Neck weakness

General
1

I had my decompression surgery 11/13. I had aseptic meningitis in the hospital and from day 1 I felt as though there was something wrong on the left side due to numbness and pain. At 3 1/2 weeks I developed a pseudomeningocele. By the time I went to PT at 6 weeks, the muscles only on my left side atrophied. I developed occipital neuralgia on that side and I’m still having problems holding up my head without the muscles on that side of my head spasming which then cause the nerve pain. I’m having to use a soft collar to support or be in a chair with a high back most of the time.

Has anyone else had this complication? I thought I read a feed where someone’s muscles were not attached properly after surgery but I can’t find it again to message them.

I’m at my whits end. It’s been 5 months, I have to go back to work, am on tons of Meds just to function. I am hoping to talk one of my docs into doing an MRI but my NS is an $&&!

2

Had surgery and I still hv the same neck problems. Sorry to tell you that. But now with my constant neck pain and strain holding my head up and my headaches I feel worse than before surgery. Best of luck to yoy

3

I am so sorry to hear that you are still having so many problems. We have talked about this before and as you know I have some of the same issues, but not all.

I am having a cat scan tomorrow and seeing the NS tomorrow. I am hoping the pseudomeningocele has either gone down or gone away. It does not feel puffy any more on the left side. My bigger issue is the occipital nerve discomfort as I am sure that I have nerve damage from the surgery. I don't seem to have the atrophy that you have, but the numbness/tingling/pain just about drive me crazy. It is constant. I cannot feel anything on the left side of my head. Washing and drying my hair in that area, is so uncomfortable. I feel so out of whack when I am done I have to just sit and do nothing for awhile.

It has been 6 months since my surgery and the list of things that are worse or the same or new is much longer than the list of things that are better!

4

Good news on the pseudomeningocele. It is resolving and is down to 1 cm from 2 cm. This is an answer to many, many prayers.

My list of issues and the answers I received:

1. Numbness/tingling/discomfort (back left side of head) - He said it is not uncommon for the occipital nerve to get irritated with this type of surgery. He feels that will get better with time. He would be hesitant to do a block unless pain is the primary issue there instead of numbness/tingling.

2. Continued dizziness/vertigo - He had hoped for an improvement by now, but said "it has only been 6 months, give it more time"???? Also suggested vestibular rehab. I tried this twice before surgery in the past 12 yrs. that I have had this issue,with no luck . Also, had I been to an ENT??? Hello, I was mis-diagnosed with Meniere's disease for 12 yrs. and have been to every ENT and Oto-neurologist in Pittsburgh, even went to the Cleveland Clinic. His response - "oh yeah, that's right."

3. Neck weakness/pain - He said that now pseudo is resolving I can resume PT. Also, I can get a Cervical MRI. I just had one a year ago, which showed 5 bulging discs (once again,look in my chart???). I told him it is weakness, and the pain is just from holding it up throughout the day. I do not have radicular symptoms (numbness or tingling down in to arms or hand), so I don't think the bulging discs are worse.

He asked me if I had returned to work as a Physical Therapist Assistant (which I stopped doing in July 2011). I told him there is no way I could do my job. I still get so wiped out doing things around the house. The fatigue that all of the above issues cause is constant.

Final remarks - He is happy that my headache is basically gone (believe me so am I). Fatigue is a concern - and have I ever been checked for fibromyalgia? In regards to everything else, give it time. And, unfortunately, the surgery itself can cause some issues (neuralgia). See you in 6 months with a repeated cat scan.

I left there with very mixed emotions. So happy the pseudo is on its way out, but sad that the other issues, which are debilitating when combined, may get better or may not.

5

Yeah on the Pseudo, Im just assuming that mine is better since no one bothered to recheck…..and I don't feel that crappy feeling anymore.

I have a feeling that the upper left side of my head will be numb forever…..sometimes nerves improve SLOWLY, but often if damaged, you are stuck with the numbness. Right now I would take just numb over burning pain.

Id let him MRI you….make sure everything is attached and that you don't have any new cervical instability from the surgery. Im PRAYING I can talk my very stubborn doctors into ordering one for me next week….I KNOW it is going to be a fight.

Have you looked at things like anemia, thyroid….other causes for the fatigue. I have fatigue, but I can guarantee you it all the crap I'm taking to manage my symptoms that are making me this way….and I know you don't take much so maybe other non-chiari causes??

Maybe that 1cm pseudo is still pushing on something to make you dizzy??? hmmmmmmmmm….poo :(


BigD821 said:

Good news on the pseudomeningocele. It is resolving and is down to 1 cm from 2 cm. This is an answer to many, many prayers.

My list of issues and the answers I received:

1. Numbness/tingling/discomfort (back left side of head) - He said it is not uncommon for the occipital nerve to get irritated with this type of surgery. He feels that will get better with time. He would be hesitant to do a block unless pain is the primary issue there instead of numbness/tingling.

2. Continued dizziness/vertigo - He had hoped for an improvement by now, but said "it has only been 6 months, give it more time"???? Also suggested vestibular rehab. I tried this twice before surgery in the past 12 yrs. that I have had this issue,with no luck . Also, had I been to an ENT??? Hello, I was mis-diagnosed with Meniere's disease for 12 yrs. and have been to every ENT and Oto-neurologist in Pittsburgh, even went to the Cleveland Clinic. His response - "oh yeah, that's right."

3. Neck weakness/pain - He said that now pseudo is resolving I can resume PT. Also, I can get a Cervical MRI. I just had one a year ago, which showed 5 bulging discs (once again,look in my chart???). I told him it is weakness, and the pain is just from holding it up throughout the day. I do not have radicular symptoms (numbness or tingling down in to arms or hand), so I don't think the bulging discs are worse.

He asked me if I had returned to work as a Physical Therapist Assistant (which I stopped doing in July 2011). I told him there is no way I could do my job. I still get so wiped out doing things around the house. The fatigue that all of the above issues cause is constant.

Final remarks - He is happy that my headache is basically gone (believe me so am I). Fatigue is a concern - and have I ever been checked for fibromyalgia? In regards to everything else, give it time. And, unfortunately, the surgery itself can cause some issues (neuralgia). See you in 6 months with a repeated cat scan.

I left there with very mixed emotions. So happy the pseudo is on its way out, but sad that the other issues, which are debilitating when combined, may get better or may not.

6

Hi Sue,

My PCP has been very thorough in investigating the fatigue issue since it has been going on so long. I don't have anemia, but had a blood disorder in the past (ITP) and had a splenectomy yrs. ago. Also, I have a MTHFR mutation (1 each of both types). Since you are a P.A. - you probably know what this is. And ...... I have a thyroid binding globulin disorder. This is probably inherited, but there is no treatment. I have been to 2 Endocrinologist and my TSH is normal, but my T3 & T4 labs look out of whack, but I have plenty for Free T3 & T4, so it is not an issue. My PCP said that I am a medical anomaly. I have so many strange things wrong with me.

I think the fatigue comes from the dizziness/vertigo just wiping me out and also from the meds. I take Klonopin and they just increased my Effexor XR from 37.5 to 75 mg. My body does not metabolize medication well.

Since I have had the same dizziness/vertigo issues that I have had for 12 yrs., they do not feel the small pseudo is contributing to this.

Good luck with your appt. Please let me know how it goes.

7

I am new here and have suffered all my life. I am 59 now. I read all this from everyone and I am SCARED. I do not want any kind of surgery---all seem to create new problems, new issues, new pain. I hurt for you! I have been through similar cervical issue without surgery! They put me in the forbidden traction! I am crying to see what everyone has gone through. I am in EXTREME pain, but the horrible pain seems to be better (for me) than what everyone is going through AFTER treatment! WHY are there no EXPERT PHYSICIANS? Seems we patient/victims have more info. than the docs. I am scared and very sad.

8

Thank you all who prayed for my appointment today! It was a tough appointment. I told them my issues and the doctor said "No" to getting a scan done. We talked more and he still said no…..said that what I was going through was "normal" for people who have the back of the neck cut open…..NORMAL? no, this is not normal. He said that my previous scan (CT) was normal…..I said to him, there was a fluid accumulation seen on the CT to which he said that was normal after surgery. Hello…I had a pseudomeningocele…That is not normal. Yet he said no again.

Feeling defeated, I finally in a very kind and considerate manner told him that throughout this journey, I felt dismissed and not listened to. I have been complaining of my left side being a problem since day one. I told him that I had felt abandoned by him earlier and that I did not feel that he gave me the consideration that I too am a medical provider, a colleague. He then said no again, so I put my jacket (which has our hospital logo on it) on and told him fine (and Im sure the look on my face was rather harsh)…..well, he softened….. He said that he did not want me to feel unheard and that he did not think a scan would show anything, that he would have a hard time giving a reason for it (really???) but he would order it if it would give me peace. I told him it would. I thanked him and told him that I appreciated it.

So, now I wait for the scan……...

9

I'm glad that you were more forceful in your discussion with him this time. It's like because they are the specialist they know exactly what's happening inside our bodies. I wonder if the oath "do no harm" is still in a doctors mission statement - it must just be for physical not emotional.