LIFE

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LIFE

Postby pamela d » Sun Oct 28, 2012 3:30 am

Hello all,

It has been quite a long time since my last post.

It is not often that I find myself wondering what is "in store" for me. I take one day at a time, and occasionally, plan for the future.

I am feeling frustrated with the medical community at large, and cannot seem to focus on articulating my symptoms/overall condition to my doctors.

My medical team consists of two doctors. A GP/FP, and a Neurologist. The GP I have seen for 3 years...pre, and post CM diagnosis. The Neurologist..post diagnosis, and PFD with duraplasty x 2.(both surg. 2009)

For two years, following surgeries for Cm, at Cedar Sinai Med. Center in CA, I was unable to rec. follow up care from a Neurologist in Alaska. The Anchorage Drs refused to see me, because I had obtained surgical care "out of state", and they did not want to take on any post surg. complications. Subsequently, I learned to take what came my way, on my own.

After two years, magically, a Neurologist in Anchorage agreed to see me. She seemed to be concerned, confident that she could treat/help me, but only if I agreed to take upwards to five different medications.

My metabolism has been shot for two years prior surg. and 2 1/2 post same. All of the meds. recommended would slow down my metabolism even more so, and I just did not want to be more sedentary than I already seemed to be.

Fast forward to Sept. 2012, and I feel that there is no recourse for CM treatment that I can benefit from.

My symptom are: Fatique, daily heaache , ranging from level 2 to 6 (sometimes worse), mostly manageable with Aleve, Neuro/Electric shock , which is tolerable, most times, Light sensitivity, bowel problems, ringing in the ears (which does not bother me) at times, my head feels that it is going to blow up at the surg. site ( I call it the alien in the back of my head) along with a host of other issues.

What really upsets me is that the Neuro, which I have seen two times, has not answers for me, unless I want to take meds. that slow me down even more. The thought of that depresses me.

It seems as if we all have to deal with our issues on our own, for the most part, and that is a bummer.

Wish there were more answers out there for all of us, but in the mean time, it helps to just get this off of my chest.

I wish all of you insight, and the motivation and ability to take care of yourself, and to not worry about what may come, only "what is" today.

Thank you all for your continued effort to help all that come to this site. It is such a relief to see how everyone is there for each other. It helps that you all are there on the occasional bad day.

Pamela

Cm I 13 mm
PFD, CI Lam., Duraplasty 03/2009
Repair Pseudo Meng. 05/2009T
TBI Frontal Lobe 06/1964
Various spine issues
pamela d
 
Posts: 37
Joined: Tue Feb 17, 2009 3:34 am
Location: anchorage alaska

Re: LIFE

Postby smann » Mon Oct 29, 2012 4:54 pm

Hi,

I completely understand. I live in NC and had my last surgery for CM in NY. I can't find anybody locally that will or even knows how to treat me. I pretty much tough it out on my own. I do, however; get pain meds from my pain clinic. I couldn't survive without them. Best wishes to you and very gentle hugs!
[img][/img] Susan
smann
 
Posts: 20
Joined: Thu Oct 11, 2012 1:17 pm

Re: LIFE

Postby pamela d » Fri Nov 02, 2012 11:23 pm

smann,

Thank you for your kind words.....often, that is all it takes.

I was in a pretty bad place when I posted my last message, and just the act of doing so really helps.

Members do no always comment on posts, but I know that they are there, just the same.

I really cannot say that my two physicians have not tried to help me, but for me, all of the meds. I have tried, have made my situation worse. ( except for the pain meds, for a few weeks after surgeries)

Really, if I think about it, trial and error, on my own has taught me quite a bit about my condition. If I could take pain meds, I would, but they make me very sick.

If anyone else out there has a weak stomach, and has found a pain med that works for them, I would love to know what that is.

smann..... Warm and gentle hugs, right back at you. :P
pamela d
 
Posts: 37
Joined: Tue Feb 17, 2009 3:34 am
Location: anchorage alaska

Re: LIFE

Postby kiminfla » Mon Nov 12, 2012 8:39 pm

Pamela, So sorry to read of your struggles. I'm rooting for you! Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
kiminfla
 
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Re: LIFE

Postby tennesseewalker » Mon Dec 10, 2012 8:40 pm

Have you had a thyroid panel run? Hypothyroidism causes low metabolism and fatigue big time. Just a thought.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
tennesseewalker
 
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Joined: Fri Jun 08, 2007 3:47 pm
Location: Orlando, FL

Re: LIFE

Postby smann » Sun Dec 23, 2012 5:00 pm

Hi Pamela,

I'm sorry you're having a rough time right now. It does seem that so often we carry this burden alone. We do learn to just take what our bodies dish out all by ourselves. I take a lot of meds, but I couldn't survive w/out them. Hopefully, you will find a doctor who will have diffirent options for you if that's what you want. Have you ever thought about going to a Pain Management clinic? I get my pain meds at one, but I've heard that they have other options for people who either don't need or don't want the meds...just a thought. Gentle Hugs!
[img][/img] Susan
smann
 
Posts: 20
Joined: Thu Oct 11, 2012 1:17 pm

Re: LIFE

Postby pamela d » Mon Dec 24, 2012 1:23 am

@ Mary: Thanks for the suggestion regarding Thyroid panel. I will ask my GP to if she will order that test for me. I tend to get "stuck" in my main diagnosis.

@smann: I had not thought about going to a pain management clinic, because I did not know that they may have alternative methods (besides meds) to deal with pain. I have been doing a bit more exercise in the last three weeks, and sometimes it feels bad, and sometimes it helps. Just have to figure out which methods help. I like the treadmill, although, because of balance, I do hang on to the side bars. I am also working on Pilates and I like it. Like you stated "trial and error" is the name of the game. Since I started this thread, I am doing quite a bit better. I just needed to vent. One thing that bothers some Alaskans ( I am one) is the lack of daylight in winter. As of yesterday, we gained 12 seconds of additional daylight, and counting. : )

To All who come to this board I wish you all HAPPY HOLIDAYS!!!

THANK YOU!!
pamela d
 
Posts: 37
Joined: Tue Feb 17, 2009 3:34 am
Location: anchorage alaska

Re: LIFE

Postby smann » Mon Dec 24, 2012 7:42 pm

Pamela, Just don't give up. And you know we are all here, rooting for you. MERRY CHRISTMAS!
[img][/img] Susan
smann
 
Posts: 20
Joined: Thu Oct 11, 2012 1:17 pm


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