My fight with CIP
AnonymousDecember 23, 2008 at 3:06 pm
I’ve really seen very little discussion involving CIP in these forums. And I’d like to tell everyone my story and get some feedback from you guys. I apologize for the length in advance but I’ve been suffering for quite awhile.
I’m presently try to recover from what I’ve been told is a very unique neurological problem. It started a little over two years ago when I somehow contracted Streptococcus Pyogenes in my right lung and my loss of extremity movement about three weeks later after a second surgery to remove scar tissue from my lung. While in CCU I was also on a ventilator, dialysis as well as extensive medication.
My initial diagnosis given in the CCU was critical care myopathy since I did not show any loss of sensation. The only test done at this time other than and Asia test for sensation was an MRI to verify I did not have any spinal damage.
When I left the CCU after 11 weeks I want to an intensive rehab facility but very limited results occurred during the first eight weeks of treatment. At this time under my wife’s urging a neurologist was brought in for a consulate. After limited testing his diagnosis was CIDP and I went through a IVIG regime. Again limited results were seen so I was given a seven day regime of plasma phoresis. I ended up staying in acute rehab for about 12 weeks and my only major gain during that period of time was to regain sufficient jaw movement to be able to eat pureed foods.
After that I was transferred to a sub acute rehab center where I still am today. I have regained some use of all muscle groups but I’m still not strong enough to walk nor feed myself (although I am able to eat regular foods). I’m having PT and OT six days a week and aqua and hand therapy two days a week. My improvement has been frustratingly slow and I’m still not confident that I’ve received a correct diagnosis nor treatment regime.
I’ve been through four neurologists and my diagnosis has changed from CIDP to AMAN and now finally to CIP (critical illness polyneuropathy). The only additional diagnoses that has been done is several EMG’s and recently a series of blood tests.
Other than intense physical rehab including aquatic rehab and e-stem, I have received no treatments since the very early stages. What else has anyone else had done to help them recover?
AnonymousDecember 24, 2008 at 12:14 am
Hi there & welcome. It sounds like you have been through quite a bit over the last few years.
I’m not sure if anyone else has CIP. I did a quick Google search on it & found a very informative website. I was actually not familiar with it until I just read up on it.
Here is the link:
This is the abstract:
“The neuromuscular syndrome of acute limb and respiratory weakness that commonly accompanies patients with multi-organ failure and sepsis constitutes critical illness polyneuropathy. It is a major cause of difficulty in weaning off the patient from the ventilator after respiratory and cardiac causes have been excluded. It is usually an axonal motor-sensory polyneuropathy, and is usually associated with or accompanied with a coma producing septic encephalopathy. The neuropathy is usually not apparent until the patient’s encephalopathy has peaked, and may be noted only when the brain dysfunction is resolving. Patients usually have a protracted hospital course complicated by multi-organ failure and the systemic inflammatory response syndrome. Elevated serum glucose levels and reduced albumin are risk factors for nerve dysfunction, as is prolonged intensive care unit stay. Polyneuropathy may develop after only one week of the systemic inflammatory response syndrome, but the frequency tends to correlate with the duration of the severe illness.”
The text regarding treatment says this:
“Treatment is supportive, initially consisting of aggressive pulmonary hygiene and prevention of secondary complications of immobility such as skin breakdown, deep venous thrombosis and superimposed compressive neuropathies. Hypoalbuminemia and hyperglycaemia should be corrected. Some patients, particularly those with gram-negative sepsis, may benefit from intravenous immunoglobulins; yet widespread acceptance of this treatment awaits further supportive data., Long term treatment may consist of rehabilitation, assistive devices, and medication for neuropathic pain, if present. Recovery from critical illness polyneuropathy takes months to years and is often incomplete. Clinical deficits are present in 59% of survivors and electrophysiologic abnormalities in 95% of survivors followed upto 5 years.”
It seems that if this diagnosis is correct it’s just going to take time. It does sound like you are in a good facility & they are offering you a good regime. That is a very good thing!
Hopefully someone will post who knows more about this than I do. It might take a few days with it being the holidays though.
AnonymousDecember 24, 2008 at 12:10 pm
Thanks for your feedback. The information you sent is basically the same as I’ve found although it’s from a different source. I’m hoping somebody who’s had CIP will read my story and share their experiences with me. This is totally frustrating in so many ways that I’m pulling my hair out (which is hard to do since I’m bald anyway). It would be nice to hear from someone else who’s been through it and see if my recovery is paralleling their’s. It’s hard to get any feedback from my neurologists are anybody else in the medical profession. From what I’ve read CIP while unusual is not terribly rare so I would think medical professionals would have more information available.
Hope you and yours have a great holiday!
December 25, 2008 at 1:26 am
Sorry about your health crisis, I do not know anything about cip but would like to offer my prayers and courage for you to find answers to your questions.
Dawn Kevies mom
AnonymousDecember 25, 2008 at 5:08 am
I’m sorry I can’t contribute any advice either – I’d never heard of CIP until you mentioned it but I say let’s keep bringing this to the top in the hopes that someone will see it. It’s a busy time right now and many people may not be on the forum.
That being said – WOW, I am totally sympathetic to your situation – I think I’d rather have my CIDP than your CIP! It sounds exceedingly uncomfortable and inconvenient. You say you have not made much progress but have you gone downhill any since your acute crisis? If not that is at least a small blessing, and moving from pureed foods to solid foods is wonderful too. I still have to go back and forth, some days my jaws are not strong enough to chew solid foods. (lets hope they work out today!!!)
I hope you have a good day today Mark, I’ve been in the hospital over Christmas before and it’s a pretty lonely place to be. I’d sing you a little song but I’ve been told the world is a happier place if I just hum. 😉
Merry Christmas Mark!
AnonymousDecember 25, 2008 at 8:08 pm
I don’t know anything about CIP. Good that you have made some improvemet and can now eat regular food.
Your improvement may be slow but as long as you keep improving your going in the right direction. [/QUOTE]
I wish insurance companies saw it that way! Having to fight them every step of the way for coverage is getting very old. Now that I eventually fall under Medicare (since I’ve been on disability two years) it’s even becoming more of a problem.
AnonymousDecember 26, 2008 at 1:51 pm
Hi Mark, Sorry to hear you are going through soo much. Unfortunately the only other person I remember having any knowledge of CIP was DocDavid, and I’m sorry to say he passed away this year. You might be able to read the advice he had posted about CIP by doing a search of his past posts. Another place you might want to ask would be on the United Kingdom side of this site, I think there are some CIP survivors there also. You are in My Thoughts and Prayers for a faster recovery. Please stay in touch and keep us posted on everything, you are part of Our Family and we like to help and learn where we can.:)
AnonymousDecember 26, 2008 at 2:29 pm
Like everyone else here, I am sorry that you are having such a rough time.
Unfortunately for you, your disease is not one that we have much experience with. One of the problems with acronyms is that they are not precise. CIP is an acronym with at least two different meanings. One is for, as you already know, critical illness polyneuropathy. The other is for chronic inflammatory polyradiculoneuropathy. The second meaning is now more generally known as chronic inflammatory demyelinating polyneuropathy (in the US, the radiculo portion is usually left out, but implied; in the UK, it is often explicitly included). From what Kelly posted, your disease is largely axonal, whereas for most of us, the disease affects predominately the myelin sheath around the axons and then secondarily the axons.
That said, please feel free to be part of us. Much of what you will deal with is what we have dealt with and I am sure we can provide understanding and support.
Godspeed in your recovery,
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