pelvic muscle atrophy

[opus88]

The info on the link I posted previously does not specifically discuss norepinephrine or other similar substances. The point it makes, though, is that the ratio of chemicals is what drives the rest of the body to act in certain ways.

Sorry - my mental fatigue has been strong lately, making me completely unable to research and then piece things together. But I know that chemical balance comes into play with the muscles, whether it be deconditioning or wasting. If the body chemistry can be restored to proper balance for an extended period of time, many (maybe all) of our symptoms can be taken care of.

[Guest tearose]

okay, I did a lot of reading...

The emedicine information was comprehensive. It gave the kind of citations I was looking for! Like many already know, Autonomic Neuropathy can present as POTS or many, many other things. Sometimes, the various autonomic neuropathies can be an end in themselves or they can be a precursor of another disease.

Those of us with muscle wasting may only know over time.

I feel ready for my Monday appointment.

Thanks everyone, tearose

[ginger]

Hey tearose-- I'd love some of those cookies! I'll be at my first visit to Mayo auto. lab Feb 7.

I'll add muscle atrophy/wasting to my long list of questions. I can't seem to keep my leg (quads worse than calves) and pelvic muscles anymore, despite trying to keep up some activity and resistance.

I'm interested in your pelvic reconstruction issues as well. Since I had my spinal cord trauma last Jan, all of my pelvic organs and even external skin are dropping, sagging. Been dx with cystocele, and I think I'm working on rectum and cervix/uterus falling into vaginal canal as well. Already dx with neurogenic bladder. Oh, the joys. When I'm at Mayo I'm also already scheduled to see specialist on these conditions, especially as a result of spinal cord injury.

Is the pelvic reconstruction (did you have what they call a "sling") something you would recommend? I know you're headed to the doc for follow-up, but does it feel better? I'm nervous about any surgery with the POTS thing.

Best wishes for you upcoming doc visit.

Ginger

PS everyone, what was the EDS mentioned earlier?

[Guest tearose]

Oh ginger! This will hopefully be the best thing you can do for yourself. Be ready for a fast paced, run around whirl through the medical maze of tests and brilliant specialists...and an occasional dud. Are you ready? Do you know what you are in for?

First, they will say one week and it will take two.

Learn how to "work the desk" to get your appointments moved up so you get more tests in less time. You will get a little passport booklet thing that has your appointments and your clinic number in, just try to move up appointments whenever possible.

The only test that may really hurt is an EMG, so bring tylenol.

There are many invaluable tests conducted there. The two most important in my case may also help you. The standing/sitting/lying blood draw to test for levels of norepinepherine was what documented my abnormal high levels. The Thermoregulatory Sweat Test is what documented the denervation in my legs. It gets hot, if you don't sweat much like me, it gets tough but imagine your on a sunny deck by a beautiful pool...you'll do fine.

Who is your main doctor?

Big time suggestion...from the moment you meet your main doctor, take notes and make sure he/she knows you want copies of your records on the day you leave. Always be cordial, even to the rare dud of a doctor, share all your questions/problems with your main doctor and when all else fails go to the administration office and get results...yes, I speak from experience. You have to be assertive and proactive to get the best out of this experience! In my case if I had not pushed the envelope they would have kept me for a third week...I just could not do it! And, I insisted on having all my records in my hands!!!

I had to do something about my pelvic condition...I was in bad shape. I mean, the muscle was gone and what remained was not attached!

I'll be happy to answer your questions. Ask away! I did improve after surgery. The question is how long will the repair hold? That is why I need to know if the muscle wasting is accelerated in those of us with hyperadrenergic dysautonomia. It was a rough surgery. It took seven hours and two blood transfusions...that's also because I didn't know then to let the surgeon and anesthesiologist know I had been dx with POTS. I was uneducated then! Now I know so much more. Actually, the surgery wouldn't change because of POTS, the preparation would have been different. I got extremely dehydrated with the pre-op preparation they had me take the night before. It took an hour of IV to get my BP up before they were able to start the operation.

I'll take out my notes later so I can accurately spell the procedures they did. One type of bladder repair has better success than the other, depending on your type of collapse. Let me get

my notes and get back to you.

It was member "dizzy" who asked me if I had considered EDS. That's another syndrome some here have. It is responsible for causing some cases of uterine prolapse.

take care all, tearose

[DancingLight]

tearose,

you must report back after your visit, k?

have a safe trip (looks like no snow for a while...). and i hope you get some of the answers you are looking for.

i am trying to put my thinking cap on for you, but i don't have ANY ideas! i am no help.

we will miss you while you are away!

emily

[Guest tearose]

Emily, I'm taking that job of thinking away from you for now.

You just focus on calming your gut and getting yourself ready!

Thanks for the good journey wishes...

I'm only going away for the day, I guess it just sounds like a long time cause I have to plan everything I do so far ahead!

Oh my, I AM becoming an old woman! I remember when I would laugh when my grandmother would not do something tomorrow cause days later she had an appointment! That sounds a bit too much like me!

that's it for tonight...

sweet dreams everyone, tearose

[DancingLight]

tearose,

what's spontaneaity? i have to plan everything too. especially b/c i can't eat gluten, dairy, etc. i mean where can you find food like that in america?

a day trip is a lot of energy, especially when you have to go so prepared to absorb a lot of medical information. plus, it is hard to prepare mentally and physically. when you are travelling to see a dr. you want to get as much out of it as possible and it seems like so much is at stake. at least that is how i feel.

yup, i'm my jewish grandmother too. right down to talking about my bowels, yelling at the tv, and eating 'zoup'.

goodnight to you too. thanks for taking the thinking cap away. you know how your mind races before an appt and it is hard to focus? that is how i am right now!

emily

[Guest tearose]

Hi everyone, tomorrow is my day to venture to the big city doctor! I'm packing my tote bag today: water, electrolyte packets, emergn-c packets, energy bar, seat cane, warm layers, neosporin and band-aids, hand cream, spare compression hose, change of pants, gaviscon, tylenol, magazine and what the heck...the kitchen sink! only kidding, wash n'drys...

Ginger,

I omitted writing all the info. but the main pelvic repair procedures were Burch, Abdominal-sacrocolopopexy, anterior and posterior repairs. The ASC was performed with mersilene mesh.

The tvt, tape, as I remember has a tendency to fail in people who strain... I preferred the Burch procedure because I wasn't sure I may not strain in the future.

Have you been to a urogyn yet ginger? Have you heard of these internal weights?

bye for now, tearose

[Merrill]

Thnx for the kitchen sink laugh ... You really ARE prepared for any eventuality! How about a piece of fruit to go with that energy bar? Are you spending the night or something? Wishing you a good trip, Tearose, and a successful appointment with your physician. Keep us posted,

m

[DancingLight]

yup, that's how i pack too! always prepared...and i wasn't even a girl scout!

safe travels...

you have been through some really hard stuff tea...it really amazes me. that surgery you had done sounds grueling!

emily

[geneva]

oops!

[geneva]

tearose, just wanted to wish you a safe journey tomorrow and a good med. visit on your trip. I have a POTS BAG in my car at all times with all the essentials and my day trip bag sounds like yours!! BTW do you mean there are people out there who do NOT start days in advance to prepare for a trip????? Earlier today I was making lists....I am a very good list maker (lol)....for a day trip in 2 weeks.

stay warm!

[DancingLight]

i know this is off-topic, but tea and geneva...you just made me feel soooo much better about being such planner and list-maker!

geneva...what's in your POTS bag? that sounds like a really good idea.

emily

[geneva]

Emily, let's see if I can remember the contents of my POTS bag (without actually going to the car to get it!). I decided to keep a separate bag so that I wasn't always trying to get everything together just for a ride to town. This way we can jump in the car and know I have anything I need for flare ups.

a 2nd full set of meds + vitamins

heart monitor -- (the kind Tearose turned me on to that you wear)

bp monitor

various aromatherapy essential oils -- ex. peppermint for nausea

thermometer

small salt shaker

tiger balm pain patches

soft collar neck brace

"bucky" support pillow for your neck

extra pair of compression hose

snacks

bottled water and gatorade

my folding seat/cane is always in my car too. I am probably forgetting some things but you get the idea. Hope no one is offended we are off topic.

[Guest tearose]

I'm back from my urogynecology appointment... This doctor is so incredible understanding that this was a hard trip for me and after speaking with me and examining me, he called another doctor in right away to conduct a urodynamic study on me today!!! They are interpreting it. I'll hear more tomorrow.

I asked the question!!! And he said this in regards to pelvic muscles and any relation to hyperadrenergic dysautonomia. paraphrasing..."it does seem that the chemicals that come into play with an excess of norepinepherine are forcing the muscles constrict and make it difficult to void/move bowels. ...this makes the bladder overstretch and the intestines compact..." also.."when you are ill, all muscles are subject to muscle weakness and wasting."

He wants to review the information he has now on dysautonomia and effects of norepinepherine with his colleagues and then with my dysautonomia doctor!

He is going to call my neurologist at the Mayo Clinic to discuss this!

I phoned out to Minnesota and let them know I would appreciate it if they made sure these doctors connect. This, is the hardest part of having been dx at Mayo. ... getting my local doctors to get the chance to talk to the great wizards of Mayo! Not to get off topic, but I mentioned to the secretary that I am still waiting to hear their intrepretation of my sleep study!!! She finally found it and promised this will all be reviewed...Oh I sure need some answers, I try to be patient, I really need to trust that Mayo will cooperate...please make it so! We can't just trek back out there anytime there are new problems!!!

That's it for now. Thank you for helping me to articulate my question! I'll give you all the news as it comes in! Time for a rest..., tearose

[geneva]

Hi Tearose. So glad to hear that you had a very productive visit with your doctors today and wow that was very considerate to get you in for a test while you were there...nice doctor.

BTW, I was in such a brain fog when this topic started that I could never grasp the details of the discussion much less think of a proper response (sorry). Reading your explanation today of the question was much clearer!! or maybe I am in less of a fog...who knows?

hope Mayo doctors come through for you but I bet you follow up closely with them until they do (lol). good luck.

[opus88]

Oh, Tearose, could it be you are finally going to get some real help locally? It sounds like you had a wonderful experience (well, a dysautonomic's version of wonderful as it pertains to doctors, anyway!) and that you will be taken seriously by this guy and maybe even by his colleagues. It must feel so good! Please let us know what they find and recommend.

[DawnA]

I am so glad you had a good visit and that this Dr is taking so much interest in your case. I hope MAYO is sooperative and you get some advice/ansers. Take care, Dawn

[ginger]

Hi tearose!

I'm glad you're back safe and sound.

You gave me quite a bit to read. Thank you!

Let's see....

I'm working on getting prepared for Mayo--4 weeks from the visit today. That's why I'm here with my 'forum friends.' You all have helped more than I can even thank you!

I've been to Cleveland Clinic Foundation and it's ranked high and set up similar to Mayo, but boy, am I anxious to get to the revered halls of Mayo! I've had to push hard on my docs locally for copies, so I'll take that attitude and your suggestions with me.

I'm scheduled with Dr. Fealey (Low was so backed up) as main doc.

I've had 3 EMGs, including 2 anal sphincter EMGs. Yes, that's right, you heard it. That's no place for a needle with electric charge, whew! Yes, they did show mild chronic damage.

I've seen two urologists, but not one who really does the urogyn combo. Mayo has scheduled me already with a Dr. Deborah Lightner who specializes in genitourinary and pelvic reconstruction issues, especially as result of spinal trauma. So, I'm hopeful she will help. Glad to know there are several methods of reconstruction to choose from... better do some reading!

I printed out your suggestions for my husband to read. He's going with me. Oooo, a second honeymoon at Mayo. Sounds romantic, doesn't it!

I hope you get your answers soon. And I hope you take time to rest after your trip and while waiting for results.

Thanks again

Ginger

[DancingLight]

tea,

i meant to respond sooner to your post...but i am just a teeny bit foggy these days! (might be the lack of food, you think??? )

hey geneva...thanks for posting your pots bag tips! that was great!

anyway, tearose...i don't even know what to say. that is a lot to take in. great that you got so much info. but, man, it is so hard to hear the effects of one problem on other parts of the body, you know?

that is very interesting about the bladder and the bowels. why does one constrict and the other stretch i wonder? i don't know, i'm too tired to put my thinking cap on right now.

please keep us posted and thanks for updating us after your appt.

did you treat yourself to a soap today????? you definitely deserve it after your trip and all of the preparation required beforehand.

emily

[geneva]

Hi Tearose, just wondering if all the stars were aligned (lol) and the great doctors at Mayo came through and coordinated with your doctor. Hoping you received your results and can learn something helpful from them. take care.

[Guest tearose]

thanks all!

Geneva, I don't think Jupiter aligns with Mars till Friday...I am being hopeful! If the stars are not aligned by Monday...I'll be telephoning OZ administration on Tuesday and finally and very cordially requesting some assistance in getting answers.

When I think back to my years from 1991- now in dealing with Mayo...in all fairness, these docs are truly overworked and in the final push, they DO come through. It is just that sometimes you have to be a very very squeaky, 18 wheeler!

ginger,

I am happy for you that you'll be going there for help. When is your first appointment? I think very highly of Dr. Fealey! (understatment) When you go into his office, look on his desk for a ivory statue...you will see a small statue of an angel asleep with her head on her wrist sitting on a column...it was my gift to him...it is a "cherub with dysautonomia"

thank you for caring about my troubles...it means more than you know!

warmly, tearose

[Miriam Poorman-Knox]

Well, you all know how we make an appointment to see the specialist for the "follow up" and then finally the date is here...I decided to wait one more year to go back to Mayo but I am going to see my urogynecologist in NYC, on Monday, Jan 10.

I went through a complete pelvic reconstruction (fall 2002)  about six months before I had further  and in depth information on my dysautonomia.  I didn't think then, before surgery, to ask if the pelvic muscle atrophy was directly related to dysautonomia.  So now, I am going to see if my pelvic reconstruction held up or if things have collapsed again.  I have been having some trouble again...I'm hoping to discuss using internal weights to regain muscle there.

Please help me focus on the right questions to ask so I get the answers that help.

I do understand that we are prone to muscle wasting.  Do we have any research to back that up? 

Maybe briar you have a link?  Anyone know who documented this?  Forgive me if it is in an obvious place...just point me in the right direction!

For my appointment, I think I want to ask:  "Does having dysautonomia pre-dispose me to pelvic muscle prolapse?"  "Does the surgery just help things in the short run?"  "Can using the weights help".

What else?  Many thanks,  tearose

<{POST_SNAPBACK}>

[ginger]

Any news yet, Tearose?

Hope you're ok waiting. I get so tired of waiting. "Hurry up and wait" we say a lot around my house.

Let us know how your urodynamic study turns out. During my study last year, they kept on filling my bladder and finally, the nurse said, "honey, we're at 720cc and I'm gonna stop. Don't want that bladder to explode." I still couldn't feel it. Most bladders are 100-400cc capacity.

I"m so glad you are confident in Dr. Fealy. That makes me feel sooo much better. I'll look for the cherub and know you are there! Like everyone here has experienced in one way or another, it's tiring and frustrating to start over with new docs. And it's difficult to know what kind you'll get.

Thanks for the continued info tearose!

ginger

[Guest tearose]

Yes, I'm waiting for the urogyn to get out of surgery and call Mayo. I'm feeling confident he will call, they will speak and I will hear...

I called Dr. Fealey's medical secretary and she said as soon as he hears from my urogyn. he'll be on the phone to me regarding my issues. (pelvic & muscle and sleep study)

I'm not asking, but do feel free to ask him if he called the person who gave him the cherub!!! He'll probably think you have special clairvoyant powers!!!

As I rethink what the urogyn said right after the urodynamics test, the bladder "valve" tightens and the bladder stretches to contain the contents. The bowels slow way down constrict. Again, to keep you from having to go when the body is in the "fight and flight"/ hyperadrenergic mode. My "preliminary" finding was the leaking was coming from me not knowing/feeling I still had 300cc after I voided and thought my bladder was empty.

The anatomical stuff was only mildly responsible for any of my problems

I still want to hear the final report though...sometimes when they examine the tests later, you hear different interpretations...so yes, I'm waiting.

Thanks again for checking up on me! tearose