Frustrated

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DASH more. I would recommend you have Dr. do a 24 hr urine for Na, K to check. May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 16, 2009, at 5:50 PM, mmcandmcc wrote: I'm on Spiro 200 mg / day. I was down to 100 mg / day last summer and my BP began rising so we went to 150 mg / day and by this past summer I had to go up to 200 mg / day. I don't think I can go much higher because my menstural cycles are so long I have about 4 days out of every 28 when I'm not bleeding. > > How much spiro are you on? > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of mmcandmcc > > My BPs were doing good 135/85 and now for the last three weeks they've been > climbing to 150/100. Endo will see me Tuesday, but wanted to give me Toprol > over the phone. I've tried Toprol and it gave me wicked mental side effects. > My husband marched me into the PCPs office and told him this drug was making > me crazy and he'd better find another. That's when he sent me to the Endo. > I'd been doing good, keeping Na to less than 1,000 mg and daily light > exercise. I can't pinpoint anything that would have changed. > > Any advice? > >

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Have had pts have this problem as well on BB. May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 16, 2009, at 5:51 PM, mmcandmcc wrote: Everything from vivid dreams to hearing voices and anger that I'd never known before. > > What do you mean "making you crazy?" > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of mmcandmcc > > My BPs were doing good 135/85 and now for the last three weeks they've been > climbing to 150/100. Endo will see me Tuesday, but wanted to give me Toprol > over the phone. I've tried Toprol and it gave me wicked mental side effects. > My husband marched me into the PCPs office and told him this drug was making > me crazy and he'd better find another. That's when he sent me to the Endo. > I'd been doing good, keeping Na to less than 1,000 mg and daily light > exercise. I can't pinpoint anything that would have changed. > > Any advice? > >

[Guest guest]

Good digestion. Probably wont affect BP. May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 16, 2009, at 5:53 PM, Chantal wrote: I wondered this as well. Spiro is a competitive antagonist. Aldosterone levels do increase while you're one it. So by rights, with time, the increasing aldosterone levels due to the drug-induced up-regulation of aldo (i'm assuming this is the mechanism) and disease progression (big bumps come from small bumps as discussed previously) could challenge the spiro even more and possibly gain access to the receptors more frequently with time thereby reducing the efficacy of the spiro - increased symptoms/BP... Anyhow, I'm curious as well. Bath time for toddler TTFN oh yeah, I think we have an increased need for potassium (a given) and although DASHing should by rights supply us with the magnesium- Perhaps this hyper-aldo states predisposes PA sufferers with malabsorption( again, K and Mg are needed for various, basic functions, digestive process, enzyme related ?) of basic nutrients. I started digestive enzymes.. Any thoughts? > > > > > > > How much spiro are you on? > > > Val > > From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of mmcandmcc > > > > > My BPs were doing good 135/85 and now for the last three weeks they've been climbing to 150/100. Endo will see me Tuesday, but wanted to give me Toprol over the phone. I've tried Toprol and it gave me wicked mental side effects. My husband marched me into the PCPs office and told him this drug was making me crazy and he'd better find another. That's when he sent me to the Endo. I'd been doing good, keeping Na to less than 1,000 mg and daily light exercise. I can't pinpoint anything that would have changed. > > Any advice? > >

[Guest guest]

Remind him that BB work to lower BP by lowering renin (in part) as renin is very low in PA their effect is blunted or blocked completely. May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 16, 2009, at 5:51 PM, mmcandmcc wrote: Now let's try convincing my Endo of that. > > > My BPs were doing good 135/85 and now for the last three weeks > > they've been climbing to 150/100. Endo will see me Tuesday, but > > wanted to give me Toprol over the phone. I've tried Toprol and it > > gave me wicked mental side effects. My husband marched me into the > > PCPs office and told him this drug was making me crazy and he'd > > better find another. That's when he sent me to the Endo. I'd been > > doing good, keeping Na to less than 1,000 mg and daily light > > exercise. I can't pinpoint anything that would have changed. > > > > Any advice? > > > > > > >

[Guest guest]

Inspra would be good to try as mense problems will be less. Will take about 2 x a much as spiro in general. May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 16, 2009, at 7:50 PM, Lori wrote: How is your potassim ? do you use a supplement? Have you tried Inspira? Did you feel better on 200 mg of Spiro than you do on 100 mg? Lori From: mmcandmcc <mmcandmcc >hyperaldosteronism Sent: Fri, October 16, 2009 5:50:06 PMSubject: Re: frustrated I'm on Spiro 200 mg / day. I was down to 100 mg / day last summer and my BP began rising so we went to 150 mg / day and by this past summer I had to go up to 200 mg / day. I don't think I can go much higher because my menstural cycles are so long I have about 4 days out of every 28 when I'm not bleeding.>> How much spiro are you on?> > Val> > From: hyperaldosteronism> [mailto:hyperaldosteronism] On Behalf Of mmcandmcc> > My BPs were doing good 135/85 and now for the last three weeks they've been> climbing to 150/100. Endo will see me Tuesday, but wanted to give me Toprol> over the phone. I've tried Toprol and it gave me wicked mental side effects.> My husband marched me into the PCPs office and told him this drug was making> me crazy and he'd better find another. That's when he sent me to the Endo.> I'd been doing good, keeping Na to less than 1,000 mg and daily light> exercise. I can't pinpoint anything that would have changed.> > Any advice?> >

[Guest guest]

WE only rely on AVS. Best way to go. May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 16, 2009, at 9:31 PM, Lori wrote: What does your endo say ? It is very frustrating, I know. I have to K+ ( 40-80 meq daily) to keep me feeling better, not great, but better. Potassium seems to keep my muscle spasm at bay. My potassium would be "low normal" by blood test but I can always tell when it is low so my Dr. gave me an Rx for K+. I even drink 2 low sodium V8's daily ( LOW SODIUM still means it has sodium in it) because each can has 36% of daily potassium in it. It helps me soooooo much. My BP is well controlled on low dose Spiro. From what I gather, you can take up to 400mg a day and it's non threatening. There are people in this forum that take that amount. Maybe you just need potassium and higher Spiro dose. I wish there was an easy fix. I have a 6 cm mass on my right adrenal and I am convinced that little bugger is causing all my symptoms. I am supposed to meet with a new endo re: removal but they want to do a certain type of CT with contrast that monitors the activity of both adrenals. It is alot cheaper and has less risk than AVS. I am trying to have hope that I will feel better. I have 2 young kids, a husband that works off and work very long, stressful hours in an ER. I NEED to be healthy or semi normal at least. Good luck to you, know there are things changing all the time for the better. Let us know what you find out at your next appt. Lori From: mmcandmcc <mmcandmcc >Subject: Re: frustratedhyperaldosteronism Date: Friday, October 16, 2009, 7:55 PM My potassium had been on the low side of normal, but it's been a long time since I've had it checked. I really felt a lot better on the lower dose of the spiro. I think I had more energy.> >> > How much spiro are you on?> > > > Val> > > > From: hyperaldosteronism> > [mailto:hyperaldost eronism] On Behalf Of mmcandmcc> > > > My BPs were doing good 135/85 and now for the last three weeks they've been> > climbing to 150/100. Endo will see me Tuesday, but wanted to give me Toprol> > over the phone. I've tried Toprol and it gave me wicked mental side effects.> > My husband marched me into the PCPs office and told him this drug was making> > me crazy and he'd better find another. That's when he sent me to the Endo.> > I'd been doing good, keeping Na to less than 1,000 mg and daily light> > exercise. I can't pinpoint anything that would have changed.> > > > Any advice?> > > >>

[Guest guest]

6 cm is hugh for Conn"s. Sure you have your units right? May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 16, 2009, at 9:31 PM, Lori wrote: What does your endo say ? It is very frustrating, I know. I have to K+ ( 40-80 meq daily) to keep me feeling better, not great, but better. Potassium seems to keep my muscle spasm at bay. My potassium would be "low normal" by blood test but I can always tell when it is low so my Dr. gave me an Rx for K+. I even drink 2 low sodium V8's daily ( LOW SODIUM still means it has sodium in it) because each can has 36% of daily potassium in it. It helps me soooooo much. My BP is well controlled on low dose Spiro. From what I gather, you can take up to 400mg a day and it's non threatening. There are people in this forum that take that amount. Maybe you just need potassium and higher Spiro dose. I wish there was an easy fix. I have a 6 cm mass on my right adrenal and I am convinced that little bugger is causing all my symptoms. I am supposed to meet with a new endo re: removal but they want to do a certain type of CT with contrast that monitors the activity of both adrenals. It is alot cheaper and has less risk than AVS. I am trying to have hope that I will feel better. I have 2 young kids, a husband that works off and work very long, stressful hours in an ER. I NEED to be healthy or semi normal at least. Good luck to you, know there are things changing all the time for the better. Let us know what you find out at your next appt. Lori From: mmcandmcc <mmcandmcc >Subject: Re: frustratedhyperaldosteronism Date: Friday, October 16, 2009, 7:55 PM My potassium had been on the low side of normal, but it's been a long time since I've had it checked. I really felt a lot better on the lower dose of the spiro. I think I had more energy.> >> > How much spiro are you on?> > > > Val> > > > From: hyperaldosteronism> > [mailto:hyperaldost eronism] On Behalf Of mmcandmcc> > > > My BPs were doing good 135/85 and now for the last three weeks they've been> > climbing to 150/100. Endo will see me Tuesday, but wanted to give me Toprol> > over the phone. I've tried Toprol and it gave me wicked mental side effects.> > My husband marched me into the PCPs office and told him this drug was making> > me crazy and he'd better find another. That's when he sent me to the Endo.> > I'd been doing good, keeping Na to less than 1,000 mg and daily light> > exercise. I can't pinpoint anything that would have changed.> > > > Any advice?> > > >>

[Guest guest]

Toprol is what king takes/took.

It had that effect on my brain.

I have several full length movies I could write that you have not seen on TV.

Regards

Re: frustrated

Everything from vivid dreams to hearing voices and anger that I'd never known before. >> What do you mean "making you crazy?" > > Val>

..

[Guest guest]

mine is 7 cms From: Clarence Grim <lowerbp2@...>hyperaldosteronism Sent: Sat, October 17, 2009 5:49:21 AMSubject: Re: Re: frustrated

6 cm is hugh for Conn"s. Sure you have your units right? May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 16, 2009, at 9:31 PM,

Lori wrote: What does your endo say ? It is very frustrating, I know. I have to K+ ( 40-80 meq daily) to keep me feeling better, not great, but better. Potassium seems to keep my muscle spasm at bay. My potassium would be "low normal" by blood test but I can always tell when it is low so my Dr. gave me an Rx for K+. I even drink 2 low sodium V8's daily ( LOW SODIUM still means it has sodium in it) because each can has 36% of daily potassium in it. It helps me soooooo much. My BP is well controlled on low dose Spiro. From what I gather, you

can take up to 400mg a day and it's non threatening. There are people in this forum that take that amount. Maybe you just need potassium and higher Spiro dose. I wish there was an easy fix. I have a 6 cm mass on my right adrenal and I am convinced that little bugger is causing all my symptoms. I am supposed to meet with a new endo re: removal but they want to do a certain type of CT with contrast that monitors the activity of both adrenals. It is alot cheaper and has less risk than AVS. I am trying to have hope that I will feel better. I have 2 young kids, a husband that works off and work very long, stressful hours in an ER. I NEED to be healthy or semi normal at least. Good luck to you, know there are things changing all the time for the better. Let us know what you find out at your next appt. Lori From: mmcandmcc <mmcandmcc (DOT) com>Subject: [hyperaldosteronism ] Re: frustratedhyperaldosteronismDate: Friday, October 16, 2009, 7:55 PM My potassium had been on the low side of normal, but it's been a long time since I've had it checked. I really felt a lot better on the lower dose of the spiro. I think I had more energy.> >> > How much spiro are you on?> > > > Val> > > > From: hyperaldosteronism> > [mailto:hyperaldost eronism] On Behalf Of mmcandmcc> > > > My BPs were doing good 135/85 and now for the last three weeks they've been> > climbing to 150/100. Endo will see me Tuesday, but wanted to give me Toprol> > over the phone. I've tried Toprol and it gave me wicked mental side effects.> > My husband marched me into the PCPs office and told him this drug was making> > me crazy and he'd better find another. That's when he sent me to the Endo.> > I'd been doing good, keeping Na to less than 1,000 mg and daily light> > exercise. I can't pinpoint anything that would have changed.> > > > Any advice?> > > >>

[Guest guest]

Yes, I have my units correct. Not millimeters centimeters.Right adrenal 5.9cm by 4.9 cm. That's why my PCP is almost certain it is the adrenal causing my PA and not the left one which there is no tumor. Lori

From: mmcandmcc <mmcandmcc (DOT) com>Subject: [hyperaldosteronism ] Re: frustratedhyperaldosteronismDate: Friday, October 16, 2009, 7:55 PM

My potassium had been on the low side of normal, but it's been a long time since I've had it checked. I really felt a lot better on the lower dose of the spiro. I think I had more energy.> >> > How much spiro are you on?> > > > Val> > > > From: hyperaldosteronism> > [mailto:hyperaldost eronism] On Behalf Of mmcandmcc> > > > My BPs were doing good 135/85 and now for the last three weeks they've been> > climbing to

150/100. Endo will see me Tuesday, but wanted to give me Toprol> > over the phone. I've tried Toprol and it gave me wicked mental side effects.> > My husband marched me into the PCPs office and told him this drug was making> > me crazy and he'd better find another. That's when he sent me to the Endo.> > I'd been doing good, keeping Na to less than 1,000 mg and daily light> > exercise. I can't pinpoint anything that would have changed.> > > > Any advice?> > > >>

[Guest guest]

my tuma is 7 cmhyperaldosteronism From: wendyparkinsons@...Date: Sun, 18 Oct 2009 14:28:50 -0700Subject: Re: Re: frustrated

mine is 7 cms From: Clarence Grim <lowerbp2mac>hyperaldosteronism Sent: Sat, October 17, 2009 5:49:21 AMSubject: Re: Re: frustrated

6 cm is hugh for Conn"s. Sure you have your units right? May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 16, 2009, at 9:31 PM,

Lori wrote: What does your endo say ? It is very frustrating, I know. I have to K+ ( 40-80 meq daily) to keep me feeling better, not great, but better. Potassium seems to keep my muscle spasm at bay. My potassium would be "low normal" by blood test but I can always tell when it is low so my Dr. gave me an Rx for K+. I even drink 2 low sodium V8's daily ( LOW SODIUM still means it has sodium in it) because each can has 36% of daily potassium in it. It helps me soooooo much. My BP is well controlled on low dose Spiro. From what I gather, you

can take up to 400mg a day and it's non threatening. There are people in this forum that take that amount. Maybe you just need potassium and higher Spiro dose. I wish there was an easy fix. I have a 6 cm mass on my right adrenal and I am convinced that little bugger is causing all my symptoms. I am supposed to meet with a new endo re: removal but they want to do a certain type of CT with contrast that monitors the activity of both adrenals. It is alot cheaper and has less risk than AVS. I am trying to have hope that I will feel better. I have 2 young kids, a husband that works off and work very long, stressful hours in an ER. I NEED to be healthy or semi normal at least. Good luck to you, know there are things changing all the time for the better. Let us know what you find out at your next appt. Lori From: mmcandmcc <mmcandmcc (DOT) com>Subject: [hyperaldosteronism ] Re: frustratedhyperaldosteronismDate: Friday, October 16, 2009, 7:55 PM My potassium had been on the low side of normal, but it's been a long time since I've had it checked. I really felt a lot better on the lower dose of the spiro. I think I had more energy.> >> > How much spiro are you on?> > > > Val> > > > From: hyperaldosteronism> > [mailto:hyperaldost eronism] On Behalf Of mmcandmcc> > > > My BPs were doing good 135/85 and now for the last three weeks they've been> > climbing to 150/100. Endo will see me Tuesday, but wanted to give me Toprol> > over the phone. I've tried Toprol and it gave me wicked mental side effects.> > My husband marched me into the PCPs office and told him this drug was making> > me crazy and he'd better find another. That's when he sent me to the Endo.> > I'd been doing good, keeping Na to less than 1,000 mg and daily light> > exercise. I can't pinpoint anything that would have changed.> > > > Any advice?> > > >>

[Guest guest]

a h8 this illness hyperaldosteronism From: weddybbw@...Date: Wed, 28 Oct 2009 07:42:33 +0000Subject: RE: Re: frustrated

my tuma is 7 cmhyperaldosteronism From: wendyparkinsons Date: Sun, 18 Oct 2009 14:28:50 -0700Subject: Re: Re: frustrated

mine is 7 cms From: Clarence Grim <lowerbp2mac>hyperaldosteronism Sent: Sat, October 17, 2009 5:49:21 AMSubject: Re: Re: frustrated

6 cm is hugh for Conn"s. Sure you have your units right? May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 16, 2009, at 9:31 PM,

Lori wrote: What does your endo say ? It is very frustrating, I know. I have to K+ ( 40-80 meq daily) to keep me feeling better, not great, but better. Potassium seems to keep my muscle spasm at bay. My potassium would be "low normal" by blood test but I can always tell when it is low so my Dr. gave me an Rx for K+. I even drink 2 low sodium V8's daily ( LOW SODIUM still means it has sodium in it) because each can has 36% of daily potassium in it. It helps me soooooo much. My BP is well controlled on low dose Spiro. From what I gather, you

can take up to 400mg a day and it's non threatening. There are people in this forum that take that amount. Maybe you just need potassium and higher Spiro dose. I wish there was an easy fix. I have a 6 cm mass on my right adrenal and I am convinced that little bugger is causing all my symptoms. I am supposed to meet with a new endo re: removal but they want to do a certain type of CT with contrast that monitors the activity of both adrenals. It is alot cheaper and has less risk than AVS. I am trying to have hope that I will feel better. I have 2 young kids, a husband that works off and work very long, stressful hours in an ER. I NEED to be healthy or semi normal at least. Good luck to you, know there are things changing all the time for the better. Let us know what you find out at your next appt. Lori From: mmcandmcc <mmcandmcc (DOT) com>Subject: [hyperaldosteronism ] Re: frustratedhyperaldosteronismDate: Friday, October 16, 2009, 7:55 PM My potassium had been on the low side of normal, but it's been a long time since I've had it checked. I really felt a lot better on the lower dose of the spiro. I think I had more energy.> >> > How much spiro are you on?> > > > Val> > > > From: hyperaldosteronism> > [mailto:hyperaldost eronism] On Behalf Of mmcandmcc> > > > My BPs were doing good 135/85 and now for the last three weeks they've been> > climbing to 150/100. Endo will see me Tuesday, but wanted to give me Toprol> > over the phone. I've tried Toprol and it gave me wicked mental side effects.> > My husband marched me into the PCPs office and told him this drug was making> > me crazy and he'd better find another. That's when he sent me to the Endo.> > I'd been doing good, keeping Na to less than 1,000 mg and daily light> > exercise. I can't pinpoint anything that would have changed.> > > > Any advice?> > > >>

[Guest guest]

Big. What other problems do you have. Recommend adding See XXX's story for details to all of your messages so don't need to keep repeating? May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 28, 2009, at 2:42 AM, wendy parkinson wrote: my tuma is 7 cmhyperaldosteronism From: wendyparkinsons Date: Sun, 18 Oct 2009 14:28:50 -0700Subject: Re: Re: frustrated mine is 7 cms From: Clarence Grim <lowerbp2mac>hyperaldosteronism Sent: Sat, October 17, 2009 5:49:21 AMSubject: Re: Re: frustrated 6 cm is hugh for Conn"s. Sure you have your units right? May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 16, 2009, at 9:31 PM, Lori wrote: What does your endo say ? It is very frustrating, I know. I have to K+ ( 40-80 meq daily) to keep me feeling better, not great, but better. Potassium seems to keep my muscle spasm at bay. My potassium would be "low normal" by blood test but I can always tell when it is low so my Dr. gave me an Rx for K+. I even drink 2 low sodium V8's daily ( LOW SODIUM still means it has sodium in it) because each can has 36% of daily potassium in it. It helps me soooooo much. My BP is well controlled on low dose Spiro. From what I gather, you can take up to 400mg a day and it's non threatening. There are people in this forum that take that amount. Maybe you just need potassium and higher Spiro dose. I wish there was an easy fix. I have a 6 cm mass on my right adrenal and I am convinced that little bugger is causing all my symptoms. I am supposed to meet with a new endo re: removal but they want to do a certain type of CT with contrast that monitors the activity of both adrenals. It is alot cheaper and has less risk than AVS. I am trying to have hope that I will feel better. I have 2 young kids, a husband that works off and work very long, stressful hours in an ER. I NEED to be healthy or semi normal at least. Good luck to you, know there are things changing all the time for the better. Let us know what you find out at your next appt. Lori From: mmcandmcc <mmcandmcc (DOT) com>Subject: [hyperaldosteronism ] Re: frustratedhyperaldosteronismDate: Friday, October 16, 2009, 7:55 PM My potassium had been on the low side of normal, but it's been a long time since I've had it checked. I really felt a lot better on the lower dose of the spiro. I think I had more energy.> >> > How much spiro are you on?> > > > Val> > > > From: hyperaldosteronism> > [mailto:hyperaldost eronism] On Behalf Of mmcandmcc> > > > My BPs were doing good 135/85 and now for the last three weeks they've been> > climbing to 150/100. Endo will see me Tuesday, but wanted to give me Toprol> > over the phone. I've tried Toprol and it gave me wicked mental side effects.> > My husband marched me into the PCPs office and told him this drug was making> > me crazy and he'd better find another. That's when he sent me to the Endo.> > I'd been doing good, keeping Na to less than 1,000 mg and daily light> > exercise. I can't pinpoint anything that would have changed.> > > > Any advice?> > > >>

[Guest guest]

Say what? May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 28, 2009, at 2:43 AM, wendy parkinson wrote: a h8 this illness hyperaldosteronism From: weddybbwmsnDate: Wed, 28 Oct 2009 07:42:33 +0000Subject: RE: Re: frustrated my tuma is 7 cmhyperaldosteronism From: wendyparkinsons Date: Sun, 18 Oct 2009 14:28:50 -0700Subject: Re: Re: frustrated mine is 7 cms From: Clarence Grim <lowerbp2mac>hyperaldosteronism Sent: Sat, October 17, 2009 5:49:21 AMSubject: Re: Re: frustrated 6 cm is hugh for Conn"s. Sure you have your units right? May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 16, 2009, at 9:31 PM, Lori wrote: What does your endo say ? It is very frustrating, I know. I have to K+ ( 40-80 meq daily) to keep me feeling better, not great, but better. Potassium seems to keep my muscle spasm at bay. My potassium would be "low normal" by blood test but I can always tell when it is low so my Dr. gave me an Rx for K+. I even drink 2 low sodium V8's daily ( LOW SODIUM still means it has sodium in it) because each can has 36% of daily potassium in it. It helps me soooooo much. My BP is well controlled on low dose Spiro. From what I gather, you can take up to 400mg a day and it's non threatening. There are people in this forum that take that amount. Maybe you just need potassium and higher Spiro dose. I wish there was an easy fix. I have a 6 cm mass on my right adrenal and I am convinced that little bugger is causing all my symptoms. I am supposed to meet with a new endo re: removal but they want to do a certain type of CT with contrast that monitors the activity of both adrenals. It is alot cheaper and has less risk than AVS. I am trying to have hope that I will feel better. I have 2 young kids, a husband that works off and work very long, stressful hours in an ER. I NEED to be healthy or semi normal at least. Good luck to you, know there are things changing all the time for the better. Let us know what you find out at your next appt. Lori From: mmcandmcc <mmcandmcc (DOT) com>Subject: [hyperaldosteronism ] Re: frustratedhyperaldosteronismDate: Friday, October 16, 2009, 7:55 PM My potassium had been on the low side of normal, but it's been a long time since I've had it checked. I really felt a lot better on the lower dose of the spiro. I think I had more energy.> >> > How much spiro are you on?> > > > Val> > > > From: hyperaldosteronism> > [mailto:hyperaldost eronism] On Behalf Of mmcandmcc> > > > My BPs were doing good 135/85 and now for the last three weeks they've been> > climbing to 150/100. Endo will see me Tuesday, but wanted to give me Toprol> > over the phone. I've tried Toprol and it gave me wicked mental side effects.> > My husband marched me into the PCPs office and told him this drug was making> > me crazy and he'd better find another. That's when he sent me to the Endo.> > I'd been doing good, keeping Na to less than 1,000 mg and daily light> > exercise. I can't pinpoint anything that would have changed.> > > > Any advice?> > > >>

[Guest guest]

I think we all go through times like this.. You seem like you have a good attitude about it though and that is great.. a pound is still a pound down and that is great.. Keep up the good work.. and keep moving forward..

Betty Jo

From: Sapphyre <sapphyreonalosingstreak@...>100Plus List <100-plus >Sent: Tue, February 16, 2010 7:26:31 AMSubject: Frustrated

I was going to do so much last week ended up doing nothing. Was going to bring the slack up this week but my boss is keeping me late every night so I can't get into the gym. But I'm down a little so doing better. I'd lost about a pound from last week so I'm hoping to keep that momentum going until the boss leaves for California the 24th. He'll be gone a week so I'll be able to leave a little early every night. I missed The Biggest Loser last night I'll have to hit the recap at NBC and find out who's gone. Sucks when I feel like I'm spinning my wheels and getting nowhre.

*~*~*~*"You can deprive the body, but the soul needs chocolate" -Sapphyre*~*~*~*What Have You Done Today To Make You Feel Proud? - The Biggest Loser*~*~*~*"Meditate. Live purely. Be quiet. Do your work with mastery. Like the moon, come out from behind the clouds! Shine".-Buddha*~*~*~*"Giving Up Is NOT An Option." - Sapphyre*~*~*~*"Whoever Said 'Nothing Tastes As Good As Thin Feels' Obviously Never Had A Jalapeno Double Cheeseburger ..." - Sapphyre*~*~*~*"Don't Dig Your Grave With Your Own Knife and Fork." - English Proverb*~*~*~*"Don't borrow someone else's spectacles to view yourself with."-Simon

Travaglia*~*~*~*"Sometimes These Little Setbacks Are Just What We Need To Take A Giant Step Forward ..." Knight/Real Genius*~*~*~*

"If I look down the road and see how far I have to go, I may get discouraged. If I overthink every aspect of what I need to do to succeed I may give up. If I focus on just today and make it as perfect as I can, I will succeed." -Sapphyre

[Guest guest]

My doctor believes that high RT3 is related to liver toxicity. I have a RT3 issue and used a liver detox product (Metagenics Ultra Clear Plus) and reduced my rT3 from 405 to 304 in 6 weeks time. You could be detoxing too much and overloaded your liver. That will stress your adrenals too.

Steph

Frustrated

Hi again,I am on the iodine protocol(50mg/day) and I believe after several months it is working as I feel far fewer detox side effects BUT my cortisol test shows my cortisol levels are only okay but never at the top in the morning and at noon I plummet near the bottom of the graft and stay low the rest of the day. I have a RT3 problem with a ratio of 12 but for now I am taking ERFA 90mg per day. My TSH was 13.2 when I first started the Iodoral but that seems to be the case on iodine for at least 6 months, so I am not worried about that for now and will test in July which will be the 6 month mark. Here is the question I have if I just stick to the iodine protocol for now at 50 mg per day might all the other problems clear up on their own. Would the RT3 problem improve, would my adrenals heal on Iodoral alone with companion nutrients? Has anyone experienced this and had success just using the iodine protocol? I feel like I am trying to deal with too many thing at once and I am getting frustrated.Thanks for any help or direction,Kris

[Guest guest]

Thanks Steph,

I know you have mentioned Metagenics Ultraclear before and I can believe that my

liver is stressed as I also have one drink a day in the evening which with

detoxing Bromide, etc probably does tax my liver. I do use my FIR sauna and I do

take a mixture by Life Extension called Anti-Alcohol Anti-Oxidants which despite

the name has lots of good things in it for taking on a daily basis not just for

those who consume alcohol. I can believe that my midday cortisol crash is a

result of detoxing as I take the 50 mg of Iodine in the morning. Should I take

the iodine in increments instead of all at once to avoid this?

Also, if you have a high RT3 do you take T3 only? Or are you just taking the

UltraClear and doing the Iodine Protocol? I am reluctant to stop taking my ERFA

but I know I have had a problem with increasing dosage ever since I started on

Levothyroxine years ago and it hasn't changed with NDT.

I conclude that the Iodine Protocol is playing in to all of this and until I

really start to get enough I will continue to have some of these problems.

Perhaps I should be taking more Iodine.

Kris

>

> My doctor believes that high RT3 is related to liver toxicity. I have a RT3

issue and used a liver detox product (Metagenics Ultra Clear Plus) and reduced

my rT3 from 405 to 304 in 6 weeks time. You could be detoxing too much and

overloaded your liver. That will stress your adrenals too.

>

> Steph

>

>

> Frustrated

>

>

>

> Hi again,

> I am on the iodine protocol(50mg/day) and I believe after several months it

is working as I feel far fewer detox side effects BUT my cortisol test shows my

cortisol levels are only okay but never at the top in the morning and at noon I

plummet near the bottom of the graft and stay low the rest of the day. I have a

RT3 problem with a ratio of 12 but for now I am taking ERFA 90mg per day. My TSH

was 13.2 when I first started the Iodoral but that seems to be the case on

iodine for at least 6 months, so I am not worried about that for now and will

test in July which will be the 6 month mark. Here is the question I have if I

just stick to the iodine protocol for now at 50 mg per day might all the other

problems clear up on their own. Would the RT3 problem improve, would my adrenals

heal on Iodoral alone with companion nutrients? Has anyone experienced this and

had success just using the iodine protocol? I feel like I am trying to deal with

too many thing at once and I am getting frustrated.

>

> Thanks for any help or direction,

> Kris

>

[Guest guest]

Hi Diane!

Unfortunately, most people have to travel in order to find a doctor who is

experienced in flatback revision surgery. It would certainly be nice if every

doctor was qualified, so that we'd have one locally for each patient, but most

people have to travel at least a little bit (and some travel quite far) in order

to find one.

Perhaps a walker would help you walk a little more comfortably and without

tiring you out so quickly. It might be tough to swallow emotionally at first,

but it might do a lot to help with keeping your independence.

I believe that I've heard some people see a Dr. Akbarnia (spelling might be

wrong ) in the L.A. area. I don't know if he has operated on any of our

members, but I do remember hearing his name at least for a consultation. It

might be worth looking into, since he at least as HEARD of flatback!

Good luck with it all!

>

> Does anyone know of a good Revision Doctor in Riverside county. It,s just

outside of L.A. Iam currently seeing a county hospt. doctor who recomeds more

physical therapy and a shoe insert (lift) to enable me to walk better and stand

up straight. And to hopefully elimanate the burninng sensation on my heels. He

has said yes I do have Flatback. I had my first Spinal surgery 7 mo. ago. I have

had flatback since right out of the hospital. And to only complicate matters

more I had to move to a new county 2 mo. after my surgery due to finances. In

moving I had to find a new Doctor due to Insurance reasons. Iam in a great deal

of pain all the time, and any mobility is a constant effort I tire out very

quickly. I totally dread walking anywhere and always have to have the assistants

of a cart or walking aide. The only insurance I have is Medi-cal. Iam constanly

searching for new and more info on Flatback. Sagital Imbalance due to the

Herrington Rod placement in my spine 7 mo. ago. Frustrated but staying positive,

Diane

>

[Guest guest]

~ Thank you so much. I will keep looking and let you know what I find out. I have included in my search a few of the doctors from the Feisty Forum. I relize it is going to be a long and involved proscess, one Iam on a mission to persue. Staying Feisty Diane

From: rebeccamaas <rebeccamaas@...>Subject: Re: Frustrated Date: Monday, May 3, 2010, 5:15 AM

Hi Diane!Unfortunately, most people have to travel in order to find a doctor who is experienced in flatback revision surgery. It would certainly be nice if every doctor was qualified, so that we'd have one locally for each patient, but most people have to travel at least a little bit (and some travel quite far) in order to find one. Perhaps a walker would help you walk a little more comfortably and without tiring you out so quickly. It might be tough to swallow emotionally at first, but it might do a lot to help with keeping your independence. I believe that I've heard some people see a Dr. Akbarnia (spelling might be wrong ) in the L.A. area. I don't know if he has operated on any of our members, but I do remember hearing his name at least for a consultation. It might be worth looking into, since he at least as HEARD of flatback!Good luck with it all!>> Does anyone know of a good Revision Doctor in Riverside county. It,s just outside of L.A. Iam currently seeing a county hospt. doctor who recomeds more physical therapy and a shoe insert (lift) to enable me to walk better and stand up straight. And to hopefully elimanate the burninng sensation on my heels. He has said yes I do have Flatback. I had my first Spinal surgery 7 mo. ago. I have had flatback since right out of the hospital. And to only complicate matters more I had to move to a new county 2 mo. after my surgery due to finances. In moving I had to find a new Doctor due to Insurance reasons. Iam in a great deal of pain all the time, and any mobility is a constant

effort I tire out very quickly. I totally dread walking anywhere and always have to have the assistants of a cart or walking aide. The only insurance I have is Medi-cal. Iam constanly searching for new and more info on Flatback. Sagital Imbalance due to the Herrington Rod placement in my spine 7 mo. ago. Frustrated but staying positive, Diane>

[Guest guest]

Just want to add that if you do not have to carry anything,

but just want to walk, then I suggest trying a set of Nordic Walking Poles

which are a similar idea to using Cross-country skiing. I have found these to

be extremely helpful as I have a more balanced gait than using a cane, plus I

can walk at a faster pace. I use a walker if I have to carry anything, but I

found I have more freedom with the poles as I am not restricted to only wheelchair

accessible areas and they take up less room, both in transportation and getting

into certain areas.

Being in Canada,

I am still trying to work through the system to get the improvement that I

need. Having been diagnosed with diabetes last year has made it more

complicated, even though I have the diabetes under control.

Llweyn

From:

[mailto: ]

On Behalf Of rebeccamaas

Sent: May-03-10 5:15 AM

Subject: Re:

Frustrated

Hi Diane!

Unfortunately, most people have to travel in order to find a doctor who is

experienced in flatback revision surgery. It would certainly be nice if every

doctor was qualified, so that we'd have one locally for each patient, but most

people have to travel at least a little bit (and some travel quite far) in

order to find one.

Perhaps a walker would help you walk a little more comfortably and without

tiring you out so quickly. It might be tough to swallow emotionally at first,

but it might do a lot to help with keeping your independence.

I believe that I've heard some people see a Dr. Akbarnia (spelling might be

wrong ) in the L.A.

area. I don't know if he has operated on any of our members, but I do remember

hearing his name at least for a consultation. It might be worth looking into,

since he at least as HEARD of flatback!

Good luck with it all!

>

> Does anyone know of a good Revision Doctor in Riverside

county. It,s just outside of L.A. Iam currently seeing a county hospt.

doctor who recomeds more physical therapy and a shoe insert (lift) to enable me

to walk better and stand up straight. And to hopefully elimanate the burninng

sensation on my heels. He has said yes I do have Flatback. I had my first

Spinal surgery 7 mo. ago. I have had flatback since right out of the hospital.

And to only complicate matters more I had to move to a new county 2 mo. after

my surgery due to finances. In moving I had to find a new Doctor due to

Insurance reasons. Iam in a great deal of pain all the time, and any mobility

is a constant effort I tire out very quickly. I totally dread walking anywhere

and always have to have the assistants of a cart or walking aide. The only

insurance I have is Medi-cal. Iam constanly searching for new and more info on

Flatback. Sagital Imbalance due to the Herrington Rod placement in my spine 7

mo. ago. Frustrated but staying positive, Diane

>

[Guest guest]

Hi ,

So sorry to hear that it's a 3 1/2 week wait to get Kaitlyn into a pedicatric neurosurgeon. I figured you'd have some time before getting in bc/any neurosurgeon, let a lone a pediatric one is hard to come by. Any specialty dr is hard to get into right away. I know it's a race against time, but if you've called around and that's the earliest you could get her seen the only other thing to do would be to call everyday to see if there was a cancellation. Just be politely pushy and explain the situation. I'm sure every child going to a neurosurgeon needs to be seen, but just explain that you can't loose time and that Shriners Hospital in Chicago wants to cast your baby girl for Infantile Scoliosis ASAP. Have you tried calling U of M to see if they could get you in earlier? I know it'll be a bit farther of a drive for you, but it would be worth it if they could see her

sooner. The number for their dept of neurosurgery is 734-936-7010. We saw a geneticist at U of M for and loved him. It's worth a shot. There's another practice called Pediatric Neurosurgery Group that works out of Children's and St. 's. You could try calling them, they have an office in Detroit, Grosse Pointe and Southfield. Their number is 313-833-4490 for appts for all 3 locations. Hope this helps and that you can get in sooner with someone else. Keep us updated, I know it's frustrating, but it'll all come together.

(mother to - 23 1/2 mths old - 2 casts - 1 brace - currently at 0 and treatment free for 3 1/2 mths)

From: Dobbs <ohana_is_love@...>Subject: frustratedinfantile scoliosis treatment Date: Tuesday, June 8, 2010, 9:44 AM

Hi everyone,

My daughter Kaitlyn was dianosed with Chiari Malformation, when she got her MRI last week.

Dr. S in Chicago wants us to see the Neurosurgen 1st, before we start casting.

To see if she'll need surgery or just have it watched. I'm beside myself because the soonest apt. time I could get with our local Chilrens Hospital is the 30th of June. like 3 1/2 wks away...

and I know we can't loose that time...with her scoli.

Not sure what to do...I want a pediatric Neuro. for sure...and Childrens Hosp. here at home seems to be the only option.

Should I go and call around to find another...who can get her in sooner?

Any advance?

Thanks

Mommy to Isaac (3 1/2) and Kaitlyn (11 months) 39 deg curve and Chiari..

[Guest guest]

Hi ,

I know, it is very hard to see these specialist's quickly. I just didn't think it would be a 3 1/2 wk wait. :-/

But I can't do anything to change that. She has an apt. with Dr. Hamm at Childrens Hospital in Detroit.

I tried U of M as well, they do not take her insurence, so that's not an option for us.

Dr. S at Chicago said they have a very good Neurosurgen there, and he would get us set up with him...if we wanted him to see her. So I called there to see if he could see her before the 30th, just waiting to hear back from them. Thanks for you help

From: Sullivan <elizsullivan6@...>infantile scoliosis treatment Sent: Tue, June 8, 2010 10:07:15 AMSubject: Re: frustrated

Hi ,

So sorry to hear that it's a 3 1/2 week wait to get Kaitlyn into a pedicatric neurosurgeon. I figured you'd have some time before getting in bc/any neurosurgeon, let a lone a pediatric one is hard to come by. Any specialty dr is hard to get into right away. I know it's a race against time, but if you've called around and that's the earliest you could get her seen the only other thing to do would be to call everyday to see if there was a cancellation. Just be politely pushy and explain the situation. I'm sure every child going to a neurosurgeon needs to be seen, but just explain that you can't loose time and that Shriners Hospital in Chicago wants to cast your baby girl for Infantile Scoliosis ASAP. Have you tried calling U of M to see if they could get you in earlier? I know it'll be a bit farther of a drive for you, but it would be worth it if they could see her

sooner. The number for their dept of neurosurgery is 734-936-7010. We saw a geneticist at U of M for and loved him. It's worth a shot. There's another practice called Pediatric Neurosurgery Group that works out of Children's and St. 's. You could try calling them, they have an office in Detroit, Grosse Pointe and Southfield. Their number is 313-833-4490 for appts for all 3 locations. Hope this helps and that you can get in sooner with someone else. Keep us updated, I know it's frustrating, but it'll all come together.

(mother to - 23 1/2 mths old - 2 casts - 1 brace - currently at 0 and treatment free for 3 1/2 mths)

From: Dobbs <ohana_is_love>Subject: [infantile_scoliosi s] frustratedinfantile scoliosis treatment @groups. comDate: Tuesday, June 8, 2010, 9:44 AM

Hi everyone,

My daughter Kaitlyn was dianosed with Chiari Malformation, when she got her MRI last week.

Dr. S in Chicago wants us to see the Neurosurgen 1st, before we start casting.

To see if she'll need surgery or just have it watched. I'm beside myself because the soonest apt. time I could get with our local Chilrens Hospital is the 30th of June. like 3 1/2 wks away...

and I know we can't loose that time...with her scoli.

Not sure what to do...I want a pediatric Neuro. for sure...and Childrens Hosp. here at home seems to be the only option.

Should I go and call around to find another...who can get her in sooner?

Any advance?

Thanks

Mommy to Isaac (3 1/2) and Kaitlyn (11 months) 39 deg curve and Chiari..

[Guest guest]

I know it stinks and it's hard to deal with when it's out of our hands. Plus, with IS not being widely known or discussed yet, some specialty dr's just don't know or see the urgency in getting in quick. Too bad U of M doesn't take your insurance. Hopefully you'll hear back from the dr in Chicago and maybe even get in sooner. If that's the case then maybe you could coordinate with Dr. S to have her casted if the neuro dr doesn't feel surgery is necessary that way you get 2 things done in 1 trip. Hope it all works out.

(mother to - 23 1/2 mths old - 2 casts - 1 brace - currently at 0 and treatment free for 3 1/2 mths)

From: Dobbs <ohana_is_love>Subject: [infantile_scoliosi s] frustratedinfantile scoliosis treatment @groups. comDate: Tuesday, June 8, 2010, 9:44 AM

Hi everyone,

My daughter Kaitlyn was dianosed with Chiari Malformation, when she got her MRI last week.

Dr. S in Chicago wants us to see the Neurosurgen 1st, before we start casting.

To see if she'll need surgery or just have it watched. I'm beside myself because the soonest apt. time I could get with our local Chilrens Hospital is the 30th of June. like 3 1/2 wks away...

and I know we can't loose that time...with her scoli.

Not sure what to do...I want a pediatric Neuro. for sure...and Childrens Hosp. here at home seems to be the only option.

Should I go and call around to find another...who can get her in sooner?

Any advance?

Thanks

Mommy to Isaac (3 1/2) and Kaitlyn (11 months) 39 deg curve and Chiari..

[Guest guest]

Can they tell you how bad the chiari is? I know that our orthopedic was able to

talk to another doctor at the same hospital about his MRI and find out whether

it would be ok to continue casting before we were able to get a neurologist

appointment. In our case his is not a situation where they need to operate, but

rather will just watch it.

Jenn

Mommy to Cole, 2.5 years, 1st brace from rochester, 2 degrees down from 47 after

10 months in 5 casts

>

>

> >From: Dobbs <ohana_is_love>

> >Subject: [infantile_scoliosi s] frustrated

> >infantile scoliosis treatment @groups. com

> >Date: Tuesday, June 8, 2010, 9:44 AM

> >

> >

> > 

> >Hi everyone,

> >

> >My daughter Kaitlyn was dianosed with Chiari Malformation, when she got her

MRI last week.

> >Dr. S in Chicago wants us to see the Neurosurgen 1st, before we start

casting.

> >To see if she'll need surgery or just have it watched.  I'm beside myself

because the soonest apt. time I could get with our local Chilrens Hospital is

the 30th of June.  like 3 1/2 wks away...

> >and I know we can't loose that time...with her scoli.

> >Not sure what to do...I want a pediatric Neuro.  for sure...and Childrens

Hosp. here at home seems to be the only option. 

> >Should I go and call around to find another...who can get her in sooner?

> >Any advance?

> >Thanks

> >

> >Mommy to Isaac (3 1/2) and Kaitlyn (11 months) 39 deg curve and Chiari..

> >

>

[Guest guest]

Hi ,

I think you're on the right track in having the Chicago Shriners advocate.

The doc there will get the ball rolling as he understands the importance

of time. It will fall into place. Try not to worry.

HRH

> Hi ,

>

> I know, it is very hard to see these specialist's quickly. I just didn't

> think it would be a 3 1/2 wk wait. :-/

> But I can't do anything to change that.  She has an apt. with Dr.

> Hamm at Childrens Hospital in Detroit.

> I tried U of M as well,  they do not take her insurence, so that's not an

> option for us.

> Dr. S at Chicago said they have a very good Neurosurgen there, and he

> would get us set up with him...if we wanted him to see her.  So I called

> there to see if he could see her before the 30th, just waiting to hear

> back from them.   Thanks for you help  

>

>

>

>

>

> ________________________________

> From: Sullivan <elizsullivan6@...>

> infantile scoliosis treatment

> Sent: Tue, June 8, 2010 10:07:15 AM

> Subject: Re: frustrated

>

>  

> Hi ,

>

> So sorry to hear that it's a 3 1/2 week wait to get Kaitlyn into a

> pedicatric neurosurgeon.  I figured you'd have some time before getting

> in bc/any neurosurgeon, let a lone a pediatric one is hard to come by. 

> Any specialty dr is hard to get into right away.  I know it's a race

> against time, but if you've called around and that's the earliest you

> could get her seen the only other thing to do would be to call everyday to

> see if there was a cancellation.  Just be politely pushy and explain the

> situation.  I'm sure every child going to a neurosurgeon needs to be

> seen, but just explain that you can't loose time and that Shriners

> Hospital in Chicago wants to cast your baby girl for Infantile

> Scoliosis ASAP.  Have you tried calling U of M to see if they could

> get you in earlier?  I know it'll be a bit farther of a drive for you,

> but it would be worth it if they could see her sooner.  The number for

> their dept of neurosurgery is 734-936-7010. 

> We saw a geneticist at U of M for and loved him.  It's worth a

> shot.  There's another practice called Pediatric Neurosurgery Group

> that works out of Children's and St. 's.  You could try calling

> them, they have an office in Detroit, Grosse Pointe and Southfield. 

> Their number is 313-833-4490 for appts for all 3 locations.  Hope this

> helps and that you can get in sooner with someone else.  Keep us

> updated, I know it's frustrating, but it'll all come together.

>

> (mother to - 23 1/2 mths old - 2 casts - 1 brace -

> currently at 0 and treatment free for 3 1/2 mths)

>  

>

>

>

>

>>From: Dobbs <ohana_is_love>

>>Subject: [infantile_scoliosi s] frustrated

>>infantile scoliosis treatment @groups. com

>>Date: Tuesday, June 8, 2010, 9:44 AM

>>

>>

>> 

>>Hi everyone,

>>

>>My daughter Kaitlyn was dianosed with Chiari Malformation, when she got

>> her MRI last week.

>>Dr. S in Chicago wants us to see the Neurosurgen 1st, before we start

>> casting.

>>To see if she'll need surgery or just have it watched.  I'm beside

>> myself because the soonest apt. time I could get with our local Chilrens

>> Hospital is the 30th of June.  like 3 1/2 wks away...

>>and I know we can't loose that time...with her scoli.

>>Not sure what to do...I want a pediatric Neuro.  for sure...and

>> Childrens Hosp. here at home seems to be the only option. 

>>Should I go and call around to find another...who can get her in sooner?

>>Any advance?

>>Thanks

>>

>>Mommy to Isaac (3 1/2) and Kaitlyn (11 months) 39 deg curve and Chiari..

>>

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