Risks of NOT having decompression surgery?

General
1

I was diagnosed in January with having CM1 (6mm herniation) and the list of sympotoms that I had then as compared to now is intimidating. Whereas in January my biggest issues were "brain fog", dizzy spells, warmness and tingling on right side of face,... over the course of the last four months I have become extremely hyper-sensitive to light and sound.I have also had to wear a heart monitor for 21 days (24/7) because she wants to make sure that what's going on in my head is not effecting my heart. However,...on top of all this,... I seem to have come down with bronchitis, which cause laryngitis on top of it, and am now on my 10th day of trying to recover from that! Since there has been no improvement with the respitory issue, they took a CT of my chest on Friday, and we're waiting for those results. Bottom line,...with the growing list of CM1 symptoms, and NOW adding bronchitis and larygitis to "the list" this is b y far the socket I have ever been in my life right now.

I attended a Chiari support group meeting in Reading, PA, which was very helpful,...just to confirm that I wasn't going crazy, if nothing else. However, all but one that attended had the decompression surgery, and there was a wide variety of results from the procedure. I look online and see the stats that only about 50% of those who go through the surgery actually experience any relief from their symptoms,, and as a rookie at this,...that sounds like terrible odds to risk such an evasive surgery.

Right now, my "battle plan" is:

1. See a CM specialist in NJ on May 4 to go over the MRI results I had back in January. There are apparently NO CM experts in Central, PA (for adults) which is where I live. Although Hershey Medical has a good rep for PEDIATRIC CM patients,.... at the support group meeting, no one could recommend that I go to Hershey for this as a 55 yr-old male w/CM1.

2. Apply to get an appointment at the Chiari Institute in NY for a full evaluation.

3. Attend the CM convention in Arlington, VA this July to become more informed.

So now,... my question is,...what are the risks of my NOT having the decompression surgery done? Is there any truth to the risk of paralysis if I do't have the surgery? I'm realy feeling stuck netween a rock and a hard place.

Thoughts anyone?

-Brad Hawkins

Landisville, PA

2

Paralysis is related to significant syrinx from my understanding due to the nerve damage it causes to the spine.

So I think if no syrinx = no risk of paralysis

Hope you get over your chest problems soon! Coughing never good for our headaches !

3

Hi Brad,

I was diagnosed too late and almost became a quadripledgic. I tell you this because ignoring CM has dire consequences. As I look back, my only pre surgical symptoms were: A sore neck(I thought I was working too hard), Headaches(written off because my mother also had migraines) & balance problems(which I had always bumped into stuff, My Grandmother called me Grace). I never thought I could be sick. I played all sports and ran & swam daily. I had previous Cranial Nerve surgery for ear pain. I went back to the NS and told him my neck was hurting , but everything else was fine. He did a Xray & a Cervical MRI and called me while driving on the hwy & told me to pull over. My spinal fluid was what we later determined to be 98% blocked & my veterbrae were literally being pushed out of my spinal column from the CSF blockage. My surgery was 16 hours long. They preformed a Chiari Decompression surgery with Crainectomy & Laminectomies on C1-C6. The nerves in my neck and back of my head was held open for 16 hours. I will always be in constant pain. The nerves were stretched to long. I have a bent optic nerve. I had a Spinal Fluid leak that turned into chemical meningitis & had motion sickness for 6 months, because my Mastoid Bone was broke, I fell & got a concussion & had blinding headaches & post concussion syndrome & have broken my ankles 4 times in a year & 1/2, because I can't look down when I walk I also have dysphagia . My whole life was destroyed. This is what happens when you wait too long to be treated. Please don't let this happen to you. Your Cranial Nerves control your whole bodily functions. I know I sound like a mean person, but I don't want you or anyone to suffer the way I have and do daily. My NS is in Pittsburgh & is the "God Father of modern NS & has developed most current neurosurgical techniques. I also worked for BC & BS & we always sent adults to Pittsburgh for NS. I was sent there after seeing 52 specialists and UVa Med ctr. sent me to Dr Peter Jannetta because he is so amazing. Let me know if you need a referral or some contacts in Pittsburgh. I line in Va, but will go there in a second.

Tracy Z.

4

I didn't have a syrinx.....so that theory isn't correct.

TracyZ said:

Hi Brad,

I was diagnosed too late and almost became a quadripledgic. I tell you this because ignoring CM has dire consequences. As I look back, my only pre surgical symptoms were: A sore neck(I thought I was working too hard), Headaches(written off because my mother also had migraines) & balance problems(which I had always bumped into stuff, My Grandmother called me Grace). I never thought I could be sick. I played all sports and ran & swam daily. I had previous Cranial Nerve surgery for ear pain. I went back to the NS and told him my neck was hurting , but everything else was fine. He did a Xray & a Cervical MRI and called me while driving on the hwy & told me to pull over. My spinal fluid was what we later determined to be 98% blocked & my veterbrae were literally being pushed out of my spinal column from the CSF blockage. My surgery was 16 hours long. They preformed a Chiari Decompression surgery with Crainectomy & Laminectomies on C1-C6. The nerves in my neck and back of my head was held open for 16 hours. I will always be in constant pain. The nerves were stretched to long. I have a bent optic nerve. I had a Spinal Fluid leak that turned into chemical meningitis & had motion sickness for 6 months, because my Mastoid Bone was broke, I fell & got a concussion & had blinding headaches & post concussion syndrome & have broken my ankles 4 times in a year & 1/2, because I can't look down when I walk I also have dysphagia . My whole life was destroyed. This is what happens when you wait too long to be treated. Please don't let this happen to you. Your Cranial Nerves control your whole bodily functions. I know I sound like a mean person, but I don't want you or anyone to suffer the way I have and do daily. My NS is in Pittsburgh & is the "God Father of modern NS & has developed most current neurosurgical techniques. I also worked for BC & BS & we always sent adults to Pittsburgh for NS. I was sent there after seeing 52 specialists and UVa Med ctr. sent me to Dr Peter Jannetta because he is so amazing. Let me know if you need a referral or some contacts in Pittsburgh. I line in Va, but will go there in a second.

Tracy Z.

5

Coughing definitely brings on more head aches, especaily to the back of the head.I was just geting use to how to handle the CM1 symptoms, and then had THIS added to the mix. Sure hoping (in a weird way) this this IS bronchitis, and not yet another CM1 symptom being added to "the list".!

Flowerbun said:

Paralysis is related to significant syrinx from my understanding due to the nerve damage it causes to the spine.

So I think if no syrinx = no risk of paralysis



Hope you get over your chest problems soon! Coughing never good for our headaches !
6

OMG!! This is terrifying news. SOOOOO very sorry to hear about your condition! So,.......can I get your input on my tentative "battle plan" that I laid out? Any changes you would suggest that I should possible make?

TracyZ said:

Hi Brad,

I was diagnosed too late and almost became a quadripledgic. I tell you this because ignoring CM has dire consequences. As I look back, my only pre surgical symptoms were: A sore neck(I thought I was working too hard), Headaches(written off because my mother also had migraines) & balance problems(which I had always bumped into stuff, My Grandmother called me Grace). I never thought I could be sick. I played all sports and ran & swam daily. I had previous Cranial Nerve surgery for ear pain. I went back to the NS and told him my neck was hurting , but everything else was fine. He did a Xray & a Cervical MRI and called me while driving on the hwy & told me to pull over. My spinal fluid was what we later determined to be 98% blocked & my veterbrae were literally being pushed out of my spinal column from the CSF blockage. My surgery was 16 hours long. They preformed a Chiari Decompression surgery with Crainectomy & Laminectomies on C1-C6. The nerves in my neck and back of my head was held open for 16 hours. I will always be in constant pain. The nerves were stretched to long. I have a bent optic nerve. I had a Spinal Fluid leak that turned into chemical meningitis & had motion sickness for 6 months, because my Mastoid Bone was broke, I fell & got a concussion & had blinding headaches & post concussion syndrome & have broken my ankles 4 times in a year & 1/2, because I can't look down when I walk I also have dysphagia . My whole life was destroyed. This is what happens when you wait too long to be treated. Please don't let this happen to you. Your Cranial Nerves control your whole bodily functions. I know I sound like a mean person, but I don't want you or anyone to suffer the way I have and do daily. My NS is in Pittsburgh & is the "God Father of modern NS & has developed most current neurosurgical techniques. I also worked for BC & BS & we always sent adults to Pittsburgh for NS. I was sent there after seeing 52 specialists and UVa Med ctr. sent me to Dr Peter Jannetta because he is so amazing. Let me know if you need a referral or some contacts in Pittsburgh. I line in Va, but will go there in a second.

Tracy Z.

7

Meaning paralysis can still happen without a syrinx?

TracyZ said:

I didn't have a syrinx.....so that theory isn't correct.

TracyZ said:

Hi Brad,

I was diagnosed too late and almost became a quadripledgic. I tell you this because ignoring CM has dire consequences. As I look back, my only pre surgical symptoms were: A sore neck(I thought I was working too hard), Headaches(written off because my mother also had migraines) & balance problems(which I had always bumped into stuff, My Grandmother called me Grace). I never thought I could be sick. I played all sports and ran & swam daily. I had previous Cranial Nerve surgery for ear pain. I went back to the NS and told him my neck was hurting , but everything else was fine. He did a Xray & a Cervical MRI and called me while driving on the hwy & told me to pull over. My spinal fluid was what we later determined to be 98% blocked & my veterbrae were literally being pushed out of my spinal column from the CSF blockage. My surgery was 16 hours long. They preformed a Chiari Decompression surgery with Crainectomy & Laminectomies on C1-C6. The nerves in my neck and back of my head was held open for 16 hours. I will always be in constant pain. The nerves were stretched to long. I have a bent optic nerve. I had a Spinal Fluid leak that turned into chemical meningitis & had motion sickness for 6 months, because my Mastoid Bone was broke, I fell & got a concussion & had blinding headaches & post concussion syndrome & have broken my ankles 4 times in a year & 1/2, because I can't look down when I walk I also have dysphagia . My whole life was destroyed. This is what happens when you wait too long to be treated. Please don't let this happen to you. Your Cranial Nerves control your whole bodily functions. I know I sound like a mean person, but I don't want you or anyone to suffer the way I have and do daily. My NS is in Pittsburgh & is the "God Father of modern NS & has developed most current neurosurgical techniques. I also worked for BC & BS & we always sent adults to Pittsburgh for NS. I was sent there after seeing 52 specialists and UVa Med ctr. sent me to Dr Peter Jannetta because he is so amazing. Let me know if you need a referral or some contacts in Pittsburgh. I line in Va, but will go there in a second.

Tracy Z.

8

Brad,

See your specialist in NJ in May. Definitely have your records sent to the Chiari Inst. in New York & make an appointment. I will also be at the convention in July. It's only a couple of hours from my house. I am hoping more Members from this discussion group will come. Please don't panick. If you start having major neck or back pain or have a headache that feels like you wrecked your car & your head hit the windshield.....please go to the ER. I am sure May will be fine for your New Jersey appointment. If something is urgent they will find it. I first became ill in July of 2001 with what we didn't know was CM symptoms. My Chiari Surgeries was 9/26/2005. As I explained I had a rare situation. I was born with Spina Bifida (My father was a Navy Seal in Vietnam and he was in contact with Agent Orange) and never knew my whole life. The Spina Bifida Occulta caused my CM1. I just had a bad situation. Stay positive.....please. Send me a message and let me know how you are doing. Your plan sounds Medically sound. I promise.....

Tracy Z.

9

Thank you for confirming that our "battle plan" sounds medically sound. That helps a lot. And yes,... if I get hit ewith either a headache, back acher, or neck ache like you descriibe, I'll get down to an ER right away.

The bronchitis/laryngitis, I vame down wit on 4/12 has not really improved much (if any) at all. I was given antibiotis and a few days of steroids (to try to build my voice back) and am still on two different inhalers and cough syrup w/codeine. CT of chest was taken on Friday and we're still waiting for those results. Is it posssble that this is not bronchitis/laryngitis at all, and instead are new symptoms of CM1?

TracyZ said:

Brad,

See your specialist in NJ in May. Definitely have your records sent to the Chiari Inst. in New York & make an appointment. I will also be at the convention in July. It's only a couple of hours from my house. I am hoping more Members from this discussion group will come. Please don't panick. If you start having major neck or back pain or have a headache that feels like you wrecked your car & your head hit the windshield.....please go to the ER. I am sure May will be fine for your New Jersey appointment. If something is urgent they will find it. I first became ill in July of 2001 with what we didn't know was CM symptoms. My Chiari Surgeries was 9/26/2005. As I explained I had a rare situation. I was born with Spina Bifida (My father was a Navy Seal in Vietnam and he was in contact with Agent Orange) and never knew my whole life. The Spina Bifida Occulta caused my CM1. I just had a bad situation. Stay positive.....please. Send me a message and let me know how you are doing. Your plan sounds Medically sound. I promise.....

Tracy Z.

10

Chiari does affect your larynx in different ways. Many people have swallowing problems. My voice gets raspy at times, especially if I am not feeling well or have a bad Chiari Headache. Please remember though we still get everyday ailments. Bronchitis is no fun. Are the antibiotics helping at all. It usually takes a few days to improve your coughing. Maybe you should call your Dr. back and tell him you aren't feeling any better. Maybe you need a different antibiotic and additional steroids/inhalants. My daughter has asthma and we have been through it with breathing problems. Please let me know how you are doing. I really hope you feel better soon.

Tracy Z.

11

I totally had the same question. I have mild systems but the are starting to come more often. In AZ I have a NL and a NS, the NS said that I should not have the surgery unless it’s a life or death situation and my NL has not ever really treated a patient with my condition. Most of what I know about Chiari I have learned online. I am thinking of traveling to a Chiari clinic myself. Though you have much more severe symptoms than I do, I had the same question. Good luck with your appointment!

12

Antibiotics given to me last week did nothing at all. The doc now thinks I may have walking pneumonia instead of bronchitis and put me on a new antibiotic for the next 10 days. Had a CT done of my chest on Friday, and based on those results, I'm to see a pulmonologist on Wed. May 9 (first availble appt. in my area). I'm already on two different inhalers and cough syrup/with codeine as well. Scheduler warned me that if I don't improve prior to May 9, or if I run into trouble,I'll need to get to a local ER to be seen sooner.

TracyZ said:

Chiari does affect your larynx in different ways. Many people have swallowing problems. My voice gets raspy at times, especially if I am not feeling well or have a bad Chiari Headache. Please remember though we still get everyday ailments. Bronchitis is no fun. Are the antibiotics helping at all. It usually takes a few days to improve your coughing. Maybe you should call your Dr. back and tell him you aren't feeling any better. Maybe you need a different antibiotic and additional steroids/inhalants. My daughter has asthma and we have been through it with breathing problems. Please let me know how you are doing. I really hope you feel better soon.

Tracy Z.

13

Wow. Scary stuff. Thanks for being so open and honest with me. I really appreciate your candidness. Just picked up the book Conquer Chiari. Just started it, but so far its extremely thorough.

TracyZ said:

Hi Brad,

I was diagnosed too late and almost became a quadripledgic. I tell you this because ignoring CM has dire consequences. As I look back, my only pre surgical symptoms were: A sore neck(I thought I was working too hard), Headaches(written off because my mother also had migraines) & balance problems(which I had always bumped into stuff, My Grandmother called me Grace). I never thought I could be sick. I played all sports and ran & swam daily. I had previous Cranial Nerve surgery for ear pain. I went back to the NS and told him my neck was hurting , but everything else was fine. He did a Xray & a Cervical MRI and called me while driving on the hwy & told me to pull over. My spinal fluid was what we later determined to be 98% blocked & my veterbrae were literally being pushed out of my spinal column from the CSF blockage. My surgery was 16 hours long. They preformed a Chiari Decompression surgery with Crainectomy & Laminectomies on C1-C6. The nerves in my neck and back of my head was held open for 16 hours. I will always be in constant pain. The nerves were stretched to long. I have a bent optic nerve. I had a Spinal Fluid leak that turned into chemical meningitis & had motion sickness for 6 months, because my Mastoid Bone was broke, I fell & got a concussion & had blinding headaches & post concussion syndrome & have broken my ankles 4 times in a year & 1/2, because I can't look down when I walk I also have dysphagia . My whole life was destroyed. This is what happens when you wait too long to be treated. Please don't let this happen to you. Your Cranial Nerves control your whole bodily functions. I know I sound like a mean person, but I don't want you or anyone to suffer the way I have and do daily. My NS is in Pittsburgh & is the "God Father of modern NS & has developed most current neurosurgical techniques. I also worked for BC & BS & we always sent adults to Pittsburgh for NS. I was sent there after seeing 52 specialists and UVa Med ctr. sent me to Dr Peter Jannetta because he is so amazing. Let me know if you need a referral or some contacts in Pittsburgh. I line in Va, but will go there in a second.

Tracy Z.

14

Brad,

Coughing will definitely make your symptoms worse. Many times a car accident or dental surgery, sports ingury or an illness will push people that had managable symptoms into have much worse symptoms. Mine was a car accident. The horseness could be Chiari related for sure. The Decompression surgery is a treatment not a cure. Everyone gets different results. If you haven't had a Cine MRI you should insist on one. Damage is definitly being done with all the pressure in your head and spine. I would do some research before going to NY. They had some issues a few years ago and I don't know how they got resolved. I'm sure there are people on here that have gone there so they would know better. The conference sounds like a great idea. You just need to learn as much as you can and become a strong advocate for yourself. So few doctors and medical proffessionals know about Chiari you'll get alot of different opinions on what are Chiari symptoms and what aren't. If you have any doubts or questions you've come to the right place. I wish I had found this site years ago. Good Luck and let us know how you're doing.

Wendy

15

Brad,

Welcome! I hate to write scary stuff, but I understand it's important also.

You can read my Bio, but Chairi really messed up my spine and I was on the verge of being in a wheelchair if I didn't have surgery. It took over 10 years to diagnose me and then I waited 2 years to have Posterior Fossa Decompression, laminectomy and duraplasty (my herniation was 18mm with a small syrinx) I only waited because they wanted to do a cervial fusion and lumbar decompression, fusion and bone graft prior to my Chiari surgery. Which was the perfect way to go, because the lumbar and cervical surgeries were both easy recoveries for me and my Chairi recovery was very difficult and took a year. Today my limbs are functioning like they should (still a little paresthesis) and my spine is much better (still painful and need another lumbar surgery, but nothing urgent, thank goodness). I'd say 75% of my symptoms remain...chronic daily headaches, migraines, swallowing problems, balance issues, memory, neck and shoulder issues, etc. But, if I would have waited even longer I can only imagine how much worse I might be.

with all that said...I'd do it all again if I had to--NO REGRETS! I proabaly should have trusted the 4 NS and 2 NL's I saw that all said to not wait and have surgery, but it was a big step and wanted to do it all just right! You need to make the right decision for you.

It sounds like Tracy has really helped you and has you headed in a great direction and you have also done your research!

Good luck and keep us up to date!!

Thanks!

Monique

16

I am just going to chime in with a thought. When I was pre op, I was loosing my voice a lot and it was very hoarse. This is a symptom of Chiari. Is the Larangitis possibly not Larangitis and just a CM symptom?



Brad Hawkins said:

Thank you for confirming that our "battle plan" sounds medically sound. That helps a lot. And yes,... if I get hit ewith either a headache, back acher, or neck ache like you descriibe, I'll get down to an ER right away.

The bronchitis/laryngitis, I vame down wit on 4/12 has not really improved much (if any) at all. I was given antibiotis and a few days of steroids (to try to build my voice back) and am still on two different inhalers and cough syrup w/codeine. CT of chest was taken on Friday and we're still waiting for those results. Is it posssble that this is not bronchitis/laryngitis at all, and instead are new symptoms of CM1?

TracyZ said:

Brad,

See your specialist in NJ in May. Definitely have your records sent to the Chiari Inst. in New York & make an appointment. I will also be at the convention in July. It's only a couple of hours from my house. I am hoping more Members from this discussion group will come. Please don't panick. If you start having major neck or back pain or have a headache that feels like you wrecked your car & your head hit the windshield.....please go to the ER. I am sure May will be fine for your New Jersey appointment. If something is urgent they will find it. I first became ill in July of 2001 with what we didn't know was CM symptoms. My Chiari Surgeries was 9/26/2005. As I explained I had a rare situation. I was born with Spina Bifida (My father was a Navy Seal in Vietnam and he was in contact with Agent Orange) and never knew my whole life. The Spina Bifida Occulta caused my CM1. I just had a bad situation. Stay positive.....please. Send me a message and let me know how you are doing. Your plan sounds Medically sound. I promise.....

Tracy Z.

17

Who are you seeing in NJ? I went to Cooper for my decompression. I’m not a hundred percent better, but I definitely love no more Chiari headaches.

18

I saw Dr. Gordon Baltuch from University of Penn Neurosurgery in Cherry Hill, NJ. He and his Physician's Assistant were both generous with their time with me and after looking at my MRIs, although I clearly have CM1, there is no evidence of a syrinx, and it LOOKS as if there is no blockage of CSF. Therefore, he sees absolutely NO reason for me to go through the decompression surgery.

Frankly he was much more concerned about the MRI of my cervical spine then he was of the CM1, which shows degenerative disc and fact joint disease, most notably at C5-6 and C6-C7. He's ordered to new MRIs : a CINE Flow MRI which he want me to go to Philly for (about two hours from where I live) and an MRI Angio Neck w/ and w/out IV contrast to assess progression of cervical disc herniation as well as cartoids to rule out stenosis.

So I have these two tests to do, a stress test and a tilt table test that may cardiologist wants me to go through, and I'm still panning on submitting my app to be seen at the Chiari Institute in Great Neck NY for a complete diagnosis of my situation.

What are your thoughts on all of this?
-Brad

nicolee said:

I am just going to chime in with a thought. When I was pre op, I was loosing my voice a lot and it was very hoarse. This is a symptom of Chiari. Is the Larangitis possibly not Larangitis and just a CM symptom?



Brad Hawkins said:

Thank you for confirming that our "battle plan" sounds medically sound. That helps a lot. And yes,... if I get hit ewith either a headache, back acher, or neck ache like you descriibe, I'll get down to an ER right away.

The bronchitis/laryngitis, I vame down wit on 4/12 has not really improved much (if any) at all. I was given antibiotis and a few days of steroids (to try to build my voice back) and am still on two different inhalers and cough syrup w/codeine. CT of chest was taken on Friday and we're still waiting for those results. Is it posssble that this is not bronchitis/laryngitis at all, and instead are new symptoms of CM1?

TracyZ said:

Brad,

See your specialist in NJ in May. Definitely have your records sent to the Chiari Inst. in New York & make an appointment. I will also be at the convention in July. It's only a couple of hours from my house. I am hoping more Members from this discussion group will come. Please don't panick. If you start having major neck or back pain or have a headache that feels like you wrecked your car & your head hit the windshield.....please go to the ER. I am sure May will be fine for your New Jersey appointment. If something is urgent they will find it. I first became ill in July of 2001 with what we didn't know was CM symptoms. My Chiari Surgeries was 9/26/2005. As I explained I had a rare situation. I was born with Spina Bifida (My father was a Navy Seal in Vietnam and he was in contact with Agent Orange) and never knew my whole life. The Spina Bifida Occulta caused my CM1. I just had a bad situation. Stay positive.....please. Send me a message and let me know how you are doing. Your plan sounds Medically sound. I promise.....

Tracy Z.

19

The walking pneumonia/laryngitis seems to be clearing up. I'd say my voice is about 70% back and that the coughing has reduced by about 50%. I see a pulminologist about this issue on Thursday of this week. The NS and his assistant I saw in NJ yesterday were generous with their time with me and after looking at my MRIs, although I clearly have CM1, there is no evidence of a syrinx, and it LOOKS as if there is no blockage of CSF. Therefore, the NS sees absolutely NO reason for me to go through the decompression surgery.

Frankly they were much more concerned about the MRI of my cervical spine then they were of the CM1, which shows degenerative disc and fact joint disease, most notably at C5-6 and C6-C7. He's ordered to new MRIs : a CINE Flow MRI which he want me to go to Philly for (about two hours from where I live) and an MRI Angio Neck w/ and w/out IV contrast to assess progression of cervical disc herniation as well as cartoids to rule out stenosis.

So I have these two tests to do, plus a stress test and a tilt table test that may cardiologist wants me to go through, and I'm still planning on submitting my app to be seen at the Chiari Institute in Great Beck NY for a complete diagnosis of my situation.

What are your thoughts on all of this?
-Brad

nicolee said:

I am just going to chime in with a thought. When I was pre op, I was loosing my voice a lot and it was very hoarse. This is a symptom of Chiari. Is the Larangitis possibly not Larangitis and just a CM symptom?



Brad Hawkins said:

Thank you for confirming that our "battle plan" sounds medically sound. That helps a lot. And yes,... if I get hit ewith either a headache, back acher, or neck ache like you descriibe, I'll get down to an ER right away.

The bronchitis/laryngitis, I vame down wit on 4/12 has not really improved much (if any) at all. I was given antibiotis and a few days of steroids (to try to build my voice back) and am still on two different inhalers and cough syrup w/codeine. CT of chest was taken on Friday and we're still waiting for those results. Is it posssble that this is not bronchitis/laryngitis at all, and instead are new symptoms of CM1?

TracyZ said:

Brad,

See your specialist in NJ in May. Definitely have your records sent to the Chiari Inst. in New York & make an appointment. I will also be at the convention in July. It's only a couple of hours from my house. I am hoping more Members from this discussion group will come. Please don't panick. If you start having major neck or back pain or have a headache that feels like you wrecked your car & your head hit the windshield.....please go to the ER. I am sure May will be fine for your New Jersey appointment. If something is urgent they will find it. I first became ill in July of 2001 with what we didn't know was CM symptoms. My Chiari Surgeries was 9/26/2005. As I explained I had a rare situation. I was born with Spina Bifida (My father was a Navy Seal in Vietnam and he was in contact with Agent Orange) and never knew my whole life. The Spina Bifida Occulta caused my CM1. I just had a bad situation. Stay positive.....please. Send me a message and let me know how you are doing. Your plan sounds Medically sound. I promise.....

Tracy Z.