surgery questions 3 level fusion w/chiari

[tattooer601]

Hello everyone,
  I was a member of this board SN dermagrfx...
    I've been DX with chiari 1 malformation almost 3 years ago.
   Fast forward
My neurosurgeon did a 5-6 level cervical fusion,in hopes to eliminate the increased symptoms at the time.
   Well no cigar,for around 7 months I tried to work,I missed more than went because of this in thence pain...
  After that I started going down hill fast,it was evident that if I continued my arms legs wwhere losing function,aside from constant head pain.
  Catching up to these days...
I have 3 ruptured disc in my neck,that a neurologist and neurosurgeon have DX and this seems to be the main cause of my CONSTANT HEADPAIN.
   I should be getting scheduled for a trip level discectomy, in hopes to improve quality of life for me :-)
   I have been bed bound for a year,its terrible...I walk with a cane,only to the restroom...etc Dr. Appt....so on.
   Can't ride in a car without crying in agony for 3 days afterwards...
  Work....I miss tattooing so badly and don't know if I will be able to go back...
   Has anyone had this much cervical disc issue resolved by surgery and had improved quality of life chiari wise?
   I whisper to speak because the vibration of my own voice increases my head paid.
   Much like moving,cough,laugh,walk slowly,
I can't handle light in my right eye.....
The list goes on,my heart and soul need any support you guys could offer..Russell
  

[selmaS]

  sending good vibes ~~~~~ ur way so u get that good news  : )

[tattooer601]

Holding tight to a pillow, praying for good news today....

[tattooer601]

Thanks for understanding....
   Cool tattoo your niece got.
God bless all that struggle please pray for me.
    Please pray for me.....please

[linnielou232]

I heart tear's up reading your story and what you are going through.  I just went to the PC Dr yesterday because of depression and anxiety.  Dealing with Chairi isn't easy and hard for those of us who Love to work to understand.  I am in the same position as Selma.  I thought I would have my decompression surgery June 09 and be back to work in Sept.  but life had different plans for me also.  I say this by experience.  We can't set ourselves up for disappointment.  I learned the hard way because I now can no longer work recommmeded by my NS which was hard for me to process because I loved my job that I had for 23 yrs.  but we do what is best for us and our families.  Please just take one day at a time, and God will only give us what we can handle.  "We are Strong".  You mentioning being a tatoo artist sounds so cool.  My niece just turned 18 yesterday and went and got her 1st.  She has asthma and she had.  "I can do all things through Jesus who strenghten me". Phil 4:13.  We are stonger than what we realize and wanted to let you know I have you in my prayers for a stonger, better tomorrow.
Linda :)

[tattooer601]

Thank you Selma....
   I'll do what I can to find out..
Eds,
My mother in law has been a lab tech for
27 years I wish it was  testable by blood.
    She runs the lab @ the best hospital around.....
  

[selmaS]

  IBS is an EDS symptom.....and I do not know ur Dr and I am not one, but I  do know those that have EDS and it is not recognized b4 surgery it can affect how u feel and heal post op.....I am only saying this to optimize ur healing process.

[tattooer601]

Thanks Selma :-)
   After you hold on so long it gets tiring to continue.
   This past year stuck in bed has tried my nerves,broken my spirit and shattered my self confidence...
  However the upshot is the voc-rehab worker said they receive funds today and that she would call with a surgery date....
   My hopes get high,then dropped to danged much...
  I was praying she'd call,my wife called and left her secretary a message...
   Maybe she will call tomorrow GOD willing...,..
    
  About the eds,
My PCP said not wise to chart the rynaulds
    He explained the rynaldd could be from not being able to exercise.,...etc
  Causing cardiovascular weakness.
    Also he and I ate afraid to chart new things this close to surgery, as I may be turned down for the financial aid..
  I've developed ibs aswell and am trying to cope with that aswell..
     Ya know I believe any one would be in despair under this much pain and stress.

BTW,my neurosurgeon used strips for closure last surgery and I healed good skin Wise....thanks agsin,......russell

[selmaS]

  It is very possible that ur bi-polar issues r Chiari related...just wanted u to know...and until u complete the healing cycle u may feel like u may never be able to do things again....but give urself more time....and make sure u do not have related conditions that may slow ur healing....

It is going on 5 yrs since I worked and I know what that feels like as my job was where our medical coverage came from...life ins etc....and as time goes I am finding I can do dome things but on my own time....( I do have other issues) and so many have gone back to work, it may be a different field...but u will find ur path....it may look and feel different for a while, but it is there for u to follow : )

[tattooer601]

Thanks for you guys support...
  Chiari seems like a life thief.

Since being diagnosed I have gone down hill in the past few years...
  I'm bipolar DX @ 24 for almost 10 years I was able to cope with life with extreme anxiety, and insomnia.
  
  chiari is tough on the heart/soul.
Since my DX I have had the 5-6 level surgery,a fee months of fighting to try to keep working...
     I have no clue if after this triple discectomy, I don't know if I'll be able to work...I was a tattoo artist I worked hard and saved all my money to open my own studio... only to find I have chiari......sad so sad so sad...to me.
  I supported my family never more,we struggled a lot.... now trying to beg for enough money to try to afford our next meal..  seems so unfair.
   I just can't know that I could work again....
  Terrible to me.....thanks for caring
  

[selmaS]

  Hi here is a list of some symptoms for those with EDS,....not all with EDS will have all of these issues as there r diff types of EDS, but it is a related condition to Chiari.,

It is not a blood test, but a Beighton Score test and sometimes a skin biopsy to see which type-

Signs and symptoms



Individual with EDS displaying hypermobile joints


Individual with EDS displaying skin hyperelasticity
Signs vary widely based on which type of EDS the patient has. In each case, however, the signs are ultimately due to faulty or reduced amounts of collagen. EDS typically affects the joints, skin, and blood vessels. Following is a list of major signs and symptoms.
Musculoskeletal:
Hyper-flexible joints (It is possible to be very flexible or have "double joints", however, this is not the same as EDS.)
Unstable joints that are prone to: sprain, dislocation, subluxation and hyperextension[5]
Early onset of advanced osteoarthritis[6]
Chronic degenerative joint disease[6]
Swan neck deformity of the fingers[7]
Muscle fatigue that increases with use
Weak muscle tone (hypotonia) in infancy, which can delay the development of gross motor skills such as sitting, standing, and walking
Osteopenia (low bone density)
Stretchy ligaments and tendons
Tearing of tendons or muscles[8]
Deformities of the spine, such as: Scoliosis (curvature of the spine), Kyphosis (a thoracic hump), Tethered spinal cord syndrome, Occipitoatlantoaxial hypermobility[9]
Myalgia (muscle pain) and arthralgia (joint pain),[10] which may be severe
Skin:
Stretchy skin with a velvety texture
Fragile skin that tears easily[6]
Easy bruising, which can be severe
Abnormal wound healing and scar formation, leading to widened atrophic scars
Redundant skin folds[6]
Molluscoid pseudotumors,[11] especially on pressure points
Subcutaneous spheroids[11]
Fatty growths on forearms or shins
Angioplasia
Cardiovascular:
Fragile blood vessels with tendency towards aneurysm including abdominal aortic aneurysm
Life-threatening carotid-cavernous fistula
Unpredictable rupture of medium-sized arteries, especially cerebral arterial rupture
Valvular heart disease (such as mitral valve prolapse, which creates an increased risk for infective endocarditis during surgery, as well as possibly progressing to a life-threatening degree of severity of the prognosis of mitral valve prolapse)[12]
Postural Orthostatic Tachycardia Syndrome P.O.T.S.
Orthostatic intolerance, theoretically caused by excessive distension of veins (upright posture causes blood pooling in lower body, leading to a 44-60% decrease in cerebral blood flow velocity
Dilation and/or rupture of ascending aorta[13]
Cystic medial necrosis
Varicose veins
Vascular skin conditions: Raynaud's phenomenon, Livedo reticularis
(info from wikipedia)

Bcuz the skin is fragile we have more scarring and tend to heal slower then most,...and infection can be a higher risk when bringing in foreign matter...such as in a dura patch made from ne but our own skin.....


I was Dx;'d with Raynauds yrs ago, and when I saw my NL and NS I was told it is Raynauds Phenomenon....and it is related to EDS which I have...I had no idea.....

So bcuz of infection and we r prone to rejection of foreign matter it is best to know b4 surgery so ur Dr can use the proper closure...glue and sterri strips not staples that may tear ur skin.....and also when a patch is needed they can harvest it from u.

Hope this helps

[tattooer601]

Thanks for the support...

Eds
   Is there a blood test for this?I seem to rember Selma mentioning one.
  What is the common connection between Rynaulds and EDS?
    
   If eds is something to be concerned with prior to surgery....
   Could someone please explain?..,. thanks again everyone,I'm past suffering I am tormented by this, terribly mid understood disorder.....russell

[cash242]

sounds very logical and am sorry for all of your pain. I think you have to narrow things out and you have to have your neck done no matter what so good first step. I hope it offers you relief and if not then you have a next step.  Keep us posted.

[selmaS]

  Hi as cash mentioned it could be instability and it may help...but since u also mentioned Raynauds u most likely have Ehlers-Danlos and u will want to know b4 u have ne surgery as it can affect how u  feel and heal.

  EDS is Chiari related and this is y so many r told it is not Chiari that the symptoms r from, but there r so many related conditions that can be causing them,...only a well experienced Chiari NS can help u figure this out.....


Keep in mind EDS is a connective tissue disorder ...these tissue help hold the disks in place, when there is a compromise they can not hold us together like they should and then we end up with bulging disks.

I do not know if there r EDS specialists in ur area...but that is where u want to look.....

I pray u find relief soon <3

[tattooer601]

   Ya know in my mind and heart I believe a bunch of my symptoms ate 100%
Chiari.....however it seems to me that its possible to have this much neck issues and maybe increase the chiari symptoms.
   One other thing I have no money this is state funded in hopes that I may work again.I pray they are right..

I suppose I'm looking at things like this....
If they repair the disc,and I recuperate, and the symptoms remain or return...
    This should make it obvious that my symptoms are CHIARI...
   does this sound logical?
  I'm in need so bad if this helps 20 percent
   I need that relief UA know?
Thanks to all that can offer opinions....
  

[cash242]

I had decompression surgery and then c5c6 fused which did help but the pain your describing was what I had from the chiari vs cervical instability. The pressure headaches where definetly chiari all of those went away for me after decompression. I still have headaches from occipital neuralgia. Hope that helped and best of luck.

[tattooer601]

  I also recently DX with renaulds?
    I don't know to worry or not about that,at least its not causing me extreme pain all the time....wanna cry,for some reason it helps a little with head pressure?