Issues with Kaiser and Official Diagnosis

Hello Everyone,

My wife is currently going through a battle for an official diagnosis because Kaiser here in Nothern California has no idea what she has. She loses fine motor skills in her hands, has weakness in her legs with shooting pains down both sides, loses the ability to walk at times and has numbness and tingling all the way down to her hands and toes. About a week and a half ago she had a sudden and severe stabbing pain in her back which has now left her without the ability to walk. After 4 days in a Kaiser hospital "normal" MRIs she was discharged and left to seek physical therapy because they say she has a back injury. A thoracic MRI revealed 2 hemangiomas (4mm and 6mm) in her spinal column but the radiologist reports said that what she has is "normal".

She has been told by every doctor and neurologist that she should not be concerned and that her MRI results are completely normal. On top of that she is told that her acute lower back pain is the result of a degenerative disc and she should rest. She has had M.S. like symptoms for a year now and we were both in the process of accepting that she would be eventually diagnosed with M.S. and live out her life as best she could. Right now she is extremely scared because noone can officially tell her what she has and move on with treatment. She is a teacher and mother of four and her life is totally shattered by this.

I have consulted with the neurosurgeons at Stanford hospital (Dr. Park) and they are willing to look at her after reviewing the MRIs (thank god). Can anyone help us deal with Kaiser here in Northern California or point us in the right direction so we can force them to refer us to Stanford for real help? Unfortunately we cannot afford Stanford medical treatment at this time but if it means we go into debt to get her help, then by god we will.

I am thankful there is a site like this for people to turn to and thank you in advance for any help.

Beau

Beau,

Definitely you should be able to ask Dr. Kaiser for a second opinion. If not, your wife's regular doctor may be willing to do it. Most doctors are pretty open and willing to have a patient get other opinions. Just be prepared for whatever they say as well. It may be something totally different. Then you'll have to decide what to do, especially if Dr. Park is a ways away.

Not knowing and not being able to move forward with a plan or diagnosis must be difficult.

Good luck!

Beau,

If they won't allow you to go to Dr. Park @ Stanford http://neurosurgery.stanford.edu/patient_care/neurospine.html or Dr. Steinberg @ Stanford http://med.stanford.edu/profiles/Gary_Steinberg/ , then I hope they'll allow Dr. Lewis Hou http://dura.stanford.edu/LewisHou.html of Sacramento Kaiser to consult or make a recommendation for a 2nd opinion.

So sorry you have to struggle with the hospital when your wife's in need of answers and care.

Take care and keep us updated,

Patti

Today we had an appointment with another Neurologist in Redwood City (Kaiser) and they are still convinced that what they are seeing on the MRI would not show the symptoms she is experiencing. They say that the masses discovered on the MRI are benign Hemangiomas and are definitely not AVMs of the spine. I have heard that many doctors have misdiagnosed hemangiomas as such instead of AVMs and because of all of her symptoms we are left to believe this is still the case. The Dr. today believed she could have Fibromyalgia so we are attempting medication to see if that helps her function. We are willing to try anything at this point but we are still aggressively pursuing a diagnosis at Stanford with their experts.

We sent my wife's MRIs and medical reports to them for review and they contacted us for a visit. We are pushing for an immediate appointment considering the circumstances but I am unclear exactly when the appointment will be. If they rule out an AVM then we will have to move on, but it is very difficult for a 31 year old woman to live without the ability to walk and without a cause.

Thank you for all the help and opinions as we try and find a way out of this.

Beau,

Do you know if the hemangiomas they're referring to as "benign" are actually cavernous hemangiomas?

If you haven't done so already, you can obtain copies of your wife's MRI films and send them to Stanford for their opinion.

It's exhausting, but don't give up. Keep pushing forward until you and your wife are satisfied and comfortable with her diagnosis and plan.

Patti

The hemangiomas were said to be benign and totally harmless. Every Neurologist we have spoken to (and radiologist) has said that these are very common and normal things that they see in spinal MRIs. I have heard the exact opposite from many people but it is tough for us to question these DRs with no medical background. To us it seems odd that her symptoms follow what the MRI is revealing and no other cause can be found for her neurological and physical issues.

Last week I drove to Stanford and hand delivered her records to their Neurosurgery department and they have agreed to bring in my wife for a visit (Dr. Park). I am not sure what this means but they have a review board that looks at all of the MRIs and medical records before even allowing a visit. I am hoping this is a good sign and that they may have recognized something that Kaiser DRs are ignoring or cant see based on their experience.

Next Thursday is our Stanford visit and then the Friday after we meet again with the Kaiser Neurologist in Redwood City.

Hopefully we will have a diagnosis by the end of next week but until then we will keep fighting.

I know what you are goig through is very upsetting!! I have been going through the same things!! I had a Dr. tell me that ALL of my symptoms are in my head. Went for a 2nd opinion, he went based on what the 1st Dr. said. Oh yeah, I have a phyciatrist, so I must be crazy! It is all in my head. Had nothing to do with the AVM or the cyst they found that I am having symptoms… I need to find a Dr. that will give me an opinion based on what he has found, not what another Dr. told him!

no Dr.s can help in nor cal. i know… been there done that (on my own) but i can help.

  Did your wife have an MRI of her head done yet?   I would ask for it.  Don't give up (and I don't think you would).  Doctors aren't gods, they only think they are. Ha HA.   I've been misdiagnosed  more times than I can remember.   Until I found doctors who could help me.    Keep us posted.   My prayers are with you.

they fixed me for free paid for airfair and had a TEAM working on me .

Sponsor:

National Institute of Neurological Disorders and Stroke (NINDS)
Information provided by: National Institutes of Health Clinical Center (CC)
ClinicalTrials.gov Identifier:

NCT00060541

Hi Ben,

We have had an MRI done of her head, neck, lower back and thoracic and the only thing of concern that showed up were the two hemangiomas in the thoracic region. All doctors have dismissed those as totally harmless and irrelevant to her condition.

Thanks for the reply and the good wishes.

Ben Morrell said:

Did your wife have an MRI of her head done yet? I would ask for it. Don't give up (and I don't think you would). Doctors aren't gods, they only think they are. Ha HA. I've been misdiagnosed more times than I can remember. Until I found doctors who could help me. Keep us posted. My prayers are with you.

Update:

This week has been busy for us as we went to two different Neuroscience locations, with Stanford on Thursday and Kaiser in Redwood City on Friday. The Stanford visit was short but informative and probably gave us the best feeling so far out of any doctor we have talked to. Dr. Park is a spinal neurosurgeon at Stanford and took some time to review her MRIs of the thoracic region and said definitively that her hemangiomas are not related to her condition and that there has to be something else causing her to weakness and inability to walk (and other symptoms). Basically he said this is not an AVM and that we need to see their Neuro-muscular specialist for follow up to rule out M.S. and other possibilities. We are scheduling a meeting with Dr. Soo at Stanford with hopes we can get a diagnosis.

The Kaiser visit was just as horrible as every other Kaiser specialist we have seen in Northern California, because after he did a Nerve Conduction test, he dismissed her as possibly having Fibromyalgia and said "I hope the medication works and have a nice weekend". I could never imagine a group of doctors treating someone with less respect and care than the doctors and specialists at Kaiser have. It truly has been an eye opening experience dealing with them. It seems as though anything outside of their normal scope doesn't warrant further investigation or ongoing analysis.

Now we are totally back to where we started with my wife not being able to walk without a walker and still showing all of the other neurological symptoms in her arms, hands, legs and feet. Right now I guess we have been shut down as far as this being an AVM with all doctors saying what she has is totally benign. We will continue to pursue other neurological issues like M.S. until someone will help her or at least give her a diagnosis.

Thank you to everyone on the board who has responded with well wishes and advice for us during this troubling time for our family. If we get down the road of an AVM again, I am sure I will be back here asking for the help of all the good people once again.

Take Care and best wishes to everyone.

Beau Beatty

Beau,   Whether or not your wifes avm has anything to do with the problems that she is having.  Please keep us informed and up to date of how she is doing, please.    I've been praying for you and your wife, and I will continue to do so.

Ask to see dr sheridan at kaiser redwood ciy
He did my surgery

I had almost the same thing. They could not be sure
What i had until they got it out. It was a cavernous
Avm. Or cavernoma. See dr Sheridan@kaiser redwood city. He suggested
Surgery right away. If not there UCSF on parnassus st in sf

Doug,
It's great to hear of your AVM & CM expert @ Kaiser.
You might be interested in our sub-group for cavernoma's, also known as cavernous malformations @ http://www.avmsurvivors.org/group/cavernousmalformationsupportnetwork.
Best wishes.