Too many opinions!

[toomuchbrain]

I'm so confused what to do now, I hope someone can help me work it out.
I've seen two NS now, the first who said to have surgery (with whom I now have it scheduled, in January), the second who said to wait and see if things got worse. If they did, to revisit the surgery option.

After this, I saw a neurologist about crampings in my leg, and asked him about my headaches/neckpain/shoulderpain/backpain while I was there. He took a look at my MRI and said he talked with the radiologist about me. They agreed my 'mild' case was (I believe I'm at 6mm, I'm not positive. I do remember it was 1mm more than what I had seen as the 'classic') not severe enough to warrant my symptoms, and the issue was musculoskeletal and not neurological. He wants me to see an orthopaedic surgeon about my shoulder, and gave me a new medicine to try to prevent headaches with. He also recommended I see a pain management specialist to get shots in my neck.

Over the weekend, my shoulder has gotten worse, pain-wise, and my other shoulder has begun to hurt. It's also aching in between my shoulderblades. I'm afraid things are getting worse?

My question now is, who do I believe? Who's right? I know no one can tell me what to do, or make this decision for me, and I'm not looking for anyone to. I'm just looking for, guidance, I guess, as to how to make this decision. It is a HUGE decision, after all.
I have talked this over with my husband who believes I should have the surgery. But, he's also very, very confident things will go perfect, so I'm afraid that's swaying his decision.

[linnielou232]

Thanks so much.  I blieve the energy we receive and we put out have a lot to do with the healing process.  I'll look this up.  Thank's again.  Oh the ten's unit is about the same, but just focus on the square of area where the pain is at.  I'm trying this now and seem's to elp with swelling.  Have a good day.

[roktta06]

I use a Magnetic kit that a Doctor in Guadalajara Mexico in a joint veture with other Dr. all over the world produced this kit that consists of a leather jacket with tiny magnets underneath a lining, a collar and a head band also with tiny magnets. I sounds from out of space but I truly believe in the science of magnetism and that we are a energy. And when there is a blockage of energy in our system there are symptoms, lots. This Dr. is not a medical Dr. he is a genius Mathematician, scientist. He has worked for years in Japan studying how energy flows throughout the earth and destroys buildings. So he worked in the construction of buildings that resists earthquakes movements. It is a really looong story but I truly believe in his studies and books. and the kit has helped my with my pain tremendously!!!!!  

if you like to read about his studies in a short and concise  version he has a web page ….

http://translate.google.com/translate?hl=en&sl=es&u=http://www.bioenergia.com.mx/bioenergia/int2articulos.html&ei=kG3WTrqcMtOnsQLq4tWADw

copy paste…

Good Luck!

[linnielou232]

Well at least you tried.  Sorry it didn't help.  I was disappointed a mth ago when I had steroid shot's in the Head.  No relief, but a 16 hundred bill to insurance co. but if it would of worked for you it would of been worth it for some relief.   You mention bio and energy for relief.  Is this the same as the TENS unit.  I have found this has helped me at least 50 percent also.  I am happy  I finally got some relief.  I wish you the best on your decision on surgery.  I know how hard this decision can be.  

[toomuchbrain]

roktta, thanks for the description of the stretches you do. I've been doing the same types of things, with no relief. When i do get relief, it only lasts maybe 30 minutes. i'm going to keep trying, i know either way it's good to keep moving, especially the yoga. but it not helping just pushes me that much closer to thinking surgery might be my best option.
i also did get a shot in my shoulder for the pain, and got immediate relief from the painkiller. but, about six hours later, i was in even more pain. There goes that shot, as well. :(

[toomuchbrain]

linnielou, thanks so much for your input! that's something i never would have thought about, so i really appreciate your pointing that out. :)

[roktta06]

I personally find just simple neck stretches, left to right and vice versa…yoga type… my physical therapist showed me lots of stretch  exercises for my tense muscles and I do them all the time ….just light muscle stretches.. I use the stationary bike for my legs…pelvic tilts are great for my back... I also had an injection on my shoulder muscle and I found it very helpful… and sorry to keep repeating this but biomagnetic and bioenergy therapy is awseome! I am really into that and it has improved my symptoms almost 50%!!!

Good Luck!

[linnielou232]

Well you say that you haven't had surgery.  I had the injection in the neck area and I suffered more due to I didn't know that I had Chairi.  That's why I suggest you make sure you dr that gives the injections know you have chairi.  You have to relized your brain cerebellum is hangin back there.  I do suggest the injection in the muscle between shoulder blades.  That seemed to help with some relief.  Sad thing is you never know if they are going to work and they cost a lot.  Make sure they are covered under your insurance.  Any relief is better that none.  Maybe they will be good for you.  Just as I said please make sure they know what they are doing.  Best of luck.

[toomuchbrain]

Thank you all for your comments, suggestions, and support! You have all been such a great help, and it's so nice to have someone out there who 'gets it'.
This definitely is a tough decision, and certainly one of the biggest, if not the biggest, of my life. It makes a big difference having so much information and support from here.

linnielou232, may I ask why you say injections in the neck may be a bad idea? I'm not sure how much the doctor I would see for it knows about chiari, I have not seen him yet. I'm still debating whether I want to go that route. Would you mind sharing what makes you say that?

roktta06, thanks for sharing your non-surgery success. I have tried stretches, using stretches my rheumatologist gave me as well as some a PT gave me, both before we knew I had chiari. I've also given yoga a try, and nothing seems to ease the pain. Do you find particular stretches help? I debated trying PT again, but since it's been so unhelpful in the past, I'm not sure I want to go that route again.

Thanks again to everyone for your ongoing awesomeness! You all rock :)

[roktta06]

I had the same issue you have right now. My NS told me I had to have the Chiari  op so that my syrinxs would decompress and  help my symptoms. I had  already  had surgery for my syringomyelia. But my NS was then a retired surgeon so I had to look for a new NS. I was referred to a great NS in AZ. When I went to see him he asked me why I wanted to have  the surgery if I felt  “GOOD”. I told him I wanted to get rid of my shoulder /neck/head and back pain. His answer was that with or without the surgery I would still have SNHB pain!
So he recommended NOT to have the surgery since it implied risks. I went back to my other NS  and told him I had decided not to have the surgery. So he sent my to Physical therapy to strengthen my muscles, to better my balance and to learn how to stretch my muscles when I ached too much.

I am so happy I did not have the surgery because I have managed very well with therapy and pain management. I follow a regimen with magnetic therapy and it has helped tremendously.
My  shoulder pain disappeared completely when I went on antidepressants. I  was surprised at how many symptoms disappeared  with the antidepressants and ant-anxiety meds. I check my syrinx every year and for 24 yrs. it has not changed in size. i do have a shunt and apparently it is working ...

I hope I did not confused you more but if your are undecided go to the third/ fourth NS before you make your decision.

Good Luck!  

[linnielou232]

I have been where you are at right now and there are a lot to consider.  One thing that stuck out to me in your question's was injection's in the neck.  I don't recommend this unless it is done by some one who know a lot about Chairi.  It could make it worse than better.  For me and my husband I acturally went to 3 doctor's and even went to the dr. that ended up doing my surgery 3 times before deciding.  As my NS said "Has it changed your life, and can you live like you are right now?".  I couldn't because the pressure in my head was so bad.  I couldn't get through the day's any more.  Having surgery isn't a fix, once having Chairi we alway's have it.  Something that is life altering.  So do take your time in your decision, but only you and your body know's what is best for you.  Finding the right NS is a must.  So taking your time and doing your research help's.  I had one dr say to me " I'll do the surgery.  I've done a few before and gave me a 50/50 chance.  I never went back to him again.  When you find the right one for you.  I think you can tell.  I wish you the best in your decision, because those of us who has had surgery know it isn't a easy decision to make.  Keep us updated on your decision.  One more thing.  I know this forum helped me tremendously with my decision.  Just knowing there is hope and people here to help you understand and to know you are not alone in this.  We are here for you.  Best of luck.

[cash242]

So my herniation was exactly the same as yours and I did have surgery but please go to a specialist I didn't and wish I had. My surgery went well and helped so much but I then went to dr oro in denver and he found a ruptured disc..and I still have shoulder and ha pain he said he would have done fusion first. The decompression stopped the awful pressure ha and I can think again but it is hard to decipher what is causing symptoms. I wish you luck and get a specialist it is worth it.

[selmaS]

  Hi...I was told to see an orthopedist....but that was for a disk issue....and one Dr said that was more my problem then the chiari...but, it was not as bad until post op it shifted.....

  I really feel u should be seen by a true chiari specialist....most of those that have  issues post op did not go with a chiari specialist, just a NS they felt was nice or knew about chiari...but in many cases they did not know enuff!\

A chiari specialist will not offer to do surgery unless the benefits out weight the risks...and if there is another issues they will let u know.

    "selma"

[toomuchbrain]

amelia,
thanks for the support! You are right, we do need to listen to our bodies more. I think I should spend some time listening, and try to figure out what mine is trying to tell me. :)

selma,
after I left the appointment with the neurologist, I realized what he was saying: he was basing his opinion on the size of the malformation, whereas the neurosurgeon was basing it on my symptoms and pain. That's when I started to question, maybe I should listen to just the NS, since his reasoning makes more sense?
I am definitely going to listen to my body!

I'm curious, has anyone else seen/been recommended to an orthopaedic surgeon? Or been told the pains are musculoskeletal, not neurological (or stemming from Chiari)?  Is there really a way to tell?

[selmaS]

  Hi, I have to ask if u saw a true chiari specialist...they do not look at the size of the herniation, but at if there is an obstruction, and the symptoms and how it affects ur overall health.

U can send ur MRI';s to Chiari NS's for an opinion....some may charge a nominal fee while others do it free of charge with hopes u will  become a patient if it is warranted.

Keep in mind even with Chiari specialists u can get diff opinions, but I feel  they r more experienced and informed on what to look for then the typical NS that does an occasional chiari surgery.

  Listen to ur body too....u know if the symptoms u have r something u can deal with....and if symptoms post op is what u can deal with as well....some do not respond to surgery  as well as we would like....and as a result have set backs or develop new issues.

  It is a lot to consider, but with the right Dr it helps u figure this out for urself.

   "selma"

[amelia133]

My NS was very keen for me to have surgery. I didn't let his opinion sway my decision and spent time thinking about what was best for me. I ended up having surgery and things are getting better - not everyone needs surgery and I think the greatest lesson I have learnt is to listen to my body as it often tells me what to do and what not to!

Don't let anyone force you or sway you to do anything - it's your body, you decide.

Hope you are able to digest everything and spend time thinking and making your decision soon, don't even let your husband decide for you! Take care! :)