Cerebral spinal pressure concerns, please help

Symptoms and Treatments
1

Hi all! Very concerned about the cerebral spinal pressure and pain I have in my temples and forehead. I always have pressure, but today hit me hard. It primarily is on my left side. I had alot of nausea too. My neurologist told me last Thurs. that "this can be normal". Somehow I don't feel reassured by this. The pain is so bad. I was in the fetal postion for hours today. I'm scared. The doctor mentioned that possibly there may be a slight leak in the dura. I see him again Nov. 1 and he said if I still have these symptoms, he'll do another MRI. He said that the dura can produce a small leak but the body usually heals it. Is this true? It's been 5 weeks since the surgery and I wish I was turning a corner. The pain and the pressure make my life so unpredictable. I started balance rehab therapy Monday and Tuesday. The exercises are ok on my body, but not my head. The strain on my brain is almost not worth it. My neck is improving. Still stiff, but alot better. I still get woozy when turning it, but better. My headaches and pain are alot worse after my surgery!!! I'm so disheartened. Please, if anyone out there could uplift me with some HOPE AND SOME ADVICE, that would great. I know this ordeal can take some time, but I would sure like to get back to my life, my beautiful children and husband. It's hard for them too. They see me day in a day out in pain. I try to be the tough Chiarian, but everyone has their weak moments.

Thanks for listening.

Christine XO

2

Oh Christine...so sorry to hear you are in so much pain! I am new here, and newly diagnosed, so I can't give you any advice. I hope that you find relief and that everything turns out to be nothing major. You are right, everyone has their weak moments, and you are entitled to them. Please try to stay positive (as it seems you are doing) and trust that this is just part of the healing process. Also, I'm sure your children and husband understand that you have been through something major and they just want you to get better, but it takes time to heal when something has been wrong for so long. Hugs to you girl and please keep us updated.

Ps...I wouldn't have been as strong and probably would be blowing up my Dr's phone. :-) But I'm trying to learn patience. Good luck!

3
  1. Christine, first of all I just want to say how sorry I am that you are feeling so bad! I have not had my surgery yet, scheduled for Oct. So I don't know if that is normal or not. I have read a lot of recovery stories, some good and some not so good. I have read some that had a leak, and it did build up pressure. I would recommend if the pain is that debilitating to go to the ER and demand a MRI now. If the NS is down playing it, then maybe its not as serious as it sounds to us. But only you know your body and if it's telling you something is wrong, then you should listen to it and get it checked. I would think five weeks post op you would start to feel better. Hang in there, and if you feel it's that bad get it checked before your Nov. appt. Good luck to you! I will keep you in my prayers!
4

Dear Christine.....

I can totally understand your fear and frustration....I went through it 3 yrs ago....I am glad you posted what you are going through....makes my brain think back to my early recovery!

Ok, here is what I remember....I left the hospital with a lovely parting gift...a cane!!! My balance was worse after surgery than before...Dizziness when I turned my head any which way, looked up or down....it was scarey and nerve wracking at the same time.

To this day..I cannot sit under a ceiling fan...gets me dizzy...family hates it..b/c we have a fan over the dining room table and they just cannot get it through their heads it makes me dizzy!!! The good news is that the dizziness when riding in a car, turning my head, ect...has gotten MUCH BETTER.

The way my NS explained it to me is something like this....."I am certain you have had diminished CSF flow for your entire adult life...and I wouldn't be surprised it was diminished for your entire life....so , it is going to take many mths for your body to adjust to the new flow of CSF"...Now, that made complete sense to me...though, it did not help on days when I was feeling as though I could vomit at any second, shaky when walking...bedroom is upstairs and coming down was so hard for me..my legs felt like they were jelly.

As far as the H/A's...they changed in nature after about 4mth or so.....Looking back, I am pretty sure the pain meds were giving me 'rebound H/A's...Once off the 'heavy hitters' I felt fairly well with the H/A's...To this day I struggle with H/A but not as severe as b4 surgery...I take Fiorocet now if I feel a H/A coming on...that seems to do the trick as long as I take it when it 1st comes on...I take Ibuphrophen (sp) for mild H/A's.

Thrilled you are going to PT for balance.....talk to the PT and tell them about your dizziness when moving....they may be able to give you some tips to weather this storm. Here are my tips that helped me...NEVER bend from the waste, do not put your head in the washing machine to switch the clothes!!! When showering, be sure to go slow, get a grab bar...they sell them at Lowes for 16.00 they are plastic and work by suction cups..I have one...great...and when you are washing and rinsing your hair try not to bend your head too far back...easier said than done...I had very short hair after surgery and for awhile I actually washed my hair in the kitchen sink.

Also...I am so bad about this one...still am...drink lots of water...and get proper nutrition.....I know...who the heck wants to eat when they are in agonizing pain??? English muffin with peanut butter was my friend!!!

Please know it will get better..but if you continue to feel this was..in my opinion...you should call your doc and be seen b4 NOV.

Hang in there and know we are here for you!!!!!

Love,

Lori

5

Thank you so much Marlena. I appreciate your words. You're very sweet and understanding. I just saw my neurologist last Thursday or I would be blowing up the phone with phone calls. You're so funny!! lol Trust me, if this becomes totally intolerable, I will be calling. Thanks again and we're all in this together. Glad to know I have so many wonderful friends on here to help pick me back up again when I feel like I'm falling.

Christine XXOO

Marlena Harmon said:

Oh Christine...so sorry to hear you are in so much pain! I am new here, and newly diagnosed, so I can't give you any advice. I hope that you find relief and that everything turns out to be nothing major. You are right, everyone has their weak moments, and you are entitled to them. Please try to stay positive (as it seems you are doing) and trust that this is just part of the healing process. Also, I'm sure your children and husband understand that you have been through something major and they just want you to get better, but it takes time to heal when something has been wrong for so long. Hugs to you girl and please keep us updated.

Ps...I wouldn't have been as strong and probably would be blowing up my Dr's phone. :-) But I'm trying to learn patience. Good luck!

6

Kay, thank you very much for your words. My NS and Neurologist both say that this can be normal and that it can last for wks to months, even a year. Saying it and living it are two different things. As I said to Marlena, I will call the Dr if it gets too bad and I will go to the ER if the pain gets too unbearable. The thing with the ER is that you would be surprised on many healthcare professionals in the ER don't know squat about Chiari or anything that goes along with it. Kinda makes you a little unsettled when you're there reaching out for help and they have to google your disorder...yikes!!

Good luck on your surgery in Oct. What is the exact date? I'll be thinking and praying for you. As I said in an earlier discussion, don't let my experiences effect your mindset. Everyone is different and will have different outcomes.

Christine XXOO


kay1990 said:

  1. Christine, first of all I just want to say how sorry I am that you are feeling so bad! I have not had my surgery yet, scheduled for Oct. So I don't know if that is normal or not. I have read a lot of recovery stories, some good and some not so good. I have read some that had a leak, and it did build up pressure. I would recommend if the pain is that debilitating to go to the ER and demand a MRI now. If the NS is down playing it, then maybe its not as serious as it sounds to us. But only you know your body and if it's telling you something is wrong, then you should listen to it and get it checked. I would think five weeks post op you would start to feel better. Hang in there, and if you feel it's that bad get it checked before your Nov. appt. Good luck to you! I will keep you in my prayers!
7

Wow, I don't know what to say, but thank you so much for sharing your story with me. I feel so validated. Everything you talked about is me. I can't believe you mentioned the ceiling fan. So funny! lol I just told my family the other day that I can't look up at that fan moving. It makes me very woozy and sick to my stomach!! People moving on the TV makes me aaaaaa too! Movement in general isn't fun.

I agree with what your dr said about the CSF, makes total sense. I also agree with you, it sure doesn't make the nausea or vomiting feel any better. The reassurance that "this is normal" has a double edged sword.

Thank you for all your advice as well. Sending my husband out later for that bar. I now just lean on the wall for balance. When I close my eyes to rinse my hair out, it's scary. I am trying to eat better. Saltines have been my friend for a while now. As far as water, I am trying to drink more of it. When I'm nauseous, water cramps me. But when I'm not, I drink as much of it as I can. I was told it's important to stay hydrated.

How are you feeling now Lori? Are you driving, shopping, etc? I want to know what good things I have to eventually look forward to.

Thank you again for sharing with me. I so appreciate it!! I don't feel well today again but you and the others have definitely uplifted my spirits.

Christine XXOO



lori said:

Dear Christine.....

I can totally understand your fear and frustration....I went through it 3 yrs ago....I am glad you posted what you are going through....makes my brain think back to my early recovery!

Ok, here is what I remember....I left the hospital with a lovely parting gift...a cane!!! My balance was worse after surgery than before...Dizziness when I turned my head any which way, looked up or down....it was scarey and nerve wracking at the same time.

To this day..I cannot sit under a ceiling fan...gets me dizzy...family hates it..b/c we have a fan over the dining room table and they just cannot get it through their heads it makes me dizzy!!! The good news is that the dizziness when riding in a car, turning my head, ect...has gotten MUCH BETTER.

The way my NS explained it to me is something like this....."I am certain you have had diminished CSF flow for your entire adult life...and I wouldn't be surprised it was diminished for your entire life....so , it is going to take many mths for your body to adjust to the new flow of CSF"...Now, that made complete sense to me...though, it did not help on days when I was feeling as though I could vomit at any second, shaky when walking...bedroom is upstairs and coming down was so hard for me..my legs felt like they were jelly.

As far as the H/A's...they changed in nature after about 4mth or so.....Looking back, I am pretty sure the pain meds were giving me 'rebound H/A's...Once off the 'heavy hitters' I felt fairly well with the H/A's...To this day I struggle with H/A but not as severe as b4 surgery...I take Fiorocet now if I feel a H/A coming on...that seems to do the trick as long as I take it when it 1st comes on...I take Ibuphrophen (sp) for mild H/A's.

Thrilled you are going to PT for balance.....talk to the PT and tell them about your dizziness when moving....they may be able to give you some tips to weather this storm. Here are my tips that helped me...NEVER bend from the waste, do not put your head in the washing machine to switch the clothes!!! When showering, be sure to go slow, get a grab bar...they sell them at Lowes for 16.00 they are plastic and work by suction cups..I have one...great...and when you are washing and rinsing your hair try not to bend your head too far back...easier said than done...I had very short hair after surgery and for awhile I actually washed my hair in the kitchen sink.

Also...I am so bad about this one...still am...drink lots of water...and get proper nutrition.....I know...who the heck wants to eat when they are in agonizing pain??? English muffin with peanut butter was my friend!!!

Please know it will get better..but if you continue to feel this was..in my opinion...you should call your doc and be seen b4 NOV.

Hang in there and know we are here for you!!!!!

Love,

Lori

8

Christine....

You are gonna hate me for saying this..BUT...you are basically a 'fresh post-op'...TIME TAKES TIME!!!! Oh, Lord, how I hated hearing that in early recovery!!! So..pls don't hate me!!LOL

Little by little I noticed small things..good things...like , while riding in the car ..I no longer got car-sick..fearing each and every turn....then I noticed I wasn't walking as lopsided as I had been, tripping over my own two feet....after 2 mths no more cane..(unfortunately, I am having balance issues again..but no as bad)...After about 2 mths or so I noticed the H/A's were no so severe....I never got those crazy heart palpations that came out of the blue since surgery..of course, if my cage is rattled my heart THUMPS!!!LOL...Get this one..I have not been on an anti-biotic for chest infections since surgery..where b4 every doc told me it was b/c i smoked..we all know it is awful to smoke..but i still do and haven't had bronchitis nor pnemonea since....weird huh???

There is light at the end of this nasty tunnel and it is NOT an on coming train!!!LOL....I am so glad you shared what you are going through..you CANNOT keep this in..that will do you in emotionally..in my opinion....so keep us posted ...I mean it..daily, hrly...anytime...this is such a tough time for you..we are here for you!!!!

PS: I did not drive for many mths....still do not drive the Thru Way.

Love,

Lori

9

Christine

I'm sorry to hear you are having a rough time. I know this stuff is hard and we just want it to be o.k., especially after the surgery. When you are going through it, it feel like it will never end or get better, but it does. Getting better is a process and it takes awhile. I had my surgery in Jul 2010. I slept most of the time for the first five weeks and it was really about five months before I got up one morning and felt like life was good......you'll get there. I know I'm fortunate that I didn't have the headaches after the surgery. My doctor didn't open the dura and I think that made a difference. I have had them before and I know they are hard to deal with, so I hope they go away soon. After my surgery I did water therapy; it really helped me get my balance and my strength back. It is so much easier on the body to exercise in the water. In the water I don't feel the pull and the strain on my neck and head like I did on "land". I had cervical fusion because in addition to Chiari I had basilar invagination. So my neck is stiff and I can't handle a lot of strain on it. I still can't use the computer very much or my neck will bother me. The water therapy works for me. You might try that if there is a therapy pool near you. I still do maintenance therapy even though I am over a year post opt and would highly recommend it. My balance has improved so much. I hope you feel better soon. I can understand wanting to get back to the needs of the husband and the children but it is so important that you take the time to rest and give your body time to recover. My children are grown and I didn't have that worry to deal with....my husband was able to concentrate on just helping me and we were so lucky that our friends cooked meals for us. Hopefully you have some people in your life who can make it easier for you too so that you won't have to do too much too soon. You and your family are in my prayers as you go through this difficult time.

Hugs

Shirley