Criteria for surgery

Symptoms and Treatments Surgery and Recovery
1

Just wondering what criteria did you/do you have to meet for surgery. Has anyone had surgery/is havining surgery, that doesn't have a syrinx?

2

Tonya,

I do have a small syrinx, so I'm not sure that I would be helpful. I will share with you that even before they found my syrinx they said I needed the operation ASAP. It's not about the size or appearance of a syrinx...the NS should go with what the symptoms are doing to the patient and the benefits to the patient for having the surgery. That's what both NS's that I have been to have said to me. If your daughter (if I remember right...) is having horrible symptoms then she should be able to have a NS take her case seriously and treat her.

I hope you're able to get a NS that will consent to treating your daughter!

You all are in my thoughts and prayers! *hug*

3

The NL seems to think that her symptoms have nothing to do with the chiari, and does not recommend surgery. I’m seriously doubting that! Here is a list of her symptoms. I hope this doesn’t come out funky looking because sometimes my iPhone sucks. Lol
-headache (constant)
-migraines (daily) w/ vomiting but not everyday
she wakes up with one and sometimes wakes up in the middle
of the night with a migraine.
-nausea
-snoring
-loss of smell
-depression & anxiety (she’s seeing a Counsler)
-ADD (so they say, meds not working)

  • memory loss
  • trouble processing information
  • extreme fatigue (daily)
  • extremely bad menstral cramps with pain in her thighs
    and calves. (not sure this is due to her chiari)
    -allergies ( not sure to what and its year round, she’s had this for the last 2 years)
    -sleep apnea

So they have her on amitripline for the headaches ( doesnt work) nose spray (helps with snoring) and pill for allergies, a pill for ADD (doesn’t work) and a pill for nausea.
Now can you see why I’m so frustrated? To top the crappy NL off, the damn school isn’t working with us. I’m truly at my witts end. We have a NS appt next Thursday. I can’t wait to see if he thinks her symptoms are directly related to chiari.

Katrina S. said:

Tonya,

I do have a small syrinx, so I’m not sure that I would be helpful. I will share with you that even before they found my syrinx they said I needed the operation ASAP. It’s not about the size or appearance of a syrinx…the NS should go with what the symptoms are doing to the patient and the benefits to the patient for having the surgery. That’s what both NS’s that I have been to have said to me. If your daughter (if I remember right…) is having horrible symptoms then she should be able to have a NS take her case seriously and treat her.

I hope you’re able to get a NS that will consent to treating your daughter!

You all are in my thoughts and prayers! hug

4

In my experience the NL is worthless. Has she seen a NS? I have a lot of the symptoms she has. Does she have a gag reflex? That’s what the deciding factor was for my NS. I have no gag reflex anymore.

I wish you guys the best. This condition is very frustrating to get people to take seriously.

Tonya J. said:

The NL seems to think that her symptoms have nothing to do with the chiari, and does not recommend surgery. I’m seriously doubting that! Here is a list of her symptoms. I hope this doesn’t come out funky looking because sometimes my iPhone sucks. Lol -headache (constant)
-migraines (daily) w/ vomiting but not everyday
she wakes up with one and sometimes wakes up in the middle
of the night with a migraine.
-nausea
-snoring
-loss of smell
-depression & anxiety (she’s seeing a Counsler)
-ADD (so they say, meds not working)

  • memory loss
  • trouble processing information
  • extreme fatigue (daily)
  • extremely bad menstral cramps with pain in her thighs
    and calves. (not sure this is due to her chiari)
    -allergies ( not sure to what and its year round, she’s had this for the last 2 years)
    -sleep apnea

So they have her on amitripline for the headaches ( doesnt work) nose spray (helps with snoring) and pill for allergies, a pill for ADD (doesn’t work) and a pill for nausea.
Now can you see why I’m so frustrated? To top the crappy NL off, the damn school isn’t working with us. I’m truly at my witts end. We have a NS appt next Thursday. I can’t wait to see if he thinks her symptoms are directly related to chiari.

Katrina S. said:

Tonya,

I do have a small syrinx, so I’m not sure that I would be helpful. I will share with you that even before they found my syrinx they said I needed the operation ASAP. It’s not about the size or appearance of a syrinx…the NS should go with what the symptoms are doing to the patient and the benefits to the patient for having the surgery. That’s what both NS’s that I have been to have said to me. If your daughter (if I remember right…) is having horrible symptoms then she should be able to have a NS take her case seriously and treat her.

I hope you’re able to get a NS that will consent to treating your daughter!

You all are in my thoughts and prayers! hug

5

She still has a gag reflex. I really hope that’s not the deciding factor for this NS. If so, I don’t know how she’ll be able to make it thru college. I’m stressed about her graduating this year. I don’t want her to have a surgery that isn’t nessessary but if it will help her, why the hell not? They haven’t even ordered a spinal MRI. Just frustrating!

Mindy said:

In my experience the NL is worthless. Has she seen a NS? I have a lot of the symptoms she has. Does she have a gag reflex? That’s what the deciding factor was for my NS. I have no gag reflex anymore.
I wish you guys the best. This condition is very frustrating to get people to take seriously.

Tonya J. said:
The NL seems to think that her symptoms have nothing to do with the chiari, and does not recommend surgery. I’m seriously doubting that! Here is a list of her symptoms. I hope this doesn’t come out funky looking because sometimes my iPhone sucks. Lol -headache (constant) -migraines (daily) w/ vomiting but not everyday
she wakes up with one and sometimes wakes up in the middle
of the night with a migraine.
-nausea
-snoring
-loss of smell
-depression & anxiety (she’s seeing a Counsler)
-ADD (so they say, meds not working)

  • memory loss
  • trouble processing information
  • extreme fatigue (daily)
  • extremely bad menstral cramps with pain in her thighs
    and calves. (not sure this is due to her chiari)
    -allergies ( not sure to what and its year round, she’s had this for the last 2 years)
    -sleep apnea

So they have her on amitripline for the headaches ( doesnt work) nose spray (helps with snoring) and pill for allergies, a pill for ADD (doesn’t work) and a pill for nausea.
Now can you see why I’m so frustrated? To top the crappy NL off, the damn school isn’t working with us. I’m truly at my witts end. We have a NS appt next Thursday. I can’t wait to see if he thinks her symptoms are directly related to chiari.

Katrina S. said:

Tonya,

I do have a small syrinx, so I’m not sure that I would be helpful. I will share with you that even before they found my syrinx they said I needed the operation ASAP. It’s not about the size or appearance of a syrinx…the NS should go with what the symptoms are doing to the patient and the benefits to the patient for having the surgery. That’s what both NS’s that I have been to have said to me. If your daughter (if I remember right…) is having horrible symptoms then she should be able to have a NS take her case seriously and treat her.

I hope you’re able to get a NS that will consent to treating your daughter!

You all are in my thoughts and prayers! hug

6

Tonya,

Did the NS even suggest you see a NS? I would suggest you talk to one. The NL is not really qualified to treat or make decisions about Chiari, from what my NL said. NL's can find the Chiari, but should refer you to a NS to talk about the treatment option, etc.

As far as her symptoms I share most of them. I even had the same issues with the menstruation. My doctor sent me to a gyno to get birth control for that years ago, and it helped. I'm not sure about the ADD, that is the most over diagnosed disease in young adults and children. If they had all the problems they did, they would understand it's not ADD, your brain is just "swimming" in so much pain it's hard to concentrate! I have all the rest, but my depression isn't so bad that I see a counselor. I'm hoping that will improve after my surgery, if not, I'll find one.

The school still isn't cooperating?!?! Have you talk to an intervention specialist or someone who works with creating 504/IEP plans? Which state do you live in?

You're in my thoughts and prayers!


Tonya J. said:

The NL seems to think that her symptoms have nothing to do with the chiari, and does not recommend surgery. I'm seriously doubting that! Here is a list of her symptoms. I hope this doesn't come out funky looking because sometimes my iPhone sucks. Lol
-headache (constant)
-migraines (daily) w/ vomiting but not everyday
she wakes up with one and sometimes wakes up in the middle
of the night with a migraine.
-nausea
-snoring
-loss of smell
-depression & anxiety (she's seeing a Counsler)
-ADD (so they say, meds not working)
- memory loss
- trouble processing information
- extreme fatigue (daily)
- extremely bad menstral cramps with pain in her thighs
and calves. (not sure this is due to her chiari)
-allergies ( not sure to what and its year round, she's had this for the last 2 years)
-sleep apnea

So they have her on amitripline for the headaches ( doesnt work) nose spray (helps with snoring) and pill for allergies, a pill for ADD (doesn't work) and a pill for nausea.
Now can you see why I'm so frustrated? To top the crappy NL off, the damn school isn't working with us. I'm truly at my witts end. We have a NS appt next Thursday. I can't wait to see if he thinks her symptoms are directly related to chiari.

Katrina S. said:

Tonya,

I do have a small syrinx, so I'm not sure that I would be helpful. I will share with you that even before they found my syrinx they said I needed the operation ASAP. It's not about the size or appearance of a syrinx...the NS should go with what the symptoms are doing to the patient and the benefits to the patient for having the surgery. That's what both NS's that I have been to have said to me. If your daughter (if I remember right...) is having horrible symptoms then she should be able to have a NS take her case seriously and treat her.

I hope you're able to get a NS that will consent to treating your daughter!

You all are in my thoughts and prayers! *hug*

7

It can change quickly. I had a gag reflex in Feb and it was gone in Oct.

I think I NS will take her symptoms more seriously then the NL did. My NL still thinks it’s not causing my symptoms when 2 NS in 2 different states said I do.

I can’t imagine dealing with it in school. It’s hard enough just working with it. Big hugs to you and your daughter.

Tonya J. said:

She still has a gag reflex. I really hope that’s not the deciding factor for this NS. If so, I don’t know how she’ll be able to make it thru college. I’m stressed about her graduating this year. I don’t want her to have a surgery that isn’t nessessary but if it will help her, why the hell not? They haven’t even ordered a spinal MRI. Just frustrating!

Mindy said:
In my experience the NL is worthless. Has she seen a NS? I have a lot of the symptoms she has. Does she have a gag reflex? That’s what the deciding factor was for my NS. I have no gag reflex anymore. I wish you guys the best. This condition is very frustrating to get people to take seriously.

Tonya J. said:
The NL seems to think that her symptoms have nothing to do with the chiari, and does not recommend surgery. I’m seriously doubting that! Here is a list of her symptoms. I hope this doesn’t come out funky looking because sometimes my iPhone sucks. Lol -headache (constant) -migraines (daily) w/ vomiting but not everyday she wakes up with one and sometimes wakes up in the middle
of the night with a migraine.
-nausea
-snoring
-loss of smell
-depression & anxiety (she’s seeing a Counsler)
-ADD (so they say, meds not working)

  • memory loss
  • trouble processing information
  • extreme fatigue (daily)
  • extremely bad menstral cramps with pain in her thighs
    and calves. (not sure this is due to her chiari)
    -allergies ( not sure to what and its year round, she’s had this for the last 2 years)
    -sleep apnea

So they have her on amitripline for the headaches ( doesnt work) nose spray (helps with snoring) and pill for allergies, a pill for ADD (doesn’t work) and a pill for nausea.
Now can you see why I’m so frustrated? To top the crappy NL off, the damn school isn’t working with us. I’m truly at my witts end. We have a NS appt next Thursday. I can’t wait to see if he thinks her symptoms are directly related to chiari.

Katrina S. said:

Tonya,

I do have a small syrinx, so I’m not sure that I would be helpful. I will share with you that even before they found my syrinx they said I needed the operation ASAP. It’s not about the size or appearance of a syrinx…the NS should go with what the symptoms are doing to the patient and the benefits to the patient for having the surgery. That’s what both NS’s that I have been to have said to me. If your daughter (if I remember right…) is having horrible symptoms then she should be able to have a NS take her case seriously and treat her.

I hope you’re able to get a NS that will consent to treating your daughter!

You all are in my thoughts and prayers! hug

8

Yes I FINALLY have the paper from the NL for a 504 plan. It read under diagnosis: common migraine and childhood ADD w/o hyperactivity. I was floored! It gets better. I called the NL very upset and asked why the chiari wasn’t put under diagnosis. I asked them to please redo the paper (that I paid $25 for) and list all of her diagnosis. When I received the paper I was in TOTAL shock! Under diagnosis, was a brand new diagnosis “Spells Seizures Unspec”. Wth is this about? The NL discussed a type of seizers called absent seizure, that is associated with migraines. We did an EEG and the results are normal. So where did this “Spells Seizures Unspec” come from? What does it even mean? I can’t wait until our appt Thursday. We have an appt at 10:45 with the NS and an appt at 1:30 with the NL.

Katrina S. said:

Tonya,

Did the NS even suggest you see a NS? I would suggest you talk to one. The NL is not really qualified to treat or make decisions about Chiari, from what my NL said. NL’s can find the Chiari, but should refer you to a NS to talk about the treatment option, etc.

As far as her symptoms I share most of them. I even had the same issues with the menstruation. My doctor sent me to a gyno to get birth control for that years ago, and it helped. I’m not sure about the ADD, that is the most over diagnosed disease in young adults and children. If they had all the problems they did, they would understand it’s not ADD, your brain is just “swimming” in so much pain it’s hard to concentrate! I have all the rest, but my depression isn’t so bad that I see a counselor. I’m hoping that will improve after my surgery, if not, I’ll find one.

The school still isn’t cooperating?!?! Have you talk to an intervention specialist or someone who works with creating 504/IEP plans? Which state do you live in?

You’re in my thoughts and prayers!


Tonya J. said:

The NL seems to think that her symptoms have nothing to do with the chiari, and does not recommend surgery. I’m seriously doubting that! Here is a list of her symptoms. I hope this doesn’t come out funky looking because sometimes my iPhone sucks. Lol
-headache (constant)
-migraines (daily) w/ vomiting but not everyday

she wakes up with one and sometimes wakes up in the middle

of the night with a migraine.

-nausea

-snoring

-loss of smell

-depression & anxiety (she’s seeing a Counsler)

-ADD (so they say, meds not working)

  • memory loss
  • trouble processing information
  • extreme fatigue (daily)
  • extremely bad menstral cramps with pain in her thighs

    and calves. (not sure this is due to her chiari)

    -allergies ( not sure to what and its year round, she’s had this for the last 2 years)

    -sleep apnea



    So they have her on amitripline for the headaches ( doesnt work) nose spray (helps with snoring) and pill for allergies, a pill for ADD (doesn’t work) and a pill for nausea.

    Now can you see why I’m so frustrated? To top the crappy NL off, the damn school isn’t working with us. I’m truly at my witts end. We have a NS appt next Thursday. I can’t wait to see if he thinks her symptoms are directly related to chiari.

    Katrina S. said:

Tonya,

I do have a small syrinx, so I'm not sure that I would be helpful. I will share with you that even before they found my syrinx they said I needed the operation ASAP. It's not about the size or appearance of a syrinx...the NS should go with what the symptoms are doing to the patient and the benefits to the patient for having the surgery. That's what both NS's that I have been to have said to me. If your daughter (if I remember right...) is having horrible symptoms then she should be able to have a NS take her case seriously and treat her.

I hope you're able to get a NS that will consent to treating your daughter!

You all are in my thoughts and prayers! *hug*