Need Advice

[Guest guest]

I need some advice from all of you. I have ACM1 - was dx'd in Oct of 2001

and had Decompression Surgery and Laminectomy in Nov. of 2001. I did

very well after the surgery - was determined to keep moving and not let

this get the best of me. On Christmas Day, I developed such a bad

headache that I could hardly keep my eyes open - went to the ER and was

dx'd with Meningitis. I stayed in the hosp for about a week and went home

with a PIC line to admin. IV antibiotics for an additional 14 days. I did

not bounce back well and I became weaker and sicker - my gait problems,

balance and coord. problems returned as did major headaches. I tried to

get back in to see my Dr., however he saw me briefly and made

arrangements for me to see all kinds of other docs and go through addl.

testing. After I jumped through all the requested hoops, he didn't have

time to work me into his schedule and couldn't even return a phone call.

I contacted a Nsg. who had done my husband's spinal fusion earlier in

2001 and she said to come in and she'd look at my films and try to figure

out what was going on. She looked at the films and did a brief neuro exam

and figured it out right away - I had surgery 2 wks later (March 2002)

to have the dural patch removed and to have more of the PF removed. I did

much better after the surgery and my gait is normal again. I have had

major headaches like never before since this surgery -- I feel like the

left side of my brain is shrunk and needs to stretch every time I move -

it's like I have a chord pulling in my head all the time and I have a

hollowed out section with a large " goose egg " above it. It feels like I

am growing lemons in my head! Anyway this Dr. moved away earlier this

summer and suggested a nsg. in another city for a follow-up in 4-6

months. I called that office and found that he doesn't take my insurance.

When I went to my ins. co's web site, much to my surprise I found that

Dr. Milhorat at the Chiari Clinic is participating with my Ins. Co (GHI).

I called them and they said that Dr. M is no longer seeing pts., but that

they would schedule me with Dr. Bolognese (who despite being in the same

clinic doesn't participate with my ins. co) and then bill my ins. co.

under Dr. Milhorat's name/code. I asked if that was legal and they said

that that is how they get around the HMO issues and that it would not be

a problem. I was scheduled for 11/20 with Dr. B. I have worked all

summer on getting all of my records and films forwarded to the Chiari

Clinic. I called yesterday to make sure that they had received everything

and was told during the call " By the way, we can't work out the ins.

thing like we said. Ins. co's are starting to ask questions and we can't

do it. You may want to get a secondary insurance policy. " I couldn't

believe it - I had made my appointment through them in early June -

nobody called me - they waited for me to call and said " oh, by the way. "

I can't get secondary insurance - it is too costly and I have a

preexisting condition - that was just a desperate attempt for them to

offer a solution. I am more frustrated than angry.

I have no designs on giving up, but am at the end of my rope. This stupid

disease is causing me to be a different person. I am irritable because of

the pain, am weepy and sad. I wish I had never been diagnosed - the

symptoms I had before I went to the Dr. in the first place were easier to

live with than what I am living with now - supposedly after having been

" fixed. " I have a full time job that I love, a husband, 2 awesome kids

and am getting ready to move into a new home next month. I don't have

time to feel this way!!

I have done exhaustive Internet searches trying to find a Surgeon that

participates with my ins. and also works at a hospital that has an

anesthesiologist and a radiologist that participates (not that I plan to

have any additional surgeries, but should that ever become necessary, I

don't want to have to start all over with another surgeon.). I talked

with a Case Mgr with my Ins. Co today who is trying to help - she has

done some research on Chiari since we talked yesterday and is going to

try to convince her superiors that I need authorization to go to a Center

for Specialized Care because of what Chiari is. Some of the Centers she

mentioned were JOHNS HOPKINS, COLUMBIA PRESBYTERIAN, AND ST. VINCENTS IN

NYC. I live in upstate NY - it's about a 6 hour trip to the city. Has

anyone had any experience with Drs. treating their Chiari at any of these

sites. If so, did you find that the Dr. really knew about this disease

and who was the Dr.?

My other question is this; should I just forget about seeing a Dr. and

just give this thing some time - I realize that the 2 surgeries only 4

months apart was alot for my body and that maybe this is just a matter of

time.

I've been in Phys. therapy, still do the exercises and am taking

Propoxyphene and Skelaxin for pain mgmt.

Do the symptoms I've described sound familiar? I don't know what to

expect and what is normal anymore. I know that I feel very overwhelmed

right now.

I'm sorry this is so long - for those of you that have gotten to these

words without hitting " X " I appreciate your patience and look forward to

your feedback and guidance.

Thanks in advance!

bonita

[Guest guest]

I would suggest havin Free T3 and Rt run. You are on alot of Armoru to

still be having symptoms and I fear there may be RT3 jammin g up the

receptors. This will also cause anxiety and even can overwork the

adrenals because you actually get toxic to the thyroid you cannot

utilize properly.

--

Artistic Grooming- Hurricane WV

http://www.stopthethyroidmadness.com/

http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/

http://health.groups.yahoo.com/group/RT3_T3/

[Guest guest]

,

I have been checking my pulse today at regular intervals, since the

incident at the blood bank yesterday.

In the past, I was lucky to have a pulse of 78 - it usually ran

about 68-70. Today, I have been running about 102-110. To be

honest, I was completely unaware that my blood pressure was up; I am

so used to it being low all the time. Also, I have been noticing

that my heartbeat is skipping today. I haven't had that in a long

time.

If I have to wait to do the testing for Free and Reverse, should I

lower my Armour from 5 to 4 in order to get my blood pressure down?

I ordered the test kit from Canary Club a while ago, but haven't

done it yet. Should I do it as the Armour level I am at right now,

or wait until I have been on a lower dose for a while? Also, should

I add HC again as soon as I complete the test?

This is scaring me a little, since I have been feeling OK for a

while and quite happy with Armour. Before I switched to Armour, I

was on Synthroid and Levothroid for almost 30 years, being on .175

mg. for at least 10 years. I had all kinds of problems with them:

extreme fibromyalgia being the worst. Armour alleviated

so much of the pain.

Thanks for all your help! I really appreciate all you do.

Jan

Re: Need advice

>

> I would suggest havin Free T3 and Rt run. You are on alot of

Armoru to

> still be having symptoms and I fear there may be RT3 jammin g up

the

> receptors. This will also cause anxiety and even can overwork the

> adrenals because you actually get toxic to the thyroid you cannot

> utilize properly.

>

> --

> Artistic Grooming- Hurricane WV

>

[Guest guest]

High pulse and high BP are both symptoms of Adrenaline not the thyroid.

Butthe thyroid may be triggering it if oyur adrena;ls are not putting

out enough cortisl.

--

Artistic Grooming- Hurricane WV

http://www.stopthethyroidmadness.com/

http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/

http://health.groups.yahoo.com/group/RT3_T3/

[Guest guest]

I'm doing the Canary Club tests today and should know something soon.

Thanks for your help.

Jan

>

> High pulse and high BP are both symptoms of Adrenaline not the

thyroid.

> Butthe thyroid may be triggering it if oyur adrena;ls are not putting

> out enough cortisl.

>

[Guest guest]

I'm doing the Canary Club tests today and should know something soon.

Thanks for your help.

Jan

>

> High pulse and high BP are both symptoms of Adrenaline not the

thyroid.

> Butthe thyroid may be triggering it if oyur adrena;ls are not putting

> out enough cortisl.

>