoms of chiari, I have many things going on for yrs, that r separate issues...only to learn, they r connected .
"selma"
U never know , but he may have a patient in ur area and knows a NL that worked well with him and the patient.
I know it is hard to stay positive...and all I can say is u will get thru this...we all have gone thru this...it is like chiari is broken in to stages b4 and after surgery we all seem to go thru them .....
May I ask, what meds u r on?....IBS issues could be a chiari symptom too, so, do not discount it until u look at side effects from the meds.Same with the nausea.
When I first got dx'd I thought , I do not have than many symptoms of chiari, I have many things going on for yrs, that r separate issues...only to learn, they r connected .
"selma"
I mentioned MS to Dr H and he very matter-of-factly said, "You do not have MS." I'll trust him on that one since he's the third Dr to tell me that. I think you're right, though. I do need a new NL because she just has me on meds and no follow-up appt in sight. Threw her hands up and said she'd done all she knows to do. She is sending me to a muscle specialist in a couple of months though. The meds for twitches/tingling/tremors are starting to hurt my stomach and now I've developed diarrhea and chronic nausea. I've handled it all pretty well, but I can't take this nausea and I don't know what's what anymore. Getting pretty down and just don't know what to do. Thanks for comments.
COMMUNITY LEADER
Hi...a NS, even a chiari NS treat...by doing surgery, if u r not a surgical candidate, then u need to find a very well informed NL...to monitor u, and see by doing more tests if u have nething else going on not chiari and chiari related....
I am not saying u do or do not have MS, but that too can be seen on MRI's...and chiari symptoms are very similar that sometimes u can be misdx'd with MS and it is chiari....and sometimes u can have both.
It may be an idea to see if Dr H has ne NL's he is aware of in ur area to work with u...in pain management and for general monitoring.
"selma"
I am not saying u do or do not have MS, but that too can be seen on MRI's...and chiari symptoms are very similar that sometimes u can be misdx'd with MS and it is chiari....and sometimes u can have both.
It may be an idea to see if Dr H has ne NL's he is aware of in ur area to work with u...in pain management and for general monitoring.
"selma"
I am so sorry you are here and so sorry you too are dealing with such frustration. Good thing is, everyone of us here are either where you are or have been where you are, so we all understand.
I met with Dr. Heffez in May and had my surgery 7/6/10. But let me say that when I left his office in May, it was with no plans other than "call in 2 weeks". What he wanted to do was have me wear a cervical collar 24/7 for 2 weeks to be sure that a bulging disc in my neck was not the culprit to my main complaint: neck & spine pain, and hypertonic cervical and thoracic muscles.
I wore the collar and it actually made things worse so I called after 10 days and they scheduled surgery as it was my LAST option. I think Dr. Heffez looks at things you have tried in addition to current symptoms. What I mean is, the more doctors you have seen, the more treatments you have tried, and the more your symptoms progress makes you more of a candidate for surgery. And like the others have said, surgery doesnt cure, so it is treated more of a "last resort" and let me tell you...... 3 1/2 weeks out of surgery I know why it is a "last resort" rather than "first resort". Recovery STINKS! I have had many surgeries in my life (gallbaldder and 8 - cancer related) and this has been the WORST of them all.
I dont regret it, in fact I look forward to everyday as I can tell everyday is a bit better than the last.
Let me share with your my list of symptoms:
CERVICAL:
□ Chronic muscle spasms
□ Spasm induced headaches
□ Bone pain
□ Sneezing = pain
□ Constantly having to “pop” or “adjust”
□ Hard and painful “lumps” or “nodules” behind ears
□ Pressure in neck, behind ears, behind eyes
□ Wake up w/ neck “pressed” forward and down
□ Electrical “shock”
□ Weight lifting, running, fast walking = neck pain
NEUROLOGICAL:
□ Exercise induced headaches sometimes leads to migraines
□ Very bright light = migraines
□ Periodic cold sensation and tingle “travels” thru head
□ Ringing and/or roaring in ears sometimes “pulsates”
□ Progressively worse short term “memory loss” affects daily activities
□ Difficult or frustrating to explain things. Can think it, see it, can’t “say” it
□ Lose sight (everything goes black)and light headed upon standing, or quick position changes often accompanied with pulsating “roar” in ears
□ Prolonged standing in one place sometimes causes above
□ Flashes of light when eyes are closed
□ Depth perception (stepping down) = stumble or fall
□ Throat tightens/closes up with extended talking or singing
□ Sometime lose balance when eyes closed
□ Have gotten disoriented a few times while driving
□ Light headed
THORACIC:
□ Chronic muscle spasms
□ Spasm induced headaches
□ Bone pain
□ Burning T7, T8, T9 aggravated by “correct” posture
□ Sneezing = T-spine “catch"
□ Laying on a flat surface = T-spine to “lock”
MISCELLANEOUS:
□ Hands cold & extreme sensitivity to cold weather, water, drinks, etc
□ Hands = tingle/numb feeling in ring and pinky fingers, palms and forearms
□ Strangle easily on liquids or excess saliva.
□ Chronic sinus drainage- throat and nose
□ Frequently bite tongue, cheek, or inside lip when chewing
□ More than 30oz of fluid a day = 30 min bathroom trips all day & night
□ Constipation (lifelong)
□ Wake up after about 5 hours of sleep with entire body tensed up and cannot keep it relaxed long enough to go back to sleep – almost every night
□ Face tingles if I take a deep breath
□ Constant need to yawn in the mornings, early afternoon and when singing
□ Burning ears
□ Burning hot one minute, freezing cold the next minute
Here are all the treatments I had tried:
THERAPIES: MEDICATIONS ALTERNATIVE
□ Physical therapy
□ Chiropractics
□ Active release therapy
□ Acupuncture
□ Acupuncture w/ electrodes
□ Myofascial release
□ Massage therapy
□ Heat therapy □ Icy/hot patches
□ Lidoderm patches
□ Capsain cream
□ Biofreeze
□ NSAIDS
□ Feldene
□ Flexeril
□ Baclofen
□ Vioxx
□ Celebrex
□ Neurontin
□ Cox-2 inhibitor
□ Zanaflex
□ Cymbalta
□ Lyrica
□ Ultram (Tramadol) □ Back brace
□ Inversion table
□ Muscle stimulator
□ TENS unit
□ Epson salt soaks
□ Heated wraps
□ Yoga
□ Pilates
□ Weight lifting
□ Exercise bands
□ Stretching
□ Cardio machines
□ Aerobics
□ Running
□ Walking
PROCEDURES:
□ Trigger point inject
□ Medial branch blocks
□ Thoracic epidurals
□ Cervical facet inject
And here is a list of all the tests performed:
Cervical MRI: 11/07 & 12/09
EMG: 11/07
Thoracic MRI: 12/09
Lumbar MRI: 4/10
Thoracic & Cervical x-rays 12/09
Full Spine X-ray: 2/10
Brain MRI w/CINE 4/10
CTA Neck & Head 4/10
Brain MRI with & w/o Contrast 5/10
I dont know what all treatments you have tried, doctors you have seen, or symptoms you have, but unfortunately the more you have the better candidate you are for surgery.
I met with Dr. Heffez in May and had my surgery 7/6/10. But let me say that when I left his office in May, it was with no plans other than "call in 2 weeks". What he wanted to do was have me wear a cervical collar 24/7 for 2 weeks to be sure that a bulging disc in my neck was not the culprit to my main complaint: neck & spine pain, and hypertonic cervical and thoracic muscles.
I wore the collar and it actually made things worse so I called after 10 days and they scheduled surgery as it was my LAST option. I think Dr. Heffez looks at things you have tried in addition to current symptoms. What I mean is, the more doctors you have seen, the more treatments you have tried, and the more your symptoms progress makes you more of a candidate for surgery. And like the others have said, surgery doesnt cure, so it is treated more of a "last resort" and let me tell you...... 3 1/2 weeks out of surgery I know why it is a "last resort" rather than "first resort". Recovery STINKS! I have had many surgeries in my life (gallbaldder and 8 - cancer related) and this has been the WORST of them all.
I dont regret it, in fact I look forward to everyday as I can tell everyday is a bit better than the last.
Let me share with your my list of symptoms:
CERVICAL:
□ Chronic muscle spasms
□ Spasm induced headaches
□ Bone pain
□ Sneezing = pain
□ Constantly having to “pop” or “adjust”
□ Hard and painful “lumps” or “nodules” behind ears
□ Pressure in neck, behind ears, behind eyes
□ Wake up w/ neck “pressed” forward and down
□ Electrical “shock”
□ Weight lifting, running, fast walking = neck pain
NEUROLOGICAL:
□ Exercise induced headaches sometimes leads to migraines
□ Very bright light = migraines
□ Periodic cold sensation and tingle “travels” thru head
□ Ringing and/or roaring in ears sometimes “pulsates”
□ Progressively worse short term “memory loss” affects daily activities
□ Difficult or frustrating to explain things. Can think it, see it, can’t “say” it
□ Lose sight (everything goes black)and light headed upon standing, or quick position changes often accompanied with pulsating “roar” in ears
□ Prolonged standing in one place sometimes causes above
□ Flashes of light when eyes are closed
□ Depth perception (stepping down) = stumble or fall
□ Throat tightens/closes up with extended talking or singing
□ Sometime lose balance when eyes closed
□ Have gotten disoriented a few times while driving
□ Light headed
THORACIC:
□ Chronic muscle spasms
□ Spasm induced headaches
□ Bone pain
□ Burning T7, T8, T9 aggravated by “correct” posture
□ Sneezing = T-spine “catch"
□ Laying on a flat surface = T-spine to “lock”
MISCELLANEOUS:
□ Hands cold & extreme sensitivity to cold weather, water, drinks, etc
□ Hands = tingle/numb feeling in ring and pinky fingers, palms and forearms
□ Strangle easily on liquids or excess saliva.
□ Chronic sinus drainage- throat and nose
□ Frequently bite tongue, cheek, or inside lip when chewing
□ More than 30oz of fluid a day = 30 min bathroom trips all day & night
□ Constipation (lifelong)
□ Wake up after about 5 hours of sleep with entire body tensed up and cannot keep it relaxed long enough to go back to sleep – almost every night
□ Face tingles if I take a deep breath
□ Constant need to yawn in the mornings, early afternoon and when singing
□ Burning ears
□ Burning hot one minute, freezing cold the next minute
Here are all the treatments I had tried:
THERAPIES: MEDICATIONS ALTERNATIVE
□ Physical therapy
□ Chiropractics
□ Active release therapy
□ Acupuncture
□ Acupuncture w/ electrodes
□ Myofascial release
□ Massage therapy
□ Heat therapy □ Icy/hot patches
□ Lidoderm patches
□ Capsain cream
□ Biofreeze
□ NSAIDS
□ Feldene
□ Flexeril
□ Baclofen
□ Vioxx
□ Celebrex
□ Neurontin
□ Cox-2 inhibitor
□ Zanaflex
□ Cymbalta
□ Lyrica
□ Ultram (Tramadol) □ Back brace
□ Inversion table
□ Muscle stimulator
□ TENS unit
□ Epson salt soaks
□ Heated wraps
□ Yoga
□ Pilates
□ Weight lifting
□ Exercise bands
□ Stretching
□ Cardio machines
□ Aerobics
□ Running
□ Walking
PROCEDURES:
□ Trigger point inject
□ Medial branch blocks
□ Thoracic epidurals
□ Cervical facet inject
And here is a list of all the tests performed:
Cervical MRI: 11/07 & 12/09
EMG: 11/07
Thoracic MRI: 12/09
Lumbar MRI: 4/10
Thoracic & Cervical x-rays 12/09
Full Spine X-ray: 2/10
Brain MRI w/CINE 4/10
CTA Neck & Head 4/10
Brain MRI with & w/o Contrast 5/10
I dont know what all treatments you have tried, doctors you have seen, or symptoms you have, but unfortunately the more you have the better candidate you are for surgery.
As surgery is not a cure then it is wise to get a few opinions so as to allow you to make an informed decision about going ahead with surgery, unfortunately it is difficult to successfully treat many of the symptoms of CM.
It is important to rule out other issues as well that may or may not be CM related.
Ray
It is important to rule out other issues as well that may or may not be CM related.
Ray
Good luck with your surgery and thanks for the encouragement. Hope all goes well. I'll tell you, you just can't understand until it happens to you what some people go through looking for answers!
Yes, he did have a CINE MRI of mine, I'd already had one and sent it, plus he did other MRIs. He looked at overcrowding, but when I asked him about fluid flow he said he didn't even consider that. I was surprised. Like I've said to others, I'm sure he's a great surgeon, and I'm glad he wasn't surgery happy, I just felt like I left not knowing really any more than when I went. I guess I felt that if I went to the best I would at least have answers and I really don't.
He did not say that he would follow up on anything. I will find a neuro closer to home (I saw the list of neuro's on this site) that knows a lot about it and let them monitor me. Like I told SelmaS, I am glad Dr. H wasn't surgery happy because I'm in no hurry for that, but I just wanted some firmer answers. Thanks for reply.
I should have said that Dr. Heffez did use a CINE MRI because I had already had one and sent it to him before he would agree to see me. After the MRIs he performed he did say that I had a lot of crowding. I do want to say that I was glad he wasn't surgery happy and didn't do surgery unnecessarily, I just felt he left me hanging with no plan. I guess in my own mind I find it hard to think that the tremors aren't Chiari and the spasms, etc. are when they all started at basically the same time...about a week apart. So is it or isn't is Chiari? I'm sure Dr. H is a great surgeon, but I was hoping for more answers. Yes, I had a barium swallow test years ago, and all went down well. I also had ae test where they run the tubes up your nose, you swallow a big bulb and they measure the strength of the swallow. She couldn't even tell when I was swallowing. It was rarely strong enough to measure. BTW, no one believes I have MS or anything similar. Dr. H flat out said that I don't have MS.
I take 80 mg 1X daily of Propranolol (Inderol) which controls blood pressure and heart rate and apparently is GREAT for tremors. Mine completely disappeared after a couple of days. I'm also on Clonazepam 5mg 3X daily, which is for anxiety but also is given to epileptics to help control their symptoms, for the twitches and spasms and electric feeling that I forgot to mention. They don't completely go away, but they almost do. Otherwise they go crazy.
Hang in there and don't give up! I was in a car accident almost a year ago when my symptoms started. I didn't know I had Chiari until the accident. I had symptoms that were misdiagnosed. My symptoms became worse and I had more symptoms of which nobody could diagnose. I was seeing a pain dr. and he ordered the proper tests to diagnose me. I then went to several drs who didn't want to touch me because it was a car accident that caused the Chiari to become symptomatic. Finally I found someone who wanted to help! I am scheduled for surgery on the 20th of Sept.
Keep your chin up and keep looking for a dr. who will give you answers!
Keep your chin up and keep looking for a dr. who will give you answers!
I just had surgery with dr h and with me he did look at overcrouding and he did a cine MRI.
Molly
Molly
I totally understand your frustration.
If as he said you have "definite Chiari symptoms" will he follow up and monitor your CM symptoms. Most good NS if they chose not to do surgery will monitor your condition as it can deteriorate.
Ray
If as he said you have "definite Chiari symptoms" will he follow up and monitor your CM symptoms. Most good NS if they chose not to do surgery will monitor your condition as it can deteriorate.
Ray
COMMUNITY LEADER
Hi...I understand ur frustration and I am also confused that u have meds that are controlling ur tremors....that said, u do have chiari symptoms, but not enuff for Dr H to consider surgery at this time.
It is possible to have something else going on in addition to chiari....and with the way the medical boards are watching all procedures being done....Dr H is right to proceed slowly.
NS do not dx...so u need a really good NL to get more testing done to see what IS going on...did u have an EMG?.....full spine MRI's?
I am surprised that Dr H does not do the CINE MRI....or look at CSF flow....but, overcrowding should be seen on a brain MRI...and it could be that is what he goes on as well as symptoms.
AS for the swallowing, have u had a barium swallow test?
Sorry I am asking more questions that answering right now....
"selma"
It is possible to have something else going on in addition to chiari....and with the way the medical boards are watching all procedures being done....Dr H is right to proceed slowly.
NS do not dx...so u need a really good NL to get more testing done to see what IS going on...did u have an EMG?.....full spine MRI's?
I am surprised that Dr H does not do the CINE MRI....or look at CSF flow....but, overcrowding should be seen on a brain MRI...and it could be that is what he goes on as well as symptoms.
AS for the swallowing, have u had a barium swallow test?
Sorry I am asking more questions that answering right now....
"selma"
Vent away.... Nothing is more frustrating than knowing that something is wrong and no one else seems to acknowledge it. Most of us know that feeling all too well... so sorry to hear this is happening to you now.
What meds do they have you on to 'control' these symptoms?
Wolf
What meds do they have you on to 'control' these symptoms?
Wolf
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
