Does anyone else have problems with....

[luvmy2grls]

Okay so I've got a couple of things going on here and I'm not sure they are related to chiari or not... long story short i was decompressed 10-17-11 and then had to repair a dural leak with meningitis 11-07-11.....

Okay so I still have MOST of my symptoms from prior to surgery and new ones as well..

So the doc says I'm fat..  LOL  well not just like that, but she says "Jen, ur up 5lbs from last time, you really need to watch your weight..  Why do you try and get some exercise and try to eat a little healthier"  So, healthy, meh not for me....  I would never eat hahahaha  I like carbs for whatever reason, I crave them.....  Anyways, I decided to take her advice and think of some low impact exercising I could do (besides just walking) and come up with Bicycling...  And well that is turning out to be a huge FAIL...  I can't even ride a couple of blocks on flat pavement on the easiest setting for gears and I have to stop and give my legs a rest..  I mention this to family and friends and they just say "your out of shape, its going ot take some time"  WHAT?!?!  My husband who has not ridden a bike in well the whole time we have been together (7yrs) just decided one day to ride his bike to work, almost 5 miles one way...  So he is just as out of shape as I am so why doesn't this affect him then???  My arms are the same way, I can''t even put my hair in a NICE ponytail and my arms feel heavy and like jello...  Thats what happened to my legs.  When I was in the Army, we would run 10miles march for that or even more and I didn't have problems until that "one day" and since I have had problems with "Extreme Muscle Fatigue"
SO is this a problem for anyone else???

Breathing?  I just feel like I can't get a deep enough breath sometimes(several times a day) and I will yawn alot..  Also, for whatever reason I catch myself holding my breath..  Anyone have problems with that?  or wheezing/coughing  I quit smoking 3.5yrs ago and I thought I would feel better but I don't, I feel worse... I get winded just walking from the car to the house...

So if you have some of the same issues please share your experiences..  Frankly I am sick of being told I'm fat and lazy...  I just don't have enough fight to try and explain to them that it's not that easy for my to just go and exercise and that anything that raises my heart rate makes my head hurt worse...  They just look at me like "this fat girl is making excuses"  I mean really if it were that easy to be fit and trim, we all would be...

Thanks
Jen

[Rylanesmom]

Have you been checked for EDS?  I don't smoke but I have empheseyma from EDS.

[selmaS]

  So glad to hear u r seeing improvements....fantastic : )

[JJWalk]

Muscle weakness seems to be a pretty common symptom. My Surgeon looked at my MRI and wrote down that I probably had muscle weakness without even looking at me. He was right!  I have noticed an improvement since my surgery a month ago.  

[luvmy2grls]

thank you selma

[selmaS]

  I know how u feel we r all made to jump thru hoops....it is not right.

Hopefully  they will be able to review ur MRI's for u and advise u b4 u travel there....

Do keep us posted
and I hope u feel better soon

[luvmy2grls]

I will def see if he will do that before I make an appt..  It's gonna be a HUGE step for me to go to another doc..  Stick a fork in me, I'm done with these doctors BUT without them I cannot get any help...

[selmaS]

  I am sure he can appreciate the distance u have to travel and would not set an appointment if he didn't feel he could help...

Most NS's will accept MRI CDs b4 u go and they review them....and they basically look to see if there is something going on they can help with....

Call and see if u can do that. Get his opinion b4 u go.

[luvmy2grls]

Thank you Selma, I always appreciate your replies!

I have had a follow up MRI but was told it looks fine..  I am seeing a NL and he is trying all sorts of different stuff..  I have tried trigger point injections, migraine injectables, migraine nasal sprays, migraine pills, gabepentin, depacoat, indomethicin, all of which have NOT helped in anyway....  I don't know what the next step is whit him..  I know he wants to try Botox but my insurance doesn't see that as a treatment for headaches...  

SO, I am just getting closer to seeing if I can make an appt with Dr Henderson..  I'm terrified that he is gonna say the same thing as everyone else (i don't see anything wrong)  and I don't want to spend the money on the initial appt and the travel just to be told the same thing these ding dongs here keep saying...

[selmaS]

  Hi Jen...it is not just u being out of shape...they have no idea what they r saying....my weight has dropped and then gone back up....drats!

But I know what u mean...as far as riding a bike, u may be better with a recumbent bike...it is better for ur back and neck...plus u do not lean on ur arms and  that also affects ur shoulders and neck.

I actually like walking in a pool...not swimming as it still affects my neck...u have the boyency  to help keep u up and the resistance of the water to walk against.

  AND we do have exercises for those of us with limitations and need a slow build up to exercising.....it is our Wednesday thread.....do check it out and start with the exercises at the top and slowly add new ones after u can  do the one for 2 weeks  increasing it...then add the next one, if u find one u can not do, skip it and move to the next.

Have u had a MRI to see if u have scar tissue or PTC?

  Either is not uncommon post op...especially if u r having symptoms like u r....or, did they rule out a syrinx in all areas of ur spine pre op? and Ehlers-Danlos?

  Related conditions to chiari can affect us...as well as our weight...many of us, including me have Hashimoto's thyroiditis, which is an auto immune thyroid condition which can switch btwn being hyper and hypo....

  So do ask about testing for these issues to see if u can get to feeling better : )