Questions about Intra-Cranial Hypertension

Hi everyone,  I had my first lumbar-puncture yesterday.  I was scared to death---fortunately the procedure wasn't as bad as I thought it would be.

I saw my new neurologist early this past week.  After the exam she said that "...your symptoms could be from the CM, multiple sclerosis, B12 deficiency or some other neurological disease".   That was incredibly unhelpful!!  She really didn't want to order another test even though the MRI that was taken at a different facility was as she said "...unreadable...".     She said we could "...wait and see for a few months".  WHAT!

I don't like to sit and wait to see how much more disabled I can become.  I asked her what could be done for my CM.  She said nothing could be done about it.  I just really felt so invalidated!!  I just wanted to scream.  

Long story short she wrote an order for a LP with an opening pressure.  During the procedure I asked the doc what the pressure was----he said 31.  Is this normal?  Is it becuase I am obese?  

Here is what I am afraid will happen.  My doc will call on Monday to tell me that the opening pressure was insignificant and not to worry about it.  

I am so frustrated with doctors telling me "..oh alot of people have that, don't worry about it".  I mean I am just getting angry about it becuase I keep losing my mobility.  

What should I do?

thanks,  lois

[selmaS]

Hi Lois,

Normal range depends on the lab...I am not sure y labs vary the ranges, but this is true for many tests.

The following is available on the web:

Normal values typically range as follows:

Pressure: 70 - 180 mm H20
Appearance: clear, colorless
CSF total protein: 15 - 60 mg/100 mL
Gamma globulin: 3 - 12% of the total protein
CSF glucose: 50 - 80 mg/100 mL (or greater than 2/3 of blood sugar level)
CSF cell count: 0 - 5 white blood cells (all mononuclear), and no red blood cells
Chloride: 110 - 125 mEq/L
Note: mg/mL = milligrams per milliliter; mEq/L = milliequivalents per liter

Note: Normal value ranges may vary slightly among different laboratories. Talk to your doctor about the meaning of your specific test results.

"selma"

[rod44]

Hi Lois, I would imagine if you do have Intra-Cranial Hypertension then it will need to be investigated to find the cause. (25 is normal) I am not a doctor so I dont know how significantly high your pressure is or if it needs to be treated but because of the CM I should expect it would.  
From reading about Chiari it appears that their is a link with Intra-Cranial Hypertension. It would be wise to find an NS with CM experience.

Ray

[RedFlame]

Thanks Ray

[*Stormy*]

Hello and Welcome,

Yes, I agree with Ray...with the kind of answers you are getting from your current dr's I would be running in the direction of a Chiari specialist!!! Below is a link of some that other members here would recommend or have had good experiences with:

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460

Hopefully you will find that helpful.

As for your other question, I have heard that weight can affect inter-cranial pressure but with your Chiari seen on a MRI, I would suspect that would be more likely the culprit.

If your Dr does call and say that the pressure reading is insignificant...well then that just confirms that you need a new dr!! Plus, as far as NL (neurologists) go, they are not very helpful in dx and treating Chiari. That may have been why you got such a vague reply about everything...it is not in an NL field so you should be seeing a NS asap.

Do not wait and see...Chiari caused major mobility issues with me too...and mine was let go way longer than it should have been due to misdiagnosis..one after another... I progressed very quickly and it was scary. I have since had the surgery and recovered about 80% of my leg function back.

Good luck!
Carolyn

[RedFlame]

I will call and get the information tomorrow and find a new doctor.

As far as the opening pressure while lying down----I was told that 12-15 was the normal range.  Hopefully they won't attribute my symptoms to my weight.

Thanks for the encouragement.    lois

[shanmomof3]

Hi Lois! I definately think you should send your mri's to a chiari specialist! I had one dr that thought i had ptc or ih too because of my weight, but once i sent my records to dr. Heffez it was never mentioned again. Not saying that you dont have IH because it is possible to have IH and chiari, but i truly believe you need a new dr that doesn't say "Oh, a lot of people have that" Blessings ~ Shannon

[selmaS]

Hi Lois,

Normal range depends on the lab...I am not sure y labs vary the ranges, but this is true for many tests.

The following is available on the web:

Normal values typically range as follows:

Pressure: 70 - 180 mm H20
Appearance: clear, colorless
CSF total protein: 15 - 60 mg/100 mL
Gamma globulin: 3 - 12% of the total protein
CSF glucose: 50 - 80 mg/100 mL (or greater than 2/3 of blood sugar level)
CSF cell count: 0 - 5 white blood cells (all mononuclear), and no red blood cells
Chloride: 110 - 125 mEq/L
Note: mg/mL = milligrams per milliliter; mEq/L = milliequivalents per liter

Note: Normal value ranges may vary slightly among different laboratories. Talk to your doctor about the meaning of your specific test results.

"selma"

[RedFlame]

Thanks so much everyone, I am going to make sure that the neurologist gets this information tomorrow and then ask about a referral to a neuro surgeon.

I will keep you posted though----hopefully my opening pressure of 31 won't be too bad.

thanks again for the support

[selmaS]

Good Luck Lois at the NL appointment !!!

"selma"

[laratterman]

I thought it would be best to post this to you.  I have had correspondence from someone else with regard to IH and it was mentioned in the message that according to the the Dr's at TCI, acceptable opening pressure for someone with Chiari was 15.  Do you know anything about this?  I am trying to find something in print, but so I haven't come across something from them.

If anyone has any information, please let me know.  I have a feeling I may be facing the decision as to whether or I am going to have an LP.  I want as much info as possible before I make decisions on what to do about all this.

Thank you!  Blessings!

Lori

[RedFlame]

I researched this info last weekend and looked at several sources.  The readings will differ depending on how the test is taken ie-laying down, sitting up.   Also, there are two ways to measure it   Results from typical spinal tap laying dow:

For adults:
Normal pressure readings are generally below 200mm/H2O.  
Borderline high pressure readings are between 200-250mm/H2O.
Anything above 250mm/H2O is considered a high pressure

http://www.ihrfoundation.org/intracranial/hypertension/info/C72

hope this help,  lois

[selmaS]

Lori and Lois....u may find  different opening numbers as it is like most lab results it depends on the lab......so a general number may not be the same but should be in the neighborhood!

I have not had a LP, and the only info I found I have posted here and the last line does stress the diff labs will have a diff acceptable opening number.

"selma"