I had my first round of cervical traction today at 2:00pm. Immediately afterwards I was dizzy and I still am 9+ hours later. I haven't been dizzy since before my first decompression a year ago. I'm a bit concerned. Does anyone else have any experience with this?
Did you have a laminectomy with your decompression surgery? I thought once we had this surgery that traction was a big no-no because you can literally pull your head off your body wnd cause cervical instability.
Sorry that you feel that way, that is miserable…I think I would call the doctor and discuss your symptoms after the treatment as I can’t imagine this is normal.
Why are you having cervical traction done? I thought it wasn't a good idea for people with chiari. Does that change after you have had decompression surgery?
I tried cervical traction before I had surgery and it made me dizzy. I kept using it for several more days hoping it would get better, but it got so bad that I was scared to drive. It felt good on my neck and head to use it, but I finally stopped using it and slowly the dizziness went away.
My neurosurgeon told me no cervical traction, manipulations, deep tissue massage, etc. After surgery. I also have a chiropractor family member who says no way to doing any treatments on me.
Maybe you should check with your surgeon regarding his/her approval and how to handle the side effects.
I have felt the same way. For some reason they feel that we are all fixed after the first surgery. This issue will live with me for the remainder of my life.!!!
Please all of you and me,
We should never allow cervical traction to be done. Your neck should be looked after like the finest porcelain, no heavy weight picked up, no traction, no bending backwards, not anything that causes discomfort.
Please make sure you study - google "things arnold chiari patients should not do" . Make sure to update yourself and pamper yourself to get the best out of life.
My son is studying Physical Therapy and when they were studying cervical traction, Chiari was mentioned as a contraindication. Side note - when my son said his mom had that, the professor said that was the first person she'd ever heard on in real life who suffered from Chiari. No wonder we have so many problems getting help. Anyway, I'd call the doctor and I hope you feel better soon.
Hi guys-
Thanks for the concern. My NS actually asked me to have cervical traction last time I saw him. He wanted to know if it would help my neck/head pain.
I left a message for him just now. We'll see what he thinks of the dizziness.
Find out how many other cases your NS has treated.
Traction is a dangerous choice in our situation, I would not like to see you damaged permanently through this.
Many doctors never see a single ACM case in their careers so it is difficult to make the correct decisions in treatment. Please do not consent to more traction until you have seen an experienced ACM NS and have heard another opinion.
I hope you feel better soon
This is what I mean when I say the docs are somewhat clueless----I have been living with this since I was 4---I am 60 now and still suffering. I researched the decompression surgery--NOT having it. No long term relief for the patients I have seen in general, and more surgeries! My ortho. doc put me in cervical traction---I TOLD him I have Chiari. It is as if they don't hear me. Hang me upside down for traction too. My Opthalmologist is clueless--I have had 3 cornea transplants so far from the pressure--sometimes goes up to 40.. The last ophthalmologist (2nd one and also clueless about Chiari) wanted to remove my eye! THAT was 3 years ago. The next opthal. said the eye removal was a stupid idea! Good thing I didn't listen to the second doc.! I have lived with the eye problem since>>>> Actually I was hit on my basal skull when I was 12, coma, almost died---damaged cornea and gave me trauma induced glaucoma from the hit. Didn't diagnose Chiari then. Most docs I have talked to either know nothing about CM or they day it is "common" and not to worry about it. It took a heart attack and life flight to get me to UNLV_Medical Center where I was diagnosed 3 years ago. I lived in L.A. most of my life where there was no help for me either. WHERE are the CHIARI specialists? I am getting worse and have pretty much given up. Will this kill me? I feel like it could.
Jo said:
My neurosurgeon told me no cervical traction, manipulations, deep tissue massage, etc. After surgery. I also have a chiropractor family member who says no way to doing any treatments on me.
Maybe you should check with your surgeon regarding his/her approval and how to handle the side effects.
As someone who worked as a Physical Therpaist Assistant for 17 yrs., I can tell you that cervical traction after Chiari decompression surgery is a big contraindication - which means No !!! I cannot believe that a PT would even do that, regardless of what the NS had checked off on the prescription. I would definitely no do it again, and would probably seek out a new PT, and question your NS why he would prescribe it. A C-1 laminectomy and traction do not mix!!!
I had my decompression in Oct. 2013 and have had issues with dizziness/vertigo since 2001. Six months out from surgery, my headache is better, but dizziness/vertigo is still there. It is debilitating, so I know exactly where you are coming from.
Good luck and feel better.
Donna, I’m sorry. Had you guys ruled out CCI? If you hav’nt I would wonder about it. It’s time for you to catch a break.
Vix, my son was born with Chiari Malformation and syrinx. He had his first decompression surgery April 27, 2011 and was just 14 months old. After a second decompression, infections, revisions, a shunt in/out he is doing wonderfully. He is a normal little boy for the most part. His Chiari and symptoms were so bad that they REALLY would have killed him and surgery was his only option/hope. I consulted with three different neurosurgeons all Chiari specialists, in his case peds. If you are that bad, I wouldn't discount surgery as it really may help you. Everything else is a band aid. I googled some Chiari specialists for you and here is what I have found. Good luck!
Dr. Ulrich Batzdorf
Neurosurgeon
Box 956901
Los Angeles 90095-6901
(ph) 310.825.5079
Dr. Jorge A. Lazareff
Assistant Professor, Neurological Surgery
HEAD, Pediatric Neurosurgery
UCLA Medical Center
Box 957039
10833 Le Conte Avenue
Los Angeles, CA 90095
(310) 206-6677
(310) 794-2147 fax
e-mail: Lazareff@Surgery.Medsch.UCLA.edu
Vix said:
This is what I mean when I say the docs are somewhat clueless----I have been living with this since I was 4---I am 60 now and still suffering. I researched the decompression surgery--NOT having it. No long term relief for the patients I have seen in general, and more surgeries! My ortho. doc put me in cervical traction---I TOLD him I have Chiari. It is as if they don't hear me. Hang me upside down for traction too. My Opthalmologist is clueless--I have had 3 cornea transplants so far from the pressure--sometimes goes up to 40.. The last ophthalmologist (2nd one and also clueless about Chiari) wanted to remove my eye! THAT was 3 years ago. The next opthal. said the eye removal was a stupid idea! Good thing I didn't listen to the second doc.! I have lived with the eye problem since>>>> Actually I was hit on my basal skull when I was 12, coma, almost died---damaged cornea and gave me trauma induced glaucoma from the hit. Didn't diagnose Chiari then. Most docs I have talked to either know nothing about CM or they day it is "common" and not to worry about it. It took a heart attack and life flight to get me to UNLV_Medical Center where I was diagnosed 3 years ago. I lived in L.A. most of my life where there was no help for me either. WHERE are the CHIARI specialists? I am getting worse and have pretty much given up. Will this kill me? I feel like it could.
Jo said:My neurosurgeon told me no cervical traction, manipulations, deep tissue massage, etc. After surgery. I also have a chiropractor family member who says no way to doing any treatments on me.
Maybe you should check with your surgeon regarding his/her approval and how to handle the side effects.
Donna, this sounds like a terrible idea and you should probably consider getting a second opinion from another Chiari Specialist Neurosurgeon. I would not have it done again before speaking with a different neurosurgeon. Listen to you body and the fact that you are questioning this!
Vix, there is also the Borrows group in Phoenix- Dr Theodore has a great reputation. It is true that some people have continued symptoms post op or have returning symptoms, but it is also true that some people experience long term/seemingly permanent relief. If surgery is not sounding right for you, that’s ok many people feel the same way, but treatment is limited to pain control and managing intracranial hypertension. Also I read in one of your other posts that you have tachycardia…have you researched dysautonomia? I have dysautonomia with innapropriate tachycardia- I take a beta blocker (propranolol) and helps GREATLY.
I know you are not newly diagnosed but here is more info to consider
if you want to consider surgery as an option please take the time to find a true Chiari specialist.
There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.
Vitamin d deficiency
Magnesium deficiency
Ehlers Danlos syndrome- can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done, but continue to have the same symptoms or worsening symptoms- a second surgery will be required.
Dysautonomia
Tethered cord syndrome
I am glad you found us,
Jenn
Mine told me the same thing. I had my first one done in Oct 07 and then one in the begining of this year, they sent me to physical therapy an stopped it after a few weeks as they read up on it. It felt good day a little while been it could have killed me. Still healing and enjoying my life.
Jo said:
My neurosurgeon told me no cervical traction, manipulations, deep tissue massage, etc. After surgery. I also have a chiropractor family member who says no way to doing any treatments on me.
Maybe you should check with your surgeon regarding his/her approval and how to handle the side effects.
You will all be happy to know that I have cancelled my traction appointments.
I am still dizzy. This is day 3 now. It does not seem to be getting better or worse.
I do want to be tested for CCI.
I should hear back from my NS about my dizziness tomorrow.
I do want to point out that my NS is the most recommended Chiari NS on this site, so I hope that we can move on from this and keep figuring out what is going on.
No one should be touching your neck with Chiari. We are very fragile and need to be very cautious. You can get paralyzed you need to be careful.
Massage therapy is another option. I do massage therapy in my upper back, neck and shoulders area and this helps with pressure and pain and muscle weakness.
It is of utmost importance that if you are considering decompression,you have to find a specialist.I am 18 months out now and have experienced some good changes with the surgery.My journey lasted 27yrs.I was very fortunate to have a specialist near my home.The decompression was done without the recommendation from any other NS other than the specialist who did it.I still suffer from dysautonomia symptoms,shortness of breath,some headaches still occure but I feel it hAs given me my life back.Life is still not easy but as for me I am glad I found the right surgeon.I thank God everyday for the changes that has made life more barable.There’s no cure for this condition but I am about 65% better I think that’s worth what I went through with surgery.Hope you all find relief in some way,the specialist is in my opinion is the only way to go,one who does lots of decompressions each year and know lots in the chiari field.