Physical Therapy for a Dx of Chiari?

[gmaldonado]

Has anyone ever been referred to physical therapy for your chiari symptoms? If so, why does it consist of?

[jzeig]

I was just recently diagnosed with Chiari but have been struggling with chronic headaches for the past 3 year.  I have had two rounds of botox injections for the headaches and it has helped to contain the headaches to the back of my head and neck.  It hasn't taken the pain away but at least the pain does not spread through my entire face and jaw as much as it use to.  Now that I am officially diagnosed I am interested to see where they go from here.  It has been quite a journey jumping through hoops just to get doctors to listen to my crazy list of symptoms and concerns.  

[*Stormy*]

That's exactly it...we do have to take control of the things we can. That is what I have done and it really makes you feel better when you know there are SOME things you can change. I always believed in keeping active even when I could barely walk, I would still make myself!! A strong will goes a long way and it really helpful to fight this and to help you recover...

Take care!
Carolyn

[gmaldonado]

Thanks Carolyn. I'm just trying to park a little further and walk as far as I can. I'm changing my diet so that I can get healthier one step at a time..i know that Chiari is one thing I can't control but everything else I can. Thanks again for your advice. I'll try not to over exert myself.

-Gina

[*Stormy*]

Big Jim- Thanks..I would be interested to read it. I have some disc issues too that I feel are being ignore and I am pretty sure that could be causing some issues now. It's just trying to get someone to look at it!!

gmaldonado- I would really be careful on how much you exert yourself.. I overexert myself too on occasion...but I feel more confident about it now b/c I had the surgery and don't feel like it can make me worse. But b4 surgery...overexerting definitely made things worse. I would really lay back on those things b/c you don't want your symptoms progressing to another level (like mine did). Pushing a stroller up a hill is really hard on your neck and shoulders...I used to run with my son in a stroller and I know that is really what affected my neck. Take care of yourself!
Carolyn

[gmaldonado]

I have come to the conclusion that the palpitations come on stronger to where I need to sit down when I overexert myself. Learned my lesson. It only happens when I've been lifting heavy things or moving too fast with out a break. I went walking this past Friday and I did fine but I did have a headache. On Sat we went to the lake and I was strolling my 18lb baby boy up a rocky hill ...........OMG I did allright but my head was pounding. The therapy has helped a bit with the tension in my back but the massage thing they do hurts! It is painful but I put up with it because I do feel better afterwards. They put a heating pad on me today and that did a whole lot.I don't feel normal anymore. It is so frustrating! I wish these doctors would get on it and put all these things we post together. I feel sudden pains on my chest like under and in my breasts then my joints ache so much I cant touch them. There are weeks where I feel so good and then I have a really bad day where I feel like I'm losing my life. I had a client I speak to frequently ask me why wasnt i coming in and i mentioned therapy..so he asked for what and i shared a bit about chiari and he didnt know what to say other than good luck. I ran to the RR to sob like a baby because I hate this feeling as we all do.  I know that I have to take it easy. I appreciate you all's support very much as well as your advice.

[BigJim_in_NY]

Hey Carolyn,

I've done some research into the effects of Cervical Disc Prolapse and over lapping Chiari symptoms. I've considered posting my findings but I haven't because I am shy like that and it is going on nearly three full pages; a bit large for a message board.  Anyway..

To be brief a CDP protruding on to your spinal cord can explain *some* Chiari symptoms. A protrusion of that significance will likely be seen on an MRI but there is also a high occurence of CDP and DDD in the general population. Having Chiari may cause some to overlook CDP especially if it doesn't present with typical symptoms. I can tell you mine does not.

Let me see if I can finish a draft and get it to you.

[*Stormy*]

When it comes to exercising....please listen to your body!! So very important!! If you are feeling that it is dragging you down and causing more pain..STOP!! I wish I had listened, I made things much worse for myself.

I had that feeling that something else was wrong with me too...I have been spending these 8 months after surgery looking for the answer but it keeps coming back to the same thing..Chiari. It can throw your whole body out of wack..it affects muscles, ligaments which in turn can affect bone structure and how you move. That is exactly where I am right now. So you don't want to do any damage to your body. To me walking for 30 min 3x's a week would be pure torture. The BEST thing you can do is to do some exercises in a pool where there is no stress on your body.

I get the heart palpitation thing when I overexert and I think that is what your body is telling you....

Carolyn

[chiarigirl11]

hi,
    I went to PT for my chiari symptoms...i only went twice cuz it hurt too much and it was pointlesss..i dont know, it didnt work for me but i dont know if it works for other people,






~~elle~~

[gmaldonado]

thank you for your input. I went to my actual therapy this past tues. she had me "warm up" only upper body on a bike type thing w/no pressure on it. then we worked on stretching my upper body and then the massage...which was very very painful but it felt good afterwards. She insists in having me do exercise 3 x a wk for 30mins..I bearly have time to take a shower before i got to go to bed...and this past weekend i was loading things into my car cause my friend moved out and i had to sit down because the palpitation got really strong and i felt like iw as going to faint. I'm scared of exercising period. I think there are other things going on in my body that i need a diagnosis for...either that or Chiari is throwing my whole body out of whack. I dont believe its a coinsidence that many of us experience the same symptoms and doctors dont make that connection.

[linnielou232]

I went to a deep tissue massage therapist for at least 2 year's before my surgery and she was my savior.  After the Chairi got worse I stopped it because of fear of hurting my chairi more.  I am glad that the massage is working.  I went to my PT appt 1st time and was sent to Dr right away because they think it is a CSF leak.  I have MRI on tues, Dr. Wed.  he is sure it is a CSF but has to find out where.  So my journey will start all over again.  I was looking forward to PT because I know it will help the healing.  Also when she was looking at my incision.  The cold hands massaging it felt good. LOL.  ready to get back to recovery

[survivor08]

PT was the first place I was sent YEARS ago when my back/spine pain started becoming chronic.

Now let me give you a bit of background as to what I was doing when I was sent to a PT:  I was teaching aerobic classes, lifting weights and personal training clients.  Guess what the PT wanted to do with me.........."strength my back".  Well needless to say after my first session, PT didnt know what to do beings I was ALREADY strong as a freaking ox....... so he did massage therapy....which I LOVED, but it didn't help :(

My opinion?  It is a first alternative, standard therapy for just about EVERYTHING.

[Sweetpea32]

I have been going to PT for the last 5 months post op surgery 9/09 and 10/09 surgeries. This helps relieve the muscle tension around my neck muscles and the section above my bra strap. They do a lot of massage therapy. Never really going to much near my neck or anywhere around my incision. I was going 2 times a week. now slowed down to every other week to see how it goes. If it wasnt for PT after surgery I would be a mess. They do a lot of cranial manipulation which relieves so much tension in my head. They have me doing some strength training. I do in moderation. I work on daily stretches that help get me through the work day. I feel this is something I will have to rely on for the rest of my life. But its a blessing to be able to have PT and they understand all my aches and pains and always willing and able to relieve my pain when I see them. They have given me so many ideas on shoes to wear, bras to wear (because I cannot stand the straps on my shoulders), they have helped with directions for NL around the area that I am looking into now for follow up care. I just pray my insurance keeps covering my PT for the year. I am coming up on my year anniversary of my first surgery, So I also pray PT will not be needed as much as now. Hope everyone is able to find some kind of relief. PT/massage therapy was a blessing for me!

[dsan0696]

Well I had my 1st 2 days IN A ROW without severe pain....NO muscle relaxers, just ibuprofen.   I swear it is the stimulation & massage & 3 days a week (plus I do stretches & working muscles...but those are what are relaxing them).    I am not getting my hopes up of course, because I never am that lucky....BUT I also was SO excited because last night was the 1st time in 5 weeks that I was able to do something with my family and went to the store to pick out a new fan.....my husband & boys were also VERY excited and HAPPY.   Of course I told them too not to get hopes up too much because seems like nothing good lasts longer than 4 days for me :-(      
So, today at P.T. I was even able to increase my few strength exercises to 2 reps each...wow!

gmaldonado:   I was persistant when I started this P.T. and asked them if they had any clue what CM1 was and if not to please look into it some.   The P.T. new some, but massage therapist didn't, so they DID look into it together and then tended to understand my situation more.   You could even print stuff out for them if needed?????    I think it really helped.   They seemed to understand why I neither can handle exercise right now....the pain was too bad.   Your P.T. wants 30 minutes & then "me" time.....I couldn't even imagine 10 minutes of cardio or anything with impact type exercise (maybe until a week after starting...amazed how I feel, but will not push it either!)        As for the "make room"   I basically get it now because of the muscles tension.  I had never really realized how many muscles were in the skull before I started my P.T. this time.   She made sense by telling me that all those muscles tensed up just PULL on my skull even more and since the bigger ones are in the shoulder area, it all pulls down to that area.   SO, in turn....our heads are being pulled down even further into our already malformed base of skull & neck area........make sense?  

I will keep you guys updated on my situation.      ALSO, my I have found wearing only my really good supportive cushy tennis shows helps a LOT (verses my Keens and others sandals that are supposed to be great support, etc.....not enough though)
Take care,
Denise

[selmaS]

Well, I had whiplash yrs ago, and yes, relaxing those muscles can release some pain...make more room?...not sure, but ok, I give her that it may give some room to not have the muscles all bunched  up....but do be careful as to what is done at ur neck area as far as PT goes.

I really do not think if u didn't have chiari u can not understand just how bad it makes u feel.

Good luck and be careful : )
"selma"

[gmaldonado]

thats funny...I asked myself the same question. She put it this way.."You're muscles are very tight in your pain area , and because of this it puts more tension in your head. By working on conditioning and stretching we can ease the muscles therefore making more room in your head"  I honestly think she thinks I'm over exaggerating.

[selmaS]

How is she going to help make room? very curious......

"selma"

[gmaldonado]

Sorry I haven't kept up with the discussion. I went to my PT evaluation yesterday and she mentioned the thing about all the muscles in you back,neck and head and that perhaps with the therapy it will help re-strengthen and relax the muscles. Eventually it will ease the pain. She left me for homework..to find a time during my evening to exercise for 30 mins and to find a "me time" to destress myself...In my head I was yelling! saying if..I could exercise w/o pain i would do it everyday! and...IF i had "me time" i wouldnt be AS stressed. Now, the stimulation thing I've never heard of it and she didn't mention it at all. She made me feel that I feel the way I do because I'm too stressed and I don't exercise and that's why my pain is where its at. She said theres not much room up in my head but she's gona help make some....I'm afraid to feel a short-lived relief.

[*Stormy*]

Not a problem...I'm glad I can help!

We can share our thoughts on Botox once we get there...I'm still a little nervous about it so we'll see!

Carolyn

[dsan0696]

I have now had the P.T. & massage 3 times.  The actual stimulation they give me is called Interferential and goes deeper into the skin, and deeper penetration to the tissue fibers, with increase bloodflow circulation, but with more comfort too than a regular TENS unit.  Best way to get info is to Google them.   I am thinking of purchasing one to have at home when my therapy is done.   The rehab center is checking to see if my insurance will cover it.....even if not, I think I will spend some money on one...I love it!    Who knows though, for me it could be something that wears off with time too like Carolyn....or my Chiari, etc. may get worse. ugh!

As for the massge therapy, my physical therapist & massage therapist don't want to go too much into the base of my skull starting out.   She is taking it easy, but said a LOT of my problem is the muscles are so tense in my neck and skull, so she is working them and it seems to help a lot (at least the day of).   Hopefully with time and going 3 times a week for all of it, things will get better and stay that way. ????   Many of us forget how many muscles are actually in the skull, especially the back of the skull going into the neck.   You flare the back, neck and usually goes into the head too.

Caroly....I haven't searched it yet on here, but I have Botox on my list of questions to ask if I get to the Chiari Center in Wisconsin, or to my other neurosurgeons.  I have heard of it, but not looked into it enough yet.  (I'm new at researching the Chiari stuff......since I had other issues to deal with)      I think I will search, if nothing....start a topic :-)     ps...thanks for the message, that will hopefully help out my fellow Facebook 'friend' in Canada!! :-)  
Denise

[*Stormy*]

dsan0696- That is the way I felt at first, after the stimulation I felt way better for almost a day or two sometimes. Unfortunately, for me, that stopped having any effect on the spasms and pain after a few weeks. I even tried a TENS machine, which helped a little..but I would have had to have about 10 strapped to me at once to make a difference! I have not tired massage therapy at all..I guess I was a little nervous that they would make it worse. I have permanent muscles spasms in my neck and shoulders and if even I press on them, it sends this shooting pain to my head and I have an instant headache.

Guidinglight- As I said, I haven't tried massage therapy but I do get my husband to massage my temples, scalp, back of neck (lightly) and it does seems to help me. However, in my case, I feel a huge part of my headaches are muscular related.

It has been brought up to me by a specialist to consider getting botox injections for the spasms? Has anyone had experience with this?

Carolyn

[Guidinglight]

did you feel the massage helps lessen the headaches.???

[dsan0696]

I actually JUST started PT for Chiari symptoms last week. (no surgery)  My main symptom is severe head & neck pain and pressure.  My neck muscles are weak....I actually had a brain surgery 8 months ago to remove a benign tumor.   The Chiari pain flared up shortly after that.   I have so much tension in my neck and the muscles in the base of my skull.    I am doing P.T. that includes the elctronic stimulation with ultrasound between my back of my neck to shoulder blades....then some mild (to start) exercises for trying to restrengthen my neck muscles....then 15 minutes of massage therapy to the same area.   I am to go 3 times a week.   Yesterday was my 2nd time and I felt I was in heaven.   I think it released some of those 'pain endorphines' for a few hours.   I needed no pain medicine or muscle relaxer or anything for hours.   Today, of course the pain is all back, but I go again tomorrow.   The P.T. is aware of Chiari and said it will take time for the flared muscles to go down and restrengthen.

[gmaldonado]

Thanks Selma, I'll make sure to ask.

[selmaS]

Hi many times we r given a rx for PT after surgery...sometimes for b4 surgery....and yes it is to help strengthen muscles that have gotten weak due to us babying ourselves in diff positions or activities to help avoid paying for it later....

Be advised, ask if the PT tech u r assigned knows what chiari is...and if they do, but u still r given exercises that is placing strain on ur neck...to let them know....it is important to continue to listen to ur body first teh PT tech 2nd.

"selma"