Return of symptoms- seven months post-surgery

General
1

hi everyone- its been awhile since I have been on the site- I feel a bit lost lately, so I have come back to those who understand what I go through-

I had decompression surgery November 2, I don't regret having the surgery for it has taken away the debilitating, take several pain killers and be knocked out for most the day headache/neck pain. however, I am still feeling other symptoms that make normal day to day pretty hard. I had a pretty good melt down last night and decided that I need to come back on here and get some much needed support- so I thank you all ahead of time-

I still have headaches- some get pretty bad- ice pick headaches, my vision blurs at times (or focus issues) the muscles at the bottom of my skull into my neck/shoulders continue to get more stiff and cause more pain. My chiropractor won't touch anything above my shoulders nor will the PT lady. I have issues with vertigo which PT isn't helping,either. I do have some random shooting pains, sometimes in my face sometimes elsewhere. It seems the more stressed out I get with work etc. the worse the symptoms get- just seems to build up till I can't take it anymore and I end up having a minor/major breakdown-

I understand that the surgery was a treatment for Chiari and there isn't a cure however, I get very frustrated and disappointed that more of the symptoms are slowly but surely coming back in the last several months- I have what I call dead arm syndrome- tingling and a feeling of deadness in my arms- the right more than the left.

I went to my primary doctor yesterday and she is in the same boat of not knowing what to do- says I need to contact my surgeon at the mayo clinic again.( I am waiting for them to receive and review my last mri results. My surgeons nurse said that if there isn't anything significant on the mri they would have to refer me back to the migraine specialist. How is a migraine specialist going to help when I have Chiari not regular migraines or are they the same? ) My PCP is not sure just how to help me if PT isn't helping and doesn't know what my next step should be. I sit and wait... sit and wait.. meanwhile I get more and more frustrated as the pain and symptoms continue.

I have read on here in the past that some members have had to have decompression surgery several times, I pray for all of us having to deal with this and wonder if that's what I have to look forward to in the future. I hold on to hope that this doesn't rule the rest of my life. I thought I was doing alright till a few months ago when things started to come back strong.

Sorry for going on and on, I guess what I'm searching for is just support. Support from those who know and understand. I don't know if the symptoms I have are all related to Chiari or if the stress of things are bringing some on- just dangling in the wind with nothing but questions- no answers. I will admit to having no patience and look to find out answers on my own. Sometimes it helps sometimes I freak myself out. Any and all comments and support is welcome and very much needed. I thank you all..

going crazy in MN- Lisa

2

We appear to be in similar places in our recovery. I posted about the same issue a few days ago. Here is how my story compares to yours.

Decompression surgery October 18

Recurrence of symptoms slowly over last 9 months

headache (more like the skull is full than a traditional headache)

neck pain

blurry vision

vertigo

random shooting pains

leg weakness (almost falling)

back pain (excruciating)

LIke you, I have noticed that stress increases the symptoms. My head hurts so bad that many times I can’t think or organize a coherent thought.

Good luck to both of us.

3

Lisa,

I am so sorry that you are going through so much. Emmaline has great advice. Doing to much and getting therapy from people that dont know about Chiari can make you flair up and feel worse. I can tell you two things that help me and may be able to help you...actually three. Arnica cream rubbed on the sore muscles helps. You can do it anytime and a little goes a long way. Any health food store and even some supermarkets and drug stores carry it. I use Zomig for my headaches and it's really helped me over the years. You can ask your doctor about it. It's a migraine med and I only take a half . I couldn't get by without it. Lastly heat helps my neck and face muscles. I rub arnica on and then use a microwavable flax seed pack and lay down for a little bit and it really helps me feel better and loosens up my tight muscles.

You may want to ask your doctor for a Cine MRI to make sure your spinal fluid is flowing correctly. I hope you feel better.

Wendy

4

I am so sorry this is happening,my surgery is 9 months out and things are so much better now.There have been times that the symptoms seemed to return but I have found that mine are old symptoms that have been present all along,I think maybe there’s something else going on that was part of my former problems, I will return to the NS in Sept.There are people on this site that have discussed that there are other illnesses that are common in chiari patients,check out POTS and dysautomia?my spelling might be wrong.There’s a list of symptoms on the discussion page posted by Abby.I agree with Lisa,to stay away from the PTs just to see if your better without them if they are not one that knows about chiari,my surgeon didn’t recommend any therapy at all and I have done well.

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I'm sorry you're going through this Lisa, I can definitely understand. I had surgery Nov. 12th, 2013, and I too feel like my symptoms are coming back. I am terrified I will have to go through surgery again, the surgery was fine, but I developed chemical meningitis that lasted 2 1/2 months from the patch they sewed in.

I too have many of the symptoms you and Karla mentioned, I am hoping someone can chime in that has had to have the surgery again, and if this was the reason why. I scheduled an appt with my NS last Friday, so I will keep you updated.

Take care, I hope things get better for you! :)

Jen