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straydog
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Date Joined Feb 2003
Total Posts : 13467
   Posted 2/28/2009 10:41 AM (GMT -7)   
Hi Stella,
 
I am so glad to see you posting again. When you are not on the forum for awhile I always worry that you are in a bad way and struggling with your health. I sure hope you are getting some good pain relief.
 
I don't know if you know it or not but my old pain mgt dr closed his practice the middle of November. He did find all of us with pumps a new pump dr here in Ft Worth.  The day he told me he was closing I just cried right there in front of him, then I got embarrassed because I am not a cryer. Then when I asked him if the two other pain drs in the clinic if they were taking over his patient load he said no, their own patient load was too heavy. Well, I panicked at that point. Then he went on to tell me it was nearly impossible to get another dr to take an existing  pump patient on, I really panicked.  He said the new dr only handled pump patients and loved the work and had over a decade of experience in them. Well, I was still just sick over this, reassurances from him or not. He had been my dr for 5 yrs, I trusted him.
 
I met my new dr for a meet & greet. Wow, did she ever blow me away. OMG she does have the experience a pump patient would need and then some. She is just awesome. She doubled my concentration level of Dilaudid, increased the doseage of it and then reduced the Bupivicanine from 15% to 7.3. She said she never goes over 7.3 because it causes leg problems.  That medicine is what goes in epidurals for woman having babies or for having surgery, so that explains why I was getting numbness in my right foot. Duh!! Anyway, she believes in using the pumps to their maximum and the difference she has made in my pain level is incredible. I never thought it would ever be this good. Of course now I have a bug that has bit in the behind and has me miserable.
 
I sure hope you are doing ok and hope you wil continue to post. You offer us alot of good information and wisdom. Hugs....Susie 


Stella Marie
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Date Joined May 2005
Total Posts : 601
   Posted 3/1/2009 12:16 AM (GMT -7)   
 
Thank you for the nice posting.  There are times things could be a little better, so I often fly under the radar when that happens.  As you know, chronic illness' are a rocky and lonely road.  Since going on disability several years ago and not always feeling up to participating in many activities, I have watched most of our friends drift away from us.  Others just don't know what to say, so I think they avoid calling.  I have learned the true lessons of life being ill - what is really important.  Life is good and I have a wonderful husband and family.  I hope things are going well for you too.  Clone that pain doctor and send me a copy.  You are so right - experience and confidence is what you need in a good pump doc.  Thank you for thinking about me.
 
 

Stella Marie

Rare neurodegenerative disease called “Multiple System Atrophy”.  Wheelchair, O2, & Bipap, intrathecal pump, Neurostimulator, dystonia, neuropathic pain and spasticity.


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 3/1/2009 12:24 AM (GMT -7)   
Stella,

Do you have Cervical Dystonia aka Torticollis? I may have this. I kind of have
that diagnosis. It's rare - very difficult to get an accurate dx.

I think it's almost impossible to have friends when your chronic pain is severe.
I am thankful for my family too. My husband has stayed with me through this
he double toothpicks. I am, in some ways, blessed.

Pamela

I may have asked you about Dystonia before. If so, please excuse me. Foggy in
this head.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 3/1/2009 9:39 AM (GMT -7)   
I agree with the others nice to see you again StellaMarie, Hope you'll be feeling better
to come more often, but if you can't we'll know your watching out for us and really care...
Lots and Lots of Soft Hugz...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland
******** "We could never learn to be brave and patient if there were only joy in the world" from Helen Keller *********

********>^..^<********>^..^<********>^..^<********


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 3/1/2009 11:53 AM (GMT -7)   
Stella Marie after reading you post, it reminded me of what I just said in my post introducing myself just a few days ago, further into it I was talking about how easy it was to become isolated do to chronic pain and disability. You are right about friends not knowing what to say and drifting away!

I also noticed on the bottom of your post that you are on O2 and BiPAP, If you don't mind, May I ask you, do you also have sleep apnea? and is it part of " Multiple System Atrophy"? I ask because I am abig advocate, of treating sleep apnea, and I my self am on supplemental O2 at 3lpm and use the VPAP Adapt SV at night to treat my Complex sleep apnea. Sometimes I am not sure which is worse the waking up with pain and or muscle spasms or having to sleep with a seemingly thousand mile and hour wind blowing into your nose and mouth!

I do wish you all the best!
Good Luck White Beard

Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 3/1/2009 4:26 PM (GMT -7)   

White Beard

We sound like night time twins.  I have severe central apnea.  It is part of the disease process, but the medications that I take for severe muscle spasms and pain also have a negative affect on my apnea.

How is the VPAP working for you.  I was able to reduce my Respiratory Event Index from 67.3 to 12.9 using O2 at 3 LPM.  I also have BIPAP.  My doctor was discussing a trial of VPAP with me.  I have not done much research about the differences.  My respiratory specialist is always saying that anyone on long term opiods and muscle relaxants should have a sleep study.  The percentage of chronic pain patients with apnea is high and as you know - it is extremely hard on your heart.

Let me know about your VPAP.

Thanks 


Stella Marie

Rare neurodegenerative disease called “Multiple System Atrophy”.  Wheelchair, O2, & Bipap, intrathecal pump, Neurostimulator, dystonia, neuropathic pain and spasticity.


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 3/1/2009 4:46 PM (GMT -7)   

Pamela

I am so sorry about your dystonia.  Mine is upper back and arms.  As you know it is a horrible disease.  Mine feels exactly like what I would describe as an intense muscle "Charlie horse" that can last for an extended period of time.  I did have problems with posturing, but since on Baclofen, I have been much better. 

Most people have no idea what dystonia is and many health care workers don't what to do with it.  At different times, I have taken combinations of Baclofen, Zanaflex, Robaxin, Klonopin and Botox injections attempting for control. I think the treatment plan at times is to throw as much as you can at it and see what sticks.  Nothing gives me total control, the best I can hope for is about 80%. I also suffer from the type of spasticity normally associated with MS or CP. 

I have a friend with cervical (neck) dystontia and unfortunately he is quite disfigured at times.  It is ashame the way people stare and the comments they make.  The botox injections and Zanaflex work best for him.  Does your dystonia cause your head to be pulled down toward your shoulder?

Sorry I did not answer you sooner.  I must have missed your question.

Well I am off to Emerald City to see if the Great and Wonderful Wizard of Oz will give me a new brain.

 


Stella Marie

Rare neurodegenerative disease called “Multiple System Atrophy”.  Wheelchair, O2, & Bipap, intrathecal pump, Neurostimulator, dystonia, neuropathic pain and spasticity.


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 3/2/2009 12:02 PM (GMT -7)   
Stella Marie
The VPAP Adapt SV has simply been a Godsend for me! I started off on CPAP and then BiPAP in 18 months I had 6 sleep studies done, nothing really helped, when on BiPAP my presure was 20/16. Then I was put on the VAP ASV this is specifically made to treat Central Apneas. I can't begin to tell you what a difference it has made. my average pressure is 12.2 and my AHI's are usually below 2.0. It is well worth checking out! You really should try and go to the ResMed site and read up on the VPAP Adapt SV and about Central Apneas, they have a wealth of information about Central Apneas and how to treat them!

Along wit my Oxycontin for pain, I also take Baclofen for muscle spasms 25mg, every 8 hours. That med has been the greatest! I get muscle spasms so bad, (Charlie horses) that knot the muscles and will not release! The Baclofen has helped immensely in controling them, but every now and then it seems like it doesn't work for a while, I have yet to figure out why! of course no one has been able to tell me why I have the muscle spasms to begin with, as I seem to get them everywhere, neck, jaw, hand, back, inner thighs, calves, and feet, and a few other places! But when you are literally jerked out of sleep with your muscles in a knot, and your trying to get your mask off with out ripping your hose off your XPAP machine and not tipping it over, and the pain is............wel let us just say it HURTS! I can laugh about it when it is not happening! But when it is, it sure isn't a laughing matter! I will have to read up on dystonia as I have also heard that mentioned to me several times, because of my right shoulder is dropped and considerabley lower than my left, but along with that several Docs have mentioned MS, but that has never been confirmed,. Rush movemtent disorder clinic in Chicago has definitely ruled out Parkinsons, which I have been diagnosed and treated for with meds for the last 2 years!! I wil not comment on what I think about that!
I do hope you have a Great Day!
Good Luck to You

White Beard

Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 3/2/2009 7:36 PM (GMT -7)   
White Beard = Thanks for the info. By the way I was also treated for Parkinson's for while. All of these brain diseases mimic one another. There seems to be allot of overlap in neurodegenerative diseases and certain brain injuries; central apnea, movement disorders, spasticity, swallowing problems, dsytonia's, gait and balance issues, sexual dsyfunction, major sleeping disorders and a variety of pain problems, ocular problems like nystagmus, myoclonus, depression, etc. Many times it takes years for specific diseases to present enough evidence fpr neurologists to be able to make a diagnosis. Until that happens we fall into what I can medical purgatory.

Thanks for the VPAP info. I am reading up on it now.

Stella Marie

Rare neurodegenerative disease called “Multiple System Atrophy”.  Wheelchair, O2, & Bipap, intrathecal pump, Neurostimulator, dystonia, neuropathic pain and spasticity.


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 3/2/2009 8:23 PM (GMT -7)   
Stella Marie I have never heard that term "medical purgatory" used before but it definitely is appropriate. The frustration of it all, is times so over whelming. every thing you listed just now I have or have experienced, some doctors say some of it is from my degenerative disc disease, but not all of it, others say there is definitely something else going on. and for me yes the term "medical purgatory" is exactly what it is!

Really you were also treated for Parkinsons? You know I never ever really ever thought I had it, but the neurologist I had was convinced that was part of my problem, but he also said he thought it was a combination of several different thing. Two doctors have even said they thought I had Stiffman syndrome. I can't begin to tell you the number of different thing I have heard them say "It could be.......", " I think you might have.......", " has anyone suggested that it might be..........." and it goes on and on! Who do you believe? or what? Did it take you a long time for you to get your diagnosis? I Thank-You for the insight in your post. I wish you well and I hope the you might find answers in your research on the VPAP.
Good Luck to You
White Beard
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